Peach juice supplies Vit.C, Sun supplies Vit.D!

Well, as another FPIES mom puts it....."if we could just fortify the air"! Some of it already is- especially on nice sunny days in the middle of August. So we took advantage and went to a local fair. Little man has pink cheeks from the sun and he always seems to do better when he's had a good day in the sun.

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.  

Home from the hospital.

Little man, happy to be home from the hospital. He misses his brothers too much when he is there; and they miss him.

I haven't updated in a few days because we've been so busy, and worried, worried and busy- but mostly worried.

We've been working towards a baseline with Little Man, we moved away from Neocate and began to see what he looks/acts like when not in pain all day and all night long. Then, we tweaked his 'new' formula (the one I make in my kitchen with hemp milk and arrowroot starch) by adding hemp protein powder and we found not only a pain free little boy but a content little boy. The end of August, he was doing so well. The past few weeks he started to slide- he was cutting his 1yr molars so was a little fussy/whiny -but no where near the magnitude of his GI pain, so we were dealing with it day by day like any other "normal" teething kid. Then, he caught a cold his brothers were passing around- which brought him down a bit. Of course, all of this made me nervous- is this a build reaction or just "normal" 15mo. old everyday things? Gah! How crazy to be nervous over such little benign things! We pressed on, he continued to get millet puffs daily- he enjoys playing with them more than anything and we have intentions to do a full trial soon. I added the protein powder. Then we find out his hemoglobin/hemotacrit is falling- and his iron stores are already low. His iron has always been low- we (me) assume it is part of his malabsorption he had for so many months while on foods that were triggering his inflammation response. The hemp milk does not have ideal amounts of iron in it, and the iron it does is non-heme (meaning not from blood- so vegetarian). I have a 15mo. old on a vegetarian diet. He needs double the iron and good sources of Vit.C- both of which he does not get.

Walgreens was so helpful in compounding his pain medications, now it was time to move the possibility of a vitamin supplement to the top of the list. I had asked them over a month ago and they could not find a way to make a multivitamin compounded with the vitamins but none of his allergens. I spoke to them again, and we decided to just to an iron and vit.C supplement- both of which come in powder form so they knew they could compound this. We waited a week, their supplier was out of FeSo4 (elemental iron); they kindly suggested we try another pharmacy in town. We took it to the hospital pharmacy, it took a few days for them to order the FeSo4 and assemble the compound and then a day to let it "set" and finally, last Wednesday it was ready. I gave little man his first dose as soon as we got home from picking it up. I thought he had good energy right away, but then he had trouble sleeping that night. I attributed it to an off schedule day and more teething. The next day, I had to work so little man was home with his daddy- who called mid day to say he was on his 3rd nap for the day. Odd, could this be his body's way of resting and breathing. One could hope, right? Thursday night he had more disturbed sleep and Friday morning brought the mucous filled, reaction smelled, diarrhea diaper. "He's reacting!" Little man's daddy added, "he had that same diaper yesterday afternoon". Ugh! What? What is he reacting to? The iron supplement? Iron is constipating, why is my little man having diarrhea with mucous? Ugh! Is it the Vit.C? I had called right away and asked them to be sure it was corn free. "It's corn free" they assured me. I didn't think to ask what it was if it wasn't' corn....I will next time. We called Friday to ask them to check what the Vit.C WAS made from, they got back later that day -- tapioca!! Tapioca that he had such violent dumping diarrhea that landed us in the hospital in July? Tapioca, really? Who would have thought?! Or, is it build from millet, or is it build from the protein powder that has Vit.E derived from sunflower oil. Can little man tolerate this? Everything extra, everything we weren't 100% sure on was stopped. No more millet puffs, no more protein powder in his formula, no more Iron/Vit.C supplement. He remained sick all day Friday, we remained nervous and concerned- would he get more sick? Can his body really keep handling this? Saturday he ate less and was tired and cranky, I sent a stool sample that came back positive for blood. Ugh, again. Sunday he was so, so sick- but what do we do? The ER wouldn't' recognize what was going on, their recommendations would probably be something that his body is sensitive to. So, again- we wait it out...moment by moment with him, holding him and watching him closely. Monday morning we call the doctors. The GI doctor wanted his labs done right away, they came back by noon and revealed a very low hemoglobin/hematocrit....he needs to be admitted.

