Co Q response to heidi

[Guest guest]

Heidi: thanks -good question about the base of the Co Q. I don't think it is in MCT oil but I would have to ask. I have it compounded for the boys by our pharmacy. We used to use the Tischon Q gel but the volume was impossible to get into the boys. I think it was 10 mg/ml and for Sam that meant that 4x/day he would need 10 ml. No way, no how was that going to happen. We do use an NDC brand ...I just don't know how the pharmacy compounds it though - I will ask tomorrow. years ago the boys had normal levels and now they're just dropping. and their health is declining as the levels drop. My daughter who has no GI issues is taking the Q gel brand (which is supposedly the most bio available one) and her levels are dropping too. her disease has been in a flare for a few months as well and I am sure the mono is not doing her any favors but I just don't understand why these levels are dropping. Today our doctor did talk with Dr. Shoffner. I don't want to miss quote anyone because I heard about this via a voice mail so I might have it wrong. What I think Dr. S said was that we should not worry about obtaining good levels because the fact is that while Co Q is not exactly useless - it is not a miracle and is not going to make that big of a difference in their disease course. (which leaves me wondering why I am spending thousands of dollars on it each year for 3 of my 4 children ). I don't know if I believe that - at least not for those with milder disease presentation like my daughter. her restrictive lung disease got better (by objective testing) when she had better Co Q levels and now her pulm fx is worse than last year which corresponds with worsening Co Q levels. So how can it not affect disease course unless this is all a coincidence? I guess there was also the question of whether or not the boys absorb the Co Q. I understand the question given the fact that their GI motility is so bad that they are on TPN but the fact is that they are able to obtain drug levels of other meds that they receive by J tube. In fact Zach's last trileptal level was slightly high and Sam's zonisamide level is right where it should be (albeit with a supposedly toxic dose). Thank you for the thoughts about what base it is in. I only wish the darn stuff came IV or even better if I could inject it right into their cells. Frustrated! Annewww.caringbridge.org/wi/zachsam