Re: What does Mayo and CCF prescribe?

[Guest guest]

The only thing I saw different is the CoQ10. My daughter, Gracie, sees Dr. Cohen at CCF. He will run blood work to see what they actually need. I remember she started her cocktail rather slowly, as he ran different labs to see what she needs. Everytime he sees her he usually adds something else. I would remember, though, that everyone is different and needs different things. What is desperately needed for one child another may not need at all. Also some kids just do better than others. I think ultimately it's up to you and your husband, if you think you need to go elsewhere for treatment. Best wishes for your family.

[Guest guest]

Asenath takes COQ10, Carnitor, B2, and Vit. E (soon). She also takes severral meds for her other problems, including Polycitra for metabolic acidosis, steroids for her vasculitis, Topamax for seizures, aspirin to thin her blood, and enalapril maleate for the vasculitis and high blood pressure. I take zinc and B12 due to issues there (ordered by Dr. Whiteman). It really depends on the particular needs of your child. Dr. Whiteman told us Asenath still has some more things she can be on but wants to add them slowly. Hope this helps. Darla What does Mayo and CCF prescribe? Hi, I was wondering for those who have been to Mayo and CCF what the doctors have told you to give your children. Our boys are on Carnitine, Periactin (for migraines) Vitamin B-12, Creatine. Our son Jack (8.5) is doing great. Our son Joe (10.5) is not doing well. He is losing more tone and muscles in his trunk area and legs.Yesterday the PT told us that he might be in a wheel chair by 13. This killed us and Joe...We are now talking about taking him to Mayo or CCF. However, is it worth it if he is already on the same medication that Mayo or CCF is prescribing?The funny thing is Joe can still swim. He will be swimming at the US National Disability Championships in April. Why he can do this, we do not know.However, we want to keep him going. We want him to stay strong.Your comments and thoughts are very appreciated.Thanks,Please contact mito-owner with any problems or questions.

[Guest guest]

Good Morning,

Like Darla, it depends on the child. Dr. Whiteman was surprised that J.D. was not on more medications and surprised at the high dosage he was put on from the start of co-q-10. He had depletions in vit a, c and e and was taking no carnitor.

It was my impression from Dr. Whiteman that the right prescription and amount were just as important.

Darlene

[Guest guest]

The funny thing is Joe can still swim. He will be swimming at the US National Disability Championships in April. Why he can do this, we do not know.However, we want to keep him going. We want him to stay strong.

The water supports the body and muscles, I think it also has something to do with the pressure of the water all around the body too. My daughter is severely physically impaired, at nearly 7, she can't roll, sit or bear weight, and has a hard time maintaining arm reach to midline. She has hypotonia with some hypertonia due to nonuse of her muscles. I have noticed that when she is in the pool, she will straighten her legs and attempt to bear weight, and even making rudimentary walking motions with her legs. She will also get her arms to midline and paddle, which she has very little coordination to do out of the water.

Water therapy would be a good thing to continue with your son. It will help him maintain what he has and boost his self esteem. I am sorry to hear that he is declining, I will keep you in my prayers.

e, Chelsea's mom(nopnspecific mito)