Lesch-Nyhan Disease support group

Janek Deep Brain Stimulation

Dear all,

Janek again had DBS surgery on the 26th of february. About one year before, all devices had to be removed again after severe infection. Now we hope that there is no infection this time. There is some liquid above the stimulator, but no signs for infection so far. Janek got a rechargable stimulator from Boston Scientific, which is very small. He has 2 electrodes (gpi) instead of 4 because of his small size.

My question to the other parents which experiences with DBS: how long did it take until you recognized some changes with respect to self injury behavior? Janeks stimulator is on for about 10 days now, with a setting of 2.8 mA. We do not see any significant changes yet but its probably very early.

best regards,

Katja with Janek (9)

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Permalink Reply by Allison Early on March 11, 2013 at 10:57pm

Katja,

Thanks for letting us all know how you and Janek are doing. I'd been wondering. I hope you'll be seeing some improvements soon.

Take care,

Allison, Grayson's mom

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Permalink Reply by Marilyn Chapman on March 15, 2013 at 8:16pm

Hi Katja
Thank you for keeping everyone posted, when you must have so much going on!
I do hope the operation works out better this time and eagerly await news of Janek's progress. In the meantime I send you and him all my love and warmest wishes.
My grandson, Nathan, who is 3 1/2 has been assessed for DBS here in the UK and they are going to use a new similar, smaller implant.
Marilyn x x x