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Friday, October 21, 2011


Raya had a strange thing happen this week that I thought was worth documenting, so here it is. On Wednesday morning, Raya helped me make some Jell-O Oreo pudding. I would have taken a picture but I was too busy trying to keep her hands out of the bowl. I'm sure it probably wasn't the most sanitary process and there was definitely some double dipping involved.
Anyway, we made pudding, which I didn't expect her to want since lately she doesn't want much of anything. I dished out some for Kaida and some for myself and we sat down at the table to eat it. Raya climbed up on my lap and begged for bites, so I fed her as much as she wanted. After mine was gone, she still wanted more so I gave her some of her own, which promptly ended up smeared all over her hair. She had eaten about 1/4 cup total, which was the most she'd ever had of a milk product (except for maybe yogurt but that's a little different). I hosed her down and the day went on as usual.
At 10:30 that night, she woke up and had a fever of about 100.6. This is where it starts to get strange. The fever was the ONLY symptom. She didn't have a runny nose, no vomiting, no funny breathing sounds, no cough, no diarrhea, no rash, no tugging at ears, or anything else to indicate what was causing the fever. Since it was only 100, we decided to still give her formula overnight & see how she was in the morning. When she woke up yesterday, she still had a low-grade fever right around 100 but still had no other symptoms at all. I had decided to run pedialyte for a while instead of formula just in case things were going to get worse before they got better, but I wasn't sure what rate to run it at. I left the new nurse a voice mail at 8:15 asking whether I should run the pedialyte at her overnight rate (85ml/hour) or at the rate we do her bolus feeds during the day.
She called me back a couple hours later and said that since her temperature was only 99 or 100, pedialyte wasn't necessary and that I should schedule an appointment with the pediatrician. I didn't. (Then I realized that this nurse now probably thinks that I'm the helicopter parent that freaks out and calls the specialist when her kid runs a tiny fever.) I meant no disrespect by not doing what she recommended but taking her to a germy pediatrician's office for a 99.9 degree fever didn't seem like a good idea to me.
By noon-ish, the fever was gone but I noticed that the eczema on her legs was MUCH worse than normal. The fever never came back and by this morning, the eczema was back to the way it normally is. (she's had it since she switched from Neocate to Peptamen but the improvement in GI symptoms was worth the eczema)
I had asked the nurse if the lab results had come in yet but she said they were really busy because they were short a couple of nurses and she didn't know. I called the allergist's office and asked them but they said they didn't have them yet because it takes at least 2-3 weeks to get them back. Then of course, I called or texted friends whose kids have eosinophilic esophagitis to see if this sounded remotely like what their kids experience when they eat something they're not able to eat. Raya's been tested for EE before with endoscopies & biopsies and they've always come back clean, but she's always been on nothing but hypoallergenic formula when she's had them done.
This afternoon, I emailed my whole little story to the nurse and asked her to let the doctor know since nothing like this had ever happened before. She called me back a few hours later and said that the doctor thought it would be very strange for a food allergy to cause a fever but not impossible. She said to wait 5 days and then give Raya a teaspoon of milk & see what happens. If she tolerates it, we can go up by a teaspoon at a time & see if she continues to tolerate it or not. Bless her heart, sometimes I think she just tells me things like that to pacify me because we have an appointment with her in 6 days anyway and the lab results should be in by then so we'll know whether or not Raya's allergic to milk. Until then, I will continue to overanalyze what could have possibly caused a 12 hour fever of 99.9 degrees with no other symptoms except for aggravated eczema (oh, and one diaper that than normal) and will continue to wonder whether or not the 1/4 cup of milk in the pudding she ate could have been the culprit.
See, this is what having a mysterious child does to a mother. One little thing happens and you spend the next several days completely driving yourself crazy trying to find answers to the same old questions that may never have answers.

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