Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...
Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.
And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.
"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."
Wednesday, August 31, 2011
Before our son's diagnosis, it took many months to narrow down, and rule out, what was making him sick. Doing the research was empowering, finding other families going through the same experiences was like coming home. The support not only saved my soul but educated me.
I joined an amazing group of families going through similar experiences on support forums and began to see the need for this invaluable shared information to be compiled, and connected, for families just beginning their journey in FPIES. So much knowledge locked up in these support forums, now all sitting in my head, heavy in my heart that moms, like me, laying awake at night wondering what to do about the vomiting, about the crying, about the lack of weight gain, the weight loss, and what to FEED their child, their infant baby, and why is this so hard? and is there anyone else out there going through this?
I continued to learn more from the research that is available about FPIES and Non-IgE food allergy. There is so little known, much less understood about this rare allergy. A rare allergy that primarily affects infants at a time when you should be enjoying their sweet baby smells and not cleaning up vomit, a time when coos and giggles should be heard and not screams of pain; a time when you are enjoying being a mom instead of losing so much time in doctor visit after doctor visit.
This journey has been difficult, I know I share much of that here- not in pleas for sympathy but in sharing our story might help another family feel less alone. In raising awareness. Along this journey, I have met so many families. Families from other country's, families from all over this country, families with classic FPIES children, families that share Little Man's atypical FPIES symptoms, so many connections made, so many new friendships born. A common bond within a rare disease. A handful of these families shared a vision to create this Foundation. I am proud to be among the founding members of this great foundation. I will strive to help provide reliable medical information for families to connect with a team of doctors to help their FPIES child thrive, improved treatment plans to increase the quality of life for all children affected by this diagnosis, as well as supportive services for families struggling within the stages of this chronic illness.
Educate, Support, Empower. Join us at The FPIES Foundation
Tuesday, August 30, 2011
The plan for the next day is to see our Pediatrician and get a weight check, maybe labs, get refill Rx for his heparin for his line, discuss our CHOP visits, get FMLA paperwork filled out, discuss Vit.C supplement (that is making Sam an insomniac and some occasional irrational behavior but otherwise seems to be responding well to it). Ah! Good to be home. Hoping to get things moving again!
The pediatrician appointment went well, Little man weighs in at just 11kg (24.8#)- NOT moving which means no gains but also means no loss.
We discussed some of the plans for the next months, and agreed that plans need to be well defined before we start food trials. I need to work on writing up something that we can make sure everything is covered at the care conference with our GI and our Pediatrician to do this (define his care for food trials).
The basic outline of the plan is that he will be admitted next week sometime (likely Wednesday), he will begin TPN again to build him up a bit before the first trial; he will likely have a scope/colonscopy before the trial as well. We don't know yet what food(s) we will be trialing but I have some idea's in mind We discussed that he will be primarily in the hospital for quite a few weeks, maybe even 1-2months....it is hard to know- it will depend on his reactions and healing time between reactions, etc. We hope to be able to come home a bit between trials (if there is a "fail").
I'm so nervous and yet excited at the same time....could we actually get him a tiny menu??!
Saturday, August 27, 2011
The hematologist had a few things that could be looked into/ruled out- although acknowledged they weren't likely and actually just in research stages there at CHOP for defining diagnosis of....we will look into them when we get back home. But, really she just acknowledged that his FPIES is just this way- that he is either losing blood (in stools), or malabsorbing it. Being that he has the tendency for the atrophy and blunting, she feels this is a primary reason for the chronic nature of his malabsorption of iron leading to iron deficiency. She fully acknowledged that Hemp milk is a great source of iron, although it is a non-heme (not animal) source so that could contribute a little but she also said that even if he was getting heme (meat) sources- he would still have the malabsorption issues- no matter what was going in. She recommends he stay on iron all the time- if he doesn't tolerate the oral, then to continue IV iron and that once he gets a better diet- he may be able to decrease his Iv iron treatments frequency but that he would still need it.
It was refreshing to have doctors here at CHOP familiar with FPIES- they are treating the disease within the child, and not the parents. Listening to little man, listening to what I have to say as his voice.....
Tuesday, August 23, 2011
We had exciting news on our first day! Little man started walking again! He had lost some muscle tone/strength in his legs with the scurvy, it also seemed to be painful for a few days; so now he is having to learn to trust his legs again. Yesterday, he stood from kneeling (he has been crawling) and today he just walked unassisted/alone across the RV! He knew what he was doing and was excited about it too! He
continues to get stronger. And is so far, is tolerating the vitamin C dietary supplement we are giving him. He is also happier and has been talking more/new words- so overall doing really well and handling this long trip well.
