Trying not to get too discouraged....or, too excited?!

Today was some of the same symptoms as yesterday but not a build in symptoms; actually if anything- they were less. I am still confused by the symptoms at all, if this is going to be a pass but I am so encouraged that things didn't build. Maybe what we are seeing is left over from the Alimentum he had this weekend? It wouldn't be the first time a trial got muddied by being too close to a fail or just from a food that caused symptoms.
 He got 3 doses today (2tsp at a time, in 3 different bottles throughout the day). His symptoms to note are: crankiness when waking this morning and from nap....but I have to remind myself that is not abnormal for him- he really struggles with this transition and I really wish I knew why.
 But the good news, other than that- he was his normal mild-natured self all day. His cheeks aren't as rosy/chapped looking but it is waxing and waning still a bit. The concerning symptom of the blue coloring (cyanosis) around his lips and eyes is still there- there was a point today I just couldn't get over how terrible he looked.....but he was acting fine! He took a good nap, and he has fallen asleep easily tonight. His bowel movements have been great (yesterday and today)- no mucus, no blood, no increase or liquidy diapers, no diaper rash, no allergy ring; but there has been hiccups- twice. I know, seems silly right? Well, he's gotten hiccups before a fail before. He's also gotten hiccups randomly just like anyone else so who knows if this is a warning sign or not.
 Either way, we press on. We press on encouraged because his appetite was good today- he ate his millet "cake" for lunch, and he had snacks through the day and willingly drank his bottles, and had dinner even! I made mashed potatoes and he LOVED them! I mixed them with his safe oil (Safflower) and his hemp milk. He ate a few tablespoons, and then he followed that with gobbling down 3 mini millet muffins and a whole cup of peach juice (peach puree + water = his safe juice). He then had a bedtime snack of 6 mini muffins. 

The next day started out well, actually really-really well. The two little boys played SO well together! And then as the late morning wore on, we started seeing him crumbling...little things were upsetting him, he wanted mommy or daddy right next to him, he was getting obsessed over things (he has odd obsession behaviors when he isn't feeling good), he had 2 bowel movements - that although they didn't have any reactionary look to them, 2 in a day is out of his norm, plus that "allergy ring" was showing and some spots around his diaper area. What is this about? I actually didn't go right to the ProViMin in my head....

This is where it gets really hard....when you start seeing symptoms but you can't be 100% sure if they correlate with the trial or from something else....accidental exposure, cross contamination, etc. My head went to the Potato Stix he had eaten that morning. We initially found Pic-Nix potato stix at a Fleet Farm on our way up north last weekend. Everyone was getting a treat and I picked it up and read the ingredients: potato and cottonseed or palm, or safflower oil, and sea salt. Safflower oil is his SAFE oil! Right under the ingredients it states that it is manufactured on a dedicated line- no line cross contamination risk! The risk with it though is we're not sure if cottonseed or palm are safe....and actually have had suspicions that they might not be (from other foods with them). But, I took the risk anyway...we're traveling, he's not eating.anything. on the drive....I wanted him to have something to re-stimulate his appetite and was excited to give him a snack, just like this brothers were getting. I took the risk, for him. He ate the entire can over the course of the weekend, no symptoms to note. On the way home, we didn't go the same way but discussed that maybe we should have - since that can was seemingly safe, we should stock up!! Although we do have a Fleet Farm down the road from our house. I ran some errands earlier this week and decided to get some more, from our local Fleet Farm. I brought them home and he wanted some, took a few bites and then didn't want to eat them. Huh, well- maybe his "jag" is done and now that we're home, he wants something else "new"....or maybe it is a different batch with a not-so-safe oil and he can tell? My radar goes up a little. But, he has been asking for his "star cake" so I've been making that everyday (millet muffins made with a small star silicon pan). With the addition of pure maple syrup and ground CheeCha puffs (for potato starch/flour), the texture holds up better than his mini muffins ever did and he's gobbling them up- by the fork-ful! I'm amazed at how well this little boy is using a fork and spoon!