Monday was our 13yr. wedding anniversary. What a way to celebrate, a trip to the ER for a hospital admission with a sick, sick little boy. But,these are the times I am so very grateful for my husbands strength. He was at work but he came home immediately and took Little Man to the ER while I stayed home and made some more formula and packed (hey, at least we got to be together for our anniversary...sort of). Thankfully, by the time we get to the ER- Little Man had a good nap and was perked up. They agreed he could wait until he was admitted for a possible transfusion- but that he needed continued monitoring for signs/symptoms of anemia.

So, monitoring is what we did- while the doctors checked all differentials for his sudden decline in hemoglobin/hematocrit. Little man kindly made us a stool sample the next morning and then blood work was done. Blood work revealed his H/H are stable- so confirming that his body was coping and holding; his chronic anemia has enabled his body to know how to utilize his stores well enough to hold. His stool sample came back negative for blood, the intestinal bleeding has stopped. So, the signs of him having more energy and more smiles and less crankiness with these lab results tell us he may not need the transfusion just yet. We wait to hear the doctors recommendations, while we try to think of the best decision for little man's health. "He will feel better" is the benefit they tell me. This doesn't seem like the benefit outweighs the risk. Do I want him to feel better? Of course!! That pulls at my heart strings like nothing else!! But do I worry that he will have a transfusion reaction? Do I worry even more that someone else's red blood cells in his body will incite his inflammatory responses? YES! Little man's daddy and I talked it over, and we just couldn't justify it. We know that if he drops low again, becomes lethargic and "blah", and a lab draw would reveal a drop to 6 or below- we would have to strongly consider this transfusion, esp if he was containing to lose blood (intestinal). But we are not there yet and Little Man deserves the chance to let the supplemental iron build in his body. Upon that decision, after 24hrs of monitoring to confirm his body is coping ok, Little man was discharged and we headed home. A discussion with our pediatrician today, and a plan is made for his specific needs. We will have to monitor him closely, and food trials are certainly on hold. I have added the protein powder back in, and he has responded well to it. I think not having this extra protein boost (also has iron) for his body did make a significant difference in how his body coped over the weekend. We will keep millet out and we have added tapioca to his list of allergies on his chart. We are hopeful we have identified the "trigger" correctly and he will continue to improve every day back to his baseline (that he had for such a short time).
He is so sensitive, so fragile but at the same time so resilient, so amazing. And he has big shoes to fill.

In hospital food trial.....postponed

I didn't even get a chance to blog about it and we've already had to postpone it!

GI appt was on Wednesday. GI doctor agreed with us that we were ready for a food trial, we've already discussed first foods to be in-hosptial trials. Little mans' reactions have been long-drawn out and make him very,very chronically ill for weeks. The doctors want to do what they can to learn about what a food pass or food fail looks like and learn what they can do to help his recovery. They will monitor labs, symptoms, diapers, intakes, and weights, and anything else that comes up.

Wednesday was a busy long day. 2nd day of school for 2 older boys and Little Man's appt in the middle of the day. We finally got his compounded Iron supplement, that we had compounded with Vit.C as well. Vit.C will help his body absorb the iron (in the supplement and in the hemp milk). I was so excited to give it to him, I got home and immediately mixed it up for him- a small syringe full of rust went into this mouth....and then I realized I didn't get clarification on the Vit.C origins!! I called the pharmacy and they assured me it was corn free. I breathed relief. My baby boy was going to get the iron his body so needed. He spent a lot of time napping that afternoon and evening but thought it was from the long and busy day. I worked the Thursday (the next day) but gave him his iron supplement before I went to work. A call from hubby later that day revealed Little Man had already taken a few short naps. One could hope this means his body is just getting the rest it needs, but my radar went up- what is going on with that? I get home from work and he is whiny but he's been whiny- he's been cutting his bottom 1yr molars so have had to write off his whining to this. But could it be from the Iron/Vit.C or is it from the protein powder that has sunflower seed derived Vit.E? Adding anything....Any.Little.Thing. to his diet always has to be a "trial". He's had the protein powder in large enough quantities- we would think we'd have seen more build symptoms by now but I will worry about this for another few weeks probably. Maybe I should just trial sunflowers to be sure?

