Tuesday, August 3, 2010

As I get ready to start our first food trial...

As I get ready to start our first food trial tomorrow (pears!) my head is racing. I think that when people have a manic episode, it might feel a lot like this. I can't stop thinking about FPIES FPIES FPIES. I've gone over things a million times and can't find a reason not to do this. We've done all the prep we can. As I go around and around reviewing all the FPIES info stored in my noggin I've realized that there are some things we haven't told you and, as long as I can't stop thinking FPIES FPIES FPIES I might as well type those things out for you. It's better than driving John nuts anyhow, right?

So here's what you don't know yet....
1. Although we did get an (oddly belated) FPIES diagnosis from the doctor at Comer Children's Hospital, as well as a confirmation of this diagnosis from Boy Wonder, Ginny's case has always been a bit unusual. Although first time reactions for allergies and intolerances are often not immediate (and sometimes don't even occur until a second ingestion or sting or skin contact, etc.), Ginny ate rice cereal on a Thursday and didn't vomit until a Monday night. That's kind of a long time. It has stuck with us and with doctors as something odd, and certainly makes John worry, occasionally, that Ginny still hasn't been correctly diagnosed. So... I was pouring over the FPIES chat boards last night (someday, I will devote an entire post to praising these incredible, intelligent, caring women!) and found something that feels a lot like a light bulb to me. The first time we went to the ER, John was convinced that G was puking because he had let her drink too much bath water. At the time, I called him crazy. The ER doctors assured him that this was not a possibility. Now? Well...at the time we were using Burt's Bees Baby Wash which, it turns out, is chock full-o-soybean oil. If she does react to soy and he let her drink lots of water via the wash cloth (yes, I know that is really, really, really gross), well then... that might be our missing link. Wow! Crazy, right?

2. Tomorrow we intend to feed G the smallest possible amount of pears. Not a teaspoon. Maybe an eighth of a teaspoon? The thing is, FPIES kids have had full blown reactions from even just a teaspoon. See why I'm all manic tonight? She loves me. She trusts me. She crawls to me and reaches out to me and snuggles so sweetly in my arms after she falls asleep at night. Her face lights up when I enter the room and, without a doubt, mine lights up in return. We have long conversations that involve nothing but the exchange of razzberry noises. Today, she is absolutely, perfectly healthy. And tomorrow, I may be the one responsible for her heading to the ER. I know, good intentions, right? And she has to eat something someday....

3. Again, thanks to the moms on the FPIES chat boards (and the verification of this info from Wonder Woman), I now know that, should we head back to the ER, I will not allow doctors to give G Zofran (the medicine that makes her stop puking). I had rolled the thought around in my head quite a bit; wondering if it isn't a better idea to let her body rid itself of the reactive food instead of giving her Zofran and trapping the offender inside to continue wreaking havoc on her digestive system. The answer: it is a better idea to let her body do what it knows it should. We'll skip the Zofran but work to get an IV in as soon as possible. Eventually, the vomiting will stop on its own. Keeping her hydrated will do wonders for a faster recovery.

4. Boy Wonder will, in 2 weeks, patch test G for milk and soy FPIES reactions. I can't wait. I'm thrilled. Really. Thrilled! Those tests are 95% accurate and I couldn't ask for more definitive results. The thing is, other FPIES kids are getting patch tested for ALL SORTS of foods. Loads of foods. Perhaps the results aren't as accurate, but again, I'd happily leave out more foods than I had to if, in turn, we also had a bigger list of safe foods. If Boy Wonder would test for more foods, he would get to be the superhero and not the sidekick. John will get mad at me for writing that here, but it's true.

5. I have mentioned, in earlier posts, that FPIES reactions don't happen via breast milk - and they don't, at least not the big ones. Nowhere have I heard of a kid who has puked their way into shock from a food ingested via breast milk. However... the rest is murky. There is quite a bit of anecdotal evidence that lesser reactions (crazy diaper rash, skin rashes, cramping, gas and, most importantly, the irritation of the digestive track that leads to loads of other issues) are happening due to trigger food ingestion via breast milk. It makes sense, although most doctors aren't quite on board with this yet. If a child is diagnosed with either a milk allergy or milk intolerance, a nursing mom must cut milk out of her diet. FPIES is on the food intolerance continuum and mimics an allergy. Why wouldn't this be true for FPIES? Furthermore, some moms and doctors believe that, even if a child doesn't react to a food via breast milk initially, once the child directly ingests that food, they may begin to react to it via breast milk. So... for example, if Ginny reacts to pears tomorrow, pears may need to be cut from my diet because they could cause her problems via my milk. That's all really good to know, however, that makes each food trial a double edged sword, right?. If we never feed her wheat, I can eat wheat and she can get the nutrients from that food safely. Currently, I don't think she's reacting to anything through my milk though - and I'm hoping it will stay that way. She definitely reacted to either rice or soy and I haven't cut those out and she hasn't suffered so, we're hopeful this won't be a problem for us.

6. There are two big hospitals that we know of thus far that are doing the majority of FPIES research and are disseminating the majority of FPIES wisdom. I've previously mentioned the Children's Hospital of Philadelphia (CHOP), and the other is Mt. Sinai in NYC. If things get icky, we'll be taking a little vacation to one of these cities for sure. I think John wouldn't so much mind going to Philly. He's a big Rocky fan. Me? I'd like a healthy kid and a trip to the Bahamas :)

7. I have never given so much thought to when I would feed a child. I have actually decided to feed G tomorrow morning. (No, I won't be calling you to give you an update each hour.) Why? Well, if we have to head to the ER it will be easier to find someone to watch Ellie during the day. Furthermore, it would be easier to be there during the day and not overnight, thus trashing John and I for the following day. Most importantly, however, I don't want to feed G and put her down to sleep for the night. I am petrified that she'll choke on her vomit someday and feeding her in the morning lessens that possibility.

Okay, time to go try to think of something, anything else but FPIES FPIES FPIES. Think I'll be able to do it? Think I'll be able to sleep well tonight? Yeah, I hope so too....

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