Are you on Facebook? Susan Rathfelder's son has DMD and seizures. I'm not sure she comes to this board. I'll send her a note.
Thanks! Yes, I am on Facebook. Let me know if she would be willing to share.
My son just turned 23 and was diagnosed with seizures/epilepsy when he was 10, that diagnosis came about 18 months after his muscular dystrophy diagnosis. They have not been able to pinpoint his mutation so we don't have a definite Duchenne or Becker's diagnosis. Jonathan's seizures started out as absence (staring spells) type and did progress to full blown grand mal/tonic clonic type. His neuro doesn't feel that they are related, but I do know of a few other boys/young men with seizures also. I do have a paper somewhere that does show a link, I will try and find it.
Jonathan currently takes Keppra and has a Vagal Nerve Stimulator to help control his seizures. The VNS is a device similar to a pacemaker. He has also taken Topamaz, Zonegran and Lamictal. We don't have complete control, but things have been better lately. He had 2 seizures last Friday and they were the first in 4 months.
If you have any questions let me know. If you are on facebook you can find me there too.
Here is the paper I was referring to.
My Grandson is 13 1/2. He was diagnosed originally as Becker's MD however, we now know it is Duchenne's. Jordan's seizure started out as absence (the doctor believes as that is what his initial EEG showed) seizures and are now full blown grand mal/tonic clonic. If you can find the paper that shows the link, I would love to have a copy.
Jordan is currently taking Keppra too. We just increased the dose last week. We moved to Idaho 2 1/2 months ago and he has had 5 seizures since the move. His last one was this morning. We think, (my husband and I) that traveling is what has made the seizures become more frequent. Monday, we had a 2 1/2 drive one way to his EEG appt., add sleep deprivation to the mix and there you have it. I will look at VNS to see if that is an avenue we would like to consider.
Thanks for the info. I will add you on Facebook as I am sure I will have questions.
my son 7.5 years old with dmd, had 2 seizures during last year in 4 months period.
after EEG and MRI, currently he takes lamictal.
during last month, he was complaining of dizziness /vertigo.
doctors said we must increase dose, but nothing changed after dose increase.
we referred to another doctor, he says these are side effects of lamictal, and now we decreased dose!
he is fine after withdraw and we decide to cut off lamictal and start another drug if any seizure.