Thais, I think it’s a good sign that Matthew is waking up hungry! At least it shows that he has a connection between eating and hunger cues and that’s apparently an important start. Is Matthew really walking and running already???!!! I can’t believe it! That’s so early. Maybe it will help him to build up an appetite.
Anne, Thank you again for your detailed reply. To answer some of your questions, right now Hailey is around the 40th percentile or so. This is pretty consistent for her, but I am worried about dropping in weight now that she has cut her calories so much and she is trying to become more mobile.
As for testing, I have been asking for it since Hailey was 6 months old, and the only docs who can do it here are the ones at the children’s hospital. They have a 7 month wait list. We were fast-tracked and seen last week after more than a 3 month wait. The GI there scheduled her for an endo and said that he’ll see us after that to talk further. Regarding the probe, he won’t do it before the endo, and if at all wants it done on the meds. Her meds have been increased to 30mg prevacid in CaraCream. Zegerid’s not an option here. After leaving the appointment, the nurse told us that they’ll call us with the appointment for the endo, but the wait is almost 4 months!, and then we can book a follow up with the GI. I was so ticked off. I have wondered about a hiatal hernia, and asked him about it, but he insisted that it would have shown up on the upper GI (which we all know isn’t true, but how can you argue that). We have had her ears checked because she pulls/scratches them all the time when she refluxes, but they’ve been clear. She recently had a blood series done to check for allergies and other things in general. Regarding the MSPI, I’ve always wondered and it was the first thing I tried after switching over from BF. But Hailey would not drink any of the elemental formulas. I know that people who have children who are normal with respect to eating don’t really understand when I say this, but I could add one drop to a regular bottle, and Hailey would refuse the whole bottle. And she would not give in. She just would not take them, they taste so awful. I talked to the GI about this several times, and they told me that the elemental formulas often work well even if they’re not MSPI, but for children who are almost non-eaters like Hailey, if they won’t take them then you can’t do anything about it. The choice is either to go to tube feeding and force the issue, or accept what she will eat. And that’s where we’re at now- sort of trapped in a system where the wait lists are forever. I just get more and more scared that she is going to be one of the ones who doesn’t ever outgrow this, and that petrifies me. I hope that I am wrong.
.
