I just want to feed my baby!

I haven't updated on how little man is actually doing in awhile, so I thought it was time to dedicate a post to that. We have been holding our breath all week, yesterday we let a little sigh out because Little man gained weight this past week! Ok, .2kg is not much of a weight gain but it is in the right direction.....a weight gain ON a formula made from hemp milk.

A little background to catch up to speed.....Little man has been on an elemental formula for 6mo. with little improvement (and some worsening) of his FPIES. Our allergist advised his symptoms sounded like he could have a corn trigger intolerance. We trialed corn and sure enough, it only took a teaspoon to find our answer. What does a corn intolerance have to do with not improving on an elemental formula you ask? Well, if the base of that formula is corn syrup, and that corn syrup as proteins extracted but it isn't enough for a very sensitive intolerance....you have a problem.

Little man started on elemental formula's in the last week of Feb, I was instructed to stop nursing him because we could not identify what he was reacting to in my breastmilk since I was already on an elimination diet and it wasn't taking away his symptoms. So, we put him on Elecare. He did not like it, and we ended up in the hospital because he refused to eat for a week. We were able to get him to take it at the hospital but he had daily vomiting on that and we were starting to literally force feed him. We felt trapped, unsure of what to do; we were supposed to just give it "adjustment" time- thinking he would accept it more and more and the throwing up would be less and less. Well, the opposite happened, he threw up more and more and accepted it less and less. We had already "failed" Nutramagin AA so there was one elemental formula left to try....Neocate. We switched to Neocate and the daily vomiting slowed down, and he began to thrive a bit. We continued to have random vomiting and lots of tummy aches, and we were not able to introduce any foods. This was not healing his tummy.

I have kept daily logs. I went back and added up his daily caloric intakes from May 1 - July 20....his daily average is a mere 541calories- much below his needs were at the time of 800-900calories. He was hanging on. I have always said his body is very efficient. Even when he was throwing up daily, still on breastmilk- he was barely maintaining weight but he wasn't losing. His body knew what to do- it knew where the essential calories needed to go. He has never been behind on his developmental milestones. He doesn't "look" like a sick child. For this we are very grateful. We know our constant care of him and countless sleepless nights do show in this. We have devoted our lives, our whole family life to caring for Little Man.

So, back to today- little man failed corn. He ended up in the hospital last month because he had gotten so sick- his little body that has been so resilient through all of this was having a hard time keeping up this time. We attempted to move away from Neocate with it's trace corn proteins so he could finally heal and re coop, to give his little body a fighting chance. To do this, I began to build him a formula with Hemp milk, safflower oil, and tapioca starch; but his reaction to tapioca starch just simply drained his already drained system.

At the hospital, Little Man was put back on part Neocate. Without recognizing FPIES, the doctors could not see how Neocate could be making him sick. We knew, but we agreed that he needed nutrition. A rock and a hard place. We hoped to find a threshold of tolerance. We didn't. The symptoms kept building, pain attacks started the night we came home from the hospital, up all night a few nights; and then the bloody/mucous stools returned.

I knew what I had to do....move away from the Neocate once again- more gradually this time, while building his formula with fortifiers we were sure he could tolerate. Mix Hemp milk, safflower oil, and cooked arrowroot starch, and blend. He has a formula adequate in calories. Optimal nutrition will come with introduction of foods but we can't get to that with continued gut assault.

I slowly reduced the Neocate in his hemp formula until last Thursday he had none. Unfortunately, this coincided with the crumb ingestion (see post from last Thursday). We waited it out, not changing much to his formula except tweaking the same ingredients to find the right texture/calories per oz./and carbohydrates per oz. he can tolerate. By Sunday he was whining too much for me to continue this way....was it tummy ache from the crumb still, was it tummy ache from hunger. I couldn't take the chance of it being from hunger so I added Neocate back into his hemp formula mix. It immediately filled his tummy. Sunday night was ok. By Monday afternoon, he was beginning to be a mess- colicky behavior all afternoon and evening, couldn't fall asleep and was awake for over 2hrs in the middle of the night. Tuesday diapers were frequent and liquid, and by the evening - mucous and blood; he screamed all evening long and had restless sleep. His tolerance for the trace corn proteins in Neocate becomes less and less.....I have to take it back out.

So, here we are again- back to no Necoate in his Hemp milk formula. Once again, this IS adequate in calories- AND he drinks the calories he needs to. He needs 1000calories/day adn he drinks at least that- somedays more! Except today, today he is limiting that intake a little - which has been his typical following pain/diarrhea/throwing up/reaction to a food/formula. It might take a few days for him to trust his food again. We can't keep messing with his ONE true source of nutrition....

To add to his FPIES intolerances he also has a carbohydrate intolerance (dissacharide deficiency)- his body can not digest too much carbohydrate at one time. So, I can't put too much in his formula. He may be able to tolerate EATING some carbohydrate between drinking his formula, to meet his daily needs but we can't FEED him anything!

So, here we are again- and still....rock and a hard place. What do we do next? Hopefully, we can hang on, heal his gut and get a food trial underway are my thoughts today.

Threshold of tolerance...

Trace proteins in breastmilk were an issue from birth for little man, after introduction of formula, it became a lower threshold that I could eat before I saw symptoms in him (through my breastmilk). After introductions of solids, he began reacting to more through my breastmilk (looking back).

