....for the first time in his life.
Fevers started on Thursday, and had progressed to 102degrees by Friday. He had his IV iron on Friday, which he seemed to tolerate. We requested he get IV fluids after because of our concern for dehydration due to his decreased intake and fevers, his doctors agreed. The fluids brought down his fever enough that day but he wouldn't drink. I call and check in with his doctors and we feel the IV fluids should have been enough to help him, as long as he drinks... Through the night he drinks ~6oz, it was enough for him to perk up a bit Saturday morning, so we hope we are on the upside. He seems to be improving through Saturday morning but by late Saturday afternoon he is declining, higher fevers are returning, he is not drinking, and becoming very clingy and whiny. He barely drank 20oz all day. That night, he had difficulty sleeping (thank goodness for strong arms of daddy!), and Sunday was clearly ill- no playing, no smiles, barely drinking, no sleeping....things are compounding and our worry for him is multiplying. We've seen him in this place before and it is hard to not know how to help him, or how much worse it is going to get before he finally gets better.
The exact mechanisms of his illness are not well known or understood, so the "typical quickly becomes the atypical" (wise words from another mom). We wondered if he had an ear infection but his daddy and I both noted that we had both cleaned his ears, pressed on them, all with no signs of discomfort from him. He did spend most of Saturday and all of Sunday night sitting up in a chair (laying on one of us) but we have spent many nights like that in the past and it was tummy pain, not ear pain.
Monday morning = appointment with a pediatrician to see if we can find a source of these fevers. Ears check- bingo. Ear infection. What antibiotic do we use? Little man had antibiotics at birth, but has not had any since. Dr.Jyonouchi has advised if he needs them to try IM Rochephin. We won't have to worry about it going through his gut, although the effects of the antibiotic will still be there (disruption of his gut flora). But disruption of his gut flora could be a good thing....if we control it as much as we can....
Thursday, April 28, 2011
More Probiotics?
Little Man is tolerating the Kirkman labs CD-Biotic, it is the lactobacillus rhamnosus, lactobacillus plantarum, and saccharomyces boulardi. But something isn't complete with this probiotic. We are shooting in the dark-does he need additional strains? Every time we try to add the a bifida strain, we have issues. Switching to ProBioGod caused FPIES reaction building like symptoms, anda switch to a new probiotic with multi strains brought on a cough, quickly followed by fevers. The fevers may have been exacerbated by some coconut I was giving him. We have trialed coconut in the past, the trial got interrupted and we haven't made it fully back to it yet but have started a few times with no adverse reactions. The only problem we seem to run into is that he will eat it with gusto the first day, and then not want it the next. So, like with a growing list of foods- we don't really know if it is truly "safe", because of his delayed responses- we need to trial a food for 10-14days before calling it safe.
Coconut is a functional food. It is a prebiotic- food for probiotics. Coconut is a natural anti-fungal. Dr.Jyonouchi has said an anti-fungal (Nystation or Diflucan) helps some Protein Intolerant children when starting a probiotic. How does it help? I have not had time to fully research yet as I do like to know the what's and why's of things- especially since we are getting conflicting recommendations from his doctors. Our trusted GI doctor is worried about doing Nystatin prophylactically with concerns that he would not tolerate it. A valid concern. Dr.Jyonouchi often prescribes it prophylactically. With e-mail discussions with her, it sounds like it helps control the fungals (the "bad" gut bacteria) while the Probiotic (strengthening the "good" gut bacteria) does it's job. It helps even the playing field in correcting the dysbiosis. I have also heard of many kids having success with doctors who also prescribe an antibiotic during this "reseting" time. An antibiotic can kill off some "bad" gut bugs, but it is more detrimental to "good" gut bugs. But with the right combination of therapy, in particular if you know the gut flora of the child, it can help with the dysbiosis.
We are worried he will react to Nystatin. He is having problems with the probiotic- it plateau's throughout the day- when given, it has an almost immediate effect but we are seeing it wear off 4-6hrs. later. I did try and give it to him 3x/day but it seemed like too much? So, it seems, what he needs is something to help it- something for it to feed off of so it can reside a little longer and have "strength" to do it's job inside his intestines, alongside the resident gut flora. I decide to go back to coconut. He needs something.
He's been fussy that morning, so he sits on the counter while I made some coconut milk, with intentions to put a little in a few of his bottles (maybe the one he takes around the probiotic dose?). He is asking for some of the coconut manna (a coco butter that is the "meat" of the coconut and can be melted down for various things). I give him some coconut manna on a spoon- he loves it. "Yum, yum, more, eat". Nothing makes my heart sing more than hearing him say that, as I watch him enjoying a food -- especially if it is a food that is safe. He lays down for a nap shortly after that and when he wakes up, he has a fever and his cough is progressing, he is whiny and clingy. He doesn't have any FPIES symptoms, just increasing of symptoms we were beginning to see. I don't feel it is from the coconut proteins but did the anti-fungal components of coconut push him into an extreme "die off" reaction from the probiotic? It is possible.
Dr.Jyonouchi has spoke of her experience of probiotics having an effect on upregulation of the immune system in protein intolerant children. Which, from what I understand is the same thing as what is referred to as "die off" in complimentary medicine. The immune system is activated because of the "toxins" - by products of "bad" gut bacteria breaking down and being released into the blood as they are broken down and leaving the GI tract. The various effects of what happens as these toxins leave the body is different in each person (and parts of why this term is not recognized in medical terms as these effects can varied and difficult to point to origin of gut bacteria)...those that live it, see it from a different perspective and many times it takes experience to really help us to understand something. In a well functioning body, these toxins leave the system almost un-noticed, or with only slight ill effects. In a susceptible person, the effects can be intense. FPIES children (Protein Intolerant children) have over-reactive immune systems. Food is perceived as toxin, even gut microbes can be perceived as toxins in the gut. Now, with probiotics that cause bad gut bacteria to breakdown, we send toxins into the blood; where the body is recognize and attack these toxins....and in FPIES case, over-react in attack mechanisms. It has brought on fevers with Little Man in the past as well (with introduction of bifida strain, with reactions to foods). His experiences are teaching me....
The next day was his IV iron therapy. By this time, he has decreased his drinking and his fevers persist, he is getting dehydrated. I am the one to take him to the infusion center for his IV placement and to start the iron. I hold him while they search for a vein to insert the IV in. In his arm they go, under his skin, and the vein jumps away/shrinks. The poke around a little more. He is screaming and crying, but I notice he is not as strong as he usually is. This makes me more sad than the pain of the needle he is enduring, he doesn't even have the strength to fight me. The phlebotomists were very gentle and sweet. They stopped trying in that arm but wanted to give his other arm a try. He needs this iron, he is tired and weak, and spiraling. I know he needs to endure this little bit of pain for a bigger purpose. I hold him while they try the other arm, and get it in. So relieved. IV iron is infused. We did IV Iron Sucrose for the first time. IV iron sucrose is the typical administration of IV iron, but sucrose is corn. Dextrose is also corn but it is broken down an extra step. Previously we had used IV iron dextran. IV iron dextran takes 6hrs. to infuse, IV iron sucrose takes 1hr. IV iron dextran takes so much out of him. We do not know if the corn product in the IV affects his corn allergy, we do know he needs the iron and that oral iron supplementation was too hard on his intestines, and he was not tolerating it. We have to do IV. FPIES is a T-cell mediated response. T-cells are everywhere in the body, traveling through the lymph system. So reactions to allergens can happen on the skin, and even in IV. The risk outweighs the benefit and we switch to IV iron sucrose.
While he had the IV in, we requested he get some fluids to hydrate him. We have seen in the past that when dehydrated begins to set in, it spirals him quickly. His dehydration is not from an FPIES reaction, so we remain hopeful we can stay ahead of it at home. This IV of saline will help. We hope....
Coconut is a functional food. It is a prebiotic- food for probiotics. Coconut is a natural anti-fungal. Dr.Jyonouchi has said an anti-fungal (Nystation or Diflucan) helps some Protein Intolerant children when starting a probiotic. How does it help? I have not had time to fully research yet as I do like to know the what's and why's of things- especially since we are getting conflicting recommendations from his doctors. Our trusted GI doctor is worried about doing Nystatin prophylactically with concerns that he would not tolerate it. A valid concern. Dr.Jyonouchi often prescribes it prophylactically. With e-mail discussions with her, it sounds like it helps control the fungals (the "bad" gut bacteria) while the Probiotic (strengthening the "good" gut bacteria) does it's job. It helps even the playing field in correcting the dysbiosis. I have also heard of many kids having success with doctors who also prescribe an antibiotic during this "reseting" time. An antibiotic can kill off some "bad" gut bugs, but it is more detrimental to "good" gut bugs. But with the right combination of therapy, in particular if you know the gut flora of the child, it can help with the dysbiosis.
We are worried he will react to Nystatin. He is having problems with the probiotic- it plateau's throughout the day- when given, it has an almost immediate effect but we are seeing it wear off 4-6hrs. later. I did try and give it to him 3x/day but it seemed like too much? So, it seems, what he needs is something to help it- something for it to feed off of so it can reside a little longer and have "strength" to do it's job inside his intestines, alongside the resident gut flora. I decide to go back to coconut. He needs something.
He's been fussy that morning, so he sits on the counter while I made some coconut milk, with intentions to put a little in a few of his bottles (maybe the one he takes around the probiotic dose?). He is asking for some of the coconut manna (a coco butter that is the "meat" of the coconut and can be melted down for various things). I give him some coconut manna on a spoon- he loves it. "Yum, yum, more, eat". Nothing makes my heart sing more than hearing him say that, as I watch him enjoying a food -- especially if it is a food that is safe. He lays down for a nap shortly after that and when he wakes up, he has a fever and his cough is progressing, he is whiny and clingy. He doesn't have any FPIES symptoms, just increasing of symptoms we were beginning to see. I don't feel it is from the coconut proteins but did the anti-fungal components of coconut push him into an extreme "die off" reaction from the probiotic? It is possible.
Dr.Jyonouchi has spoke of her experience of probiotics having an effect on upregulation of the immune system in protein intolerant children. Which, from what I understand is the same thing as what is referred to as "die off" in complimentary medicine. The immune system is activated because of the "toxins" - by products of "bad" gut bacteria breaking down and being released into the blood as they are broken down and leaving the GI tract. The various effects of what happens as these toxins leave the body is different in each person (and parts of why this term is not recognized in medical terms as these effects can varied and difficult to point to origin of gut bacteria)...those that live it, see it from a different perspective and many times it takes experience to really help us to understand something. In a well functioning body, these toxins leave the system almost un-noticed, or with only slight ill effects. In a susceptible person, the effects can be intense. FPIES children (Protein Intolerant children) have over-reactive immune systems. Food is perceived as toxin, even gut microbes can be perceived as toxins in the gut. Now, with probiotics that cause bad gut bacteria to breakdown, we send toxins into the blood; where the body is recognize and attack these toxins....and in FPIES case, over-react in attack mechanisms. It has brought on fevers with Little Man in the past as well (with introduction of bifida strain, with reactions to foods). His experiences are teaching me....
The next day was his IV iron therapy. By this time, he has decreased his drinking and his fevers persist, he is getting dehydrated. I am the one to take him to the infusion center for his IV placement and to start the iron. I hold him while they search for a vein to insert the IV in. In his arm they go, under his skin, and the vein jumps away/shrinks. The poke around a little more. He is screaming and crying, but I notice he is not as strong as he usually is. This makes me more sad than the pain of the needle he is enduring, he doesn't even have the strength to fight me. The phlebotomists were very gentle and sweet. They stopped trying in that arm but wanted to give his other arm a try. He needs this iron, he is tired and weak, and spiraling. I know he needs to endure this little bit of pain for a bigger purpose. I hold him while they try the other arm, and get it in. So relieved. IV iron is infused. We did IV Iron Sucrose for the first time. IV iron sucrose is the typical administration of IV iron, but sucrose is corn. Dextrose is also corn but it is broken down an extra step. Previously we had used IV iron dextran. IV iron dextran takes 6hrs. to infuse, IV iron sucrose takes 1hr. IV iron dextran takes so much out of him. We do not know if the corn product in the IV affects his corn allergy, we do know he needs the iron and that oral iron supplementation was too hard on his intestines, and he was not tolerating it. We have to do IV. FPIES is a T-cell mediated response. T-cells are everywhere in the body, traveling through the lymph system. So reactions to allergens can happen on the skin, and even in IV. The risk outweighs the benefit and we switch to IV iron sucrose.
