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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: My 10-year-old daughter with epilepsy
Submitted by Mollysmama on Wed, 2007-03-21 - 14:31
I also have a daughter with complex partial seizures, but isn't Bipolar. Reading your post, sounds so much like our situation. She was diagnosed in Aug. of '05, after a month long of testing, as no one saw her first seizure. It was 113 degrees that day (in CA) and she was upstairs in her room. Her little sister came and told me Molly was sick. I found her staring straight head, squeezing her right hand open and shut. Vomit all around her and she had no idea where she was or what she was doing. I got her cleaned up, gave her tylenol for a headache and she immediately feel into a deep sleep. I took her to the Dr's about 4 hours after actual episode and he thought at the time it was a heat stroke, except that she had about a three hour memory loss. Second episode 2 months later, then she started on Tegretal, after each episode, Dr increased meds and up until last week she was taking 5 doses a day. She has had 7 seizures since '05 with 4 of them within the last seven months. She is normally an A / B student, but this last progress report dropped drastically - since this last med increase and she had another seizure. She is have difficulty in grasping new concepts and getting D / F on tests. She has a problem with memory loss and concentration. Before this last increase in January she was doing well in school, even on high honor roll. She is now in the process of switching from Tegretal to Valproic Acid (liquid), in hopes that she will no longer experience the side effects that are affecting her school work. The Tegretal had changed her seizures, she was still unaware of her surroundings, each time something different happened. Sometimes she would vomit, once she stopped breathing (like she just forgot to breathe), usually she would just sit down and "be out of it", all followed by a bad headache & then deep sleep - but no convulsions. I spoke with her 5th grade teacher and she recommended I get Molly a tutor. WHAT@! NO! Anyway after talking with many teacher friends and the principal at her previous school I learned about 504 plans. It is so sad, that I had to search this out - and that the teacher was just happy to tell me to go get Molly a tutor. She says in meeting with the middle school principal and I that she has noticed Molly staring off in class and not being able to concentrate. Plus these last four seizures have all been at school and all between 1 - 2 p.m. So we are now in the beginning stages of the 504 plan. I completely understand your feelings. We just want the best for our girls and it is not always easy. I now have a new purpose, as an advocate for my daughter and just thinking of it that way gives me the encouragement to keep going.
Re: Re: My 10-year-old daughter with epilepsy
Submitted by mar96 on Wed, 2007-03-21 - 20:01
Hi, thanks for replying. What is the 504 plan? I was at a loss of what to do and I phoned Sylvan Learning Centre today to find out if they can give me any advice. They were quite helpful and he also told me about a community outreach worker that helps parents with children with medical problems with supports. This lady is supposed to call me in the next day or so. Apparently there is funding we can apply for through the ministry and she can help us by explaining it and where to apply for it. He was a lot more helpful and couldn't believe the school never told me about this. He said it sounds like the school is just leaving it up to me myself to find support, no kidding. Hopefully I can get more help now. I have a meeting with the school next week, a whole 1/2 hour during parent/teacher interviews. Hopefully they run on time. Also have an appointment with my daughter's ped. I am going to ask about possible referral to ped neurologist too as he has never suggested that yet. Anyways thanks for the reply and you're right we do have to advocate for our children and that keeps us going.
Re: Re: My 10-year-old daughter with epilepsy
Submitted by mar96 on Tue, 2007-03-13 - 19:56
Thank you all for the advice. I am going to try and set up a meeting after spring break. They have all next week off for spring break. I have been trying to get my daughter to do some of the tests the teacher wanted her to do, but her teacher took 2 days to give her one test and 3 days for the next test. I asked her to give her 2 tests today as she was ready (gave daughter a note for her). She never gave her any tests today again. Tomorrow they get their report cards and the tests were to be done by Thurs. I don't know why the teacher even bothered with the letter if she had no intention on giving her tests when she was ready anyways. Yesterday she had a bad day and ended up in the office all morning. The support worker was working with her and couldn't get her to do work fast enough and got frustrated and sent her to the office. She had to work in the office all morning through lunchtime. My daughter kept saying she was really tired. I don't know if it's because of the new medication or not. The vice-prin. told her if she didn't do her work in class she would have to stay at home to do her school work. She told me she liked that idea, because she wants to be home-schooled. That probably gave her an idea of how to get out of school as she hates it so much there. I know I really need to have a meeting with them. I live in Canada so it is a little different. I think I need to meet with the principal. Her teacher has never even come to any of the meetings we have had earlier in the year. Anyways thank you all for the help. It is nice to talk to people that are going through what we are going through and understand.