PPMD Community

Seizures with DMD?

My Grandson had DMD. He started having seizures 18 months ago. Last week the Neuro told me that seizure in DMD patients is not common. Are there any other DMD children out here that have seizures?

Favorite

0 members favorited this

▶ Reply to This

Replies to This Discussion

Permalink Reply by Keith Van Houten on March 11, 2014 at 4:47pm

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.

▶ Reply

Permalink Reply by Janice Corriher on March 11, 2014 at 6:03pm

Thanks! Yes, I am on Facebook. Let me know if she would be willing to share.

▶ Reply

Permalink Reply by Susan Rathfelder on March 11, 2014 at 7:34pm

Hi Janice,

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.

Susan

▶ Reply

Permalink Reply by Susan Rathfelder on March 11, 2014 at 7:48pm

Here is the paper I was referring to.

Susan

Attachments:

Epilepsy in Duchenne and Becker muscular dystrophies.pdf, 495 KB

▶ Reply

Permalink Reply by Janice Corriher on March 11, 2014 at 7:48pm

Hi Susan,

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.

Janice