Guest guest Posted April 28, 2005 Report Share Posted April 28, 2005 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) Quote Link to comment Share on other sites More sharing options...
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