Last night, Little man went to bed but was awake screaming twice before I even fully went to sleep. Thankfully, little man's daddy wasn't working today so he was up with him rocking and comforting him. After those two times, he wasn't awake again until morning so again- tried to think it was "just" teething or random awakenings. That is until I opened his bedroom door that morning to his cries in his room....and that smell is un-mistakable, the rotten smell of what we now coin as "reaction poop". Mucous, slimy, liquid full diaper reveals he is reacting to something. Is it the Vit.C? Did the pharmacy check close enough to be sure,sure,sure it is not from corn? Is it a build from the sunflower?

I called the pharmacy, they did some checking and the Vit.C (ascorbic acid) they used indeed does not come from corn but we were surprised to find out it does come from tapioca! Tapioca? I had read that as a possible source but I thought, what are the odds? Well, had he not had such a violent dumping diarrhea reaction from tapioca (what led up to landing him in the hospital last month). We still aren't sure tapioca was a FPIES "trigger" (no violent vomiting) but either way, his body did not tolerate it- and caused him to be very,very,very sick. So, tapioca in his Vit.C/Iron supplement would not be ideal for him. I am not sure where he will get Vit.C from, will need to find a fruit he can tolerate shortly after lamb. Ugh- sure wish I could just feed my son food....

So, we have postponed his hospital lamb trial- pushed it back a few days and if we don't see resolution of diaper symptoms (or if he has weight loss or blood in stools)- we'll push it back further. It is a BIG disappointment of a day....the emotions become difficult to contain when a food is failing my son; when a supplement made specifically for him that his little body needs fails as well, the load gets heavy to carry. How much can one little boy take? We were so ready for some things to start/continue going well. There are other plans...everything happens for a reason.

Stay tuned for food trial news...

If we have more pieces, will this puzzle finally come altogether?

After stopping tapioca starch over the weekend and restarting it on Monday with a swooping repeat of last week (agitation, GI distress and blood in watery stools), we stopped the tapioca starch yesterday morning. Little man got plain Hemp milk all day yesterday. We tried to just put a little cane sugar in his hemp milk to see if that helps to keep his blood sugar stable enough so he isn't so ravanously hungry and over eating (like he did on Monday- ate 83oz of hemp milk that day!!). I have questioned his tolerance of the cane sugar, but it was something to try so Little Man's daddy wanted to give it a try. He gave him some sprinkled on the table for him to play with (large granules) and sprinkled it on the hemp popsicles we make for him- he licked it a little. We also tried to put it into 2 bottles last night- of which he would drink an ounce and then not want anymore; only to give him a plain hemp milk bottle 15min later and have him suck down 6oz.

Well, we put him to bed (happy baby all day) and he woke up SCREAMING mulitple times (too many too remember) last night!!! He was SOOOO agitated...well, now we have little doubts of how he does with cane sugar as well.

So, moving on- I went and got potato starch today and started that in his bottles, he drank them ok as long as I kept it low....well, it was a good thing I kept it low because the same thing that happened with tapioca starch and sugar was happening all afternoon with potato starch.

It would seem to me, at this point, we have enough signs to point us that this is a carbohydrate maldigestion/intolerance issue compounding his FPIES. Hopefully we'll know more soon as I hope we can utilize these carbohydrate trials to help further solve our Little Man puzzle and be one more step closer to finally getting him healthier and thriving, and getting real food trials going. Hopefully....

Tapioca

The next step in building a formula for our little man is adding a carbohydrate source. We will then get a good amino acid protein profile added and FINALLY move away from Neocate and it's trace corn proteins.

Those trace proteins may be causing a new problem, for the first time tonight- his diaper had blood in it. :( Many experience blood in stools with allergic reactions, we saw it at 8weeks with our oldest son when he was reacting to milk proteins. It is called allergic colitis, it isn't necessarily a component of FPIES but many kids have it also. We have not, until now.

Tonight, I'm stumped- why now? Where is it coming from and should we be worried? How worried should we be? Little man has hyperplasia in his colon and the GI that performed his scope said it is common to see mucous and blood from the sloughing off of this from food intolerances. We felt lucky that despite seeing this in his gut, little man had not experienced the colitis.

And today was going well-- we are making little man a formula he can thrive on!!! We have an awesome dietitian who will help assure that he gets all his micro and macro nutrients, calories, protein, fats, carbohydrates. I spoke with our allergist's RN today and got good compliments on how we are handling things and moving forward.

Thankfully little man isn't having any GI distress -- so I am not inclined to think this is leading to an FPIES trigger reaction but I'm certainly not encouraged by this new appearance in his evening diaper change.

We press on....more on the FPIES rollar coaster ride!