While he had the IV in, we requested he get some fluids to hydrate him. We have seen in the past that when dehydrated begins to set in, it spirals him quickly. His dehydration is not from an FPIES reaction, so we remain hopeful we can stay ahead of it at home. This IV of saline will help. We hope....
Wednesday, April 27, 2011
Slowing down....
There are many lessons a chronic illness has taught me, my family. I am one to want the quieter aspects of life, the life that is slow and purposeful....but in today's society that is more and more difficult to achieve and maintain. This is where a chronic illness becomes a blessing. It is essential and critical to my son's health to slow down. To be self-sufficient inside our home, to enjoy just spending the day with the kids and doing what a mom does best- to nurture. My role on this earth is to mother these children in this world, to achieve eternal life in the next.
But with an illness that is not only chronic but rare, my role quickly becomes nurse, doctor, and even researcher.
I have had to make many decisions on where and how I spend my time. I have to divide it between 4 children who need so much of it. They are only little once...it goes so quickly. Some recent decisions were more tough to make. As I was pondering over the many I was fighting with one particularly rough afternoon, a fellow mom reminded me to not rush my thoughts on my decisions, that it is about "waiting for things to be clear, and for doors to open and shut. Making decisions too quickly before they are clear are not blessed. Blessed choices will be taken care of."
God provides. My Faith brings me that solace, but some days I still need to be reminded of it; and perspective from a mom going through the same stresses I am, spoke very clearly to me....I was (am) moved by her words, her inspiration.
One of the many difficult decisions I was pondering over that day was my return to work. Before Little Man's illness, I was working part-time. I am very fortunate to be in a career that I enjoy every day of. My passion is nutrition, diet, and the body (in particular the gastrointestinal system)- I get to do that everyday I go to work. Not only do I enjoy my work, the little bit of help I provide to the patients I visit during their stay at the hospital, but I work with an amazing team of Dietetic Technicians and Dietitians. My son's illness is surrounded by diet and nutrition and I have been surrounded by support from day one from these fellow Dietetic Technicians and Dietitians. When I needed to be out to care for my son, I could always count on them to understand, and care, and helping me personally, and professionally along this path- sharing any information they would come across about allergies, FPIES, corn allergy, vitamins, etc. When the time came for Little man to have TPN (IV nutrition), I began my FMLA; which was followed by extraordinary/extended FMLA as his care remained complex and full-time. During this time, we tried to weigh all the options and make the decision. It was a difficult decision to make but once I let it go and waited for doors to shut and windows to open, and prayed about it....the decision came to me. I am not returning to work part-time, I will remain on supplemental staff (which I am thankful for the flexibility to be able to do so).
How will we make it without my income? I do not know, but my Faith sustains me that this decision has been Blessed.
But with an illness that is not only chronic but rare, my role quickly becomes nurse, doctor, and even researcher.
I have had to make many decisions on where and how I spend my time. I have to divide it between 4 children who need so much of it. They are only little once...it goes so quickly. Some recent decisions were more tough to make. As I was pondering over the many I was fighting with one particularly rough afternoon, a fellow mom reminded me to not rush my thoughts on my decisions, that it is about "waiting for things to be clear, and for doors to open and shut. Making decisions too quickly before they are clear are not blessed. Blessed choices will be taken care of."
God provides. My Faith brings me that solace, but some days I still need to be reminded of it; and perspective from a mom going through the same stresses I am, spoke very clearly to me....I was (am) moved by her words, her inspiration.
One of the many difficult decisions I was pondering over that day was my return to work. Before Little Man's illness, I was working part-time. I am very fortunate to be in a career that I enjoy every day of. My passion is nutrition, diet, and the body (in particular the gastrointestinal system)- I get to do that everyday I go to work. Not only do I enjoy my work, the little bit of help I provide to the patients I visit during their stay at the hospital, but I work with an amazing team of Dietetic Technicians and Dietitians. My son's illness is surrounded by diet and nutrition and I have been surrounded by support from day one from these fellow Dietetic Technicians and Dietitians. When I needed to be out to care for my son, I could always count on them to understand, and care, and helping me personally, and professionally along this path- sharing any information they would come across about allergies, FPIES, corn allergy, vitamins, etc. When the time came for Little man to have TPN (IV nutrition), I began my FMLA; which was followed by extraordinary/extended FMLA as his care remained complex and full-time. During this time, we tried to weigh all the options and make the decision. It was a difficult decision to make but once I let it go and waited for doors to shut and windows to open, and prayed about it....the decision came to me. I am not returning to work part-time, I will remain on supplemental staff (which I am thankful for the flexibility to be able to do so).
How will we make it without my income? I do not know, but my Faith sustains me that this decision has been Blessed.
Saturday, April 23, 2011
Anemia
Little man has always had low hemoglobin, the first blood work we did (around 6mo.) showed a low hemoglobin and low Vit.D. It was one of my confirmations of the intestinal inflammation I suspected he had, that matched his ever-growing symptoms. A change from breast milk to elemental formula where we could be assured he was getting the iron his body needed, but his hemoglobin continued to teeter and his iron stores continued to fall. Iron is needed for the body to make hemoglobin. We got him started on some oral iron pills- even compounded to avoid his allergens (corn), initially he seemed to respond to them and we had hopes it would do the job- slowly but safely. He had a lot of weird symptoms at that time but we attributed to iron upsetting a sensitive stomach and resigned that it would be part of the side affects he would have to deal with....to avoid a blood transfusion. A few weeks later and he was no longer responding (even reacting to) his iron pills, his iron stores were severely depleted and his hemoglobin dropped severely low. By the end of October, he was admitted for a blood transfusion....a very scary time for us. He responded well to the blood transfusion and his hemoglobin raised nicely; however it did little for his iron stores and within a few weeks, he was quickly declining again. After the soy challenge, it went very low. That is when IV iron was decided to be the best course for him, along with IV nutrition. That was almost 4mo.ago. We have been checking his blood labs frequently, with two checks in a row revealing a wonderful hemoglobin within normal limits. We last checked March 15. We had a follow up appointment on April 15 with our GI doctor, it was time to check his labs again....he was chewing on wood, he was fatiguing easily, his appetite was declining, he had had accidental ingestion reactions, he was spiraling....the blood work came back and we were all surprised to find a low hemoglobin once again (8.8)! Back to IV iron....
Why are his iron stores always so low? Is it his diet? From the outside looking in, it would be an easy culprit to blame; but a quick glance at all his lab data and you can see his iron stores progressively declining from 6mo.until he got TPN (IV nutrition with IV iron)- even through getting 5+mo. of elemental formula. IV iron has been the only thing to bring his levels back to where they should be. His DRI (daily recommended intakes) for his age is around 7g.- he gets around 15g/day! He is missing vital B vitamins (gets some but not all) so essentially he is a 22mo.old vegetarian. The typical recommendation for a vegetarian is to double up the protein sources to assure adequate iron intakes since non-heme (plant) sources of iron are not absorbed as readily by the body as heme (meat) sources are. So, we're doing that and still he is unable to maintain his iron.
His gut is not absorbing his iron enough- regardless if his diet is complete in it or not. But why?
http://www.loveyourbelly.com/resources/gut.html
"people with damaged gut flora often have particular groups of pathogenic bacteria growing in their gut, including iron-loving bacteria (Actinomyces spp., Mycobacterium spp., pathogenic strains of E.Coli, Corynebacterium spp. an...d many others). These bacteria consume whatever iron the the diet provides, leaving that person deficient in iron. Unfortunately, supplementing iron only makes these bacteria grow stronger and does not remedy anaemia. To treat anaemia, the person requires all the nutrients we have mentioned, many of which healthy gut flora supply"
I found this reference recently, while trying to read more about some information I ran across a few months ago that would explain his anemia more....have found this connection interesting.
I've also since learned that beneficial bacteria actually synthesize/produce B vitamins (which helps the body with iron).
He has continued blood in his stools, from what we are told is from a fissure (superficial, bright red), his diet is double his iron needs for his age but from plant source, his diet is low in B vitamins, and Vit.C, he has dysbiosis, and I am now really thinking the above reasoning (gut flora) is behind this anemia. We see in his blood work data from Dr.Jyonouchi that his gut dysbiosis is behind/at the root of his complexity of responses.
Stool samples are sent, probiotics are on board (trying to find the right "fit"), B vitamins are ordered and will be "trialed".....I continue to fight this fight for him. But I'm not working fast enough....
Bringing him in last week to get an IV placed for the iron to be administered was rough, emotionally and physically exhausting. He is so little, and he goes through so much.....I just can't seem to research enough, there are not enough hours in the day to get far enough ahead of his condition to know what next step to take. Someday, the doctors will know more about FPIES, someday treatment protocols will begin sooner and infants and toddlers do not need to suffer these co-factoring illnesses on top of what FPIES already is.
Why are his iron stores always so low? Is it his diet? From the outside looking in, it would be an easy culprit to blame; but a quick glance at all his lab data and you can see his iron stores progressively declining from 6mo.until he got TPN (IV nutrition with IV iron)- even through getting 5+mo. of elemental formula. IV iron has been the only thing to bring his levels back to where they should be. His DRI (daily recommended intakes) for his age is around 7g.- he gets around 15g/day! He is missing vital B vitamins (gets some but not all) so essentially he is a 22mo.old vegetarian. The typical recommendation for a vegetarian is to double up the protein sources to assure adequate iron intakes since non-heme (plant) sources of iron are not absorbed as readily by the body as heme (meat) sources are. So, we're doing that and still he is unable to maintain his iron.
His gut is not absorbing his iron enough- regardless if his diet is complete in it or not. But why?
http://www.loveyourbelly.com/resources/gut.html
"people with damaged gut flora often have particular groups of pathogenic bacteria growing in their gut, including iron-loving bacteria (Actinomyces spp., Mycobacterium spp., pathogenic strains of E.Coli, Corynebacterium spp. an...d many others). These bacteria consume whatever iron the the diet provides, leaving that person deficient in iron. Unfortunately, supplementing iron only makes these bacteria grow stronger and does not remedy anaemia. To treat anaemia, the person requires all the nutrients we have mentioned, many of which healthy gut flora supply"
I found this reference recently, while trying to read more about some information I ran across a few months ago that would explain his anemia more....have found this connection interesting.
I've also since learned that beneficial bacteria actually synthesize/produce B vitamins (which helps the body with iron).
He has continued blood in his stools, from what we are told is from a fissure (superficial, bright red), his diet is double his iron needs for his age but from plant source, his diet is low in B vitamins, and Vit.C, he has dysbiosis, and I am now really thinking the above reasoning (gut flora) is behind this anemia. We see in his blood work data from Dr.Jyonouchi that his gut dysbiosis is behind/at the root of his complexity of responses.
Stool samples are sent, probiotics are on board (trying to find the right "fit"), B vitamins are ordered and will be "trialed".....I continue to fight this fight for him. But I'm not working fast enough....
Bringing him in last week to get an IV placed for the iron to be administered was rough, emotionally and physically exhausting. He is so little, and he goes through so much.....I just can't seem to research enough, there are not enough hours in the day to get far enough ahead of his condition to know what next step to take. Someday, the doctors will know more about FPIES, someday treatment protocols will begin sooner and infants and toddlers do not need to suffer these co-factoring illnesses on top of what FPIES already is.
Raising Awareness...
One article, newspaper publication, TV interview at a time. FPIES families are raising awareness. Raising awareness of the daily struggles of FPIES, what FPIES children look like, what FPIES acts like in their children, the spectrum of this illness, multiple protein intolerances, oh- and did I say the daily struggles of FPIES? Some articles/interviews (ours included) seem to gear toward the sympathy card, which is understandable, as sympathy creates empathy, empathy creates support, support creates awareness.
This week, a fellow MN FPIES mom, and close confident and friend in my FPIES world, was featured in a local MN magazine. It is a beautiful article, about a beautiful girl. It is well written, and informative. View it here in this issue of Health Watch, click to pages 16-17.
This week, a fellow MN FPIES mom, and close confident and friend in my FPIES world, was featured in a local MN magazine. It is a beautiful article, about a beautiful girl. It is well written, and informative. View it here in this issue of Health Watch, click to pages 16-17.
Sunday, April 17, 2011
The Spiral...