Little man does not tolerate trace proteins of dairy (without any doubts). He has also reacted to soy and rice. But the threshold appears to be higher for these as it was a month of supplemental soy bottles before we decided he had a soy intolerance. We still aren't sure about FPIES to soy but clearly was intolerant to it and at this point is too sick to trial it. Corn looks to be very similiar to dairy- reacting to trace proteins. Neocate has trace corn proteins, however it does appear to be the most broken down of the elementals(best strained if you will) corn proteins from the corn syrup solids.

We trialed corn. After corn fail, we saw less tolerance of his formula...and it was as if he can tell his body can't tolerate it because he started to self limit his intakes to less than 20oz.day. We moved to Hemp milk- doing a 50/50 mix and as we gradually moved further away from Neocate and more hemp- we saw these symptoms decline (only to come back full force if we move back up).

We asked our allergist at CHOP what he thought and he agrees it makes perfect sense. Finding that threshold can be tricky. We are going to attempt to find it. We have added back in 20oz of Neocate to his hemp milk. Upon adding it back in, he has had mouth itching, mottling of the skin, abd.;pain, reflux and pain from that, fussiness, burpy, and much disturbed sleep, and also mucous in his almost-too- formed-for-liquid-diet-diaper These have all been signs in the past of intolerance and all signs that decreased or went away competly as we lessened the Neocate. The doctors here at the hospital (who most are not currently recognizing his FPIES) want us to go to 100% Neocate and then see if he has intolerances. We are not here to make him sick and will not be doing this.

We had a long care conference yesterday to try and get our outpatient "team" and the inpatient team on the same page. It was intense and I really don't know if it made any difference. Our allergist at CHOP has been calling Sam's doctors and us daily to check in (despite being on vacation last week)-he has been a GREAT help and advocate for Sam. We will just have to see what the next days bring here, and then continue on with our regular "team" with finding Sam's baseline.

Hemp Milk

Given Little Man's symptoms since corn fail, Dr.P at CHOP has advised that we need to get him off of Neocate as soon as we can. He advises Hemp milk as a good starting alternative. Of course, it will need fortifiers as it is low in protein and fats and just plain calories but one step at a time- we need to see if he'll drink it. Dr.P said if he won't take it at first, to mix it 1/2 and 1/2 with his formula for a few bottles but really try and get him on the 100% Hemp as soon as possible. He really feels that his symptoms and extreme sensitivity, as well as continued issues since starting elemental are related to the corn intolerance and trace proteins in the Neocate.

He also agrees that we should hold off on food trials of FPIES trigger foods until little man is to a baseline and healthier...he has been just getting so much sicker by the day and it is so hard to see him go down this road of not thriving again. He advises, get him on the Hemp and get him eating and tolerating this, then get some fruits and veggies in his "safe/pass" foods and then when you have him built up to a good baseline, trial a grain and a meat (these can be iffy so have to proceed with caution and it's pretty much a guess work with FPIES to which grains and which meats they can tolerate).

I'm exhausted since corn fail, but so is little man - he falls asleep at random times throughout the day...I walked into the living room today and he had just crashed asleep on the couch, he usually requires us to rock him to sleep. Ok, so maybe it is a good thing- maybe he is so much more relaxed since we are able to give him ibuprofen that isn't hurting his belly and so he is catching up on some sleep. I would be reassured by that if he actually looked like he slept when he woke up, or if he acted like it- but he looks and acts so tired.

I ordered the Hemp milk online this morning, overnight shipping- should be here tomorrow....hopefully he likes the taste! Thinking of having him on something that is truly nourishing him and healing his gut- getting to see him pain free and distress free, and maybe even start passing some foods gives me chills of excitement!

If a Pharmacy can compound a medication....

Then why can't a nutritional company formulate a formula? My little man needs a dairy-free, rice-free, corn-free and I highly suspect soy-free amino acid elemental formula.

His current formula is an amino acid elemental formula....unfortunatly it has a corn syrup solid base. The company has assured me the proteins are extracted; but this would be similiar to separating an egg white from an egg yolk for a person with an egg allergy... (I speak from experience, our oldest son has an egg allergy and he can not have Culvers Ice Cream - a custard made from the egg yolk)... It depends on the sensitivity and severity of the allergic person.

Well, our little man appears to have a very sensitive case of FPIES - he currently reacts to everything.

He even reacts to the sand in our sandbox, we suspect the trace proteins from the Walnut tree in our yard because the squirrels have buried walnuts everywhere in the backyard. But I digress....
Back to the formula. Abbott Nutrition makes an elemental formula (Elecare) and a corn-free formula...unfortunatly they are not in the same mix. Alimentum ready to feed is corn-free (the base for this is sucrose and tapioca starch); BUT (and this is a big but)- it is not amino acid based proteins; it is hydrolyzed (partially broken down) cows milk proteins....which little man has reacted to small doses of in the past (and through my breast milk even).

So.....the question I posed to Abbott Nutrition (makers of Elecare and Alimentum) is: can you formulate a formula to meet my son's needs? The answer: not at this time.

Back to the drawing board. I do not give up easily. Hemp milk is what Dr.P at CHOP recommended, the first ones I have found have too many additives that little man can not tolerate but I'm not giving up. It is a possibility -- with the help of our great dietitian -- we may be able to make our own "formula" ourselves...it won't be easy but I know it can be done! Something that our little man can truly thrive on....just imagining seeing his true baseline makes me shiver...