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UPDATED: Sun, 12/05/2004 - 5:26pm
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robin510
8 year old with rolandic epilepsy
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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
By robin510 at Sun, 12/05/2004 - 5:26pm | 479 views | 19 comments
Topic: Families & Friends
Recent Comments on this Discussion
This place is so wonderful. It is so great to be able to hear what others are going through. This is so new to us since my son's diagnosis this past March. We have recently relocated and I have some concerns regarding my 10yo son and BRE. Trying to quickly get into a specialist has been difficult and the GP we saw to hopefully expedite a referral appt. to the neuro has left me deflated and feeling very worried. My son recently has had some trouble with short term memory and seems to be struggling with some math concepts. Prior to this, math has been his most favorite and easiest subject. As for his memory he has a mind like a steel trap, LOL. Since we did just make a major move, I am inclined to think he is just having adjustment issues and maybe is a little depressed. (yes, there are some social and school adjustment issues.) Although he is maintaining straight A's, I am wondering if it is possible for children w/BRE to have awake seizures? My son is not on meds and the GP (who I don't put much stock in, btw) thought I was nuts for NOT medicating....Anyway, my son has forgotten some very significant (to him) conversations and also forgot I was going to pick him up from school vice bus riding one day last week. (this is a very big deal...something that HE HAS NEVER forgotten since he was in preschool...) and he even is beginning to question why he can't recall certain things.....I hope I don't sound like a stupid parent who is missing the obvious; but I was/am under the impression his seizures are only sleep seizures. And, yes, he is scheduled for another EEG in 10 days. Not soon enough for me. Obviously I want to rule out the cause of this as physical before taking him to a psychologist/psychiatrist to consider whether this is caused by emotional distress, etc. Thanks for any feedback. You can also email me directly at JENNIG530@AOL.COM. Again, many thanks to those of you who are here. :)
IMy 9 year old son was diagnosed with BRE last spring - also diagnosed with a mild case of sleep apnea. We, too, chose not to medicate. Last year he was inconsistent in school which we attributed to his sleep issues. This year he is really struggling as the work is more demanding. The neurologist that diagnosed him basically gave us the diagnosis, said it would go away by the age of 15 or so and then told us "no further treatment unless he develops daytime seizures" which she said was highly unlikely and then escorted us quickly out the door. She really made it sound as if this was just a little routine blip on an EEG. I am sure this neurologist is used to seeing children who are not as fortunate, but we can't seem to get anyone to answer any questions we have about BRE and whether this could explain his recent learning difficulties. I wrote to the neurologist with a few questions I had after I had time to digest the diagnosis and she had her assistant call me and give me some comments that she relayed. Finally, her assistant said that BRE, in my son's case, can not be the cause of any learning or memory issues and that if he struggles we should schedule another appointment to have him tested for ADD or ADHD. I have no problem with additional testing, but all the research I have done states that BRE frequently can cause learning difficulties. I have been to the pediatrician, who told me to go back to the same neurologist and the school doesn't seem concerned as he does "fine" and is not affecting their numbers by failing any of the standardized tests. In the meantime my son, who was a very good little student, is now saying things like he is "stupid", he hates school, he can't remember anything and that sometimes people talk to him and he doesn't know what they are saying...etc... If it is a direct, simple problem i.e. multiplication he will get 100%, if it requires any two step or complex summary of material he will get an F (37% on one math test, 43% on one science test, 54% on one social studies, yet 100% on many others). In addition, I notice that he has completely forgotten things from last year, a song from a skit he did, the song about the states - can't even remember that he learned it at all. In addition, every morning I have to do math problems with him to make sure he remembers how to do them, and read something to make sure he is paying attention to every word. I must supervise all his homework assignments. In short, no one else thinks this is a problem, except me who spends hours with my son explaining what I know the teacher explained all day. Watching my son's face when he presents me with his F's are breaking my heart as is studying for a test and sending him to bed knowing the material and then having him wake up the next morning only remembering half of the material. Have you found anyone to help you with your son? Do you have any advice for me. We live in Connecticut, close to NYCHi Robin,
For more information regarding Rolandic Epilepsy please visit: http://www.epilepsy.com/epilepsy/epilepsy_benignrolandic.html
Epilepsy.com Staff
Hello Moms & Teachers,
I have had epilepsy for 35 years. And unfortunately for all of us distractions and daydreaming are the nature of this beast. What you need is smaller classroom size for you child or teachers aid assistance for those that need it. Be patient but be constistant with your child. Don't put them in a classroom and say he or she is lazy or a daydreamer. That what happened to me. I have worked 5.50 an hour jobs until 5 years ago when someone took the time to teach me how to run a computer and now I make 30,000.00 a year. I not a millionare. But it feels great. I sell home and auto insurance for a major insurance company.
Do not do your childs work for them. Because you feel its to hard for them or that they may not pass the grade. So What ! let them be put back a year it may be the best thing that happens to them.
Grandma mimi
Was his seizures controlled before the increase? Was the med increased because he was still having seizures or because his level was lower than what the doc liked and he just decided to increase it because of that?
