Where did the month "push" trials get us?

Not far, backwards?

No, I've learned that all steps forward are just that- always moving forward.  Even if we can't see the progress in the moment or when it feels like a dozen steps backwards....always moving forward.  Faith that even when we can't see or understand something, there is always a purpose.

Since the last post of pressing through pineapple and on to potato, as we feared (but hoped not), he started reacting- but to what, we aren’t positive.   We were using potato chips for a potato trial, trying to get him interested in eating. He’s been surprisingly good about chewing food- even if it is in small tiny nibbles, for a kiddo who has had so little practice with foods. But he just isn't interested in trying new foods, it doesn't take much to make him leary of new foods, or even leary of his safe foods! 

I was mixing the zucchini into his muffins and his cookies; and then the egg as well.  He had vomit reactions to those and isn’t interested in his muffins now.  His cookies he has asked for but is rarely eating.  So, I thought for our potato trial, we’d use chips- they come in a bag and look like something his brothers would eat, ok- do eat.   He had them for a few days and then had a vomit session that we assumed was from the potato chips.   It was a rough vomit session and he wasn’t up for eating anything but his bottle for a few days…not even his pineapple juice.   Then, I made him his muffins- in an attempt to get him to accept them again and start trusting his food again.  These are from his safe ingredients- a recipe I adapted from a fellow mom's Merry Muffins and use as the base for pretty much everything- “biscuits”, “cookies”, waffles, and muffins.  Combining his limited safe ingredients, they make a cute little muffin.   He LOVED it and actually ate almost a whole one (a mini muffin in tiny nibbles that took him about 2hrs to eat), he also drank his pineapple juice.   Six hours later, he vomited.    The next day, he of course did not want his muffins but he did accept a few sips of pineapple juice.  Six hours later, vomit.  Ok, wait?  Is this a reaction to pineapple now?  Is this pineapple too rough on his stomach after potato fail?  Was potato actually a fail?   So.many.questions.  

He needed a few days to recuperate and our GI agreed.    The rule with an FPIES reaction- you wait until you are back to baseline; but we have a few factors in this "new" plan that we are supposed to be “pushing” him, he gets the TPN that helps his body cope following the reaction (the IV fluids he needs), so he is bouncing back much quicker and our GI wanted us to do this method for the next month- push things.  So, we started again 5days later, because he had been asking for his ‘chips’ almost every day.  Why is he asking for something that he reacted to?  He never does that.  Maybe it wasn’t the chips and it was the pineapple?   Only one way to know….so I tried a new brand of chips- Kettle.  The ingredients are: potato, and the oil is Safflower and/or sunflower (I wish it was just safflower like it says on the website), and sea salt.   He had them one day and did great.   The next day, I wanted to test out my new Vitamix and make him a juice, which I did – and combined a few fruits and veggies into one juice.   Ideally, this would get us the nutrients he needs- a pound of spinach condenses down to a little juice and he could get a lot of nutrients by juicing.  It also gives us the opportunity to see if “pushing” his system will “stimulate” his gut and give us more clear answers to his multiple symptoms and reactions.  He took 1 sip, pushed it away and asked for his chips.  Yesterday the chips went ok, so I let him nibble on them again that day (the juice was avocado, spinach, melon, carrot, radish and peach- very small amounts of everything except peach).   He has had carrots a few times over the summer but has not had any of the other fruits/veggies.   That night- vomit.  I automatically think the potatoes are the culprit but it wasn’t following the potato chip timeline from the previous week…maybe it was the juice (carrot)?    How much further could we push him?  I want to stop, but I feel like it would be giving up….that we still have so many questions and did we fully follow through with the GI’s plan with these foods/trials?  In there we had also tried golden beets in his millet muffins, also Enjoy Life chocolate chips (which I have since found out have caused reactions in some corn allergic people so those will need to be taken out- which is fine because he wasn’t even interested in them! So, over the past month or longer we have tried a pretty large variety of food but we are getting nowhere, Is this enough?   

I was at the grocery store and picked up a few other things, some coconut milk in little juice box cartons – he thought that was pretty cool.   Of course, again with the processed food….but he really is losing interest in trying foods.   At first, he was excited when I was putting new foods on the table for him- the look on his face, as if he was saying “is my FPIES over? I can eat?”….because he didn’t want the foods I was offering, he was BEGGING for crackers, that his brother eats a lot with his lunches, he begged for fruit cups, cheese and yogurt- the snacks his brother eats….So, I got some SoDelicious coconut milk.  And again, he acted like it was Christmas morning- so excited over his own juice box!  “mine” and over and over again he said it.  The first night went ok, but enough questionable symptoms- I didn’t want to push him too much further after all he's been through and because coconut has been on the fence for almost a year since we’ve tried it a few times and don’t get through the trial for symptoms that show up- but always different and possibly not FPIES.   The next day, he asked for it again and I let him have some….6hrs. later, covered in vomit.   As with other nights, he falls asleep soon after the vomit and the TPN (IV hydration and nutrition) clearly helps his struggling body.   But even still, the next morning, he is really looking pale and off color.  I’m done, we’re done.   This is it- we’ve gone far enough, too far.    What have we learned through this?  

