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    Gil
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    Hi I’ve just joined. My son Ken has ACC. We live in Calgary, Alberta, Canada & enjoy biking and the Rocky Mountains among other things. My daughter Charlotte has her own place. My son lives with me. He has ~1/4 of a CC which is only connected to one hemisphere or side of his brain. This was a 20 year slow reveal starting with hydrocephalus in 1993 and an estimated 3/4 of a CC fully connected (CT or Cat scans are not that clear). Well that’s my brief introduction.

    Concerta has helped manage Ken’s ACC along with diet, routine & exercise. The dose slowly rose over 9 years to now 108 mg/day (Ken is the size of a football lineman; hence big dose). However, Ken’s insurance won’t pay for Concerta. They cover Ritalin but it wasn’t effective for Ken 9 years ago.

    So can you please tell me what has or hasn’t worked for you or your child over the years? What dose too?
    Thanks,
    Gil

    FYI if you are a glutten for details: http://www.circleofmoms.com had a bunch of communication back in 2012 about different medications for ADHD which is also used for ACC. No mention of doses and only some mentioned the drug. FYI, in the first 12 of 17 pages, there were 24 drugs mentioned as follows:
    5 used Concerta (although 1 son got violent on it & stopped right away – it was good for other 4 plus my son); 4 – Adderall;
    4 – Strattera; 4 Vyvanse; 3 Ritalin; 2 Daytrana; 1 Guanfacine (Intunive); 1 Intivin; 1 Tenax.
    2012 discussion so 5 years out of date, but it was clear that everyone with ACC is very individual. What works for one person; might not for another or even be a problem. Part of this is because most individuals with ACC seem to have something else as well. Hydrocephalus for my son. Plus the plasticity of our brains means it reassigns duties or essentially “rewires itself” if one part is not working. However, how this happens, I assume, is very individual. Hence everyone must carefully experiment with their doctor’s advice & monitoring with us to find what’s right for us. However, if we share what works for us and that turns out to be a small number of drugs for the majority, then we can all find our best drug faster by focusing these few.

    Good news: one lady was forced unhappily due to insurance coverage to switch from Strattera to Vyvanse. However, it was a blessing because Vyvanse was actually more effective and cheaper. Now that’s the situation my Son and I hope to find for him.

    We’ve applied through our doctor to get an exception for Concerta because Ken has ACC; not ADHD (which was the basis of their drug evaluation). However, this is a slow process. Plus I’m hoping we can find something even better for my son. Ever the optimist.
    It’s more important to be lucky than smart! Ha ha – a favourite saying.
    Again Thank You,
    Gil

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