A Little Something Extra

Friday, April 18, 2008

Digestion

This feeding situation with Micah is going to send me to the funny farm (can one still say that or is it not PC?). After a week on Nutramigen, Micah's ability to tolerate a feed is getting worse, not better. He's screaming during every feed (and the majority of the night for the past two nights), unless I just sneak 3 ounces into his tube while he's sleeping. That's really not a good option, because he needs to continue sucking from a bottle (that ability is waning as well). And last night he had pink-tinted residual when I vented his tube. It only happened that one time, but yuck. The on-call pediatrician said that happens sometimes with babies with g-tubes. More information that would have been helpful to know earlier, though I still think it was probably a good move to get him the g-tube.

So, we've been advised by the gastroenterologist to change Micah's formula to EleCare (similar to Neocate). But neither of those is covered by our Rx insurance because they're "available" over-the-counter. Never mind that the product description from the manufacturer says, "for use under medical supervision." Let the appeal process begin (just what I need... one more thing to do). I find it hard to believe that it will cost us more to feed Micah than it does to feed Mark. That's crazy. Anyone out there work for Abbott Nutrition who could get us free samples? :-)

Quick sarcastic addition to this post: Doesn't the statement "It's not covered as a prescription because it's available over-the-counter" mean that you should actually be able to find it OVER A COUNTER somewhere?

8 comments:

Amy said...
This comment has been removed by the author.
Amy said...

Jennie,

I can't believe how intense this must be for you and how much must be on your shoulders. Know that you are always in our prayers. I wish I could be there to lend a hand, somehow. We'll keep praying although we can't carry any of your burden in person.

Love from all of us!

Christine said...

Your description of Micah’s feeding problems are so reminiscent of what we went through with Lilja. She was such a happy baby.... except when she was eating, and then she screamed and cried in pain.

I am sure the docs know best, but I will let you know what we did that worked. Lilja was on metoclopramide and zantac in addition to a thyroid medication and three heart meds. We took her off the zantac and added prevacid (turns off the acid pumps in the stomach). We took her off of breast milk, which was being supplemented for calories with Enfacare, and switched to using solely Enfamil AR, mixed really thick, like a milkshake. AR is a rice-based formula, and the theory from her doc was that it was so heavy it would sit in her stomach better. If you want to chat further, please feel free to email me or give me a call.

Hang in there- Lilja’s feeding issues improved with the aforementioned changes, but really improved after her heart surgery. I am praying you get on the surgery schedule soon.

Kris said...

Jennie, Oh, poor Micah and his little tummy. More prayers for this feeding issue. Just to give you a glimmer of hope....ALL of Erin's feeding issues cleared within two weeks of heart surgery. I know she did not go thru what Micah did, but I have to believe that a good chunk of this is related to the heart. Erin got to the point of not taking anything with the bottle before surgery. I just made sure she continued to take a pacifier. As for the insurance....I cannot believe that medicaid would not pay for that! They will even pay for regular formula. I'm assuming you've applied for Katie Becket (sp?), which Micah should be qualified for because of his ds diagnosis. I feel your frustration!

God bless,
Kris

God bless

Andrea Marcks said...

Jennie-
What next?! Poor little guy....I am continuing to pray for you and your family. I hope things get better soon. Now that spring is here, they have to, right?! I also want to make sure you got the book I bought for Micah. Did it arrive? I know you are so busy, I just want to make sure it didn't get lost in the mail or something. Take care of yourself and if you ever need anything, you know how to find me.

Andrea

Kacey Bode said...

Poor baby, and mommy too! I hate insurance companies, ugh. I hope that Micah's tummy troubles go away soon!

Baby Health Blogger said...

Hi Jennie – I’m sorry to hear that your little one isn’t feeling well on his current formula. I am a nutrition specialist for Nutricia, the manufacturer of Neocate, and unfortunately hear all too often from families like yours who are having trouble with reimbursement. www.neocate.com/reimbursement has a lot of information about getting insurance to reimburse for amino acid-based formula. I also have some literature on tube-feeding that I can send you. You can feel free to contact me at 800.365.7354 ext. 2260 or aromano@shsna.com. -April

Anonymous said...

When my daughter was on specialty formula we couldn't get insurance to cover it either. We also couldn't find it anywhere!

We ended up with our local pharmacy ordering it for us. They also gave it to us for their cost, didn't charge us any extra at all.

I would advise asking your local pharmacy if they are able to order it for you. :)