AnonymousChristine, I’m pretty sure that Hailey has a tonsil issue, but we don’t know what to do about it. There’s kind of a debate whether it’s good to have this done in kids with feeding aversions b/c the pain can be so severe after and trigger a relapse, I guess. The should be decent drinkers at least to prevent dehydration in the recovery phase. Either way, I really think the sleep study is the best bet for us. Then we can find out exactly what’s going on with her at night. About the cavities, she already has those white spots on her teeth which I am already afraid are going to rot b/c of the night feeds, the mouth breathing, and the frequent vomitting and refluxing. The only thing shse has going for her is that she sucks her fingers which increases saliva production, but it’s on and off during the night. When the fingers go into her mouth, she starts to sound like she’s snoring.
Lauren, why no one has helped is kind of the magic question. There’s not really a clear answer. She was diagnosed at 8 weeks when her feeding aversion became full blown. I had to start sleep feeding her and we got a referral to a ped GI who told us that we were on the way to a tube even though we were sustaining her weight this way. The GI didn’t believe in the marci-kids dosing of meds, and even though she was on a pretty good dose, it wasn’t that aggressive. Also, we didn’t have all the meds here, and the only options we had were to compound prilosec or to give the prilosec capsules in applesauce. Well Hailey wouldn’t eat b/c of the feeding aversion and you know our saga with incorrectly made compounds. In between trying to get all this sorted out, which was from 2-10 months we were trying to get in to see new doctors and try new pharmacies and options. We saw one who did nothing but weigh her and say she was fine and would outgrow it, and then another who said the same. We finally got referred to the children’s hospital at 6 months and had to wait until she was 10 months to get in. Our ped didn’t know what to do, and called them to see what they thought about upping the meds, but they wouldn’t go higher. We tried caracream with losec, but it made Hailey throw up. Finally prevacid came here and that was really the answer for Hailey. She would sort of take it in caracream, but we still had the reflux and the feeding aversion. The prevacid helped with the pain, and the feeding therapy with the feeding issue. The doctors felt that she was fine because her weight was good. They didn’t care that she didn’t sleep, told us to do sleep training. They told us that she ate enough because her weight was good and didn’t care about her feeding aversion b/c we were supporting her weight through sleep feeding. That’s the position we’ve been in and remain in for some time now. We are being seen at our children’s hospital, they don’t really think anything is wrong, and because of this, we can’t really see anyone else. Our health care system is kind of strange there. That’s the abridged version. They all thought that she’d outgrow it, which she hasn’t.
As for the dairy/soy free diet, we never really were able to pursue it very well. Her feeding aversion was so ingrained right from the time we knew something was wrong, that I couldn’t get her to take anything other than expressed breast milk. I tried the hypo formulas but she wouldn’t go near them, even when mixed in. She refused neocate. We were at a point where we had to decide between tube feeding her neocate, or proceeding with breast milk and goodstart (which for some reason she didn’t totally refuse). We tried soy, which she also took, but it landed her in the ER with constipation. At this point, we really try to limit her dairy and soy, but don’t cut it out altogether. We need to find a balance between supporting her calorie intake and feeding problems, and the reflux. It’s a difficult situation.
