Lukey recently came back from Cincinnati and after being on Co Q 10 for a year and a half his level dropped considerably. He takes 300mgm. per day of chewable Co Q 10 from Epic 4 Health. We were advised to change brands although Epic 4 Health was their initial recommendation. He takes all of his supplements and deflazacort with grape juice. We will be changing the Co Q 10 brand to Nature Made as suggested. Has anyone encountered this with their boys? Somewhere on the old site I remember reading about incompatibility with some supplements and certain juices but I was unable to find it. Any help or advice would be appreciated. Joanne, Lukey's Grandma

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Have you tried the liquid form from Epic? That's what we've always used. Sam also takes 300mg/day. I know I've read somewhere that the liquid form had more bioavailability. Someone correct me if I'm wrong.

edited to add: This is the one we order - http://epic4health.com/dostlisylico.html . We put that Sam's a patient of Dr. Wong's in the comment section and the price comes to about $86 with shipping.
When you say "his level dropped considerably," what levels are you referring to? What was the reasoning for the suggested brand change?
Dr. Wong drew a blood level for Co Q 10 last year and one year later his level had dropped and he had been taking 300 mgm. per day. They want the level to be between 3-4 and Lukey's was 1. This was lower than the one he had a year ago.
Maybe the chewables are not as good as liquid or the pills. It is a frustrating journey at times.
Joanne
Laurie, have you had a Co Q 10 level drawn on Sam after being on the liquid from Epic 4 Health? Has anyone had their boys level drop after being on Co Q 10? Has anyone heard about an incompatibility with certain juices or giving it at the same time with other supplements? Joanne
My son is on the Nature Made CoQ10 (per Dr. Wongs recommendation) and has maintained good levels. They're a good size pill but he swallows them. He takes 200mg/day.
Joanne,
Yes, we have had his levels tested. They were actually quite high, so we lowered his dose a bit.
I am new to this, and did not even know that there was a Co Q10 level that could be tested. My son has been on 300 mg since July, after diagnosis in June. However, we will be at CHOP tomorrow and I will ask to have his level checked. One thing I do know though, is that the CO Q10 needs to be taken with fat for best absorbtion (I apologize if this is completely obvious to everyone). The Dr. at CHOP said giving it to my son with a glass of whole milk should be ok, but others recommended giving it with ice cream. I will be curious, as whole milk bothered my son's stomach, and he only takes it with 2%.
Did Dr. Wong say anything about fat for absorbtion?
Regina--We have not heard of taking Co Q 10 with fat---It will be interesting to find out about this and the part it might play with absorption. Joanne
The brand of CoQ10 that was recommended by Dr Escolar was Vitaline Formulas. Vitaline CoQ10 is PROVEN to increase levels of CoQ10 in the blood. It comes in many flavors as well, which makes it very easy for my son to want to take.
Heather--What dose does your son take? Lukey takes 300mgm.per day. Where do you get them? I assume they are the wafers. The wafers I have found were not 100mgm each. We are also looking into Epic 4 Health liquid and we did buy some Nature Made as suggested in Cinci but they are tablets and Lukey doesn't do well with tablets and he already has a bunch to take. Thank you so very much. Joanne
Our doctor at CHOP said that Protandim and Coq10 should be taken with a spoonfull of peanut butter as the will be absorbed better.
We just got some of JT's results back from Dr Wong and she wants his brand of coq10 changed also. He has been on puritans pride for almost 2 yrs. and now we are upping his dose to 200mg's and changing his brand to Natures Made. His levels came back at 1.359

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