Good Streak comes to a halt....

Still hoping these symptoms are from the lubricant but we're in the mind game time when I start to question everything in his diet and environment....I just want him to not suffer and be a happy little boy.   Seeing him suffer or struggle is so very hard on a mom.   Not being able to stop it or know exactly what it is from to know if I'm doing everything I possibly can to help him through it is even worse.   And that is where we are at.....

We restarted the Alimentum and it seemed to be going well- clearly benefiting from the increase in nutrients (B vitamins, iron, Vit.C) he needs in his diet and the increased energy that comes with that; but there were subtle signs that had been there in the past with introduction of Alimentum as well (rosy cheeks, little bite looking spots, a washed out look, not gaining weight despite eating more and getting more calories, questionable look and smell to stools) but these aren't necessarily FPIES responses for him.  Are they his carbohydrate intolerance, if so, it is more that they are intolerance symptoms and that although bothersome- they wouldn't be doing the "damage" an FPIES reaction does.  Are they enteropathy (FPIE) symptoms/reactions?   We just can't be sure yet, and the good was outweighing the bad so we are content for now, to "ride the line".   

The Chee-Cha puffs are still going well and I ordered some potato flour and potato starch to start playing around adding that to his millet flour to bake him more things.  We stopped (hid) the chocolate- I think it's safe to say that chocolate itself (Hershey's Cocoa) can be added to his safe list but he was OBSESSED with it and was eating way too much- so he was getting the effects from that (some hyperactivity and loose stools- seriously, he was eating spoonfuls of the pure cocoa powder!).   So, that went on the shelf for now, until I have more things to mix it into so he eats the food I mix it into and not just the powder!! 

Riding along the line.....then comes the lubricant (spoke about in last post) and we saw immediate flushing and tantrums that night followed by 3 days of loose, large stools, followed by some really questionable looking stools (was that a blood clot? is that blood mixed in? what is that smell?).   The boys thought the smell was like "burned plastic".   We're guessing it is the lubricant working it's way through his system....and now we recover from that.   With a sensitive gut that is not tolerating safe foods- Alimentum is causing symptoms, potato flour and starch (given over the last 2-3 days) are causing symptoms,....he is not sleeping well and last night he was up every hour or so and then gave up and got up for the day at 4am.  Not.good.signs.  So the guessing games begin....issues with Alimentum (sugars, soy oil)?   Reactions to the potato flour or starch (cross contamination with the brand- King Arthur's), or all just sensitive because of his inflamed gut??

And then there is the tube....the tube change was successful and it looked GOOD at first, then the lubricant issues kicked in and we held off using it became clearly painful for him again- bleeding and oozing and inflamed granulation tissue again.  

I don't even know what step to take next....We pray that we recognize the answers to our prayers on the next directions he needs for healing....

Pass or Fail?

I thought I would know by now if Millet was looking like "pass" or "fail"....unfortunately if I was to "call it" now, it would be fail.    Last night, little man was only awake once but he was in pain when he was awake- and it was all-too-familiar discomfort, but after almost an hour - I did give him some of his compounded corn-free ibuprofen and he then settled right down and slept another few hours, only to wake up too early and too grumpy. :(  But, here again, not enough symptoms to "call" it but things are starting to add up with too much familiarity and beginning to make me worry.   I then changed a diaper, lets just call it "weird", and "concerning" but not fully a reaction diaper.   He remained grumpy while I got his brothers ready for school and I got ready for work.  

Now, begins the guessing game - is this from the baking powder with corn starch? The crumb or two he may have ingested?  Could be.   Is it from baking soda or cream of tarter? Doubtful but could be.  Or, worst yet- is this an FPIES trigger to millet or an intolerance to millet? At that point- I'm leaning towards intolerance and taking a break to see what that does to his system and see if the picture can become less muddy over the next few days.  I work 4 days this week, so won't be home to monitor him anyway so a good time to just take a simple break.  

Little man had a lab draw set up for this morning.  We've been getting frequent checks on his labs, with his FPIES being a chronic illness- compounding situations have been sneaking up on us but we are learning more and more about FPIES and how things affect Little Man.    These lab checks take a lot out of him and this morning was no exception- especially since they had to try 4 times to get the vein!  Poor little man.  Results came back today and a short discussion with our pediatrician helped to calm my nerves between his labs being off and his questionable build reaction, with me being at work unable to do much about any of it.  His hemoglobin/hemotocrit and Iron are holding but not improved at all; although the good news is that his reticulocytes count is improved- showing his body is nicely responding to the iron supplement.  It will take awhile (6weeks or so) to begin to see a tiny bump in his hemoglobin/hemotocrit and iron levels from this though....it will be a slow process but we still feel this remains a better option than a transfusion at this time.  We are beginning to check other nutritional panel labs as well, to be sure his homemade formula is still helping him thrive (because as far as pain free and baseline and weight gain goes, he is thriving on it).    His other labs look ok.   

But that doesn't change the fact that he needs a tiny menu to round up his nutrition of micro nutrients.  We are fighting hard to get him this.  But in the meantime, he can't afford a set back- so we have to continue to proceed very slowly.   We remain between that rock and hard place.....he needs more nutrition in his diet, but he can't afford a reaction.  Does anyone have a crystal ball to see what we should even try next?   Do we continue with the millet?  I still feel like we should- I have been going primarily on instincts this whole time, and letting Little Man guide us along.  He isn't reacting during the day and in fact, he may even be improved- behavior, sleep, comfort, mood, etc.  But last night/this morning threw me enough of a warning sign to signal my instincts to take a break/slow down until the picture is less muddy (teething pain? cold? reaction? hungry?).  Maybe put millet to the side and get a fruit but then again- left in the same place we were last week- he won't eat a fruit...millet he was eating (another sign that his body isn't reacting to it- he wants it). 

Today, I'm left with FPIES=Feeling Powerless In Every Sense; tomorrow will be better.  It is day by day and sometimes moment by moment around here.  And today, I am reminded of that.

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.