CoQ10
I recommend to buy from Dr. Judy at Cyto Med. You should contact him at 866-751-2872 rather than buy on the web to get the PWS discount. He is a very kind man and can answer many questions, such as how much to give. The likely answer is one to two gel caps.
It should be given in the morning as its purpose is to give an energy boost and presumably it goes in the blood stream right away and has its effect. The gel caps should be cut and the liquid squirted into the baby's mouth and then washed down with formula. You cannot mix the CoQ10 with the formula as it will stick to the bottle and will not get into the baby.
My son went on CoQ10 at 6 weeks and started moving vigorously 2 days after starting it. We have no proof that it was the CoQ10, but it makes for a good story and he has been on it ever since.
Effects of CoQ10 are really poorly documented. Rumor has it that it improves alertness and increases activity. Rumor has it that it doesn't work for all kids. Rumor has it that it is more effective in infants than in toddlers.
All of my son's doctors know that he is on CoQ10. I guess that it is occasionally prescribed for muscle disorders and therefore they have all heard about it. Both his pediatrician and geneticist agree that it can do no harm. I was a bit suspicious about it at first. There was a paper published in the J of Pediatrics in spring 2004 that tested CoQ10 versus growth hormone. This paper legitimized CoQ10 in my eyes. The paper did not show an effect, although the investigators were only measuring growth and you would not expect CoQ10 to effect growth. I emailed the investigators and asked if they had seen a differences in alertness and milestones, etc. They responded that they were in the process of writing up the results for another paper, but wouldn't answer my question. The paper also boosted my confidence in Dr. Judy and Cyto-Med as a source because Dr. Judy was cited in that paper.
It is not clear to me how or why CoQ10 works or even if it works. There are no real studies on it. That said, rarely are there good studies on nutraceuticals. There just is no financial incentive to invest in a clinical study of something that can't be patented. While there is no proof that it works, it seemed to help my child and I am willing to pay for it ($10/month?) and go through the hassle of administering it. And, most importantly, the physicians I consulted agreed that it can't do any harm.
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Reasons not to take Coq10
I have read the latest post re. CoQ10 and the research that has been done. This post is titled "Further clarification for absorption of CoQ10" and Dr. Judy states that "SIBR Research, Inc. conducts approximately 9 studies per year"... herein lies one of my biggest problems: What Dr. Judy doesn't tell you is that HE is the Senior Scientist for SIBR Research, Inc., and in fact, Dr. Judy and his wife are the sole principal partners of this corporation, see the following link to the Florida Secretary of States office: http://www.sunbiz.org/scripts/cordet.exe?a1=DETFIL&n1=P03000114131&n2=NAMFWD&n3=0000&n4=N&r1=&r2=&r3=&r4=SIBR&r5=
I think that Dr. Judy should have identified himself as that researcher and where copies of that research can be obtained. Unfortunately, many of the people in this group are seeing this information for the first time and who could blame them for being excited about starting their child on CoQ10. I wish them all the best and I hope that they can benefit from it, but I hope that they proceed with caution and make certain that others are not benefiting at their child's expense.
Hopefully, most people will do some serious research and have their loved ones tested for baseline CoQ10 levels from a reputable laboratory prior to starting CoQ10. Dr. Judy told me that "all children with PWS are CoQ10 deficient." After I researched where to have Rebecca's CoQ10 levels checked, I was shocked to find out there are only 3 labs in the country that are able to accurately test for this specific test. When I told Dr. Judy that I had Rebecca tested and her CoQ10 levels were high, he immediately discounted the value in knowing the levels and that "even children with high levels can benefit from additional CoQ10." How can anyone make that assertion without clinical testing?! Additionally, in a previous post from the same day, Dr. Judy states that he has not seen any signs of Vitamin E toxicity. Most of this group has only been on CoQ10 for a few months to a few years. If there is going to be toxicity it would most likely occur later in the child's life. Remember, any additional vitamin E not used is stored in the body indefinitely or until it can be used, this is not a disputed fact re. fat soluble vitamins.
I am in no way against the use of CoQ10, nor can I speak in favor of it... I can only speak from my experience. I was very impressed with Michael V. Miles, PharmD, Prof. of Clinical Pediatrics and Neurology, Director, Clinical Neuropharmacology Laboratory, Children's Hospital Medical Center, 3333 Burnet Ave., Cincinnati, OH 45229, Phone: 513/636-7871 Fax: 513/636-3980, http://www.cincinnatichildrens.org/svc/find-professional/m/michael-miles.htm Dr. Miles has conducted Electrochemical Analysis of Coenzyme Q10 and Reduced Coenzyme Q10 Levels and has published many articles re. CoQ10. I believe that he was responsible for developing the testing methodology that they use. Also, measuring CoQ10 levels is very complex, there are at least 5 tests that are conducted to make up a profile. My conversations with him a few years back were very informative.
For all I know CoQ10 could be the most valuable medical finding of the 21st century, but until it is studied by an independent group conducting a true blind study, I would air on the side of caution when giving it to my child. The FDA is not in the business of monitoring companies that manufacture "supplements," so there is no oversight by any agency to watch out for our children. It may be completely safe, but once again, no proof. Also, always keep in mind that Dr. Judy has a vested and financial interest in the acceptance and sale of CoQ10, particularly the brands that are manufactured and sold under his company names. We have all seen the comments that the Cyto-med CoQ10 is more absorbable, etc. etc. etc. Also, I think that it is important to note that Cyto-Med is Owned and Directed by Dr. Judy's wife and her Father. Where there is money changing hands there should be a lot of questions...
Other interesting links: Dr. Judy's Company, CytoMed, Inc. http://www.cyto-med.com/
Corp. search: http://www.sunbiz.org/scripts/cordet.exe?a1=DETFIL&n1=P00000049506&n2=NAMFWD&n3=0000&n4=N&r1=&r2=&r3=&r4=CYTOMED&r5=
Another Point of View
I did not start my son until he was 18 months on it. I want to say that he would never go a day without it. He is now 27 months old. They benefits I, therapsits, teachers, and family members notice are his high energy, alertness, cognitive and speech ability. Also it may help him with his muscle tone. He started it it the same day he did GH. So we never knew what was doing what, but once over 3 days he missed his COQ10. And he was floppy again. He was like a noodle when he tried to stand and his facial expression was droopy. His alertness was down and so was his speech. His therapist/preschool teacher asked me what was off about Luke and I said it was definitely the Coq10. She didn't know he was taking anything other than GH. I told her what it does and she agreed he needed to never skip. Also I have noticed that he may go on sleeping marathons (as I call them) when he doesn't get his dose. He is truely COQ10 deficient.
I do greatly regret no giving it to him when he was in the NICU. I have to be honest-I was afraid to for many reasons.
CoQ10
Just a note of caution - Some formulations of CoQ10 include considerable amounts of Vitamin E. Too much vitamin E has been shown to have have harmful effects, so it's probably wise to pay attention to the formulation.