It was a long day of appointments, but they went well. Allergy appt was quick as he confirms we are on track with his FPIES symptoms and that he clearly has more going on - pushing other reactions....he speculates the Sucrase-Isomaltose deficiency and deferred to GI for more input. Some insights he gave- tapioca is too closely related to rice (proteins/growing/etc) so is likely why he built up an FPIES response to that. Feels the FPIES responses are at the root of his intolerance's- but complicated by other factors. Ends with saying he believes my gut is right and that it is little man's gut that is causing these continued inability to tolerate foods.
The GI appt was long, made the day very long (but good); she agrees he has clear/classic FPIES and other things going on- which could be a combination of 4 other things: FPIES, auto-immune, metabolic, and/or intolerance's related to his sucrose-isomaltose deficiency and has recommendations/thoughts on how to proceed with each. She also agrees hematology should take some deeper looks at him. We were able to get that scheduled before we left the east coast.
The plan is for the GI is going to speak with the Allergist and they will coordinate some plans/guidelines for introducing foods and then speak with our regular GI as well as provide support while doing the food trials.....because as we all know- all plans look good and make sense on paper but once we start and he has symptoms- getting lost in what those symptoms are telling us is where we are always getting stuck. We discussed a lot about the development of his specific guidelines, using the objective data that he gives us (labs, stool tests, endoscopy,etc) before trial (while on baseline diet), during trials and after. She agrees that his PICC line is an ideal time to do these- to provide nutritional or IV support if he starts to "fall". She doesn't want to see steroids used to introduce foods because she feels he would just fail the food if/once steroid is removed.
It is a lot to process and I begin to take notes and formulate a plan....
Monday, August 15, 2011
Monday was a long day- many calls in...some good news, some not so much. Help from other FPIES mom friends, with one going the extra mile for support today, and we have 3 oral Vit.C supplements on the way to our house- I'm still not sure which one we'll go with long term but each one is a better gamble than a corn or tapioca derived one. Two of them are from acercola berry and one is from sago palm. And hopefully we won't need either right away as I pray the IV route will work out...and start tomorrow.
The plan is for a hospital admission at 11am, with a PICC lines placed sometime after and parenteral nutrition started. The IV Vit.C is being ordered. The morning arrives and we report in, he was taken down to have the PICC placed...
The next day was another long day in the hospital. It is so hard to be in the hospital, away from home and the other boys and our routine; add to that an irrational, inconsolable 2yr.old and an unsupportive team that tells you his allergies are "just intolerance's" and that not advancing his diet has resulted in life threatening conditions means you have to pull from all the coping mechanisms you have learned over the many months of this very frustrating disorder. Because to me, they are suggesting we are choosing to restrict his diet, when not a single day goes by that I don't dream of feeding him anything, something!
We are preparing for our trip to CHOP- being here is to give him life-saving Vit.C supplements via IV that his body was telling us was very essentially necessary. The decision was to place the PICC, since he needed the IV Vit.C, we may be able to do supplemental nutrition and other vitamins/minerals he may be low on (doesn't get in his restricted diet). We placed the PICC for a few reasons, but complimentary nutrition for catch up growth, possible steroid trial when we return from CHOP, nutrients like Vit.C and iron. He needs high dosages of Vit.C for at least 2weeks to fully turn around his deficiency (and subsequent scurvy) symptoms. We are leaving for CHOP on the weekend and we are unsure of an oral Vit.C. We have a few choices that I bought online that I am willing to give him for the week we are gone; and when we get back we hope to hear that Walgreens was successful in compounding a safe beet-derived Vit.C that will be ideal for the longer term for him (as long as he doesn't react to beet!). Pharmaceutical grade ascorbic acid is the better option for him, for dosing reasons, for purity and for long term.
I am anxious to get through the next few days and get to CHOP, where answers and support are (hopefully) waiting and we can return and get him on a better track.
Sunday, August 14, 2011
I bought some organic peaches Friday night and I prepared those into a puree and added water- and today we got him to drink at least a half of a cup!! It was probably only 2Tbsp of peach puree in water but something has got to be better than nothing....even if it is no where near enough.