We haven't been doing food trials. We have known for many months that something is wrong with Little Man's digestion, even his "safe" foods, he can only handle in very small increments....they don't show any signs of FPIES trigger reactions but too much still will cause some gut discomfort and sleep disturbances.
Dr.J advised that his gut is in severe dysbiosis and taking steps with food trials will only further this unless and until we correct it. We need to push through with probiotics, we need to address treating the potential overgrowth of bad bacteria if the probiotics alone can not regulate the dysbiosis, and we may need to consider enzymes to help further his digestion with food trials, following probiotic treatment. His gut has been in a state of dysbiosis for quite some time. It is going to take time to heal that.
Little Man has been on the CD-Biotic from Kirkman labs since returning from that visit to the PCRCD, with Dr.J's recommendation to start with a slow introduction of a single strain probiotic. We had a rough start, some would refer to as "die off", Dr.J called upregulation of the immune system in response to the probiotic strains (I think they mean the same thing, one is a medical term, the other a everyday term). Noting that with these symptoms, we were able to push through because nothing was significant or building or cascading, and it subsided completely by day 9. We had good increase in appetite and mood and he gained weight. Things were good, but we were noticing a "plateau effect", the probiotic wasn't lasting all day. We broke up the doses, doing one morning dose and one evening dose. This seemed to help some but we were still falling short. So, either he needed a prebiotic or it was time for the addition of a bifida strain. Dr.J left it up to us which to try first....knowing he could potentially react to either, or both.....
Here are my notes from those days:
3-12: 1st dose Bifida strains + CD Biotic. Woke up with fever from nap
3-13 Skip bifida, + CD Biotic. Ate poorly, fussy, pallor, chewing on wood, very crabby in evening.
3-14: Skip bifida +CD Biotic. Ate poorly, rough day, very fussy, very off, bad breath, shiny BM, crying in sleep
3-15: Bifida strains(2nd time)+ CD Biotic. Very fussy all day. Lab check today, CBC all within normal limits (may be the first time in his life!)
3-16: Bifida strains+ CD Biotic. Seems to be doing better but ate chalk, then spit up 2hrs.later
3-17: Bifida strains+CD-Biotic. Blood in stool, whiny a lot, gave Tylenol at night (so fussy/pain?) ?ing bifida strain, or from chalk?
3-18: CD-Biotic. Hold bifida strains. Tried banana. Better day- slept well last night, normal activity, but then up a lot through night after banana.
3-19: CD-Biotic. Nibbles banana. Slept better No bifida, ate well
3-20: CD-Biotic. Licked banana
3-21: CD-Biotic. Cough, runny nose, fever
3-22: CD-Biotic. Trouble going to sleep for nap
3-23: CD-Biotic. Try bites of banana again. Trouble sleeping, decreased appetite
3-24: CD-Biotic. Decreased appetite
3-25: CD-Biotic. Decreased appetite, trouble sleeping (up every hour all night last night after 12:30!)
3-26: CD-Biotic. Plum organics peach in millet muffin tops (semi-retrial of plum organics brand)
3-27: CD-Biotic.Millet muffin tops
3-28: CD-Biotic. Ate ok all day but ~8pm, coughed and threw up
3-29: CD-Biotic.
3-30: CD-Biotic. Restart bifida strain. Difficult with nap but ate ok and slept well overnight.
3-31: ProBio Gold. Napped easily, morning BM had blood
4-1: ProBioGold. Rough day, up through the night last night and coughed and threw up a little Fussy and clingy all day
4-2: No probiotic. Decreased appetite, awake a lot through night last night but didn’t want to eat, less wet diapers, fussy, tired, played very little today, pallor. Issues from ProBioGold?
4-3: No probiotic. Diarrhea/liquid BM, +Smell; otherwise doing better today Reacted to ProBioGold??
4-4: No probiotic. Bites of banana (asked for it). Green shiny BM.
4-5: No probiotic. Ate puree peaches. Lots of crying through the night last night, poor appetite all day. Recooping from ProBioGold or from Banana? Needs probiotic. No more banana
4-6: No probiotic. Difficult sleep for nap- pain, kicking legs, couldn’t stay asleep, Morning BM full of mucous (?banana)
4-7: Restart CD biotic. Appetite still poor, still some mucous in BM. Clearly seems to need probiotic.
4-8: CD biotic. RRD, Pallor (lips and eyes), fussy in afternoon. Appetite improving.
4-9: CDbiotic. Pale. Skipped morning probiotic
4-10: CD biotic. Cranky, lots of gas, struggled with nap. Readjusting to probiotic or still re-cooping from banana or ProBioGold?? +BM with mucous and blood.
4-11: No probiotic today, no BM today.
4-12: CD biotic. Up for 2hrs in the middle of the night last night! (?from missed probiotic?)
4-13: CD Biotic. Nectarine (mistake- thought frozen nectarines were frozen peaches, until opened bag and ready to give it to him). Crabby all day. Blood & mucous in evening BM.
4-14: CD Biotic. Lab draw today, rough afternoon after. Poor appetite all day. Found out Anemic again, hemoglobin 8.8 (normal is above 10.5)!
4-15: CD Biotic. Working on decreasing arrowroot in formula, tolerating it well. Playing well, happy boy.
4-16: CD Biotic. Doing well. Playing well, happy most of the day, until....he got a hold of a juice box. 100% juice still has citric acid and ascorbic acid added....he reacted, within 2hrs. he was screaming, 4hrs he had a 'reaction' diaper, and 7hrs. later was the vomiting.
When did we start to spiral? Did you see it? How do we stop? His iron was falling, some time after 3-15, we had it checked that day and he was doing so well! Maintaining a hemoglobin of 11 for a month. He had some bloody stools this month, some minor reactions, a fever/virus, some gut flora disruption...but we've barely moved 1/2" forward, and now we're set back again. He spirals so easily, one false move can set it off and it can be so difficult to regain ground with his "atypical" FPIES. We still do not know why he is so sensitive. The findings from Dr.J's research give us clues but no definitive answers as of yet. It is all still about the trials-take a step, evaluate, take a step, evaluate again. So, next steps? IV iron, stool studies, pushing through to get a good probiotic established and tolerated (maybe trying a new one?). All of this before we can even think of a food trial!
Dr.J advised that his gut is in severe dysbiosis and taking steps with food trials will only further this unless and until we correct it. We need to push through with probiotics, we need to address treating the potential overgrowth of bad bacteria if the probiotics alone can not regulate the dysbiosis, and we may need to consider enzymes to help further his digestion with food trials, following probiotic treatment. His gut has been in a state of dysbiosis for quite some time. It is going to take time to heal that.
Little Man has been on the CD-Biotic from Kirkman labs since returning from that visit to the PCRCD, with Dr.J's recommendation to start with a slow introduction of a single strain probiotic. We had a rough start, some would refer to as "die off", Dr.J called upregulation of the immune system in response to the probiotic strains (I think they mean the same thing, one is a medical term, the other a everyday term). Noting that with these symptoms, we were able to push through because nothing was significant or building or cascading, and it subsided completely by day 9. We had good increase in appetite and mood and he gained weight. Things were good, but we were noticing a "plateau effect", the probiotic wasn't lasting all day. We broke up the doses, doing one morning dose and one evening dose. This seemed to help some but we were still falling short. So, either he needed a prebiotic or it was time for the addition of a bifida strain. Dr.J left it up to us which to try first....knowing he could potentially react to either, or both.....
Here are my notes from those days:
3-12: 1st dose Bifida strains + CD Biotic. Woke up with fever from nap
3-13 Skip bifida, + CD Biotic. Ate poorly, fussy, pallor, chewing on wood, very crabby in evening.
3-14: Skip bifida +CD Biotic. Ate poorly, rough day, very fussy, very off, bad breath, shiny BM, crying in sleep
3-15: Bifida strains(2nd time)+ CD Biotic. Very fussy all day. Lab check today, CBC all within normal limits (may be the first time in his life!)
3-16: Bifida strains+ CD Biotic. Seems to be doing better but ate chalk, then spit up 2hrs.later
3-17: Bifida strains+CD-Biotic. Blood in stool, whiny a lot, gave Tylenol at night (so fussy/pain?) ?ing bifida strain, or from chalk?
3-18: CD-Biotic. Hold bifida strains. Tried banana. Better day- slept well last night, normal activity, but then up a lot through night after banana.
3-19: CD-Biotic. Nibbles banana. Slept better No bifida, ate well
3-20: CD-Biotic. Licked banana
3-21: CD-Biotic. Cough, runny nose, fever
3-22: CD-Biotic. Trouble going to sleep for nap
3-23: CD-Biotic. Try bites of banana again. Trouble sleeping, decreased appetite
3-24: CD-Biotic. Decreased appetite
3-25: CD-Biotic. Decreased appetite, trouble sleeping (up every hour all night last night after 12:30!)
3-26: CD-Biotic. Plum organics peach in millet muffin tops (semi-retrial of plum organics brand)
3-27: CD-Biotic.Millet muffin tops
3-28: CD-Biotic. Ate ok all day but ~8pm, coughed and threw up
3-29: CD-Biotic.
3-30: CD-Biotic. Restart bifida strain. Difficult with nap but ate ok and slept well overnight.
3-31: ProBio Gold. Napped easily, morning BM had blood
4-1: ProBioGold. Rough day, up through the night last night and coughed and threw up a little Fussy and clingy all day
4-2: No probiotic. Decreased appetite, awake a lot through night last night but didn’t want to eat, less wet diapers, fussy, tired, played very little today, pallor. Issues from ProBioGold?
4-3: No probiotic. Diarrhea/liquid BM, +Smell; otherwise doing better today Reacted to ProBioGold??
4-4: No probiotic. Bites of banana (asked for it). Green shiny BM.
4-5: No probiotic. Ate puree peaches. Lots of crying through the night last night, poor appetite all day. Recooping from ProBioGold or from Banana? Needs probiotic. No more banana
4-6: No probiotic. Difficult sleep for nap- pain, kicking legs, couldn’t stay asleep, Morning BM full of mucous (?banana)
4-7: Restart CD biotic. Appetite still poor, still some mucous in BM. Clearly seems to need probiotic.
4-8: CD biotic. RRD, Pallor (lips and eyes), fussy in afternoon. Appetite improving.
4-9: CDbiotic. Pale. Skipped morning probiotic
4-10: CD biotic. Cranky, lots of gas, struggled with nap. Readjusting to probiotic or still re-cooping from banana or ProBioGold?? +BM with mucous and blood.
4-11: No probiotic today, no BM today.
4-12: CD biotic. Up for 2hrs in the middle of the night last night! (?from missed probiotic?)
4-13: CD Biotic. Nectarine (mistake- thought frozen nectarines were frozen peaches, until opened bag and ready to give it to him). Crabby all day. Blood & mucous in evening BM.
4-14: CD Biotic. Lab draw today, rough afternoon after. Poor appetite all day. Found out Anemic again, hemoglobin 8.8 (normal is above 10.5)!
4-15: CD Biotic. Working on decreasing arrowroot in formula, tolerating it well. Playing well, happy boy.
4-16: CD Biotic. Doing well. Playing well, happy most of the day, until....he got a hold of a juice box. 100% juice still has citric acid and ascorbic acid added....he reacted, within 2hrs. he was screaming, 4hrs he had a 'reaction' diaper, and 7hrs. later was the vomiting.
When did we start to spiral? Did you see it? How do we stop? His iron was falling, some time after 3-15, we had it checked that day and he was doing so well! Maintaining a hemoglobin of 11 for a month. He had some bloody stools this month, some minor reactions, a fever/virus, some gut flora disruption...but we've barely moved 1/2" forward, and now we're set back again. He spirals so easily, one false move can set it off and it can be so difficult to regain ground with his "atypical" FPIES. We still do not know why he is so sensitive. The findings from Dr.J's research give us clues but no definitive answers as of yet. It is all still about the trials-take a step, evaluate, take a step, evaluate again. So, next steps? IV iron, stool studies, pushing through to get a good probiotic established and tolerated (maybe trying a new one?). All of this before we can even think of a food trial!
Saturday, April 16, 2011
Echo's
Almost a year ago now, I met a fellow FPIES mom on the babycenter boards. She and I quickly formed a bond, she having 3 boys, I having 4. Our FPIES children being the babies, being just days apart in age.