Ok, this is getting long so I better get to the point! Yesterday, he asked for his "potato chips" first thing in the morning. I hesitated- thinking of how he hasn't wanted them and what if they contain a unsafe ingredient and we're in the middle of the ProViMin trial,... but he has been wanting to eat before his morning bottle and I don't want to discourage that! So, I let him eat some- he didn't eat many and then he wanted his bottle, we decided to up the dose of the ProViMin yesterday- he has been SO pale and he needs the nutrients so his body can make iron if we have any hopes of not having to have another IV Iron infusion or blood transfusion. He took his 8am bottle and his 10:30am bottle well and was playing well all morning and then he had a full lunch of peaches, a potato pancake, 4 mini millet muffins, and some more potato stix. After lunch, he took another bottle and he started to get really crabby, we hoped he was just tired and an hour later he took another bottle and finally went to sleep. He did fine all evening, although his appetite was decreased and he was a little clingy to daddy. We got home late and he went to sleep easily and then he woke up around 3am SCREAMING!!! Yelling and screaming and thrashing and then hitting and kicking and screaming! He woke up everybody in the house, he was just crazy!! It's 3am!! We finally got him calmed down but he stayed awake for at least another hour. The next morning he was very crabby all morning- everything causing tears...all out of sorts. He seemed to be getting better as the afternoon wears on, so I am still hoping my instincts are right and that it was the potato stix and that will just have to work it's way out of his system (the can went into the garbage!) and not the increased ProViMin (went from 2tsp/bottle to 3tsp/bottle- upping his intake to 1/4cup/day (end goal being 1cup/day of ProViMin). I am also worried about his anemia and fear we have to face it and bring him in for an evaluation soon- he is so pale and has been for at least 2 weeks now, and this disturbed sleep (sleeping but not acting rested and then being up in the middle of the night) are familiar anemia symptoms. Also, his tube looks terrible!! I'm ready for it to just be taken out...we can't use it and he's now complaining again of it hurting during the day, and who can blame him? It's so red and inflamed, it looks like it is going to push itself out!! Time to address it. Surgery has given their recommendation - to pull it out, that it is causing more pain and adverse symptoms than it is helping (for sure!). His doctors are not sure if we are there yet with it and still hope to utilize it. We are just not sure. We continue to pray that the ProViMin will work out.

Expanding Menu

Potato continues to be going well.   He has CheeCha puffs, which are potato flour, potato starch, and salt and then puffed.   He has eaten baked potato and mashed as well as fried….none of them in too large of quantity since he still mainly nibbles his foods.   We tried a potato stick by Utz, ingredients were cottonseed oil and potatoes.  He had irrational tantrums that coincided with eating them two times, so we simply threw them away- unsure if it is the cottonseed or a cross contamination issue or what but no reason to take any further chances when we can just move on. 

Normally, I would call the company and be sure that there is no cross contamination risk but that is easier to do when you know which foods you are strictly avoiding.  Many of little man's allergies are different. Dairy- we pulled before he was 6mo.old, already connecting a milk protein intolerance (and history of that with the other boys I knew he would need to avoid until at least around 1yr.), soy we had rechallanged when he was 18mo. because we just were never sure when we tried soy at 5-6mo.old what it was that he wasn’t tolerating in it and since the soy formula we used also had corn- was it the corn syrup in the formula?  Maybe, probably.   A soy challenge was when we first learned some of his reactions result in small intestinal villi damage….possibly more of what is referred to as Enteropathy. (sometimes even called FPIE (without the S)- Food Protein Induced Enteropathy.    Although the reactions are not as acutely severe as FPIES (there is no shock), the effects can be just as serious.  So, we have avoided soy in any forms as well.   We suspect that some of his reactions are this enteropathy where some are the FPIES.  The severe acute FPIES almost seems protective of the more-long-term damage of the enteropathy, because with an acute reaction- at least we know sooner rather than the side effects of a chronic FPIES state he has all too often settled into.  We know we need to avoid dairy, soy, rice and corn.  There are a few others that were bad fails (sunflower, buckwheat ,....).  Thankfully, little man hasn't had a full shock episode from first exposure of a new food. 

Back to potato and the expanding menu....in my search for fun ways to serve potato, and a potato pancake recipe, I came across a Pizzelle maker.  Pizelle’s are thin waffles- and can even be made into a cone or a rolled shape to fill.   It was not a cheap kitchen gadget to add to the growing supply but all I could think of was how much he likes crumbs and crisp and that his ingredients are more conducive to producing thin/small recipes than thick/large ones….so I bought it. 