We don't have the Vit.C lab result back yet- it could take a few more days but the level will confirm the Scurvy if it is there. It is odd that some of his other symptoms are decreasing but his leg weakness is increasing (hair isn't as dry, gums aren't as swollen, rash is gone....) but he is really weak- it seems to almost scare him, and he does seem to be in pain today so I gave him some of his compounded tylenol and his mood improved greatly.
Seeing him like this is so hard, and more than once we have been tempted to give him the darn Vit.C tablets we have sitting here - that are more than likely tapioca based. Here is what happened last fall when we gave him a Vit.C/Iron tablet- that we knew was corn free but we did not know it was made out of tapioca (we didn't even think to ask until after he reacted...another lesson learned; find out not only what ISN'T in the product but what IS! This is when we learned, from the Pharmacist that Vit.C (pharmaceutical grade) comes from: corn, tapioca, or beet (mainly corn).
It was September last year and our pediatrician wanted to start him on an iron supplement and we knew it had to be compounded; I asked her to put the order for Vit.C to be compounded with it. I knew he would need Vit.C, even if peaches gives him some. This is from my journal on how it went (2010):
Sept. 8, 2010: started iron/Vit.C = noted he had increased energy and took that as a good thing.
Sept.9: trouble sleeping, diaper had "reaction smell" and mucus.
Sept.10: Same- getting worse (took pic of diaper!)- yes I keep a "photo file of his FPIES symptoms, diapers and all!)
Sept.11: mucus continues in diaper and now has visible blood, sent Hemoccult and came back positive; clearly reacting to something. Stop Iron Rx.
Sept.12: very tired today, "blah"
Sept.13: hospital admission. Hemoglobin fell from 9.6 on 9/2 to 7.2 on 9/13!
We then found out the Vit.C was from tapioca and knew that is what he had reacted to. His hemoglobin continued to decline and by that Oct.29th- we were in the hospital again for a blood transfusion.
Tapioca fail (in July of last year) was a mystery reaction- much like soy...not much in the way of FPIES vomit, lots of diarrhea and lots of other symptoms; and one sick-sick little boy.
So, I'd almost rather it be from CORN than from tapioca!! Tapioca is scary....which is just another reason why it is so hard to push through trials- even if we don't get "classic" FPIES response symptoms- we get weird symptoms and what if it results in what soy or tapioca does? There is something strange going on in his immune system....I've been saying it all along- he has FPIES and something else going on in there....praying CHOP will help us get to the bottom of this.
And, for review: here is what happened when we "challenged" a corn derived Vit.C (in a multivitamin):
Jan. 4, 2011: first day of vitamin, had hiccups within an hour of taking it. Skin mottling started within 2hrs but his mood stayed good all morning. Took a long nap and awoke to a blow out diaper, lots of wet burps all afternoon and one in the evening that made him vomit a small amount. Very restless sleep all night. (and we kept going-we wanted this to work out!!)
Jan.5: has sores on his bottom and a red ring, stringy mucus in loose filled diaper.
Jan. 6: woke to a large blow out diaper, had another 2hrs later- slimy green with mucus. Mood still primarily good. Afternoon diaper (way more diapers than norm) had mucus and was very fussy and uncomfortable after, then at 7pm vomited repeatedly until emptied stomach and dry heaving. Rocked to sleep within a few hours and taking plain hemp milk and seems ok but wakes to have 3 explosive diapers through the night; and one right away in the morning full of mucus.
Jan.7,8,9: continues to have liquid, blowout, nasty diapers (5x/day), taking 70+oz/day, but unable to do lab draws on the 7th- but still has his PICC at that time for IV iron treatments and had labs drawn on the 9th and found to have significant dehydration (given IV saline with iron).
His hemoglobin didn't decline with this reaction but his weights did, and of course weeks of stomach aches, nasty diapers and disturbed sleep.
Now, which one do I choose? Tapioca derived Vit.C or Corn? Or wait until we can find another option? Just tonight on another search I found some further information about the IV Vit.C that warrants further checking on. Also, I need to check on a few sources found by fellow FPIES moms as well - a beet root one that looks really promising has my curiosity peaked. Hopefully we find something soon, and that he tolerates it.
Saturday, August 13, 2011
Could he use some complimentary nutrition right now? We already know he could, but he is holding his weight, he is eating, he got IV iron, and his nutrition labs are not coming back low - he is not being "malnourished"...his nutrition is not ideal. I KNOW that, I have always known that. I would give my legs to feed my child, to nourish his body without it hurting him.
