FPIES or 2? Again, my thoughts are put to pen by a fellow FPIES mom. These two little boys and our families share many commonalities and, as it seems, we have yet another. These words, her thoughts,in this blog post: FPIES or 2? ...."When do I worry and when do I let it go? When do I correct the behavior and when do I cuddle it? These are behaviors that are not normal for [him]. We saw a lot of these as a result of internal pain that he wasn’t able to express" hit so close to home.
It is hard for me to see little man acting out or being cranky without associating it with something from his FPIES. Something that does help me (other than being with him 24/7) is to keep logs/journal/notes- whatever you want to call it. I take note of things that I suspect may be out of the ordinary, even if it could just be 2yr.old tantrum. Then, I know if it starts to show in a pattern- I can look for that. It helps a little....when I have time to review the logs!
Little man has primarily a very mild natured, even tempered, take-a-lot-of-hits-before-he-loses his patience, kind of personality. A personality I knew was there as an infant...hidden underneath all the pain....I knew he was in there....this is the little boy that I waited to come back to us. And now, we have hit the temperament and independent, coupled with frustrations of two....and we walk a fine line of phases of 2 or stages of FPIES?
Thrown in for some extra added confusion in his "atypical FPIES" is the mix of Anemia...and we didn't catch it soon enough, will we next time? And why is he still struggling with such severe and persistent anemia? I have been polling other FPIES families among different support boards, and there does seem to be a commonality of anemia happening. Thankfully, most not as severe as little man's. There must be something connecting this commonality among FPIES kids as well. Dr.Jyonouchi, whom we consulted with at the Pediatric Center for Rare and Complex Diseases has a theory on it, and we're hoping to consult with a new hematologist about that soon. But, first, we need to rule out additional intestinal involvement- does he have villous atrophy or inflammation that would not allow his body to absorb the iron? Does he have active colitis, or something more involved in the colon that he is having acute blood loss? Or is the plant protein based iron in hemp not bio-available enough for absorption in his body? Many questions to answer and I feel like we're in a race to answer them before we land with needing transfusions again. We sit and try to assess current symptoms, are they related, are they developing into a pattern? Do they look the same as his previous patterns of inflammation/villous atrophy/severe and persistent anemia?
- His cheeks are still somewhat pink, he still has his tanline from vacation.
- His mood is all over the place, but he is two.
- His energy is up and down, mostly down. He wants to be held and carried more every day.
- His sleep is only a little disturbed, but when he does wake up he is MAD and it is difficult to console him back to sleep.
- His diapers have a "glossy" look to them but there is no blood detected (tested for 6days last week).
- He is gaining height but has not gained weight in over a month, or longer.
- His appetite is up and down, but we still manage to get in ~1100 calories/day, in a 24hr.period.
- All of this we could do the "wait and see" approach but that approach has never ended in good results in the past when things start adding up like this; but mostly we can not because of the severe and persistent anemia.