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Wednesday, July 23, 2008

Beef Has Moved into the Failure Column

Well, after all that, it's pretty darned clear that Hallie failed her beef trial. Sharon was out with a client for dinner, and I was home giving Hallie her dinner. Lately, that's not been too traumatic, and Hallie and I were having a nice time watching Elmo & co. while she ate bananas and prunes. She was just about done with her six ounce serving when she gagged (not on anything...just gagged), coughed, and spewed. And spewed. And spewed. She was covered, her high chair was covered, the floor was covered, and it just kept coming up. This is the typical pattern with her food allergies: she has very delayed reactions to many foods, but when they come, they just keep coming.

I ran out of paper towels up here (there are lots more in the basement, but I won't leave her unattended to fetch them) so I resorted to wipes and napkins, and Hallie is generally well behaved in these situations and cooperates with shirt removal and cleanup. I got her relatively clean, gave her some drinkable Yo Goat (thank goodness that Whole Foods is carrying it again!), changed her into a clean diaper (it's rare that the outside is more soiled than the inside, but tonight was one of those nights) and gave her a bottle. She clearly felt better, drank some bottle for me as I cleaned up as much as I could up here, and then went upstairs for her bath. Sharon came home mid-bath (Hallie was thrilled to see her) and got Hallie settled down with more goat milk formula. We managed to get about 12 ounces of formula into the kiddo, so she's not in any danger of dehydration.

Meanwhile, my excellent mommy friends over at the Preemie Blog Moms were very supportive about my venting. A couple of them independently raised the question of whether Hallie has Eosinophilic Esophagitis and not just FPIES. This is a great question, and actually one that came up yesterday during our Pulmonology appointment. Liz asked whether Hallie might have EE, at which point I noted that her scope last August came up clean. Liz said that her sense is that this might be inconclusive because Hallie's gut might not yet have been mature enough to show Eosinophils (pronounces EE-OH-SIN-OH-FILS---I have trouble saying this word, too!). The vomiting plus dysphagia (inability to or difficulty swallowing) is a decent indicator that tis is what we may be facing. The only thing that suggests otherwise is Hallie's nearly-miraculous capacity to put on weight in the face of all of this. She has only really lost weight twice in her life, and that was back in April 2007 when we ran out of breast milk and January 2008 when we stopped adding all of the extra stuff to her goat milk (which also was, probably not coincidentally, the only two week period when she stopped vomiting entirely....I suspect that stripping away the Enfamil AR and possibly the Karo Syrup was responsible for her complete symptomatic resolution at that point).

So, given all of this, I quickly shot off an email to our team---our ped, our allergist, our GI, and Liz. I'm not sure what this will mean in terms of testing, but it will probably mean little in terms of treatment (a few hours of research on POFAK and other websites suggests this). It's clear that the safe foods are safe, and we probably risk very little trying new foods, except that we would need to avoid the top 8 (milk, soy, eggs, tree nuts, peanuts, fish, shellfish, and wheat). We already know that she is not okay on milk, soy, eggs, and wheat, and we were avoiding peanuts and shellfish as well. The question is whether we can get another protein on board, and chicken/turkey/poultry were big no-nos for FPIES. Anyway, I suspect we may just try to add more fruit and rely on our nanny goat formula until who knows when. The big kicker for EE, though, is that there is a lot less of a chance that Hallie will outgrow things, and that would stink.

The upshot is that we're still on six foods and we still have a mystery on our hands and I still need to continue my training and research in the medical/pediatric field.

We did get one more vomit free day out of this week, though, so that makes it 86 for the year. But given tonight's happenings, I'm once more in that glass-is-half-full kind of place. I'm really tired of research, but more importantly, I'm real tired of Hallie having to experience so much pain. It seems so unfair that she has been through so much, and so amazing that, despite it all, she is such a sweet, good-natured, and wonderful little kid. Our OT, Jenine, who was here for the first time in a three weeks was utterly impressed by Hallie's growth and development over this period. Jenine noted that Hallie still has some low tone issues, but her stance (more close-legged) is much more stable and her speech development has been utterly phenomenal. It was nice to hear that a few hours ago, and is very good for me to think about this, right now, as I ponder the future and the things/conditions that Hallie has yet to face.

2 comments:

Kirsten said...

Oh, darn, darn, darn, darn! I am so sorry to hear about the beef failure. What a pisser for you and for Hallie. Wish I could have been there to run and fetch paper towels, too -- seems like my timing was, er, impeccable.

"Chin up," is all I can say; looks like you're not going to get rusty in your research skills anytime soon, sadly. But -- and it's a big but -- you have a remarkable little girl there, and her good spirits and good humor are really amazing. Miss her already!

23wktwinsmommy said...

Ugghhh...I am so sorry to hear about Hallie's continued food-related difficulties. I think back to the times when S&E are sick and throw up all their meals. This is very rare, and I can't imagine how challenging this is for you and Sharon multiple times per week.
I can also imagine it is very difficult for you to have to ponder what this means long term for Hallie. But the great news is you and Sharon are excellent parents and will exhaust every option to help Hallie with food and eating. She is doing amazing and hopefully very soon you will have more answers and Hallie will tolerate other food options. Hang in there. Big hugs to you all!