The next morning, the team comes in and our Pediatrician exams little man- his daily assessment but also was paying particular attention to his fine hair, dry scalp, sore/red/inflamed gums, his joints....and he announces that they want to get another blood draw- a pause...really? My severely anemic child has already had 17cc's of blood (at least count) taken....he's gonna need a transfusion to replace all of this! But they want to run one more level...
A blood level of Vit.C....he might have scurvy!! His symptoms match and the ER physician who assessed and cared for him in the ER spoke with our pediatrician and suggested we run a vit.c level. I, of course, consent; and I am following- scurvy....this really could be it.
But now what? How do we get him Vit.C? I ask if we can do it IV.....I don't remember why he said we can't because they moved on quickly to "no, but we found...." They think they have found a non-corn based Vit.C supplement- because it isn't in corn syrup. Unfortunately, from prior experiences, I know better. I instantly said "No"....no, you did not because that is not possible- I have checked, I spoken to pharmacists here who taught us that ascorbic acid comes from corn, tapioca or beet. But that the available ascorbic acid (Vit.C) in this country is most often corn. Corn is his worst allergy, tapioca was an acidosis response (he was so-so sick), and we have not tried beet yet (although I am open to- I know this isn't on the shelf). Unfortunately, we have had to learn the hard way about corn derived ingredients and why would I make him sick when he is already so sick? ...we have been there, we have wanted to "will" his body not to react...he can't react- his body NEEDS these nutrients, right? We were given our answer when we did this very thing- with a multivitamin that the only source of corn was in the Ascorbic acid (vit.C) and it was fermented, washed, and then tested for proteins in their lab, and it took 3 pills for him to have a full blown vomit/diarrhea/dehydration reaction from it; we vowed that night that we were DONE with supplements- that he would have whole food trials only. We KNOW he needs a vitamin, we KNOW that!! But just his need for it does not somehow magically override his allergy to corn. No, we can't even risk making him that sick- on top of being so very fragile. There must be a better answer. I don't know what it is yet but there must be.
Unfortunately, this is the underlying tone of why we must go back to CHOP for further support and insights..."just feed him", "push through night wakings, extreme pain, pallor, lethargy, bloody stools, eczema....do not call a food a fail unless there is extreme vomiting and dehydration"- that is what we hear all too often. Our experienced allergist at CHOP has advised from the very beginning: any vomiting, diarrhea and/or constipation is a "fail' in an FPIES child- their body is not tolerating it and it is only a matter of time before their system attacks it, being "primed" with these responses. Unfortunately, we have not been able to have any foods not cause some degree of his reactions and we have been stuck. We must go back to CHOP as they need a full follow up assessment. We do not push through his symptoms because when we have in the past, they have resulted in a very, very sick little boy- sometimes I wonder if the chronic reactions are harder on their systems than an acute response? I know it isn't really a comparison but I can't help but wonder what the difference in the immune system is with these spectrum of reactions.
Thursday, August 11, 2011
Right now, with so many other things ruled out. This is where I am at too. He either has some nutritional deficiency or he is reacting to the new probiotic.
With the Kirkman's probiotic, he tolerated the Lactobacillus strains but every time I tried to do a bifida strain, he would get a fever or flu like symptoms. An exchange with Dr.J and she advised to stick with the one strain for awhile, that his body was not ready for more yet. That was a few months ago, realizing that healing takes time but we've been stuck lately so when it was suggested we try a new custom probiotics; I thought it was worth the try as well.
We've been getting fluctuations of symptoms- symptoms can happen when starting a probiotic, especially if there is severe dysbiosis of gut flora, like little man surely has. I tried to increase the dose and he had a bloody diaper so I backed off a week ago, now today- this morning- he had blood in his stool again. My suspicion of the probiotic grows...
I called the "bug guy" tonight as soon as I got home from the hospital. He reports that his probiotics are clean, no added/inert or cultured ingredients. My question is: is he reacting to the ingredients (unknown) or is he reacting to the bugs itself? The "bug guy" feels it is the probiotic- that his dysregulated immune system is not handling these (tiny) doses. His advice is to stop probiotics for 2 full weeks, or more. If symptoms improve, we can assume he was reacting to the probiotic bugs- and to build him up MUCH more slowly...dissolving the same dose I have been giving him in a cup of water and then only giving him 1-2tsp from that cup/day. It is something to consider but have to admit, I am nervous....
