Mitochondrial Diseases Support Group

My son has had multiple health issues over the years. They are progressively getting worse. He is 16 years old. He is HFA (autism), pragmatic delays, hypotonia, orthostatic hypotension, vertigo, headaches, connective tissue issues, written expression disability, severe visual motor dyspraxia (>2 standard deviations), etc. etc.

He can not tolerate dairy proteins at all. He gets severe migraine, motion sick, unable to think straight, etc. etc.

A year and 1/2 ago I started high B6, antioxidants, vitamins, no dairy (no caisen or whey), and he seemed to do a lot better. He still would have headaches, but still able to function. He has never had energy. He is always tired. He is wiped out from a school day.

He has had increasing headaches since Dec 08. He describes as top of his head (not unilateral). MRI two years ago was negative. He complains of severe constipation, muscle cramps, fatigue, NO Energy. He is almost limp all the time!

He has missed a month of school. He is a great kid that never gets in trouble. He has PTSD from teacher harassment. They never believe him or his disabilities. Please help him.

Neuro did blood work. She said he is fine except for a WBC shift. I looked at his previous records. He has had the same "shift for years".

Wbc 6.8, grans 44.8, lymph 45.8. eos 3.4, others normal. EBV is negative two times over 1 year.

however, pyruvic acid is 0.23mmol/L done by send out to Mayo Clinic.

I think he has mitochondrial dysfunction. Oh, I know he needs more (many) tests including Lacatate/pyruvic ratio etc etc etc.

I just need to know if any of you have had pyruvic levels that high? Do you think that I am on the right track? Do I persue this? Please help this kid is suffering, and his life is passing him by.

Thank you so much,
Kathy
Posted on 02/01/09, 01:02 pm