I know, you're thinking- how many FPIES mommies are you gonna reference here on this blog? We share so many commonalities, in such an isolating diagnosis, it is hard not to. When one of them does a post of something that is exactly in my head, it seems silly to re-write the same words....or does it? It illustrates how much we do share. Yesterday, I was discussing this very thing with someone who asked me how Little Man was doing.....Darkness....
As I said these same words, I thought these same thoughts....this makes me smile and sad all in the same breath. I smile because of the resiliency of an innocent child and how grateful I am that God gives him that. But I am sad that he has to go through so much pain and not know what a life without it would even be like. It is the definition of a chronic illness, and many people go through it....but it does seem unfair that someone so little would have to. My continued prayer (and Faith) is that it is making him a strong soul....
I know, you're thinking- how many FPIES mommies are you gonna reference here on this blog? We share so many commonalities, in such an isolating diagnosis, it is hard not to. When one of them does a post of something that is exactly in my head, it seems silly to re-write the same words....or does it? It illustrates how much we do share. Yesterday, I was discussing this very thing with someone who asked me how Little Man was doing.....Darkness....
As I said these same words, I thought these same thoughts....this makes me smile and sad all in the same breath. I smile because of the resiliency of an innocent child and how grateful I am that God gives him that. But I am sad that he has to go through so much pain and not know what a life without it would even be like. It is the definition of a chronic illness, and many people go through it....but it does seem unfair that someone so little would have to. My continued prayer (and Faith) is that it is making him a strong soul....
I can't do it alone....
There, I said it. I've been saying it a lot lately actually. I have always said it but maybe not out loud as much. Maybe it is because in the beginning of the spiral of events, I was seen as not coping. Maybe I wasn't....but I do believe I was coping as best as I could have for the time (but certainly could not have stayed in that frame of mind for long). My not coping was then viewed as my son's illness not being as serious as it was. The self doubt, stress and anxiety that brings certainly doesn't encourage coping skills.
I have since adapted multiple coping skills. Accepting help is one of them. Accepting help from outside but inside too. Little Man was breastfed, formula's had made him very sick. He depended on me to provide him nourishment and comfort. I was the one providing his nourishment- whether I was with him or not. I was the one providing him comfort in the middle of the night when his pain and attacks would disturb his sleep. So much disturbed sleep, the world was becoming a haze of auto-pilot wife/mother/worker. I can't do it alone....
I admitted I needed help, I asked Little Man's daddy to help get up with him. I had pumped milk in bottles, he could have. It didn't take many nights for him to ask "what is wrong with him?"....my asking for help helped me to see that it wasn't all in my tired head. His daddy could tell too that something just wasn't right. That began to help both of us see his daytime symptoms more clearly. The more things we tried, the worse he got. Then, I asked for help again. Yet again, help I should have asked for sooner...from our pediatrician. It didn't take long for her too, to say "what is wrong with him?"...and, most importantly (and why I respect her so much)..."I don't know what is wrong but we need help and I will be here through it with you until we figure it out". Asking for help, again, helped me to see that it is so rare of an occurrences that an experienced pediatrician did not fully know it, then why should I think I could understand it. I can't do it alone.
Many of the next steps that followed again crippled me from asking for help. The next steps of us asking for help brought on more of the self-doubt, stress and anxiety when other doctors and specialists did not know what was wrong with him either and dismissed it as not very serious. These were some very long months in our family, and we became more and more inclusive as we felt more and more isolated. Little man's daddy and I leaned on each other. A trip across the country, food trials and reactions, hospitalizations, trying to raise 3 other boys to be strong, smart, considerate, faith-filled young men. I can't do it alone....
I've spoke about how the fellow FPIES moms/families have helped me through this, helped support me, helped me find new roads to explore, new foods to try, new doctors to see, new research. Asking for help in this community has helped to connect many pieces as we share and compare similiarities and differences along the spectrum of this illness. I've also spoke about friends and family who have helped. But the one person I haven't talked enough about is the one I can't do this without. Little Man's daddy.
Little man's daddy wrote this post about us, about our family: Resolved Hero's. For a very private man, this was no small feat, a view from the daddy side of this illness, it was a gift- more than money could buy or a dozen roses could convey.
Often people will ask me, you have 4 kids- and this Little Man requires so much attention...how do you do it all? I don't do it alone....
I have since adapted multiple coping skills. Accepting help is one of them. Accepting help from outside but inside too. Little Man was breastfed, formula's had made him very sick. He depended on me to provide him nourishment and comfort. I was the one providing his nourishment- whether I was with him or not. I was the one providing him comfort in the middle of the night when his pain and attacks would disturb his sleep. So much disturbed sleep, the world was becoming a haze of auto-pilot wife/mother/worker. I can't do it alone....
I admitted I needed help, I asked Little Man's daddy to help get up with him. I had pumped milk in bottles, he could have. It didn't take many nights for him to ask "what is wrong with him?"....my asking for help helped me to see that it wasn't all in my tired head. His daddy could tell too that something just wasn't right. That began to help both of us see his daytime symptoms more clearly. The more things we tried, the worse he got. Then, I asked for help again. Yet again, help I should have asked for sooner...from our pediatrician. It didn't take long for her too, to say "what is wrong with him?"...and, most importantly (and why I respect her so much)..."I don't know what is wrong but we need help and I will be here through it with you until we figure it out". Asking for help, again, helped me to see that it is so rare of an occurrences that an experienced pediatrician did not fully know it, then why should I think I could understand it. I can't do it alone.
Many of the next steps that followed again crippled me from asking for help. The next steps of us asking for help brought on more of the self-doubt, stress and anxiety when other doctors and specialists did not know what was wrong with him either and dismissed it as not very serious. These were some very long months in our family, and we became more and more inclusive as we felt more and more isolated. Little man's daddy and I leaned on each other. A trip across the country, food trials and reactions, hospitalizations, trying to raise 3 other boys to be strong, smart, considerate, faith-filled young men. I can't do it alone....
I've spoke about how the fellow FPIES moms/families have helped me through this, helped support me, helped me find new roads to explore, new foods to try, new doctors to see, new research. Asking for help in this community has helped to connect many pieces as we share and compare similiarities and differences along the spectrum of this illness. I've also spoke about friends and family who have helped. But the one person I haven't talked enough about is the one I can't do this without. Little Man's daddy.
Little man's daddy wrote this post about us, about our family: Resolved Hero's. For a very private man, this was no small feat, a view from the daddy side of this illness, it was a gift- more than money could buy or a dozen roses could convey.
Often people will ask me, you have 4 kids- and this Little Man requires so much attention...how do you do it all? I don't do it alone....
Little Boys & Big boys...
Little boys, big boys. We have 4 boys and they are evenly divided in age: big boys: W. is 10 and J. is 8 years old and little boys T. is 3 and of course, Little Man S. is 1 years old. No, we didn't plan it this way at all. God did. We love it.
The big boys have shared a room since they were the little boys' ages (3 and 1)- even if we have the extra room in the house, we feel it is important for their brother bonding to share a room....even if they do put the invisible line down the middle of the room!
When our T. (our third son) was born, he had his own room, for a bit; but once we found out we'd be adding a little man #4- we knew the arrangement for rooms would be nicely divided: Little boys and Big boys.
The little boys shared a room for only a few short months and then Little Man's sleep was becoming increasingly disturbed. We decided, for the rest of everyone, that we would move his brother into the room with his big brothers....just for awhile. We put a twin bed in Little Man's room and the nursing/co-sleeping began.....until we were down to a few mere hours of actual sleep a night before his sleep was just too disrupted from pain. We've done a lot of night time dances....living room recliner, living room couch, living room floor, if he would've slept in our bed- I would've done it in a heartbeat but he didn't like our bed!
All this time, his brother is still in the big boys room. We made the best of it, the big boys- although too big to admit it- enjoyed story time as we had done in years past with them- in the days of Dr.Seuss and Berenstein Bears- before Boxcar children and Magic Treehouse. Nighttime prayers while cuddled under warm covers, everyone all in one room; with no fear of waking Little Man with our night time routine.
A few months ago, desperate for more sleep, and to establish good sleep habits at the same time. I, once again, moved the twin bed into Little Man's room. There is where I slept, no longer nursing him, but assuring him that his room IS where we sleep, is where we are comfortable and safe. And, specific to Little Man, right there to warm up a middle of the night bottle when it is needed (and 2-4 are needed through the night to maintain his weight). A few weeks of this and Little Man has finally started to sleep better, or at least not be so scared or lost when he does wake up. He wakes because he is hungry (outside of food reactions- those remain long nights of disturbed sleep and tummy aches).
The other day, I decided it was time to move his brother back in the room with him. The first thing T. said was "W. and J. will be so happy"!! And they were. Over a year ago, we didn't ask them to share a room with their little brother, and they didn't complain. But they sure showed their excitement when they got home from school and discovered the move! Just another piece of the everyday of this chronic illness that we don't question, that the boys dont' question, but when we can get some "normalcy" out of it, some reprieve from the extraordinary circumstances, we all have J.'s reaction "YES! Finally!"
The big boys have shared a room since they were the little boys' ages (3 and 1)- even if we have the extra room in the house, we feel it is important for their brother bonding to share a room....even if they do put the invisible line down the middle of the room!
When our T. (our third son) was born, he had his own room, for a bit; but once we found out we'd be adding a little man #4- we knew the arrangement for rooms would be nicely divided: Little boys and Big boys.
The little boys shared a room for only a few short months and then Little Man's sleep was becoming increasingly disturbed. We decided, for the rest of everyone, that we would move his brother into the room with his big brothers....just for awhile. We put a twin bed in Little Man's room and the nursing/co-sleeping began.....until we were down to a few mere hours of actual sleep a night before his sleep was just too disrupted from pain. We've done a lot of night time dances....living room recliner, living room couch, living room floor, if he would've slept in our bed- I would've done it in a heartbeat but he didn't like our bed!
All this time, his brother is still in the big boys room. We made the best of it, the big boys- although too big to admit it- enjoyed story time as we had done in years past with them- in the days of Dr.Seuss and Berenstein Bears- before Boxcar children and Magic Treehouse. Nighttime prayers while cuddled under warm covers, everyone all in one room; with no fear of waking Little Man with our night time routine.
A few months ago, desperate for more sleep, and to establish good sleep habits at the same time. I, once again, moved the twin bed into Little Man's room. There is where I slept, no longer nursing him, but assuring him that his room IS where we sleep, is where we are comfortable and safe. And, specific to Little Man, right there to warm up a middle of the night bottle when it is needed (and 2-4 are needed through the night to maintain his weight). A few weeks of this and Little Man has finally started to sleep better, or at least not be so scared or lost when he does wake up. He wakes because he is hungry (outside of food reactions- those remain long nights of disturbed sleep and tummy aches).
The other day, I decided it was time to move his brother back in the room with him. The first thing T. said was "W. and J. will be so happy"!! And they were. Over a year ago, we didn't ask them to share a room with their little brother, and they didn't complain. But they sure showed their excitement when they got home from school and discovered the move! Just another piece of the everyday of this chronic illness that we don't question, that the boys dont' question, but when we can get some "normalcy" out of it, some reprieve from the extraordinary circumstances, we all have J.'s reaction "YES! Finally!"
Wednesday, April 13, 2011
Dr. Mom
I've written about this before, this Dr.Mom that is the team leader in our FPIES world. A mom-driven diagnosis. I just can't ever say enough about the information shared among moms, it is quite priceless.
In the beginning of our journey, I found Little Man's diagnosis by, yes- searching the Internet. But was I searching on open forums, support groups, and the like? No. I didn't know which ones to search in, and wasn't ready to narrow my search, I wanted to continue to keep my mind open as I searched for answers. I read medical journal articles, re-read several. This Protein Intolerance article was my nightly companion most nights- reading and re-reading the words, searching for something that made more sense with each step we took. With this article, and the help of some dietitian colleagues, I found FPIES. I read every medical journal article I could find on it, there were less than a dozen....not enough information except that it was rare and severe, and no test existed for it. I then viewed Jacks YouTube video and my heart sank, I cried, and I knew....right there on a YouTube video, someone could have been standing in my living room.