Labs are initially coming back: Hemoglobin is dropping fast, now a 9.6 (last check was 10.3); Sodium is a little low but he's been sick and didn't drink well today; his chloride is a little low- probably for the same reasons his sodium is;his LDH is high but I am not really sure what that means yet. His total protein is low but not sure what that means as his Albumin is ok- although falling. So far, everything else is ok- but we are waiting on some more nutrient ones...especially B-12. (sorry if this doesn't mean anything to some but wanted to share for those who know what it all means). We'll have more insights tomorrow when more are back and we can step back and look at the picture.
My head is still spinning...I do everything I can....he is more and more allergic, his responses only getting worse. I know very well he needs micronutrients that he is missing for a strong immune system, a strong body- but if he is given foods that his body rejects, he becomes very sick and is set back even more. How do I get him these missing nutrients?
We are once again trapped, between a rock and a hard place. Trapped in evidenced based medicine and objective data with a clinical diagnosis based more on the subjective individuality of the child's own specific responses than any book can teach.
Little man is teaching, and his doctors are working hard at trying to understand his body, but there is just not enough known about the common mechanisms of this disorder to fully understand all the branches it takes off as. We are thankful our trip to CHOP is fast approaching. We are more-than-words-could-ever-express grateful that our good friends are loaning us their RV (again) so we can go as a family...staying together thru this is important to us.
We discuss TPN with our Pediatrician. We aren't sure what to do. Could he use some complimentary nutrition right now? We already know he could, but he is holding his weight, he is eating, he got IV iron today, and all his nutrition labs come back all within normal limits- he is not being "malnourished"...his nutrition is not ideal. I KNOW that, I have always known that. I would give my legs to feed my child, to nourish his body without it hurting him.
Wednesday, August 10, 2011
Monday was the doctor appt, with the labs to rule out viral infectious sources, tests came back on Tuesday clear...and Tuesday was a busy day and I wanted to observe him more....I was really noticing his fatigue, and started to realize he was weak, he joined the boys outside Tuesday morning while I was hanging out laundry and I watched him walk- tenderly- across the lawn...he was walking slowly- as if he had to think about each step; but he was determined to play with his brothers, He tired easily. I noticed when I put him down, he wasn't wanting to (or able to?) bear weight on his legs. My instinct is clawing at me....but I can't pinpoint what is going on.
I am so challenged by the continued challenges. NOT by the challenge itself, but by the constant place I am in...it feels like I'm being negative or dramatic. I am not a half-glass empty person, and do not want to send half-glass empty messages- with doctors, with family, with friends. I have no control over this, none. The more I want to, the more I don't. I hear God's message- I just struggle with it. Humility. I do not know what is going on with him, I have to ask for help. I have to plead for help from doctors who may not be able to, or want to help. Humility. I share our experiences to help share our story, to bring a voice to the atypical FPIES so many kids also share, to support and be supported in a new family connected through an isolating diagnosis.
I struggle...do I call the doctors? What symptom am I telling them? Am I just seeing this or is this 'just' his normal fatigue? What am I asking for? What do I need?
Today, we started out the day much in the usual ways, and I notice changing Sam's diaper that his legs seem weak, progressively from yesterday. When he finished his bottle, and got down to play- he clung to the bed, and then he grabbed for a chair, and then walked along the wall before he ventured out on his own- wobbly and shaky. This is getting really concerning.
I called and the nurses agreed he needed to be seen. After making the appt for later in the afternoon, I discuss his symptoms with a few more moms, and share the video of his walking, and discuss further with Little Man's dad (who is at work). We decide to head to the ER, not really sure what to expect. A nurse and Resident MD come in to do their assessment and vitals at the same time and then the Pediatrician on call comes in to do hers. She is very pleasant and she confirms my concern, not in a scary way but in a reassuring way- that my instincts to bring him in are on..."too many symptoms and can't pinpoint it except to say, something is wrong". She orders lab work, an IV placement and a some further tests (lumbar puncture).
