Neocate- Experience so far and ?'s

[Anonymous]

After taking Reglan and it making me sick, my supply took a huge hit(and it gave me insomnia, yuck!). We had to start giving Owen formula. After trialing the Alimentum and having Owen cry each night after eating very little of it, the GI decided that we should trial Neocate. We are currently on day 4. We had to move to full bottles of only Neocate because anytime breast milk was combined he would scream and refuse to eat it. When it was offered by itself he would atleast take small amounts. If we made the mistake of giving him a BM bottle later, the Neocate bottle would be accompanied by screaming again.

He is still only averaging about 20oz of food which is the same as the amount of breast milk he was eating. He had already made huge improvements with my modified diet but he still had the red anal ring. After 2 days on Neocate the ring went away.

My concern is his sleeping habbits. He used to sleep for a 6-7 hour stretch every night. Now he is getting up repeatedly and sometimes he isn’t even wanting to eat. The first two days he wanted to sleep most of the day. He would only wake up for 30 minutes or so and he was ready for a nap again. When I called the Neocate line they told me that they thought it was happening because he was exposed to an unknown allergen for so long that he was trying to catch up on sleep. It made sense when they said it , but now I am not sure why he used to sleep so well at night and now he isn’t.

I have been reading posts on other sites where the lack of sleep seems to be common with Neocate. Has anyone here experienced that?

I’m still not 100% sure that Owen is intolerant to soy. We had a really bad episode after me drinking a lot of soy milk, but a week later Owen ended up having an ear infection so the pedi thinks he could have had a bug during that time. I was just so frusterated at this point that I cut everything from my diet immediately. I’m wondering if I should do the two week trial with Neocate and then try Good Start Soy(it has the broken down protiens) mixed in and see if he reacts.

Any Neocate stories, tips or advice would be appreciated! Our insurance does dont cover Neocate so it is coming out of pocket and as a teacher(great job not so great pay!), it is a huge expense for us. I want to make sure it is ultimately what is best for Owen and I am very confused right now.

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