When you search FPIES in good-old Google...what comes up in between all the medical journal articles? Kids with Food Allergies forums, Baby Center FPIES community, personal blogs (now numbering over 25, were around 5 in number), even a community on Facebook. I began to read through these posts, but did not feel we "belonged" without a diagnosis. I made a few postings in the facebook group, and this is how I was led to CHOP....by a fellow mom. A mom now working diligently to change this very scenario about FPIES. Change for more awareness made, more support given, and more research done. Research guided by families, by the moms going through this day by day. She, with CHOP, established the FPIES United Family Fund. This fund, that we are raising money for to accomplish those goals.
Shortly before our trip to CHOP, I got brave and posted our full story on babycenter and asked for feedback. Immediately, the other moms replied with their experiences - some that mirrored ours, others more severe.
One mom, as I kept reading posts, seemed to me, to have a unique understanding of food and this awful illness. I sent her a message and asked about food trials and gut rest (we had been doing gut rest for months with no baseline found on elemental formula). I still have that message- I printed it out. The information she gave me changed the course of how I began to view this awful allergy. It gave me more to research, it gave me a pieces of empowerment. This is about food, I know food...or at least I should....it is my career. But I didn't know food, I didn't know allergy. Not in the way this allergy presents. This was a revolutionary moment for me with the battle I was facing myself with the medical community to recognize my son's complex condition. I have a mere 2yr.nutrition degree, with ~15years experience, not to mention 10+yrs experience as a mom, and what I thought I knew was not enough in the face of FPIES. If I can learn this illness....a medical doctor surely can.
But my reasons for learning the every aspect of this allergy are personal, I live it through my son. No text books, no research paper can teach you what a mother can about FPIES.
This mom, that first began to teach me about ingredients and recipes, and food trials and baselines- all learned from her experience with her daughter. Her doctor was helpful but not FPIES experienced, she learned every little thing on her own. Completely on her own, not only did she not have access to an FPIES knowledgeable doctor, her husband was stationed, they were living, out of the country while their daughter was beginning her FPIES journey. This FPIES mom and I have remained in close contact, she is my mentor, my go-to, my friend. Her blog, with much of her wealth of information can be found here: Baby B's FPIES Test Kitchen You can also find her weighing her insights and experiences with so many other knowledgeable FPIES mom's on Baby Center and Protein Intolerant Children (PIC).
Along this way, I have learned from so many other moms. My Australian Angel, dropping by to give advice always at the right time....and again, knowing more about the proprieties of food than I did at many turns in the road. Other moms met along the way shared invaluable information, pieced together that I could use, or simply learn from, for our puzzle. Information about food trials, reactions symptoms, shock symptoms, hospitalizations, raising siblings, coping.
As I continue my journey, another instrumental mom, who sometimes credits me for teaching her, really has it backwards as she has taught me more than I have taught her- I have no doubts. She has a way of reminding me to stretch my knowledge, past what I know, past what I've learned from Little Man....It must be the teacher in her, but mostly it is the friend in her. She is a professional FPIES mom. She is an inspiration for knowing what her daughter needs and not stopping until she finds a way to get it to her. Unlike the above mentioned mom, she had knowledgeable FPIES specialists helping in the begining of her daughters journey. Until the medical specialists ran out of information....why? Because it is a rare and complex disease, but also an individualized one. Armed with this knowledge, and a child growing in complexities, she continued her own research and has developed a plan specific to her child's needs. To read more of her journey and how she has helped her daughter, visit her blog here: Ellie Belly Updates.
Despite doctors having textbook knowledge and experiences of allergy, immunology, gastroenterology, nutrition....the one person that can help is the one that pulls that all together to fit each individual FPIES child. Right now, with this diagnosis, that one person is: Dr.Mom. No medical degree do we need, we are the professionals in FPIES.
We know our children best but this is most certainly not a call to not consult with doctors. FPIES is very complex- immunological reactions meet gut systems and flora, meets allergic responses, meets nourishment. So complex that doctors do not fully understand the true nature of it...until they learn it from our children. There are theories that there is a gene responsible for FPIES. That may be, but genes are turned off an on- and by what? By environment, by diet, by disease...our "toxic load". Where will we find answers to help FPIES children, while we wait for research to "catch up" to how fast this illness is growing? I think a whole body approach, a functional medicine approach, will undoubtedly be what brings our children health that extends past the years of controlling this allergy.
In the beginning of our journey, I found Little Man's diagnosis by, yes- searching the Internet. But was I searching on open forums, support groups, and the like? No. I didn't know which ones to search in, and wasn't ready to narrow my search, I wanted to continue to keep my mind open as I searched for answers. I read medical journal articles, re-read several. This Protein Intolerance article was my nightly companion most nights- reading and re-reading the words, searching for something that made more sense with each step we took. With this article, and the help of some dietitian colleagues, I found FPIES. I read every medical journal article I could find on it, there were less than a dozen....not enough information except that it was rare and severe, and no test existed for it. I then viewed Jacks YouTube video and my heart sank, I cried, and I knew....right there on a YouTube video, someone could have been standing in my living room.
When you search FPIES in good-old Google...what comes up in between all the medical journal articles? Kids with Food Allergies forums, Baby Center FPIES community, personal blogs (now numbering over 25, were around 5 in number), even a community on Facebook. I began to read through these posts, but did not feel we "belonged" without a diagnosis. I made a few postings in the facebook group, and this is how I was led to CHOP....by a fellow mom. A mom now working diligently to change this very scenario about FPIES. Change for more awareness made, more support given, and more research done. Research guided by families, by the moms going through this day by day. She, with CHOP, established the FPIES United Family Fund. This fund, that we are raising money for to accomplish those goals.
Shortly before our trip to CHOP, I got brave and posted our full story on babycenter and asked for feedback. Immediately, the other moms replied with their experiences - some that mirrored ours, others more severe.
One mom, as I kept reading posts, seemed to me, to have a unique understanding of food and this awful illness. I sent her a message and asked about food trials and gut rest (we had been doing gut rest for months with no baseline found on elemental formula). I still have that message- I printed it out. The information she gave me changed the course of how I began to view this awful allergy. It gave me more to research, it gave me a pieces of empowerment. This is about food, I know food...or at least I should....it is my career. But I didn't know food, I didn't know allergy. Not in the way this allergy presents. This was a revolutionary moment for me with the battle I was facing myself with the medical community to recognize my son's complex condition. I have a mere 2yr.nutrition degree, with ~15years experience, not to mention 10+yrs experience as a mom, and what I thought I knew was not enough in the face of FPIES. If I can learn this illness....a medical doctor surely can.
But my reasons for learning the every aspect of this allergy are personal, I live it through my son. No text books, no research paper can teach you what a mother can about FPIES.
This mom, that first began to teach me about ingredients and recipes, and food trials and baselines- all learned from her experience with her daughter. Her doctor was helpful but not FPIES experienced, she learned every little thing on her own. Completely on her own, not only did she not have access to an FPIES knowledgeable doctor, her husband was stationed, they were living, out of the country while their daughter was beginning her FPIES journey. This FPIES mom and I have remained in close contact, she is my mentor, my go-to, my friend. Her blog, with much of her wealth of information can be found here: Baby B's FPIES Test Kitchen You can also find her weighing her insights and experiences with so many other knowledgeable FPIES mom's on Baby Center and Protein Intolerant Children (PIC).
Along this way, I have learned from so many other moms. My Australian Angel, dropping by to give advice always at the right time....and again, knowing more about the proprieties of food than I did at many turns in the road. Other moms met along the way shared invaluable information, pieced together that I could use, or simply learn from, for our puzzle. Information about food trials, reactions symptoms, shock symptoms, hospitalizations, raising siblings, coping.
As I continue my journey, another instrumental mom, who sometimes credits me for teaching her, really has it backwards as she has taught me more than I have taught her- I have no doubts. She has a way of reminding me to stretch my knowledge, past what I know, past what I've learned from Little Man....It must be the teacher in her, but mostly it is the friend in her. She is a professional FPIES mom. She is an inspiration for knowing what her daughter needs and not stopping until she finds a way to get it to her. Unlike the above mentioned mom, she had knowledgeable FPIES specialists helping in the begining of her daughters journey. Until the medical specialists ran out of information....why? Because it is a rare and complex disease, but also an individualized one. Armed with this knowledge, and a child growing in complexities, she continued her own research and has developed a plan specific to her child's needs. To read more of her journey and how she has helped her daughter, visit her blog here: Ellie Belly Updates.
Despite doctors having textbook knowledge and experiences of allergy, immunology, gastroenterology, nutrition....the one person that can help is the one that pulls that all together to fit each individual FPIES child. Right now, with this diagnosis, that one person is: Dr.Mom. No medical degree do we need, we are the professionals in FPIES.
We know our children best but this is most certainly not a call to not consult with doctors. FPIES is very complex- immunological reactions meet gut systems and flora, meets allergic responses, meets nourishment. So complex that doctors do not fully understand the true nature of it...until they learn it from our children. There are theories that there is a gene responsible for FPIES. That may be, but genes are turned off an on- and by what? By environment, by diet, by disease...our "toxic load". Where will we find answers to help FPIES children, while we wait for research to "catch up" to how fast this illness is growing? I think a whole body approach, a functional medicine approach, will undoubtedly be what brings our children health that extends past the years of controlling this allergy.
Tuesday, April 12, 2011
Fundraiser for Research
Little Man is now 22mo.old and was diagnosed with FPIES at 11mo.at CHOP; although he had chronic illness for months prior to the diagnosis. Samuel is our 4th child, 2 of our other boys had milk protein intolerances so when Samuel started to show sensitivity to my breast milk, (gassy, "colicky", spit-up, loose stools, disturbed sleep) we assumed he had the same troubles with milk. A trial of formula confirmed this, with projectile vomiting and diarrhea and an increase of his intolerances. Reflux crept in, so we tried to add rice cereal to his diet, thinking this would control the reflux activity of a breast-fed only baby. He tolerated this for awhile and then started to refuse it, had increased spit up, fussiness, disturbed sleep, increased reflux. This was the course of things for the next few months- every effort we tried to control his symptoms, resulted in him getting progressively worse.
We consulted our pediatrician at 6mo.; with a referral to gastroenterology shortly after as he began to fall significantly on the growth chart despite a no-milk/no-soy/no-wheat elimination diet. He underwent his first scopes, which ruled out Celiac disease and EosinophilicEsophagitis, but found non-specific inflammation and lymph nodular hyperplasia. We took him off of breast milk and all foods and put him on a strict elemental formula-only diet (Elecare followed by Neocate). For Samuel, this is when things went from bad to worse.
Samuel stayed exclusively on the elemental diet for 2 mos. We were advised that his intestinal inflammation would be healed and could re-start him on foods. We started with rice....because no one is allergic to rice, right? We quickly got our answer after a tiny handful of rice puffs brought on days of vomiting. Even after recovering from the rice reaction, Samuel continued to be sick on a Neocate only diet. He would vomit so violently when we tried to give him Neocate Nutra- the retching- stomach-emptying-vomiting that came with this elemental based-medical "food" was un-nerving.
We knew something was horribly wrong...but specialists couldn't help because no one had heard of this thing called FPIES. I researched day and night, read every journal article I could find, brought everything to our pediatrician...and then decided we needed to see a specialist familiar with this rare illness, if we had any hope of a direction. We went to CHOP, we traveled from Minnesota to Pennsylvania in an RV loaned from friends (bless their hearts) with our 4 children and got confirmation of the diagnosis of FPIES. We returned, hopeful we could finally have a path to wellness for our little man; only to quickly find that even with a diagnosis- too little is known on how to treat this rare disease.
With Samuel getting increasingly sick from his formula, and a growing suspicion of corn allergy; we trialed corn. It is difficult to put into words how scary this time was for us as we watched his little body try to re-coop from such a violent reaction to such a small amount of food. We had no help, his doctors did not understood what was happening to him, or believe that it was indeed from the very things that were supposed to be nourishing him. He suffered from vomiting, diarrhea, lethargy, dehydration, high fevers, a febrile seizure...and still, the mechanisms of his disease were not understood by his doctors. Our Allergist at CHOP had advised he would continue to decline if we did not remove his triggers- in every form including the corn syrup of his formula, and medications. The mucous/bloody diapers, the continued vomiting, the refusal to eat, the spiraling from the inflammation in his intestines....would not stop until we removed his triggers from his diet.
