Mito questions

preggersINschool25

Today we met with the neurologist who told us the results of Grant's spinal tap.  He had quite of few of his amino acids high, the most significant being his alanine.  It was explained to me that alanine measures stress in the brain and can indicate a possible mitochondrial or metabolism disorder/disease.

 I don't know much about mito diseases.  Could someone fill me in?  How are they diagnosed?  How are they treated?  Can a mito disease be only a part of a diagnosis?  Is it tied to genetic disorders Grant has a duplication on 5p?

We also found out his MTHF or 5Methyltetrahydrofolate was low.  He was at a 42 I'm not sure of the units and I was told 4060 is low, while 60 is acceptable.  In the last 5 years there has been new research that has shown that patients with similar values as Grant have had their neurological symptoms improve following folinic acid therapy.  We were told that there are no harmful side effects to treat him. She prescribed 4 different vitamins: Leucororin folinic acid 3x a day, Carnitine 3x a day, Riboflavin once a day, and CoQ10 2x a day. 

I have looked up this vitamin cocktail and found it is pretty common with mito diseases. I am having trouble getting ahold of the cytoq aka CoQ10. Any help there? Also I'm having trouble with the riboflavin too. I found out I need to buy this over the counter and it comes in pill form. When I crush it and try to put it through his g tube I'm finding that it is clogging the anti reflux valve I think because it is acting funny. What can I do about that?

Also does anyone have a list of actual mito experts? I'm in Indiana, buy I am willing to travel anywhere.