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8 year old with rolandic epilepsy

Sun, 12/05/2004 - 20:26
Topic: Family & Friends

Hi,

My son was diagnosed in spring 2003 after several mild seizures. He has been on carbitrol since then -150 mg 2xday. Yesterday his neurologist increased the dose to 200mg 2xday. He has been having difficulties in school with distractibility and handwriting. The distraction issue started about the time his meds started, and increased when his dosage increased. We are in the process of working out with Drs. meds for add/adhd. Has anyone had similar distraction problems while on carbitrol/tegretol? And, how about handwriting?

Thanks, robin510

Comments

RE: RE: RE: RE: 8 year old with rolandic epilepsy

Submitted by lizh on Tue, 2004-11-23 - 09:16
HelloMy 11 year old son has BRE and has had it for about 3 years. His seizures come in clusters of 2 and he has two a month. He has been on various medication throughout his 3 years but nothing seems to help (do not mean to sound negative), but like you i am very concerned. Infact medication has not helped in anyway.My son sees a Neurologist who assures me that he will grow out of the seizures by about the age of 14. We are at the moment trying to talk to the neurologist about taking him off medication, as none of the four kinds of medication he has taken have helped, and to be perfectly honest, i am not very happy about pumping drugs into his body when they seem to be having no effect.Like you we have a monitor - which makes Tom feel safer.Thanks for reading and all i can say is i know this how worrying this all is.Another worried mommy

RE: RE: RE: RE: RE: 8 year old with rolandic epilepsy

Submitted by antcon on Tue, 2004-11-23 - 20:21

Hello

I am glad I finally found some moms with the same concerns as mine.  I was also happy to hear that some dr say no meds.  We visited two different dr in different parts of our state and they both said MEDS.  First of all I could not see medicating my son for something that happens one every three months and last a few seconds.

The dr's did nor agree and told me that my son could die during one of these seizuers which totally freaked me out.  They gave me a prescription of a valium suppository just in case he goes into a grand mal. 

They made me feel like I would not help my son because I would not medicate him.  I did find another mom who saw a dr at children's who said no med.  I also saw a different dr at children's who said what I wrote above.

It would be great if we all could continue to support each other through this via this site or email.  If anyone is interested let me know.

Iknow how hard it is to get a good nights sleep.

antcon

 

Hello

I am glad I finally found some moms with the same concerns as mine.  I was also happy to hear that some dr say no meds.  We visited two different dr in different parts of our state and they both said MEDS.  First of all I could not see medicating my son for something that happens one every three months and last a few seconds.

The dr's did nor agree and told me that my son could die during one of these seizuers which totally freaked me out.  They gave me a prescription of a valium suppository just in case he goes into a grand mal. 

They made me feel like I would not help my son because I would not medicate him.  I did find another mom who saw a dr at children's who said no med.  I also saw a different dr at children's who said what I wrote above.

It would be great if we all could continue to support each other through this via this site or email.  If anyone is interested let me know.

Iknow how hard it is to get a good nights sleep.

antcon

 

RE: RE: RE: RE: RE: RE: 8 year old with rolandic epilepsy

Submitted by Lisa on Thu, 2004-11-25 - 08:18
My 6 1/2 year old son was diagnosed with BRE just 2 weeks ago. He had his first episode in September 2004 when he had 3 seizures (2 mild and one grand mal) within a week. His EEG was abnormal. This is very new to us and there's no history of Epilepsy in our family.We're seeing a Neurologist out of Sick Kids Hospital in Toronto and we're pleased that the Doctor has said no to meds at this time (although, I realise this is very new and the situation on the meds may change). We've also been given "Ativan" in the event that he has a grand mal that lasts more than 5 minutes (as the last one did).From what I'm reading on the web regarding BRE - most children with this type of epilepsy are not on meds. To get a good night sleep, the monitor helps and so does the family dog (who actually barked to notify us when our son had his grand mal).I've read from other moms on this message board about issues in their children's behaviour. One mom in particular noted that her child was having behaviour problems after being diagnosed and starting on meds. Since my son is not on meds - I can't comment on the meds part but I can share with you that my son also had behavioural problems at school after the ordeal in September (the grand mal, the ambulance ride, the hospital stay, the X-rays, the ct-scan, the EEG, etc...).I've read that children will often act out (for us it was at school - pushing the teacher's limits) to ensure that someone always has their eye on him so that in the event he has a seizure, someone will be there to help. He also became quite the bully with his peers. I read that it was not unusual - they want other kids to think they're tough should they have a momemt of "weakness" such a seizure. We've talked about his concerns with him and things are much better now at school.I would love to hear from other moms who are willing to share their stories.Thanks.

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