We were scared, we held him all day, even in his sleep as we were afraid for him to sleep alone for fear we would lose him in his sleep. We needed to put him on another source of nourishment for his body to heal; unfortunately all formulas have either dairy or corn in them, this is when we started him on Hemp milk - he drank 50oz.the first day! His body perked up and he came out of the very scary stages he had been in for all those days....we knew then that we would need to move away from the elemental formula and build him one out of Hemp milk. He now thrives on Hemp milk formula but continues to not tolerate food introductions. His FPIES is chronic, and has become complex- it is "atypical"; his body cannot properly shut down its attacking mechanisms once it begins to perceive a food as a toxin. I continue to research daily into his mechanisms and complexities. More medical research is needed into this rare disease so that other infants do not need to experience such complexities from this diagnosis. So that recognition of it is a reality in doctor's offices, and treatment protocols are uniformly established and begun immediately. So that support is found in specialist offices. So that everybody suffers a little less and eats a little more.
We consulted our pediatrician at 6mo.; with a referral to gastroenterology shortly after as he began to fall significantly on the growth chart despite a no-milk/no-soy/no-wheat elimination diet. He underwent his first scopes, which ruled out Celiac disease and EosinophilicEsophagitis, but found non-specific inflammation and lymph nodular hyperplasia. We took him off of breast milk and all foods and put him on a strict elemental formula-only diet (Elecare followed by Neocate). For Samuel, this is when things went from bad to worse.
Samuel stayed exclusively on the elemental diet for 2 mos. We were advised that his intestinal inflammation would be healed and could re-start him on foods. We started with rice....because no one is allergic to rice, right? We quickly got our answer after a tiny handful of rice puffs brought on days of vomiting. Even after recovering from the rice reaction, Samuel continued to be sick on a Neocate only diet. He would vomit so violently when we tried to give him Neocate Nutra- the retching- stomach-emptying-vomiting that came with this elemental based-medical "food" was un-nerving.
We knew something was horribly wrong...but specialists couldn't help because no one had heard of this thing called FPIES. I researched day and night, read every journal article I could find, brought everything to our pediatrician...and then decided we needed to see a specialist familiar with this rare illness, if we had any hope of a direction. We went to CHOP, we traveled from Minnesota to Pennsylvania in an RV loaned from friends (bless their hearts) with our 4 children and got confirmation of the diagnosis of FPIES. We returned, hopeful we could finally have a path to wellness for our little man; only to quickly find that even with a diagnosis- too little is known on how to treat this rare disease.
With Samuel getting increasingly sick from his formula, and a growing suspicion of corn allergy; we trialed corn. It is difficult to put into words how scary this time was for us as we watched his little body try to re-coop from such a violent reaction to such a small amount of food. We had no help, his doctors did not understood what was happening to him, or believe that it was indeed from the very things that were supposed to be nourishing him. He suffered from vomiting, diarrhea, lethargy, dehydration, high fevers, a febrile seizure...and still, the mechanisms of his disease were not understood by his doctors. Our Allergist at CHOP had advised he would continue to decline if we did not remove his triggers- in every form including the corn syrup of his formula, and medications. The mucous/bloody diapers, the continued vomiting, the refusal to eat, the spiraling from the inflammation in his intestines....would not stop until we removed his triggers from his diet.
We were scared, we held him all day, even in his sleep as we were afraid for him to sleep alone for fear we would lose him in his sleep. We needed to put him on another source of nourishment for his body to heal; unfortunately all formulas have either dairy or corn in them, this is when we started him on Hemp milk - he drank 50oz.the first day! His body perked up and he came out of the very scary stages he had been in for all those days....we knew then that we would need to move away from the elemental formula and build him one out of Hemp milk. He now thrives on Hemp milk formula but continues to not tolerate food introductions. His FPIES is chronic, and has become complex- it is "atypical"; his body cannot properly shut down its attacking mechanisms once it begins to perceive a food as a toxin. I continue to research daily into his mechanisms and complexities. More medical research is needed into this rare disease so that other infants do not need to experience such complexities from this diagnosis. So that recognition of it is a reality in doctor's offices, and treatment protocols are uniformly established and begun immediately. So that support is found in specialist offices. So that everybody suffers a little less and eats a little more.
Monday, April 11, 2011
Was that mud?
Or a piece of Oreo cookie crumb your brothers had for a snack this afternoon?
Yesterday, the weather was so beautiful (hot even!), but Little Man hasn't been feeling well so we were hanging out together- inside, outside, back inside....not far from my side. His brothers were running, racing, playing tag, playing "army guys", playing football...run, run, run. They came in to have a snack and Little Man was with me downstairs. I ok'd them to have some Oreo's for a treat. I could hear the giggles from downstairs. Little man had no interest in going upstairs, so we stayed put. Later, I went upstairs to make him a bottle- with him of course a few steps behind me....whining as he had been doing most of the day (he just hasn't been "right" since the ProBioGold symptoms. I called the company and the inactive ingredients are the same as the probiotic (CD-biotic from the same company) that he is on. So, have to assume it one of the strains that his body was not agreeing with.
He stopped whining, I look back- he was picking something off the floor. Something I passed right by- thinking it was mud from the boys shoes - tracked from outside on their snack break....I wasn't even thinking it might be Oreo....until it was on his tongue....
I swiped it from his tongue and thought- maybe it's just mud? I got most of it, right? What if it wasn't mud?
I smelled it, it didn't have a smell- does that mean it's mud? Arg....just lick it. I licked it. Oreo, not mud....
He screamed for the next 2hrs....nothing was working- his brothers tried soothing him, they recognized the scream.....
Finally, after about 2hrs., he accepted some distraction from their playing and calmed down. I waited to see if today's diaper would give us confirmation of his reaction (from an Oreo cookie crumb sitting on his tongue!). There was no diaper. That has happened before, that the reaction induces a bit of constipation- I suspect it is from the dehydration shift happening in his body.
He is doing ok today, no major symptoms- just still re-cooping from whatever the ProBioGold did to his body. I have ordered some stool studies to test for his microflora and yeast. I hope this will provide us a few additional clues while moving forward.
Yesterday, the weather was so beautiful (hot even!), but Little Man hasn't been feeling well so we were hanging out together- inside, outside, back inside....not far from my side. His brothers were running, racing, playing tag, playing "army guys", playing football...run, run, run. They came in to have a snack and Little Man was with me downstairs. I ok'd them to have some Oreo's for a treat. I could hear the giggles from downstairs. Little man had no interest in going upstairs, so we stayed put. Later, I went upstairs to make him a bottle- with him of course a few steps behind me....whining as he had been doing most of the day (he just hasn't been "right" since the ProBioGold symptoms. I called the company and the inactive ingredients are the same as the probiotic (CD-biotic from the same company) that he is on. So, have to assume it one of the strains that his body was not agreeing with.
He stopped whining, I look back- he was picking something off the floor. Something I passed right by- thinking it was mud from the boys shoes - tracked from outside on their snack break....I wasn't even thinking it might be Oreo....until it was on his tongue....
I swiped it from his tongue and thought- maybe it's just mud? I got most of it, right? What if it wasn't mud?
I smelled it, it didn't have a smell- does that mean it's mud? Arg....just lick it. I licked it. Oreo, not mud....
He screamed for the next 2hrs....nothing was working- his brothers tried soothing him, they recognized the scream.....
Finally, after about 2hrs., he accepted some distraction from their playing and calmed down. I waited to see if today's diaper would give us confirmation of his reaction (from an Oreo cookie crumb sitting on his tongue!). There was no diaper. That has happened before, that the reaction induces a bit of constipation- I suspect it is from the dehydration shift happening in his body.
He is doing ok today, no major symptoms- just still re-cooping from whatever the ProBioGold did to his body. I have ordered some stool studies to test for his microflora and yeast. I hope this will provide us a few additional clues while moving forward.
Saturday, April 9, 2011
It does not define us...
It is natural to pull away from things we don't understand, even to be a little afraid. A friend/family member has a little one with a chronic illness too complex to keep up with, so you don't say anything because - where are the words? The words they lacks to explain how it feels and the words you lack to express how much you care. What if you say the wrong thing? What if you say something offensive?
Let me be the voice of a mom of a child with a chronic illness and say that if your thoughts, prayers and encouragement are coming from a place of love and support- there is no such thing as saying the wrong thing. Your words will never be offensive, your encouragement will always be appreciated, and your prayers will always be felt.
I have a dear friend, who in the beginning of this- didn't ask how she could help, she just helped in ways she would want to be helped if it were her in the situation. She has stayed by my side through all the many ups and downs of this chronic illness of my son that has rocked our worlds. She grounds me, she knows "Joy" is still there- even if buried under the weight of FPIES some days. We talk about "normal" things in life...and I enjoy it. Not only do I enjoy it, I am thankful to her for it. I still have "normal" things to worry about, to get done in a day, to think about...I have 3 other boys with all of their individual growing needs and personalities; I have a husband with whom I share a history stronger than a chronic illness but it still bends us some days; I have a large extended family who, without their compassion and understanding of our place right now, we would fall apart from; I have supportive friends- near and far, whose support and prayers we feel daily.
One of the main reasons I want to do the benefit for Sam & FPIES is to raise awareness, not only of what FPIES is and looks like for those that don't know; but of what our life is within it. To help others understand it even more, and that even though it encompasses a large piece of our everyday lives right now - to keep Little man thriving, growing, and happy; it does not define us. We are just a family- made of the same people we were before FPIES- wading our way through this in the same ways anyone would if they were in our shoes.
Let me be the voice of a mom of a child with a chronic illness and say that if your thoughts, prayers and encouragement are coming from a place of love and support- there is no such thing as saying the wrong thing. Your words will never be offensive, your encouragement will always be appreciated, and your prayers will always be felt.
I have a dear friend, who in the beginning of this- didn't ask how she could help, she just helped in ways she would want to be helped if it were her in the situation. She has stayed by my side through all the many ups and downs of this chronic illness of my son that has rocked our worlds. She grounds me, she knows "Joy" is still there- even if buried under the weight of FPIES some days. We talk about "normal" things in life...and I enjoy it. Not only do I enjoy it, I am thankful to her for it. I still have "normal" things to worry about, to get done in a day, to think about...I have 3 other boys with all of their individual growing needs and personalities; I have a husband with whom I share a history stronger than a chronic illness but it still bends us some days; I have a large extended family who, without their compassion and understanding of our place right now, we would fall apart from; I have supportive friends- near and far, whose support and prayers we feel daily.
One of the main reasons I want to do the benefit for Sam & FPIES is to raise awareness, not only of what FPIES is and looks like for those that don't know; but of what our life is within it. To help others understand it even more, and that even though it encompasses a large piece of our everyday lives right now - to keep Little man thriving, growing, and happy; it does not define us. We are just a family- made of the same people we were before FPIES- wading our way through this in the same ways anyone would if they were in our shoes.
A walk to the Park....
Spring is creeping it's way through the winter here. We live a block and a half or so away from our neighborhood park, and the boys all love to take walks there. The other day, the weather was beautiful so we did just that. We weren't the only ones, kids were coming from all over the neighborhood to also enjoy the park that has been buried under snow for so many months.
We get near the park, Little man, who had been riding in the stroller, insisted on getting out and walking the rest of the way, or rephrase that- running! The park has a hill and he is hesitant as he begins to stumble, he looks back and reaches out for me....and then pulls away...he wants to do it himself. I pull back, half surprised at his independence, and half beaming with pride that despite everything he is going through, he is developing on track. After all, he has these big brothers to keep up with!
We get closer to the park, and I notice the other kids who had been approaching are all holding their afternoon snacks...graham crackers clutched in the hands of a small group of 1-2yr.olds (someones home daycare). I can't help it, I say "oh no" out loud- not loud enough for anyone but my 10yr.old walking near me to hear; but that was enough. He looked up and immediately saw, and knew, what I was talking about. "I'll watch him mom". I didn't ask, but he wanted to do it. He took it on himself to stand guard and follow his brothers steps to assure no accidents happen. He also discovered a recently discarded ice cream treat and some other candy wrappers. Thankfully, Little man did not even notice. He is past the stage of putting everything unknown into his mouth (thank goodness!) and he is approaching much better understanding of what he can and can't have...even saying "mine" to things that are ok for him to have. Which, again makes me surprised at his independence and proud of him all in the same moments. I can't help but feel a little bit sad though too, that we even have to teach him how food is "danger"...especially when everyone else is eating it.