I made him his first pizzelle right away- utilizing a potato starch that I am still hoping is safe (but not sure); but most of all using a baking powder!    We have successfully been using baking soda in his recipes but baking powder has corn starch in it, all except 1-2 brands- Hain is one, it uses potato stach.   With the addition of these ingredients, there is enough to hold together dough to successfully make the pizzelles!  “Waffles”!  he says!  

With waffles, came pure maple syrup.   I had bought some months back so had it in the cupboard, which was a good thing because his brother was having waffles for breakfast and got out the syrup, little man promptly asked "syrup, yes?" And I was able to say "yes, syrup!" He LOVED it!! He ate waffles all day long for a few days!  Noticing a trend here- when he discovers a new safe food, he goes through a typical toddler "jag" and it is all he eats, sometimes all he can think about! 

So, we are expanding his menu and experimenting with the new ingredients.  He now has hemp, millet, safflower oil, arrowroot starch, peaches, cocoa, potatoes, and pure maple syrup!  What is next?  

Pizzelle Waffles

Pizzelle Waffles:

Combine:

5Tbsp. millet flour

1Tbsp potato starch

1/2tsp. baking powder (Hain)

1Tbsp. Hemp seed +1Tbsp. water

3Tbsp. oil

Can also add pure maple syrup to the batter.

Mix ingredients together.  Preheat Pizzelle, spray well and scoop 1Tbsp mix onto plates, close and set darkness (3 works well).

546 calories, 3.7 g protein, 43 g CHO and 41 g fat. 

Potato Pancakes

Potato Pancakes:

2 cups mashed potatoes (or grated)

¼ cup millet flour

2-3Tbsp. hemp seeds +2-3Tbsp. water

Generous amount of oil in pan, heat oil on medium high and cook pancakes until crisp.

Recipe provides approx. 225 cals, 4.5 g fat, 27 g CHO and 5.9 g protein

Potatoes and Good Days!

Ok, NOW we get to the good days!!   Despite all the granulation tissue and tube issues this week...we are having a good week because Little man is tolerating potato!!!    

It started last Sunday when we had decided we would discuss adding the beet root compounded VIt.C (it would be a trial) to his Alimentum feeds- even if we could only get one Ali feed in per day, we could use that feed to get him all his Vit.C (the biggest missing nutrient from his hemp milk formula and the amount of peaches he eats isn't enough to fill in the gaps when he is low).   We went to an evening church Mass and after church, we have potluck and it was right at dinnertime and someone made some really yummy smelling dishes- everyone was hungry!  Including Little man!  He took his place in the buffet line and grabbed a plate and fork and asked for food.   

Many meals at home are hard for him too, the smell of the food (natural instincts), the gathering of the family,...he wants to be included too.  And we WANT him to be included too- and for it to remain a positive experience for him, not one where he feels left out or deprived.   So, we've found safe ways to include him, but somedays (even at home) we miss the mark and either nothing is distracting enough from everyone eating and him not, or I don't have anything to offer him.    Today, at this potluck, was a combination of both.   People were gathering, I was there alone with the boys (hubby working) so no one to take him out to distract him + yummy smelling food + a desire to be included (kids his size and age grabbing plates)+ dinner time= hungry....but I did not have anything for him!!   I, of course, brought his bottles so I offered him that to which he said "yes" he wanted his bottle.   He claimed his spot at the table, fork in hand, with his empty plate.   I got him his warmed bottle and he looked around and declared he did not want his bottle.   I ran to the van to see if I had some millet puffs stashed away- he hasn't had them in a long time but maybe he would be distracted by this safe snack.  But, no puffs.  Shoot!   I went back in and scanned the buffet line, a clean fresh garden salad- lettuce, cucumbers, peppers.  He hasn't reacted to any of these foods, they aren't UNsafe, so I put some on a plate and hand them to him- he is excited at first but then not as distracted as I had hoped.  I decided, on a-still-don't-know-what-made-me-do-it-whim to give him some mashed potatoes!  I knew they weren't boxed potatoes, but that they likely did have milk and butter in them.   But I am still encouraged that him not having any acute reactions to Alimentum (a broken down milk protein he had previously reacted to as an infant) means that he is outgrowing/outgrown of his milk allergy (and the only way to know is to have him try it).   We aren't in any rush to try dairy because of fear that it would sensitize him to the broken down dairy in his formula but he hasn't had an acute reaction to it....I made the quick decision to take the chance - on potato and on dairy, and let him have a tablespoon or two.   On the back burner in my mind is his growing POSITIVE relationship with food- to be included, to try new foods, to learn to eat and thrive on eating.  FPIES doesn't get easier as they get older, the challenges just change.