Pressing through trials, more pineapple and on to potato...

With a few days into pineapple looking like a go (our new plan to move through trials), we moved on to potatoes.  Little man has had it twice before- bites (nibbles) of a baked potato. He isn’t terribly interested and I had picked up some Ruffles Naturals potato chips. Ingredients: potato, sunflower oil and sea salt. I ate them when I was on the elimination diet and nursing him a lot (a lot of chips have soy ingredients in them); although we didn't know anything about his corn allergy and I wasn't finding his baseline on my elimination diet- I simply remembered them as a potential friendly snack.   I just thought it would be fun for him to have a fun snack to get him excited about eating, thus making the future trials easier for him. Potatoes are very starchy, and he doesn’t have very much enzymes to digest the starches so that is another big reason for the chips- hoping it could help him stay within his threshold (a threshold recently discovered with pineapple) so we wouldn't have those symptoms confusing us for FPIES symptoms (adds to the complexity of the situation for sure).   

The first day went ok, he had them twice even- asked for them at bedtime! I started to see some subtle symptoms and the all-too-familiar- 4am crying in his sleep; but I was hopeful it was just a coincidence (when will I learn coincidences are rare in FPIES).  

The 2nd day he had his chips twice again, and he was GREAT all day. That night I also got him to take a few nibbles of a baked potato.   We were feeling optimistic that the random coincidental looking symptoms were just that- coincidence, and feeling empowered about finding him a fun food!

The 3rdday he had them once around lunchtime, and I was baking him some fries for dinner and had gone downstairs because he was starting to throw some tantrums and was quickly declining...and then he vomited. Ugh. No more potato. Darn it. It was one large vomit and he seemed to be doing ok.  He had a poor color (is he grey?) look to him a bit later but he took a bottle and his color came back, before falling asleep (early) for the night.  

My mind did not shut off all night, was this dissacharide or FPIES? If it was dissacharide, he could have small amounts- such as in baking powder that is made with potato starch and not cornstarch; and we can retrial it again sooner and simply find his threshold that his body can digest at one time.   If it is FPIES, anything related to potato needs to stay out. Then thoughts go to:  is it FPIES to potatoes or was it sunflower oil or contamination of the chips themselves? Corn-tamination?  Or is it FPIES to pineapple?   We've been continuing the pineapple and he's had it off and on (juiced, 1-2tsp in 6oz.of water).
The next morning he had the all-too-familiar-smell-it-from-the-next-room blow out diaper. Sigh. Crap. Literally. FPIES for sure, not dissacharide deficiency; an e-mail to the potato company indicates it is not corn-taminated although it could still be the sunflower oil.   

Recovering from this reaction has been hard on his body, even with the TPN we are noticing signs of dehydration, he is refluxing which he hasn't done in so long, and I wouldn't be surprised if his hemoglobin and iron stores fell again as he is so very tired (although has insomnia), he is chewing on things, fingers in his mouth, and very pale.   He is only eating about half his formula intake during the day (again, thankful for TPN overnight!), and isn't interested in any of his safe foods. 

Finally, almost a week later he is beginning to look better, act better and eat much better and I encourage him to drink his pineapple juice again.  One evening last week I made him some of his Millet Merry Muffins, he hasn't had those in awhile (since zucchini fail, he associated muffins with food that hurt his tummy).   He was excited about them again and actually ate a whole one!  (mini muffin, in crumbs, over the course of an hour).   Six hours later, vomit.  alot, repeated.  We get him cleaned up and settled down into bed, he is tired.   The next morning, he seems fine.   What was that about?   Is this pineapple?  Is this random?  Is this his gut still inflamed from last week's reaction? 

The next day, he doesn't want his muffin but he is willing to take a few sips of very watered down pineapple juice at dinner.   We go to bed, and again, 6hrs later he cries in his sleep, sits up and throws up everywhere, repeated, choking, vomit.  What is this?   Does he have a virus?   Is his stomach upset from the pineapple?   Is he failing pineapple?   Was the potato reaction actually an initial pineapple reaction?   He's been so off all week, was he recovering from potato or chronically reacting to pineapple?    We decide the game plan would be to stop pineapple for a few days, give his gut time to heal more, be sure this isn't a virus and move on in the following week.   He improved dramatically over the next few days.   Something is off, but what is/was it?    We have to reintroduce pineapple, or should we retrial potato?    As strange as it may sound, we may have to let him decide because he isn't wanting to try anything now again....he's a quick learner- which is not good for a strong oral aversion.   