We get near the park, Little man, who had been riding in the stroller, insisted on getting out and walking the rest of the way, or rephrase that- running! The park has a hill and he is hesitant as he begins to stumble, he looks back and reaches out for me....and then pulls away...he wants to do it himself. I pull back, half surprised at his independence, and half beaming with pride that despite everything he is going through, he is developing on track. After all, he has these big brothers to keep up with!
We get closer to the park, and I notice the other kids who had been approaching are all holding their afternoon snacks...graham crackers clutched in the hands of a small group of 1-2yr.olds (someones home daycare). I can't help it, I say "oh no" out loud- not loud enough for anyone but my 10yr.old walking near me to hear; but that was enough. He looked up and immediately saw, and knew, what I was talking about. "I'll watch him mom". I didn't ask, but he wanted to do it. He took it on himself to stand guard and follow his brothers steps to assure no accidents happen. He also discovered a recently discarded ice cream treat and some other candy wrappers. Thankfully, Little man did not even notice. He is past the stage of putting everything unknown into his mouth (thank goodness!) and he is approaching much better understanding of what he can and can't have...even saying "mine" to things that are ok for him to have. Which, again makes me surprised at his independence and proud of him all in the same moments. I can't help but feel a little bit sad though too, that we even have to teach him how food is "danger"...especially when everyone else is eating it.
Thursday, April 7, 2011
Where are the words?
This blog serves as a journal of our FPIES journey, but it also serves as my therapy. I way to get the thoughts out, face them, grieve them, cope with them. But where are the words for what it feels like to really go through the day to day with an FPIES child? The words that describe what goes through my heart?
And then I see them.....written by a fellow FPIES mom....words like "most of all tired of this fight that prevents me from being all that I can for my family" and "...we try to be a united front but my goodness, a child's chronic illness will definitely take it's toll on every aspect of your family life"...."when both parents are filling everyone else's bucket, there is little left over"....These are the words from a fellow mom I've spoke of before....her family has already given us so much, giving their son's appointment slot at the PCRCD and taking the later date one. And now, without even knowing she just gave to me again. She put words to my recent heavy heart, well-written, descriptive language to the hardships of raising a family through a rare, little understood, chronic illness. Words that I read over and over, choking back the tears.....we are not alone....
Her words are here: Somethings Gotta Give.
And then I see them.....written by a fellow FPIES mom....words like "most of all tired of this fight that prevents me from being all that I can for my family" and "...we try to be a united front but my goodness, a child's chronic illness will definitely take it's toll on every aspect of your family life"...."when both parents are filling everyone else's bucket, there is little left over"....These are the words from a fellow mom I've spoke of before....her family has already given us so much, giving their son's appointment slot at the PCRCD and taking the later date one. And now, without even knowing she just gave to me again. She put words to my recent heavy heart, well-written, descriptive language to the hardships of raising a family through a rare, little understood, chronic illness. Words that I read over and over, choking back the tears.....we are not alone....
Her words are here: Somethings Gotta Give.
Sunday, April 3, 2011
Research
Having a child with FPIES leads to daily research...research we don't even realize we are doing. Research and experiments to see what foods they can tolerate, research to find which probiotic to use, which medication they can tolerate, do they need an enzyme, why is his iron low, which doctors are the most FPIES knowledgeable, what that test means, what scope results tells us, which foods are safe, which symptoms mean trigger and which ones are intolerance's or related to a cold or a 'normal' toddler behavior....it is every.single.day. If it isn't being played out, it is on my mind. What is our next step, where do I need to focus my research.
It first happened last fall when we saw a GI doctor on 2nd consult, he called Little Man "FPIES plus"...he has FPIES to some proteins but something more is going on....but what is that? My research led me to Non-IgE food allergy. It appears the foods he doesn't have FPIES to, he risks Non-IgE allergy to. Non-IgE allergy is a protein intolerance, of which FPIES is the severe end of the spectrum (in my opinion). But how do we avoid his Non-IgE protein intolerant responses from becoming FPIES trigger reactions?
A visit to the PCRCD with Dr.J and her advice is to correct the gut flora- re-establish his gut homeostasis with probiotics, and enzymes if needed (Little man has not been advised to start enzymes as his doctors fear he will react to them at this time- it is something we will re-explore in the future). Dr.J was even concerned he may react to a probiotic. She even gave him an oral steroid as her experience was telling her, he may need this to even tolerate the probiotic to re-establish his gut flora to achieve gut homeostasis, and not be so reactive to all foods. As my last post illustrates, he did not tolerate the probiotic. Now what? Oral steroids? I am not sure. Steroids can wreck havoc on gut flora too.
We go to see an Immunologist tomorrow, maybe we'll find a few more answers there.....but I have felt the need to bump up my research once again- to search for next steps to explore our little man's "FPIES plus".
In the midst of researching next steps, I am also helping with Little Man's Benefit/Fundraiser. I have already received so much help- from my sister, and a fellow FPIES mom who made the fliers you see/will see displayed. I am so very grateful for the community involvement for supporting our family through this difficult time. The goal of the benefit is to raise awareness, and share with our community the story of FPIES in meeting our son. The goal of the fundraiser to raise funds for CHOP research; so that moms like me do not have to research every step of the way, so that doctors are better educated and aware of the symptoms and complexity's of this allergy, so that research can begin to see what the parents see in the day to day of FPIES symptoms, reactions, intolerance's....our daily research. I have hopes that the CHOP research will pick up where other studies have left off. Past research has already brought us to FPIES being a T-cell response, a Non-IgE food allergy. Research has begun to define the Tcells and cytokines involved in these FPIES responses. More research is needed on the immunological responses, on genetics, on allergy, on the guts role in FPIES. Although there are little current FPIES specific study's being conducted, there are studies being done on oral food challenges (at Mt.Sinai), and on T-cell mediated responses (across the country) as well as the Non-IgE food allergy cytokine breakdown (at PCRCD). For more information on research being done on Non-IgE food allergy that applies to FPIES read here for information on the research currently being conducted at the PCRCD.
CHOP: "Hope Lives Here". Even if Little man will not benefit directly from the studies we are raising money for....FPIES will benefit from Little man. The research will be important to defining FPIES, to defining better treatment protocols, so that even if a child with Little man's "FPIES plus" presents in a specialist office, if FPIES is well-defined and treated....maybe, just maybe....the symptoms that arise from it can be well addressed before they become complex.
It first happened last fall when we saw a GI doctor on 2nd consult, he called Little Man "FPIES plus"...he has FPIES to some proteins but something more is going on....but what is that? My research led me to Non-IgE food allergy. It appears the foods he doesn't have FPIES to, he risks Non-IgE allergy to. Non-IgE allergy is a protein intolerance, of which FPIES is the severe end of the spectrum (in my opinion). But how do we avoid his Non-IgE protein intolerant responses from becoming FPIES trigger reactions?
A visit to the PCRCD with Dr.J and her advice is to correct the gut flora- re-establish his gut homeostasis with probiotics, and enzymes if needed (Little man has not been advised to start enzymes as his doctors fear he will react to them at this time- it is something we will re-explore in the future). Dr.J was even concerned he may react to a probiotic. She even gave him an oral steroid as her experience was telling her, he may need this to even tolerate the probiotic to re-establish his gut flora to achieve gut homeostasis, and not be so reactive to all foods. As my last post illustrates, he did not tolerate the probiotic. Now what? Oral steroids? I am not sure. Steroids can wreck havoc on gut flora too.
We go to see an Immunologist tomorrow, maybe we'll find a few more answers there.....but I have felt the need to bump up my research once again- to search for next steps to explore our little man's "FPIES plus".
In the midst of researching next steps, I am also helping with Little Man's Benefit/Fundraiser. I have already received so much help- from my sister, and a fellow FPIES mom who made the fliers you see/will see displayed. I am so very grateful for the community involvement for supporting our family through this difficult time. The goal of the benefit is to raise awareness, and share with our community the story of FPIES in meeting our son. The goal of the fundraiser to raise funds for CHOP research; so that moms like me do not have to research every step of the way, so that doctors are better educated and aware of the symptoms and complexity's of this allergy, so that research can begin to see what the parents see in the day to day of FPIES symptoms, reactions, intolerance's....our daily research. I have hopes that the CHOP research will pick up where other studies have left off. Past research has already brought us to FPIES being a T-cell response, a Non-IgE food allergy. Research has begun to define the Tcells and cytokines involved in these FPIES responses. More research is needed on the immunological responses, on genetics, on allergy, on the guts role in FPIES. Although there are little current FPIES specific study's being conducted, there are studies being done on oral food challenges (at Mt.Sinai), and on T-cell mediated responses (across the country) as well as the Non-IgE food allergy cytokine breakdown (at PCRCD). For more information on research being done on Non-IgE food allergy that applies to FPIES read here for information on the research currently being conducted at the PCRCD.
CHOP: "Hope Lives Here". Even if Little man will not benefit directly from the studies we are raising money for....FPIES will benefit from Little man. The research will be important to defining FPIES, to defining better treatment protocols, so that even if a child with Little man's "FPIES plus" presents in a specialist office, if FPIES is well-defined and treated....maybe, just maybe....the symptoms that arise from it can be well addressed before they become complex.
Oh boy, you're heavy!
But I'm not complaining, really! Except when he gets clingy from reaction symptoms....
We haven't had a weight check in a few weeks, with the cold he developed and waiting out results from Dr.J's research, we haven't even been to a doctors office! It may be a record for us! I am curious as to his weight....because I am sure he has gained. Last week, I even had to get out the 2T tote and put away the 18mo. clothes (finally since he is 21mo.old) and get out the 24mo/2T clothes! He has a filled out belly and cheeks- I look forward to finding out how much he has gained since our last check!
I hope the last few days don't cause him to slide backwards too much, he seemed improved today but he appears to have reacted to the probiotic switch (from Kirkman's CD-Biotic to Kirkmans ProBioGold). I am still unsure of what he reacted to in it- if it is a strain or a filler (I only assumed it was made the same as the CD Biotic which he was tolerating- bad mommy mistake!). But, as with what defines FPIES- it is trial and error. I was giving him smaller doses, being that there were new strains that he hasn't had before (different lactobacillus ones and a new one- streptoccus thermophilus. A fellow FPIES mom warned me to be cautious with a probiotic that contains that strain, so we were being cautious...trial and error. The first day, I noticed blood in his diaper- although he has a fissure so it isn't odd to see blood in his diaper. I also notice his stool isn't as soft as it should be given that probiotics help regulate things. That night, he woke up crying....I had heard him coughing, I go to him and he is trying to get his shirt off and hand me his blanket- he had thrown up on his pillow, blanket and shirt. It wasn't a lot- more than spit up but less than FPIES trigger vomit. Was it from the cough or is this the beginning of a reaction? He had had a few of these cough/throw up already earlier in the week. We had been trying to see if he could tolerate the plum organic peaches again- in his merry muffins; but it has been 2 days since his last nibble of that...that otherwise appears to be going well, none of the symptoms that he had after his multivitamin fail when I was concerned his body couldn't tolerate even his safe foods (millet and peaches) - as I said at that time, maybe there is something to the fact that he needs only very low fiber foods as to not irritate the intestinal lining. Regardless, all of his prior cold symptoms had resolved so I thought odd for him to have this cough but did just decide it must be from the cough. Little man's daddy and I discuss how he has been calmer that day, noting maybe even lethargic. I remained hopeful that it was just calmness. We kept busy the next day (Friday) and he was great all morning- playing, smiling, a visit to some dear friends and they were impressed at how strong and healthy and happy he looks since they last saw him. We had a great morning. He came home and struggled to settle down for his nap....too much excitement? Finally got him to sleep and he slept well, even through a playdate for the other boys (6 boys in the house!) Actually, we're very lucky to have such great friends as their boys are very well behaved and no one made any noise to wake up Little Man. He woke from his nap a little clingy, but not surprising since we had company; he warmed up nicely and began to play a little. That evening he remained tired, got very fussy and clingy. I decided he was heading in the wrong direction with these probiotics and I was getting too nervous. He hadn't eaten well that day either- why? So, yesterday we took a day off from them but his body was still progressing....is it the probiotic or something else? I suppose if it is the flora that he is reacting to, it might make sense that it is taking awhile to get out of his system. I am really not sure but Saturday was a beautiful day and he enjoyed an hour or two of it but otherwise was clingy, whiny, fatigued, maybe even feverish, and in our arms. He ate poorly and last night he didn't even wet through a normal diaper (where typically I have to change his nighttime diaper once during the night). In the morning, he had a loose diaper. Enough, I'm calling it a fail....but what is he failing? It was progressive, I don't feel they were "die off" symptoms, but maybe.....but not worth risking either. He gets so sick from fails, I can't push it when there are this many off symptoms. Today, he returned to a baseline for the most part; he ate A LOT today- and then had a 30min. screaming session that ended in puking before finally relaxing into sleep. What is going on? Only time will tell. He hasn't had probiotic in 2 days, and we will see how he does backing off of them for a bit. I am sensing now is the right time to do the stool tests I spoke about previously. We can't afford them any better than we could a month ago but Little Man can't afford to be sick from this trial and error either. He also can't afford too much longer with no food trials. He needs this tiny menu we keep striving for....