Lab work, sure. IV placement, good. Lumbar Puncture? Ok, now I am getting really scared and I'm here alone with our 4 boys. I called Little man's daddy with the update, he knows he needs to ask to leave work and I confirm that by saying I don't think I can do a lumbar puncture with him alone, with the other boys here. The IV placement was difficult enough...the boys were in the room- the team had gotten there and was moving so fast, I wasn't thinking about having them step out, and I had a movie on for them to watch and at first they didn't notice the IV team coming in and then little man started screaming and W was squirming and climbing the walls and doing everything he could to not cry or reach out to his littlest brother. So hard to watch him go through this. I, struggling to hold back my own tears that I am always able to hold back, give him an assignment of finding his brothers some stickers- right outside the room. The other 2 boys now notice the commotion- realizing their brother isn't just normal fussing. J is frozen and crying...I ask him to leave, he can't move. With the help of one of the nurses, Thomas leaves to go get stickers- basically still oblivious to what is happening with Sam (thank goodness because Sam is sitting on my lap- my full attention needed to stay on him). Yeah, an IV placement- they can't be anywhere near the room for the lumbar puncture!
We get the IV placed but it is clear we needed our tag team. Jeremy's co-workers are understanding of his need to leave and he is soon with us at the ER, arriving just in time for the LP....his turn to be with Little Man and this time I got the boys out before any commotion began....we're going to get a snack. They gave Little man some sedation and the LP went perfectly, and is over shortly after we get back from getting the cafeteria. I have never seen him so loopy! The sedation drug is one for pain and sedating so he doesn't move during the procedure. We have to wait until he is stable and then we move to a room upstairs. He needs to be admitted for further observation and tests.
Tuesday, August 9, 2011
I changed my mind, maybe there is more to this rash and it needs to be checked out. I called to see if I can still get an appointment, or at least a message to his pediatrician. The scheduler informs me that his pediatrician is not available....little man is screaming and I simply can't think, so I want to see another provider? Not really....a screaming child, 3 other active boys and trying to explain to a new pediatrician completely unfamiliar with little man (much less FPIES) that I am not sure if this is something FPIES related or just a rash....while giving me the reassurance I need that I was listened to and my son was cared for. We've been in those appointments before: deer-in-the-headlights look from doctors and me left standing there wondering why I bothered to leave the house but knowing my son needed to be evaluated.
I called Little man's daddy at work, as he was waiting for an update. I don't know what to do next, and I need to work on calming little man down. Put him in a bath, he suggests and he will call our pediatrician's office while I get try to get him calmed down. The bath does nothing but escalate him, which only reconfirms that something is just not right; but a bottle and a snuggle in the rocking chair finally calm him down and he falls asleep in pure exhaustion.
Little Man's daddy calls back, he has discussed the symptoms with the nurse and they urge that he either needs to be seen by another provider within the next few hours, or he needs to be taken to the ER. The rash description and symptoms are too concerning. Jeremy decides to come home for an hour with the other boys while I go bring little man in, in case he decides to do this screaming episode again.
I take him in and the doctor agrees the rash is concerning, coupled with his red-swollen gums, and symptoms, she wants to run some bloodwork to check on a few things (ITP, viral,....) then she wanted to make some calls to Infectious Disease on how to proceed.
We go home and wait to hear from Infectious Disease, and then go back to the lab for the bloodwork. The bloodwork is back....no doctor has made any return calls, but I can view them in an online account for patients and they are all fine. His CBC is off- showing his body is fighting something, likely viral (or reacting?!)...and his hemoglobin is falling again (as also happens when reacting).
So, what is this rash? Still do not know, but we are crossing things off the list and I get more concerned it may be from the probiotic. Now, the question is: is he reacting to the probiotic or is his body struggling with the upregulation of his immune system from
Saturday, August 6, 2011
There are so many good things that happen everyday, but telling you the little things of a 2yr.olds normal development isn't exciting is it? It is exciting to me, when he says "more please" and "knock knock" (for the joke), and when he picked up 3 dice and turned and played with them and turned them all to the 5's- and then put 2 more beside them to match, when he looks at the number 2 and says "2!", and puts a puzzle together. These are all things a normal 2yr.old is doing....but they mean, and say, so much to me.
Little man looks good, the compliment we have been getting so much of lately. And it IS a compliment, because he DOES look good- since his transfusion, he isn't pasty or pale and he even has a suntan from our week at the lake. And he handled our trips well and he's coping with our schedule....but it is because we work so hard at it. But, if I don't tell you how hard it is- will that make it easier? Does it make it easier to not know how hard it is to assure your chronically ill child is thriving, to assure your other children get the love and attention, time and training they need to become fine young men. It is good for others to see how good Little Man looks, how well he is thriving....it speaks volumes to how hard we work -- even if the one giving the compliment doesn't know that is what they are saying. So, thank you. Thank you for your compliment and your continued prayers, a thank you to all our family and friends who have supported us through all of this.
