Wednesday, January 28, 2009

next step

Talked to our pediatrician today.

I started with "We are NOT okay here."

I pretty much laid it out. He's eating less and less. I used to be able to get him to eat in his sleep but even that is a struggle now. At night he'll eat 15 or 20cc and refuse more, then wake up starving again an hour and a half later, eat another 15 or 20cc and we start over.

I told her he DID gain some weight last week with the aid of the olive oil, but that sometimes now he's not wanting solid food either. (I think it's the olive oil.)


She said that she was getting close to the point of feeling like we needed to do something drastic like admit him to the hospital. I told her that I was desperate and if she felt like that would help us- we'd do it.

She wants to try one more thing. She wants us to try some Nutramigen AA hypoallergenic formula. If that doesn't work, then the next step is that she's admitting him to the hospital for a work up.

She assured me that she IS taking this very seriously and we WILL get to the bottom of it.

Just hearing her say those words lifted a weight. I finally feel heard.

Now I just have to FIND the formula (no one seems to carry it) and give it a try.

Wish us luck.

--Trish

12 comments:

Mrs. Spit said...

I'm sorry that you can't find the formula, but I'm glad that you have a plan.

Two Hands said...

So glad that you are being taken seriously as you know better than anyone what's going on. I'm so sad though that you are STILL going through this. It's awful for you and Robbie.
Sending you lots of prayers. I hope you find the formula and that it HELPS.
Love to all.

Jess said...

I am usually a lurker, but just wanted to let you know that we found our Nutramigen in the pharmacy. Good luck with that, I pray that it helps Mr Robbie...

Milenka said...

I highly recommend Elecare. (http://elecare.com/about.aspx) I really fought against it due to the price and the difficulty in obtaining it at first, but it's been wonderful for us. We have a lone local pharmacy who orders it for us. We mix it at 26 calories per ounce, and Fox has really blossomed on it. I hope the formula that you're switching to works well for you, too! Hang in there!

David, Trish & Robbie Cox said...

milenka.. we tried elecare.. that's what made him puke so much he was readmitted for dehydration.
Robbie's an enigma.

our local pharmacy is ordering it... should be in tomorrow!

Anonymous said...

Check with your insurance company to see if they cover it. My son is on Neutramigen and the insurance company will cover 90% of the cost after we meet our deductible ($100- not hard to do) because it is "medically necessary". We just had to get a letter from the dr. Good luck! I hope it works. My son is so much happier now.

camille said...

I'm so glad you are feeling heard now. That makes such a difference. I hope the formula works. Am thinking of you and Robbie.

Elizabeth said...

I'm glad to hear your pedi is taking it seriously and I'll hope and pray that the Nutra stuff makes the difference.

Fertilized said...

Praying this works ad you get relief

Nicole said...

I'm hoping this works. *hugs for you and Robbie*

casicola said...

I know I dont leave a lot of comments but I want you to know that I check out your page almost daily and my prayers are with you...this is a very trying time and you shine like a star. Robbie is lucky to have such a GREAT mom:)

Heidi said...

GOOD LUCK!!!