Help with bottle aversion!

[mom2nicholas]

I am in desperate need of advice. I have a former 25 weeker who is now 4 months adjusted (7 months actual) has been home from the NICU for 3 months. When he first came home, he was feeding fine from the bottle every 3 hours (he would cry, we would feed him, etc). After a few weeks he started developing an aversion to the bottle and now he will only eat while asleep. Our pediatrician thought it was silent reflux and maxed his dose of Prevacid. The reflux doesn't seem to bother him, but he still won't take the bottle while awake. He doesn't cry, but swats at the bottle with his hands, tongue thrusts, leans back to avoid bottle, does everything he can so it doesn't go in his mouth. I'm scared because the SLP told us that he will soon lose the ability to eat in his sleep. If he doesn't sleep eat, he will literally starve himself and not eat. He doesn't cry for hunger anymore. We don't want a feeding tube...any advice out there?? Please help us!

[deditus]

I would call an OT for an evaluation ASAP. I would also visit a cranial sacral therapist.

[mom2nicholas]

What's a cranial sacral therapist?

[deditus]

A specific type of bodywork practitioner - it is sometimes practiced by osteopathic physicians, massage therapists, or chiropractors, also. It is abbreviated as CST.

[sbgrace]

This sort of thing (and sleep only eating) is so common in severe reflux. We really struggled even though my son was maxed on PPI's but my doctor wasn't dosing 3 x's per day. Is yours? I know you don't think it's reflux but that's the most common and most easily fixed. My recommendation is based on my son of course but I'd switch to Zegerid and see if that changes anything. MARCI kids website will explain why Zegerid is better than Prevacid or similar. Make sure he's dosed 3 x's per day according to their dosing guidelines.

This could be entirely sensory/fear based from past pain. We thought that with my son but in reality his pain still wasn't controlled. So that's where my perspective is coming from. My son did have residual issues with swallowing (fear based) but we couldn't really address those while there was still breakthrough pain.

If you haven't seen a GI I think you need to do that. There are things like this that can cause the pain and reflux meds don't help.

Does the OT have suggestions to work on the sensory side of this though?
My son was FTT until almost two when he inched back to the growth scale. We had started Zegerid at 18 months. We used high calorie drink so every swallow counted for more. He's fell off and on since. He never received a feeding tube but I'm going to honestly say that I am not sure it wouldn't have been better. He was stressful to feed until almost four when we lost the swallow aversion. It was such a struggle to keep him out of failure to thrive. It was so stressful as you know. And he's small--so small. I always wonder if he hadn't spent so much time in FTT if he would be bigger now at six.

[HRJ]

Reflux is often caused/aggrivated by cow's milk. I would try a hypoallergenic formula. I'd start w/ Alimentum. And if that doesn't work, I'd get a prescription for Neocate.

[Juvysen]

I don't know much about bottle feeding, but pulling back and not liking to nurse can be a sign of food sensitivities...