We will get a weight check tomorrow at the Immunology appointment, stay tuned!
We haven't had a weight check in a few weeks, with the cold he developed and waiting out results from Dr.J's research, we haven't even been to a doctors office! It may be a record for us! I am curious as to his weight....because I am sure he has gained. Last week, I even had to get out the 2T tote and put away the 18mo. clothes (finally since he is 21mo.old) and get out the 24mo/2T clothes! He has a filled out belly and cheeks- I look forward to finding out how much he has gained since our last check!
I hope the last few days don't cause him to slide backwards too much, he seemed improved today but he appears to have reacted to the probiotic switch (from Kirkman's CD-Biotic to Kirkmans ProBioGold). I am still unsure of what he reacted to in it- if it is a strain or a filler (I only assumed it was made the same as the CD Biotic which he was tolerating- bad mommy mistake!). But, as with what defines FPIES- it is trial and error. I was giving him smaller doses, being that there were new strains that he hasn't had before (different lactobacillus ones and a new one- streptoccus thermophilus. A fellow FPIES mom warned me to be cautious with a probiotic that contains that strain, so we were being cautious...trial and error. The first day, I noticed blood in his diaper- although he has a fissure so it isn't odd to see blood in his diaper. I also notice his stool isn't as soft as it should be given that probiotics help regulate things. That night, he woke up crying....I had heard him coughing, I go to him and he is trying to get his shirt off and hand me his blanket- he had thrown up on his pillow, blanket and shirt. It wasn't a lot- more than spit up but less than FPIES trigger vomit. Was it from the cough or is this the beginning of a reaction? He had had a few of these cough/throw up already earlier in the week. We had been trying to see if he could tolerate the plum organic peaches again- in his merry muffins; but it has been 2 days since his last nibble of that...that otherwise appears to be going well, none of the symptoms that he had after his multivitamin fail when I was concerned his body couldn't tolerate even his safe foods (millet and peaches) - as I said at that time, maybe there is something to the fact that he needs only very low fiber foods as to not irritate the intestinal lining. Regardless, all of his prior cold symptoms had resolved so I thought odd for him to have this cough but did just decide it must be from the cough. Little man's daddy and I discuss how he has been calmer that day, noting maybe even lethargic. I remained hopeful that it was just calmness. We kept busy the next day (Friday) and he was great all morning- playing, smiling, a visit to some dear friends and they were impressed at how strong and healthy and happy he looks since they last saw him. We had a great morning. He came home and struggled to settle down for his nap....too much excitement? Finally got him to sleep and he slept well, even through a playdate for the other boys (6 boys in the house!) Actually, we're very lucky to have such great friends as their boys are very well behaved and no one made any noise to wake up Little Man. He woke from his nap a little clingy, but not surprising since we had company; he warmed up nicely and began to play a little. That evening he remained tired, got very fussy and clingy. I decided he was heading in the wrong direction with these probiotics and I was getting too nervous. He hadn't eaten well that day either- why? So, yesterday we took a day off from them but his body was still progressing....is it the probiotic or something else? I suppose if it is the flora that he is reacting to, it might make sense that it is taking awhile to get out of his system. I am really not sure but Saturday was a beautiful day and he enjoyed an hour or two of it but otherwise was clingy, whiny, fatigued, maybe even feverish, and in our arms. He ate poorly and last night he didn't even wet through a normal diaper (where typically I have to change his nighttime diaper once during the night). In the morning, he had a loose diaper. Enough, I'm calling it a fail....but what is he failing? It was progressive, I don't feel they were "die off" symptoms, but maybe.....but not worth risking either. He gets so sick from fails, I can't push it when there are this many off symptoms. Today, he returned to a baseline for the most part; he ate A LOT today- and then had a 30min. screaming session that ended in puking before finally relaxing into sleep. What is going on? Only time will tell. He hasn't had probiotic in 2 days, and we will see how he does backing off of them for a bit. I am sensing now is the right time to do the stool tests I spoke about previously. We can't afford them any better than we could a month ago but Little Man can't afford to be sick from this trial and error either. He also can't afford too much longer with no food trials. He needs this tiny menu we keep striving for....
We will get a weight check tomorrow at the Immunology appointment, stay tuned!
Friday, April 1, 2011
"Come Eat for Sam" Benefit
Samuel is now 21mo.old, and was diagnosed with FPIES at 11mo.at CHOP; although he had chronic illness for months prior to the diagnosis. Samuel is our 4th child, 2 of our other boys had milk protein intolerance's so when Samuel started to show sensitivity to my breast milk, (gassy, "colicky", spit-up, loose stools, disturbed sleep) we assumed he had the same troubles with milk. A trial of formula confirmed this, with projectile vomiting and diarrhea and an increase of his intolerance's. Reflux crept in, so we tried to add rice cereal to his diet, thinking this would control the reflux activity of a breast-fed only baby. He tolerated this for awhile and then started to refuse it, had increased spit up, fussiness, disturbed sleep, increased reflux. This was the course of things for the next few months- every effort we tried to control his symptoms, resulted in him getting progressively worse.
We consulted our pediatrician at 6mo.; with a referral to gastroenterology shortly after as he began to fall significantly on the growth chart despite a no-milk/no-soy/no-wheat elimination diet. He underwent his first scopes, which ruled out Celiac disease and EosinophilicEsophagitis, but found non-specific inflammation and lymph nodular hyperplasia. We took him off of breast milk and all foods and put him on a strict elemental formula-only diet (Elecare followed by Neocate). For Samuel, this is when things went from bad to worse.
Samuel stayed exclusively on the elemental diet for 2 mos. We were advised that his intestinal inflammation would be healed and could re-start him on foods. We started with rice....because no one is allergic to rice, right? We quickly got our answer after a tiny handful of rice puffs brought on days of vomiting. Even after recovering from the rice reaction, Samuel continued to be sick on a Neocate only diet. He would vomit so violently when we tried to give him Neocate Nutra- the retching- stomach-emptying-vomiting that came with this elemental based-medical "food" was un-nerving.
We knew something was horribly wrong...but specialists couldn't help because no one had heard of this thing called FPIES. I researched day and night, read every journal article I could find, brought everything to our pediatrician...and then decided we needed to see a specialist familiar with this rare illness, if we had any hope of a direction. We went to CHOP, we traveled from Minnesota to Pennsylvania in an RV loaned from friends (bless their hearts) with our 4 children and got confirmation of the diagnosis of FPIES. We returned, hopeful we could finally have a path to wellness for our little man; only to quickly find that even with a diagnosis- too little is known on how to treat this rare disease.
With Samuel getting increasingly sick from his formula, and a growing suspicion of corn allergy; we trialed corn. It is difficult to put into words how scary this time was for us as we watched his little body try to re-coop from such a violent reaction to such a small amount of food. We had no help, his doctors did not understood what was happening to him, or believe that it was indeed from the very things that were supposed to be nourishing him. He suffered from vomiting, diarrhea, lethargy, dehydration, high fevers, a febrile seizure...and still, the mechanisms of his disease were not understood by his doctors. Our Allergist at CHOP had advised he would continue to decline if we did not remove his triggers- in every form including the corn syrup of his formula, and medications. The mucous/bloody diapers, the continued vomiting, the refusal to eat, the spiraling from the inflammation in his intestines....would not stop until we removed his triggers from his diet.
We were scared, we held him all day, even in his sleep as we were afraid for him to sleep alone for fear we would lose him in his sleep. We needed to put him on another source of nourishment for his body to heal; unfortunately all formulas have either dairy or corn in them, this is when we started him on Hemp milk - he drank 50oz.the first day! His body perked up and he came out of the very scary stages he had been in for all those days....we knew then that we would need to move away from the elemental formula and build him one out of Hemp milk. He now thrives on Hemp milk formula but continues to not tolerate food introductions. His FPIES is chronic, and has become complex- it is "atypical"; his body cannot properly shut down its attacking mechanisms once it begins to perceive a food as a toxin. I continue to research daily into his mechanisms and complexities. More medical research is needed into this rare disease so that other infants do not need to experience such complexities from this diagnosis. So that recognition of it is a reality in doctor's offices, and treatment protocols are uniformly established and begun immediately. So that support is found in specialist offices. So that everybody suffers a little less and eats a little more.
Come Eat for Sam....Join us in our Fundraiser/Benefit Event!!
We consulted our pediatrician at 6mo.; with a referral to gastroenterology shortly after as he began to fall significantly on the growth chart despite a no-milk/no-soy/no-wheat elimination diet. He underwent his first scopes, which ruled out Celiac disease and EosinophilicEsophagitis, but found non-specific inflammation and lymph nodular hyperplasia. We took him off of breast milk and all foods and put him on a strict elemental formula-only diet (Elecare followed by Neocate). For Samuel, this is when things went from bad to worse.
Samuel stayed exclusively on the elemental diet for 2 mos. We were advised that his intestinal inflammation would be healed and could re-start him on foods. We started with rice....because no one is allergic to rice, right? We quickly got our answer after a tiny handful of rice puffs brought on days of vomiting. Even after recovering from the rice reaction, Samuel continued to be sick on a Neocate only diet. He would vomit so violently when we tried to give him Neocate Nutra- the retching- stomach-emptying-vomiting that came with this elemental based-medical "food" was un-nerving.
We knew something was horribly wrong...but specialists couldn't help because no one had heard of this thing called FPIES. I researched day and night, read every journal article I could find, brought everything to our pediatrician...and then decided we needed to see a specialist familiar with this rare illness, if we had any hope of a direction. We went to CHOP, we traveled from Minnesota to Pennsylvania in an RV loaned from friends (bless their hearts) with our 4 children and got confirmation of the diagnosis of FPIES. We returned, hopeful we could finally have a path to wellness for our little man; only to quickly find that even with a diagnosis- too little is known on how to treat this rare disease.
With Samuel getting increasingly sick from his formula, and a growing suspicion of corn allergy; we trialed corn. It is difficult to put into words how scary this time was for us as we watched his little body try to re-coop from such a violent reaction to such a small amount of food. We had no help, his doctors did not understood what was happening to him, or believe that it was indeed from the very things that were supposed to be nourishing him. He suffered from vomiting, diarrhea, lethargy, dehydration, high fevers, a febrile seizure...and still, the mechanisms of his disease were not understood by his doctors. Our Allergist at CHOP had advised he would continue to decline if we did not remove his triggers- in every form including the corn syrup of his formula, and medications. The mucous/bloody diapers, the continued vomiting, the refusal to eat, the spiraling from the inflammation in his intestines....would not stop until we removed his triggers from his diet.
We were scared, we held him all day, even in his sleep as we were afraid for him to sleep alone for fear we would lose him in his sleep. We needed to put him on another source of nourishment for his body to heal; unfortunately all formulas have either dairy or corn in them, this is when we started him on Hemp milk - he drank 50oz.the first day! His body perked up and he came out of the very scary stages he had been in for all those days....we knew then that we would need to move away from the elemental formula and build him one out of Hemp milk. He now thrives on Hemp milk formula but continues to not tolerate food introductions. His FPIES is chronic, and has become complex- it is "atypical"; his body cannot properly shut down its attacking mechanisms once it begins to perceive a food as a toxin. I continue to research daily into his mechanisms and complexities. More medical research is needed into this rare disease so that other infants do not need to experience such complexities from this diagnosis. So that recognition of it is a reality in doctor's offices, and treatment protocols are uniformly established and begun immediately. So that support is found in specialist offices. So that everybody suffers a little less and eats a little more.
Come Eat for Sam....Join us in our Fundraiser/Benefit Event!!
Also visit my Fundraising page: CHOP FPIES United Family Fund
Thanks for all the support!!
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