Formula and Attenlol

[Guest guest]

I used to be very active on this list, but as time wore on, I found that I

mostly just read the list sporadically. I am on digest. Lately I have been

reading more often. I have a son who is 8 who has Mito, Complex I and III,

diagnosed when he was almost 3. He was pretty sick as a little guy, but he

stabilized after we began treating him with Carnitor and CoQ10, plus the

" cocktail. " Anyway, he is still really little, and requires tube feedings,

but mostly healthy and doing amazingly well now. My older child and my

younger child have both started experiencing some symptoms, so I find myself

reading again more regularly.

Suzanne--re: Formula Coverage. Check your plan documents to see what they

will cover for patients with PKU. Our insurance company would not cover

's formula (he is 99% dependent on tube feedings for nutrition) as they

classified it as " food " or a " dietary supplement " . I poured over the plan

documents and found that there were special provisions for patients with

PKU. I wrote a letter comparing 's " inborn error of metabolism " to PKU,

and was able to get 100% coverage of the formula as part of " home infusion "

rather than the noncovered " food " or " dietary supplement. " Our pediatrician

signed the letter for me. Send me an email if you want more information . .

.. there is more to the story and I am happy to share more details. Also, I

can probably dig up the letter if it would be helpful.

Tamara--re: Attenolol. My oldest was diagnosed with SVT almost two years

ago. She takes Attenolol. She has had no side effects and does very well

on it. She is on a very low dose.

Kathy

Mom to (13), (8), and Meg (5)