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Adrenoleukodystrophy (ALD) Online Support Group

Symptoms

Hi,

8 year old diagnosed with x link cerebral ALD march 16, 2018, 14.5 loes score. He has A LOT of energy but being almost blind hard to find outlets all day long. What are people out there doing for the “dad, what can i do now” and the total impatience. What medicines are people using to provide some calm?

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This has to difficult and I don’t know if this will help, but being at such a young age and going through this. Well taking into account that he has a lot of energy sports will probably be kinda hard, but you can try arts and craft and if he likes games he can try and learn board games and try to learn chess or checkers which would help entertain him as well as with his self-esteem since being able to play it without feeling helpless or not being able to do it. There are a lot of blind chess players such as "Dennis Cummings, William Steinitz, and there is Sergey Karjakin who was not blind but was born in 1990, and became a grandmaster at the age of 12.

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Hi Ben. I’m so sorry that you and your son are going through this. I realize your posting was several months ago now . I’m guessing you’ve spent more time than I can imagine Googling, but if by chance you haven’t, I just Googled activities for blind/sight impaired children and found lots of possibilities for you and your son depending of course upon other circumstances. You’re in my heart as I type this. Many, many years ago I had a little brother with x-linked ALD.

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Hello Matt and family! How are you and Ben doing these days? I checked out your site and was struck by the kindness and generosity of those in your circle of friends and in your community.

The people here would love to know how things are going. Have you found activities that Ben can do despite his limited vision? How about an update?

All the best to you from all of us here

Seenie from Moderator Support

Hi,

Yes, we are blessed with a loving and caring community.

Loss if sight is one thing but his hyper activity and discomfort from what he sees is what is maniacal.

Thanks for reaching out.