....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....
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