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?  

Chocolate??

We've been doing well the past few days.  CheeCha puffs are going great, and bites of baked potato are without any symptoms at all!!!!!!

  

Now with getting a taste for new things, he has started asking for more things!   This little boy has few foods and few words but he said "chocolate please mommy, yes?"  and "ooooohhhhh, chocolate, yes?" when he climbs up in the cupboard to get it.    

What chocolate???   Well, at Easter time is when he first uttered the words chocolate- we didn't even have any candy in the house yet so I am not sure where he got the idea from but he looked up at me and said "chocolate please mommy, yes?" and this smile that would melt an iceberg....Now, again back to the approach we are at right now with Little Man, that if we know something isn't UNsafe- even if we weren't planning on trailing it....we want him to be able to try it- even if it throws a current trial for a loop, or a pause.  FPIES challenges just never seem to end.   

We don't want him to have negative associations with food and we certainly don't want to be keeping potentially safe foods from him- even if it is "just' chocolate!   So, to the store(s) I went....to find Enjoy Life chocolate chips, which I knew I had found in one of the stores here in town at one time.    

Enjoy Life is a brand that is allergen friendly and many corn allergic people can tolerate them, although some can not- so we are not sure if they are safe or not but they are the closest we can come to safe since other chips have many more allergens in them.    Enjoy life has few ingredients and they make a mini-chip.   Well, he was eating a lot of them and his temper was VERY short (a red flag for us for his calm natured little boy), other symptoms were popping up too but he was BEGGING for the chips almost all day long for 2days before his daddy just threw them away- his symptoms were building and his interest was not lessening so we just told him they were 'gone'.    Well, he proceeded to take the chair and climb up to the cupboard to check for himself, which is where he found the Hershey's Cocoa!   "oooohhhhh, chocolate, yes?".   I don't know if it is the chocolate or the palm oil/sugar in the Enjoy Life Chocolate chips, or a corn-tamination or what.   So, I figured we've eventually have to finish the trial with the Hershey's Cocoa (safe for corn allergic)- maybe by baking with it or something but he wants this cocoa powder today so, I thought I'd let him have a lick of the cocoa and he'd realize it doesn't taste good and that would be the end of it.    NO!!  He LOVES it!?! What??  I did talk him into mixing it into his hemp milk formula- so it's sorta like a pudding; but he prefers it DRY!   So, over the past few days he's had bites/licks of this Hershey Cocoa.    I can't say it is going great but it isn't causing any building FPIES symptoms that I would normally be able to see by now,  or the same symptoms as the Enjoy Life chocolate chips were.  

That said, I've hidden the cocoa anyway and am going to have to just put it on the shelf for a bit because there are too many things in the picture right now, and I don't want it muddy over chocolate...since there are some symptoms (that are likely from the chocolate itself, not allergic)- he has some disturbed sleep and he had an explosive diaper this morning.    Now, I can't say it is all from the cocoa because 2 nights ago, he spilled his daddy's cup FULL of Mt.Dew and it splashed EVERWHERE (it was all over him, and some got on his CheeCha puffs -- although I didn't realize that until later so he may have gotten some Mt.Dew exposure (High fructose CORN syrup)....his daddy usually drinks diet (which still has corn but not HFCS) but I had bought him a case of the regular for a treat for his birthday.  Well, I can't be sure little man didn't get some exposure - from being on his skin or splashed on to some CheeCha puffs he ate, or....I don't know.  He slid downhill these past 2 days, his energy was down, his mood was sour, he had this weird rash around his belly button (where the soda splashed??),....and then there is the diapers and the disturbed sleep (from cocoa or corn-tamination?) OR, is his tube bothering him?   

Muddy picture, fast.   Back up....let's figure this out.   He is increasing amounts of Alimentum in his hemp milk formula that he is drinking- he's up to ~15+/day now!  (1-2oz. per bottle)!!   Can't be sure that isn't coming into play here also because we observed building issues with increased amounts of Ali when he was on the NG tube but we thought that was due to the tube and the lubricant they used to place it but we still haven't ruled out Alimentum intolerance (worried it is too high in sugars for him, or maybe the source of fats are a problem for him).  Or, is this all related to tube pain?  Possibly.  We need to rule things out one by one.  Corn was a potential exposure- symptoms flared up, we should see them flare back down, back to a baseline...he obviously hasn't continued to receive Mt.Dew splashes.   Cocoa- take it out and see if things improve.   They were improving already this morning, so I am still not sure what to think. The other factor -  the tube or a abscess or infection brewing, is this belly button rash related to tube or some random eczema rash?  A call to the surgeon's nurse and it is decided he needs to be seen....

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.