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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 rootbeergirl16 on Thu, 2007-04-05 - 14:30
Hi There,
You said your child has an IEP. Here is a web site that offers all kinds of info to help you with your rights and your childs rights under special education law. wrightslaw.com. I do believe that your child under this law not only has the right to modified assighnments but also more time to complete work and it not be counted against her or his grade and cannot be held back or failed for not doing so. There is alot of great info so I hope this helps
Pam
Re: Re: My 10-year-old daughter with epilepsy
Submitted by mar96 on Fri, 2007-04-06 - 00:52
Hi,
Mindy, so sorry to hear Shelbie is not doing very well again. I hope her seizures get better. That must be so hard to see her going through all that. It must be so hard for you to sleep worrying if she is having seizures in the night. We are lucky my daughter has only had 2 grand mal seizures, but then was having absence seizures for the past 3 years. The grand mals are so much harder to deal with. They are so scary. Since she started the Lamictal after the 2nd increase of it I have not noticed any more absence seizures. I am hoping they are going away. A nurse whose son also has epilepsy says that is good, but hopefully it's not the honeymoon phase. I sure hope not, but I guess we shouldn't let our guard down. It could happen again. It hasn't seemed to help with her memory or her school work at all. I saw your post on another msg about your daughter acting like a 2year old. My daughter does the same thing. I keep telling her to act her age too. It is so hard to tell if it's just her bad behavior or the medications causing it. She seems to be a lot moodier lately, I hope it's not a side effect of the Lamictal. She also got a rash a couple of times, but the pharmacist said if it goes away then it can't be from the medication. I hope she's right. I was a little worried because that's the first side effect listed on the Lamictal and that it can be life-threatening. I am probably just worrying too much. How is school going for Shelbie or has she been back yet? Take care and let me know how Shelbie is doing. Thanks for listening too.
Re: My 10-year-old daughter with epilepsy
Submitted by Shar on Thu, 2007-04-05 - 13:00
Hello My 9yr old daughter is having a terrible year in school also. She stayed back in kindergarten so they don't want to keep her back again. 2nd grade has been a complete waste. She was doing fine up until Nov. 2006 and then her personality changed and school started to become a problem. She also has hydrocephalus (water on the brain) and was sent for an MRI by her neurosurgeon. Everything seemed to be okay with that so I called her neurologist and he increased the trileptal that she has been on since March 2006 after her 2nd tonic clonic. Her behavior at home and school continued to get worse. She even got suspended from school for hitting a teacher. The school has been patient with her but they still are having a tough time believing that all of her actions can be from seizures or the medication. In Feb. her neurologist did another EEG and it showed some activity so he increased her dosage of trileptal again in March and said give it a month. She goes back to the neurologist next week and we are going to discuss changing her medication. I have been getting phone calls from school almost every day. Some days they have to remove her from the classroom for a couple of hours just to avoid the distraction to the rest of the class. The school also diagnosed her with ADHD but her neurologist does not agree. Please keep in touch, its nice to have someone that truly understands