I put a tablespoon on a small plate and he devoured it!!  Well, nibble by nibble in the way he devours food!   I nervously sat and watched, immediate reactions of hives or anaphylaxis aren't our concern but this could be a long evening and a set back....was this a weak moment or a good decision??   He asks for MORE, he ate another 1tbsp or so.   I decide I better find out exactly how she made them, and what ingredients were included.    Real potatoes, milk and butter....but she usually also adds sour cream and cream cheese (they are REALLY good and popular and she makes them every potluck!), today she did not.   She even comments on THIS being the reason why....everything happens for a reason.   

We got home and he was overtired, and had a few tantrums and I was getting really nervous that this was the beginning of a reaction....mixed emotions were setting in- guilt, anger, fear....I finally got him to settle down and he fell into a deep sleep.   Huge sigh of relief as I watched the clock.   It was 5:15pm when he ate the potatoes, typically it takes 6-9hrs (sometimes longer although he is NOT the norm because it is usually 2-6hrs) when we see a reaction.  11:30pm came and went, 12:30, 2:30, dawn, he woke up happy and ready for the day!  What??!?!!  NO vomit??!   No middle of the night choking on green vomit fest??!   

Ok, dairy ingestion aside (cross that bridge another day) but this is a GREAT sign for potato!!   We have done potato a few times in the past few months and some days it went ok and other days he had symptomes.   We had started with baked potato.   One  day, an unplanned trial (kinda like the one above) began when I had gone to Wendy's for dinner for the boys - I decided to include Sam and get a baked potato (plain of course), dinner "on the go" just like his brothers (they get the baked potatoes too)- he was THRILLED and ate a few bites.   That night, NO reaction symptoms and the boys started to think of ways to add potato to his diet.    The timing wasn't good and we decided to not proceed with a full trial since we couldn't risk a reaction at that time.    We came back to potato during Dec/Jan trials we were doing.   Baked potato worked once or twice but he lost interest quickly, so I found some potato chips NOT made with corn or vegetable oil (the oil used was sunflower or safflower; he is safe on safflower but sunflower hasn't ever been fully trialed.  We got vomit - FPIES bile vomit- from these chips, changed brands (still same oils), also vomit.  Was it potato or the oils?   The oils won't always cause a reaction in FPIES kids, but little man has had reactions to oils (corn) so we can't be sure.    

Tolerating the mashed potatoes is REALLY encouraging!    Monday morning, his brother asked for a snack and so little man did too- this isn't new....he often asks for a snack when his brother does, everyday hopeful that he will one day get to eat what his brothers eat.   Monday, I decided it was time to pull down the bag of CheeCha Puff snacks!!  They are potato starch, potato flour and salt.   They are puffs shaped like wheels, a company from Canada and you can only buy them online (Amazon).  I got 3 sample bags from the MN Food Allergy Support Group Fair this past fall from The FPIES Foundation samples CheeCha puffs donated to give out (cases of full size bags!).   Since you can only order them online, and by the case, I took advantage of the samples to have enough to do a trial before we buy the case. 

He ate half the bag the first day!!!!  He finished 2 bags by Thursday!!  He LOVES them, and has been eating them constantly!!  We SHOULD be able to call potato a pass, with such large amounts consumed with NO symptoms of concern....but I'm nervous to say "pass" just yet.   But, he's getting them as if he had....he couldn't be happier!!!   

So, there is our good days!   So many other things going on but he is tolerating a NEW food, a 6th food to his safe food list, something he can have in a convenient snack too! Something that he can eat in large quantities without causing issues with this carbohydrate intolerance (they are puffs of air), something thatmakes him feel included and BE included.  

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.