The problems in school are related to the medication; however it could be abnormal activity in the brain also. Been going through this for years, and seizure control, unfortunately, has to come before the problems associated with the meds. We have no choice. Being it's handwriting, find out what area in the brain is responsible for that (maybe right prosterior region?) and try to associate it with where the docs think the seizures are beginning. Maybe there is a correlation.
I can't tell you whether or not your child may have ADHD on top of the seizures, or if it is purely the meds/seizure activity. It's something you need to use your instincts for, talk to your doctor and decide if you want to medicate for both. Does your child have an IEP plan at school? If not, you should start finding out about that so that he gets the extra help he needs.
hello. my 6 1/2 year old son was recently diagnosed with rolandic epilepsy. Any information on this would be most appreciated.
signed, a very worried mommy who cant sleep at night.
Hi
My 9 year old son was diagnoised in July 03 with BRE. Since his seizures were mild and did not happen often, we decided not to place him on any medicine.
He has had under 10 since this was dig. I know how scary it is. Let me suggest if your son is not on med to place a baby monitor in his room so you can hear him if he needs help.
That is what works for us. If you would like to know more, email me
Hello!
thank you for taking the time to respond to my post.
We purchased a baby monitor and put it in my sons room. I find comfort in being able to hear him thru out the night.
We are taking my son back to the Childrens Hospital for his appt with the Neurologist.
My question i have is........... i only know of the one seizure my son had........ and yes, he had the EEG done, and yes it came back abnormal......... but, i thought they only gave the term "epilepsy" diagnosis if you have had MORE than one seizure? The pediatrician made a comment that since he has BRE benign rolandic epilepsy) which occurs mostly at night, that we may not have even been aware that he was having seizures. So, i guess my question is, how can the neurologist call it epilepsy????
We are continuing to keep a close eye on our son............. and of course, saying prayers that he has no more seizures.
Would love to chat with anyone whose child has been diagnosed with BRE........... i am feeling really alone in all of this.
Thanks!
signed, a worried mommy!
BRE has a very distinct EEG pattern. If it is found than a diagnosis can be made even if only one seizure.
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
I have to first start by saying that i find comfort in knowing that i can come to this board, and i can find the support that i need. I dont know anyone OFFLINE that has a child or someone they know with benign rolandic epilepsy, nor anyone going thru what we are going thru.
We took my son back to the childrens hospital in Delaware, and they put him on Trileptal, he will be on this medication for two years at which time he will go back to the childrens hospital and have another EEG done and we will go from there.
The Neurologist said in no uncertain terms that my son will have another seizure. He was very concerned by what he saw on the EEG a few weeks back.
So far my son is doing ok with the medicine, he had his third dose last night, he will be taking it twice a day, it is liquid form, and we had it flavored like bubblegum, and he likes it!!
Also, he was diagnosed with Exotropia by the Pediatric Opthalmalogist. We are going to take the wait and see approach with it, as the only "solution" to his problem would be surgery, and i am not too keen on that. Unless it was absolutely necessary.
Thank you so much for listening to me! And to anyone that would like to email me privately, my email is Momma2goodkids@aol.com........... i would love to chat with moms whose child has BRE..........
thanks!! have a great night.
love, dana =)
I have a 6 year old daughter that had her first rolandic seizure Dec. 12, 2004- diagnosed s/p EEG and MRI. No meds given initially- Pedi Neurologist against it since they happen so far and few between. O.K. story changes- had a nice short seizure upon going to sleep Feb. 10th 5 minutes completely done- cool can handle that. Next night watched her fall asleep and walked back in the room- having a seizure, lost bladder control and post-dictal eyes wide open for a very long time and unresponsive- cannot handle this went to E.R. and started on Trileptal! Unfortunate part - I need help getting through this horrifying experience- like thinking your child is going to die or be so lifeless forever - any suggestions?? I cannot sleep!!! email mary.e.korte@uth.tmc.edu
Mary
To Jen
Was that your choice not to medicate? Our son is now 9 and was 7 when diag. We did not place him on med even though the docs at Childrens Hospital insisted.
I was jsut wondering, Thanks Antcon
My son's neurologist basically told me that choosing meds was completely up to us. If we were comfortable dealing with the seizures and bed-wetting, that it was okay to be med free. I asked my son how he felt and he decided no meds. So far we are happy with that choice. My son did participate in a research program at MUSC that his neurologist conducted. His theory was that there may be a reduction in centrotemporal spikes while a particular piece of music is being listened to in sleep....very interesting stuff. May I ask why your doctors insisted on meds?
To Goodmama
Is your son on meds?? What Dr at Childrens Hospital did you see? We went there for a second opinion and both Dr's said to medicated him. We chose not to since I did not the side effects to interfere with him.
There is a Dr at Children's that said no meds. If you do research on the internet, most site says no meds. Its defined at Epilepsey because they have seizures. Its Begnin because they will outgrow it when they reach puberity.
I am glad you got the monitor. Also, I now my son is move prone to having a seizure if he had too much caffenie, sugar, a cold, or going to bed late. They need 10 hours of sleep.
Let me know,
antcon