Bad GI Appointment?

1. We discussed the Sandifer’s – he didn’t seem to know what it was and didn’t really seem to care about it since she hadn’t had an episode in a while and the prevacid seemed to be helping. She has had one episode in the last 3 weeks and it was when dh forgot to give her her medicine.

2. Apnea – again, didn’t seem to care all that much. She is on a monitor after turning blue and being rushed to the ER. We have yet to have it looked at as she has only been on it 3 weeks.

Basically – he feels (and I agree) that the reflux is being pretty well controlled with the prevacid. But I am concerned about the form of the prevacid (compound) – but he didn’t seem to know a lot about this either.

Then we get to the MSPI issue . . .

I stressed 3 times that she is miserable 70% of each day, that she has a lot of abdominal pain and discomfort, what her sleep is like, etc. He acknowledged that he thinks she is MSPI but felt the Alimentum was helping, again “enough”.

He basically felt since it was better on the Alimentum that we should just stay on it. I told him that a friend had sent me Neocate to try for her and he said it, “wouldn’t hurt” but he thought she was doing okay on the Alimentum. He felt the reflux was complicated by the MSPI but again, the Alimentum is helping “enough”.

I then asked about the probioitics and he said he didn’t really know anything about them . . .

So, if I try the Neocate and it is better I need a prescription to get my insurance to help cover the cost. I am not really happy with the whole she is doing better so let’s stay where we are at thing. Yes, she is better – but better is 70% miserable as opposed to 100% miserable. I think that she deserves to be in less pain and discomfort and to have more opportunities for comfort, happiness and growth (developmental). He is like, well she is okay because she is gaining weight. Of course she is gaining weight, part of the way she copes with the reflux pain is to eat and soothe her throat.

The only thing he did do was order a swallow study because both Tim and I mentioned that she gags a lot. But he left it up to us whether we wanted to do the swallow study or not – so we said yes. She had an upper gi and it showed that everything was fine.

I say we need a new gi, Tim was okay with how the appointment went.

My thoughts:
He doesn’t know about some really important things (the sandifer’s, probiotics)
To me, better is not good enough – our goal should be maximum comfort and I don’t feel that he has explored all of our options
And, do I try the Neocate or not? If it improves her hind end issues, then what do I do about continuing to get it?
And we should definitely get a new ped gi, right?