Wednesday, March 17, 2010

So Disappointed. . .

Not really sure what I expected to hear, but it certainly wasn't this. A couple weeks ago, B had a severe FPIES reaction to avocados on a Saturday and so we went into the pediatrician's on the following Monday for a follow-up. They seemed to finally really be taking us seriously and talked with me and my husband for a long time; I was able to ask many questions, to which they had no answers to but said that they would be asking the pediatric allergist and gastroenterologist they have been in contact with stateside regarding my daughter's case. So I was hopeful that we would get some answers or some guidance, right?

Fast forward to today. Someone from the pediatrician's office called me today to read back the report from the consult. This is essentially what they said: "Don't feed her any foods that she has reacted to." Really?! I never would have thought of that! UGH!!! Still no letter for the ER (hoping that they come through for me on that when we go in next week for her "well baby" check up), still no suggestions for whether or not to try anything new at this point, still no real support or signs that they think we should do anything about this, despite the fact that her reactions continue to worsen and despite that there are some concerns about her weight gain. I am not expecting a lot or anything unrealistic, and I know there is a lot of uncertainty that goes along with this condition. I get that. But I feel so alone in trying to make heads or tails of what to do next. I am so scared to try anything new--- everything new that we have tried since mid-December (other than arrowroot starch, which can only be used in small to moderate amounts in baking) has failed.

I want to try some new things, I want her to have more options. But at the same time, I am so afraid of her having another severe reaction and it becoming worse yet. . . . We don't have the facilities here to deal with a severe reaction, we don't have the medical professionals who know what to do with this. She can't even be hospitalized at our hospital if it came to that-- we would have to be sent out into our host country's medical system which is good, but I am so horrible at speaking the language and the hospital she would have to go to is at least an hour's drive away. . .

So I know I am ranting. . . just a little. :) Thank goodness for a sounding board! I am just so frustrated and don't know what to do next. Hopefully we will get some clarity at her well-baby visit. Only a week away. . . .


  1. I'm sorry! I feel your pain. I do. The first time I mentioned FPIES to my pediatrician, she said, "Yeah, I've heard of that" and didn't say anything else about it!!!
    Can you go to an allergist yourself? I just don't think pediatricians know enough, and most of them don't want to take the time to learn.
    I say write a letter yourself for the ER. There is a book Understanding and Managing Your Child's Food Allergies by Dr. Sicherer that has a sample letter in it your pediatrician can just sign. Do you have access to getting this book? I know you can buy on Amazon.
    With our move in the middle of everything, I just had to take matters into my own hands.
    As far as the food trialing...maybe try something like pears that not many kids react to. But, wait until it's been a month or so since her last reaction. (sorry I can't remember how long it's been) Good luck with whatever you decide!!

  2. Thanks for the support! We are considering paying out of pocket for an allergist (the hospital won't give us a referral so the insurance won't cover it), but there is the language barrier that makes us a little uncertain (neither my husband or I speak Japanese very well). I have some research on docs that speak a fair amount of English, but after delivering B in a Japanese hospital (the care was phenomenal!) and our experiences with the language barrier at that time, we are a little hesitant.
    As far as the foods, she does do well with pears already. They are one of her four successful foods, I would just like her to have a few more under her belt, as I am sure we all would for our LOs! :) I will definitely check out that book-- amazon ships to us out here and they are reasonably quick about it! Thanks for the tips!