mito coctails

This was difficult at first. Our doctor has us on the Cyto Q packets so that is separate. I have a compounding pharmacy make her folic acid a liquid and another mail order pharmacy do her LevoCarnitine. I found the cutest little coca cola shot glass. I found it in the store but broke it and went on line to buy several more. It is her cocktail glass so to speak. We just draw it up seperate and put in one glass. I guess if someone could do it all that would be ideal. She also takes an over the counter mult B Vitamin in a gummy form I have her take on my own found at HEB. They taste great. The only thing is they suggest B2 and they have tried multiple times to mask the nasty taste and we just can't take it. It is horrible!!! I give her the other B vitamins to try to help with energy I am still having our compounding pharmacy here try to mix it with something because I would like for her to have it. My daughter slams it so to speak. She is only 6 and I have no problems. Good Luck it takes a while to get it all going and find what works.

I am in need of other parents' suggestions/experience so I am reposting here hoping to get feedback. I just bought S-adenosyl methionine (comes in 200 mg tablets), Coenzyme Q 10 (comes in 100 mg tablets), vitamin c, and L-Carnitine (comes in 250 mg tablets). My son is 9 and turns 10 years old tomorrow. He developed dysautonomia suddenly after getting the H1N1 ('swine flu') intranasal spray, and I have bought the above mito cocktail items but do not know if anyone else has tried it on their child and what the safe dosage would be. I have been told by a Nutritionist at Jarrow Formulas (one of the distributors of the L-Carnitine and S-adenosyl methionine) that generally children take 1/2 the dosage of adults. He was not very helpful beyond this, and my pediatrician is certainly useless because she is not the one who knows about dysautonomia. I have had to educate her and the physicians that had misdiagnosed my son with attention-seeking disorder because they did not know about mitochondrial dysfunction and its role in dysautonomia. Any help from any of you is appreciated. My son is like many of your children described on this site: Cannot walk especially in the morning, and then he can walk later in the day if he is not stressed out from physical exertion and illness and weather change etc.

Welcome to the forum. I am sorry you have a need to be here, but it is nice to have you! If you go under Blog and scroll down to Update on Mitochondrial Disease Treatment Approaches there is an article that explains what is normally in the mito cocktail and what is the normal dosage. The podcast that goes with it is helpful too. Another great resource is the Symptom Guide for Clinicians which can be found under Publications. On the dysautonomia front I would recommend the podcast on the subject. I may be able to give a few tips too as I deal with dysautonomia quite a bit. :) Best wishes with your son's journey.