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My 10-year-old daughter with epilepsy
Fri, 03/09/2007 - 23:09Topic: Parents & Caregivers
I am new here. My daughter had her first seizure at 6 yrs. She had a grand mal or tonic-clonic seizure. Seven months later she had another seizure and then was started on Clobazam. She was on Clobazam for about 6 months, but then the doctor changed her meds as she was having a lot of irritability and moodiness on it. She was started on Valproic acid and slowly weaned off of the Clobazam. She has been on Valproic since. She started having absence seizures a couple of years ago, but they were getting more frequent and lasting longer. So she now has started on Lamictal as well as the Valproic Acid. She is having a lot of problems at school over the last 4 years. This past year has been awful for her. She is failing grade 5. She has an IEP, but this year her teacher is new to the school. She doesn't know my daughter and has no patience for her at all. My daughter has been having absence seizures and the school is aware but I don't think they believe that is what is happening. I have tried talking to her teacher, but she never offers any info. as to how she is doing, other than she is doing the same, very non-compliant. My daughter cries almost every day, she hates school this year and doesn't want to go much of the time. The teacher gave me a letter last week saying she needs to do tests for about 5 subjects in the next week. She had this week and then next week they get report cards on WEd. If my daughter doesn't do these tests, she will get a failing grade. Right now she is getting incomplete. Why the teacher never told me when she was getting so far behind, offered to send work home for her or anything to try and help my daughter. I think she just leaves my daughter doing nothing and never bothers to see if she is having problems or seizures or anything. I think she just doesn't want to do anything to help her, figures she should be able to do what all the other kids are doing in her class. She doesn't have a support worker in the class with her, which she has for the past 4 years. They do have a support worker that comes in once in awhile to work with her, but not enough I think. I am hoping the addition of the Lamictal will stop her absence seizures or that she won't have as many so she can concentrate better thereby giving her more confidence in herself. We have decided to keep her in grade 5 for next year as this year has been a total write off for her. Sorry for all the complaining, I just needed to get this out. I never realized the anti-seizure meds and the seizures could be causing her learning problems and her knowing things one minute and then gone the next until reading a lot of the posts here. Her doctor always said he didn't think it was the meds or seizures. He figured she has ADHD too. It is so hard to know which is true and probably never will. Thanks for listening.
Comments
Re: Re: Re: My 10-year-old daughter with epilepsy
Submitted by MindyRoy on Wed, 2007-04-04 - 12:04
Hi!
Thanks for your email. But we have had a terrible week. For some reason Shelbie started having gran mal seizures last Tuesday. Since than she has had a total of 28.
Tuesday evening I hear my son yelling at shelbie to stop making weird noises. After a few minutes, he came to me and said she wouldn't stop. At first we thought she was just playing, but Jeff, dad, walked into her room and she was laying on the floor. We think she had a seizure and fell off her bed. About 20 minutes later we were able to get her to her bed. She fell asleep, but 1hr later she had another one. We called the doctor on call, and they decided to up her zarontin.
On Wed, she had 2 more in the morning. I paged the doctor. She gave us a script for diastat that would stop them right away if she had another one. Which she did later that evening.
On Thur, she was feeling better, so I we got ready to go to school and before school daycare. On my way to work, the daycare called and she had one. It was a light gran mal, but strong enough to where she wet herself. I worked for a few hours, and received another call that she had another one. I decided to take off work to go and get her. She slept most of the day, and was feeling a little better by evening.
Friday morning we woke up and she was doing fine. As she was getting dressed, she had one standing up. Luckly I was in her room to where I caught her. After a hour she was feeling better that she ate breakfast, but had another one a few hours later. I called the doctor and she decided to up her topamax. So know she was taking 125mg 2x daily of topamax and 250mg of zarontin in the morning and 500mg of it at night.
Well, Sat and Sun wasn't any better. She had a total of 6 each day. The weird thing about Sun was that she started having them during bedtime. She had a total of 4 as she was trying to sleep.
Monday was a little better. She had a small one in the morning, but 3 during bedtime. Each time we had to do the diastat treatment. She did not like that because we have to insert it rectally. But she was able to sleep without any seizures.
Tues is was feeling much better. She was able to go to daycare. I called the doctor and they decided to up her topamax every 3 days. So right now she is 125mg in morning, and 150mg in evening. Every 3 days she will go up 25mg until she reaches 225mg 2x daily. They also decided to give her a pill that would calm her down intead of using the diastat. But Tues evening she had 2 while asleep. We gave her the sleeping pill at 745, and the seizures started at 910. After the 2nd seizure, she was able to fall asleep. We had a pretty good night after that.
Today she is doing okay. The doctor wanted to draw blood to check her levels, and to test to see if she has a seizure disorder. This is a new test, so I am not sure what they are looking for, and what the treatment will be if it comes back positive. We should know something in a week.
Sorry for this being so long, but I feel a little better telling my problems. I have been so lost this whole week. But hopfully that upping her topamax will stop these things. This is not normal for her to have this many seizures. She has had 28 in one week. The most she had was 5. But that was 1 a day for 5 days. The reason for these was because we were changing meds from topamax to depakote. Once she had her 5th seizure we started back on the topamax. She hasn't had a gran mal seizure since than until now.
Better go for now.
Thanks for letting me talk.
Take care!
mindy
Re: Re: My 10-year-old daughter with epilepsy
Submitted by Mollysmama on Tue, 2007-04-03 - 22:09
Hi Mindy & all,
I found this other website ibsgroup.org/chronickids
anyway there is a little information with transitioning back into school and other similar topics. Check it out.
Best wishes as always,
d
Re: Re: My 10-year-old daughter with epilepsy
Submitted by mar96 on Sun, 2007-04-01 - 23:05
glad to hear your daughter's seizures seemed to have stopped with the zarontin. sad to hear she's still having problems at school and with the kids at school. It is so hard on them. My daughter has the same problem with kids ignoring her at school. I have seen some of them give her these strange looks at school and it makes me so angry some times. But i don't say anything as I don't want to make it worse for my daughter. My daughter, Missy, is starting Sylvan tomorrow for 3 days a week after school. She is working at a grade 2 level in math and a grade 3 level in reading and she is in grade 5. It's no wonder she's having so much trouble in school. I believe the absence seizures and the meds have a lot to do with her being so far behind. The school told me they don't believe she's at grade 3 level for reading because the psychoed. eval. they did in grade 3 showed her in the average range. But it is her comprehension that is so far behind. But they don't believe it's that bad. They just figure she is being defiant and not paying attention. They also don't want to retain her, but we are going to fight for that. Hope your daughter continues to do well and things get better for her at school.