There are different stages we go through, and we continue to cycle through them; each time getting somewhat easier. But, some things get more difficult....I sat with my little man while he received 2 iron iv infusions, after trying to tell ourselves that we were holding because he "looked" so good and that his other symptoms were so chronic....he fell severely anemic and I sat with him while they poked him 3 x and finally found a heel vein to put blood in him, more blood exposure....to pink and perk and tank him up - so that we could enjoy our vacation time with him and our boys, so that he would not be dangerously sick. I share a lot here on this blog, but we also do a lot privately. I am not looking for your sympathy, in fact I am asking you to please not give it. People who know us, know we do not like/want pity. Our Faith is too strong for pity. Empathy and support, and most of all prayers go a long way. I read something today...."we'll pray and then stand back and see God at work". So profound.
Another very profound reading is a blog about a family with a special needs child. Her post: Amsterdam International highlights the famous "Welcome to Holland" poem written for parents of special needs children. It was a very inspiring and worthwhile read for the thoughts, and stages, that a parent goes through. No sympathy, no pity, never regrets. Unconditional Love (and way too much momma guilt!)
Friday, August 5, 2011
Then, earlier this week, I took the boys to Wendy's for dinner, after a busy day. We have gotten much better about only eating out rarely but I still have these times when I fall back on the convenience of it. I get them chicken nuggets and a few baked potatoes, and we head home (when I say convenience- I mean it, it is literally down the road from us), I unpacked their dinners and started to prepare the baked potatoes, standing at the table to do so. I have informally made a rule that we only eat from our plates at the table (after having served "buffet style"), we do not serve "family style" because having the food on the table is hard for Little Man. I made a mistake by preparing the potatoes at the table, Little Man moved in to sit in his chair and realized the potato was NOT for him! He screamed, so insulted, so said.....as if I had just taken away his favorite toy-or worse! The cry was heartbreaking, he really thought I had gotten him something- along with the boys.
I caved. He hasn't had potato since he was 7mo.old, when we took food out of his diet. We don't know if he was having problems with it (don't think so), and has not had it since. So, I got my potato, that I hadn't touched yet and gave him some pieces of it. He was SO happy...."yum, yum, good".
He went through the night just fine- no issues showed at all the next day either....good signs and the boys started dreaming about all the potato things we would be able to give him.
No issues all that day,and we continue the 2 scoops of his new probiotic. The next day we give 2 scoops again- and then he has blood in a morning diaper, not much and it mixes in quickly. He proceeds to have 3 more dirty diapers that day (when 1x/day is normal for him). What is this from? The potato? The probiotic? Yes, I know better than to give him something while we're still trialing something else, or before his gut is healed, or this complex of a carbohydrate......I just want to feed him.....
Potato is actually one of the foods I am hoping, once his gut shows more signs of healing, that he could tolerate. I am nervous to push him just yet but I feel the blood could have been from the probiotic increase. We go back to the 1 scoop and we'll hold off on anymore potato right now, but maybe soon?
Last night, I was making dinner (no not Wendy's- real food dinner!) and I made Little Man some of his millet biscuits (water, millet flour) and, on a sorta whim, I decided to add some blackstrap molasses I had picked up a few months ago- because of it's high iron content. He had gingersnaps (almost)! - he enjoyed them! AND he had a good night of sleep, and has done well today. So, I search for more ways to play with molasses.
And today, I played with giving him his probiotic in the morning and at night. Dr.J had theorized he may need that, months ago, and I feel he does- he seems to peak otherwise.
He is otherwise doing well, peaks and valleys of the day. His gums are red/bleeding and he's licking wood, but his hemoglobin is good...I teter between proactive with his IV iron, or waiting it out...He's doing well, he's been doing well and I would love to just sit back and enjoy it (and am trying to) but we did that in April and May too.....and he fell fast, and we landed with more IV infusions and a blood transfusion.....
Thursday, August 4, 2011
We've gone from Catechism (church school) classes to a lake vacation, back home again for swimming lessons and then a surprise birthday weekend for "Papa", now back home and Nature Camp week. Next week starts summer vacation. What? Wait? Didn't it start 2 months ago? Doesn't school start in a few weeks? Yes, we did it to ourselves. We've kept our older boys busy and involved. And they are thoroughly enjoying it.