TPN

Little man has been on TPN for 5monthes now.   TPN is total parenteral nutrition and it is nutrition through a PICC line (Peripherally inserted central catheter), which is inserted into a vein.   So, he receives his nutrition through a vein.   The disclaimer here is that although this is part of our Little Man's FPIES (and what this blog is for), this is not typical for FPIES.   Although, it isn't uncommon for some kids with several FPIES allergies to have G-tubes, which is a feeding tube inserted into the stomach to allow for formula to be fed through the stomach; this is typically due to several severe reactions causing the little one to refuse to take enough nutrition through the mouth, or have complications from severe reflux necessitating the nutrition via a tube inserted into the stomach.    We have previously discussed a G-tube for little man but it wouldn’t change that his body does not accept any commercial formula’s; so the benefit vs.risk of a Gtube has not been enough for us to pursue it.   Little man’s FPIES results in severe inflammation, inflammation that doesn’t seem to turn off (is this an auto-immune component or simply his FPIES, we are not sure).   The inflammatory mechanisms have caused persistent small intestine villi damage; again we do not know why.   

Little man received temporary TPN in December last year for a month after soy challenge revealed villous atrophy, weight loss, malabsorption.  We knew his body benefited from the nutrition via IV.  That his body knew how to utilize these calories and bypassing the gut meant no malabsorption.  

This summer when little man had severe Vit.C deficiency resulting in Scurvy, he needed immediate Vit.C replacement to turn the Scurvy around.   Vit.C in this country typically comes from corn starch, added to foods, enriched in products, in over the counter Vit.C supplements, and even in pharmaceutical grade Vit.C supplements- tablet form, liquid form, any form.   There are a few products available that come from tapioca starch; but Little Man had a severe dumping diarrhea and metabolic acidosis reaction from that last year.  We did not have a supplement that was known to be safe.   He also was declining again from the persistent malabsorption following multiple trials.   It was decided that another PICC would be placed and TPN would be initiated.  The PICC was placed and IV Vit.C started in August, TPN was initiated in September.  It’s now January, it’s been 5mo. with a PICC line and overnight TPN feeds, 12hrs to provide ~800 calories; his homemade formula that he continues to drink during the day provides the another ~400-600 calories. 

TPN has given Little Man a break, gut rest while getting a break.  Complete nutrition that doesn’t cause an inflammatory response in his intestines.  No food trials for a few months, while getting nutrients his body has been missing for too long.  The homemade formula is missing or deficient in ~12 vitamins/minerals.   B vitamins are the big ones, being a plant based protein source, Vit.C (as mentioned) is another one. Some other ones we don’t often think about but are important for their own functions in our cycles of nutrition.    I know his nutrition needs, but I cannot provide for them.  This is an extremely frustrating component of this allergy for me, the knowledge of incomplete nutrition but not being able to provide for it, all in the same breath.

TPN has given Little Man significant weight gain, catch up growth.  He has gained ~1/2#/week while on the TPN and is now over 30#!  He went from 2T clothes being big on him to now fitting in some 4T clothes!  It has been dramatic and so great to see.    His hair also has grown in really well.    As mentioned above, he was missing some nutrients but in addition to that, he was also malabsorbing many.   His homemade formula provided the same amount of calories- or more! And yet he could barely maintain his weight much less gain weight.   He had times when he would gain (probiotics is one, taking breaks from trials is another) but then we would do a trial and he malabsorb for a few weeks again before evening out and then have to spend time catching up on the weight loss.  A vicious cycle.  TPN threw a spoke in that cycle and allowed him to gain weight and catch up.  

TPN has given Little Man the IV hydration his body needs after a reaction now that we have started food trials once again.   IV nutrition is the treatment following an FPIES reaction, the hydration he gets overnight via IV is exactly what his body needs to “flush out” the toxins the body turns his food into; we can see that clearly for him…and we are so grateful to not have him suffer for days on end.

So, what is the worry?  He’s thriving on TPN, can’t he just stay on TPN?  A PICC line (the IV access line he needs for the TPN) is high risk for infection that can quickly lead to sepsis.   Little man has had this once, I don’t want to see that ever again.     It was reassuring to see his body fight so hard, and know what to do, under such dire circumstances.   But I never want to see him have to endure that again.   But each day with the PICC line is a risk that it could.  TPN is also very hard on organs, liver and kidney’s that have to filter these substances directly- with no filter from the intestines to assist in this process it goes straight into his blood – directly feeding his cells.  These risks are high.  TPN is not designed to be forever, for now the benefit has outweighed the risk for Little man as it is what keeps him thriving, giving his gut rest while we wait for his immune system to mature – to not attack food as toxins.

So, how much longer will he have TPN?  It was supposed to be a more temporary situation but the gut rest alone hasn’t been enough, the nutrition it provides hasn’t been enough.  It has all helped significantly but it has not erased his body having FPIES.  It does not erase that we still have to trial all foods to find him a menu, it has not erased that he has recently had reactions to strawberry, egg, potato, and he refuses to eat coconut, pork, beef, cauliflower; and now even pineapple is questionable.  TPN gives us the safety he needs to push through food trials….but the clock is ticking….