Little man, well- some things just never seem to change. We keep cycling through anemia, and the effects that come from that. He had the blood transfusion and really perked and pinked up at the Lake the following week (as I previously blogged about), and he really seemed to be doing well otherwise. A few symptoms here and there, and without the anemia- we would've just written them off to other things. But there is the anemia.
We just do not know where it comes from. The Hematologist we saw in consult last fall feels it is a combination of things: chronic inflammation, low iron in the diet (which isn't the case), and poor absorption/utilization of it. I dont' know how to describe it, except to say it is my instinct but she is wrong and there is more to it. I wrote to Dr.J (Immunologist at the PCRCD) and inquired if she saw any patterns with protein intolerant kids and anemia. She replied back that she does not necessarily note that; and then offers some speculation that, with Little Man, it could be something related to macrophage activation or something of this nature. Something to rule out. The hematologist is not interested in our outside opinions.
So, here we sit- monitoring iron and hemoglobin levels closely. The last time they fell, his hemoglobin went from being within normal limits to dangerously low, requiring blood transfusion- it fell 5 points in 6 week (from Mid march to beginning of June). In that time, he had reactions to probiotic strains, reaction to banana, a mystery reaction possibly related to cross contamination or banana, reaction to blueberry, and also to elk. With reaction, I refer to a variable spectrum of symptoms but each time he had colitis (blood in his stool) for 1-2days after. What is causing this? Are these losses enough to explain the sudden decline in hemoglobin and iron stores? Is there something connected to the immune/inflammatory response that affects the iron availability or absorption in the body?
Today, we had his CBC (complete blood count) checked. Hemoglobin June 4: 10.5g/dl, June 14: 10.6g/dl, today 10.7g/dl. He's maintaining, which of course I am grateful, but I don't understand it, more to research....
Tuesday, August 2, 2011
No one, no one wants to feed my child more than I do. But how many times a day do you give your child something that will hurt them? Something is NOT right in his gut, and he will continue to build these reactions until we figure it out. And then he'll have no foods left to try because his gut will have pushed everything over his limit and attacked it. THEN we will be in more trouble than we are now. We have a great GI, helping us at every step; but it is clear that we need more heads in the game, more opinions to get to some next steps.
So, it is decided. With our GI's support, we will get appointments lined up at CHOP. We called and immediately got a follow up appointment with Allergy for Aug.23. I have NO idea how we are getting there or how we are paying for yet another trip out east but I really feel we need to do this- for Allergy, GI and Hematology appointments, all while we are there.
Little Man still weighs 24#, he is 18% for height and 7th% for weight at today's appt. No weight gain in many weeks, months? We need to get labs done, check CBC so we can see how his hemoglobin is doing, and GI wants to run a full immune panel as well (something he had done in the very beginning) to have fresh labs done for CHOP. We also need to do IV iron again soon. We await to hear if/when our GI got his other appts scheduled for, so we can work on finalizing the plans....
Monday, August 1, 2011
We talk more about his biopsy results and that they show that he has inflammation which results in some villi damage but that he does not have atrophy, like he did in Dec.when we did the TPN last. We know he would benefit from the added calories/nutrients to help him heal faster but he IS holding- his weight is holding, his appetite is holding, he is holding. AND the past few days, he's been doing well. And really, he's done more well than not, since his transfusion in June - so maybe this inflammation is from before that and he is on the upscale of healing?
We've discussed getting him a follow up at CHOP- it's been a year and that was the plan....to return for a follow up. And it is becoming more obvious we need not only a follow up with Allergy, but a consult with GI and with hematology as well. We discuss this with our GI and she is in support of us going back and getting some further insights before we make next steps.
We have a good discussion about where we've been, where we are at now and where we are going....I break down, it's been a really stressful week, I'm over tired and I've begun to fear for my little boys life. Not how he is right now- he's stable, doing ok actually but how did we get back to severe anemia? Why does he have blood in his stools and how many more blood transfusions will he have before we figure this out? I can not just sit here and treat symptoms like this, I need to be proactive in his care again....we need to move ahead of where he is at.
We decide that we can hold off on TPN for now, there is just too many other things at play here and he seems to be stable- despite the ulcer-like inflammation we visualized on scope, his body is coping. He has started drinking more of his bottles and appears to be responding well to the new/change in probitoics; so we agree that we can wait. IF he doesn't turn around, starts to lose weight, or something we do decide to do, pushes him over- we can do TPN then. GI's main goal is to maintain Little Man's health while he grows and thrives. Good, exactly our goal as well.
This is a huge relief, and my head is spinning....what a long day...