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My 10-year-old daughter with epilepsy

Fri, 03/09/2007 - 23:09
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 littlebug on Sun, 2007-03-11 - 00:18
Iam sorry you guys are having such a rough time!I just went threw it with my daughter last year but with her it was kindergarden.It was so hard to retain her.She was heartbroken but in the end it was the right choice.This year she is doing so much better.If I was you I would be calling for another IEP meeting.It doesnt sound like your daughters teacher or school is doing right by her.Why doesnt she have an aide in the classroom to help her when she needs it?My daughter has a problem with visual processing because of her seizures.We learned this from her IEP testing.She didnt qualify for an IEP but did for a 504.I just meet with her principal agian yesturday and he is already picking her first grade teacher and will be educating the new teacher on what my daughter needs in the classroom and what her symptoms are.He also is putting an aide in the classroom next year to help my daughter when she seems to behaving a hard time.She doesnt need one full time so the aide will assist the teacher when my daughter doesnt need help.Its little things the schools can do to help our children.As for your doc-do you have the option to see another one?My daughter has seen several neruo's from some of the best hospitals in CA and all of them have said that seizures alone can cause learning disabiltys.the meds can cause learning disabilitys and for some when you put the two together it can make it that much harder.It seems that when docs dont have an answer its easier for them to say its add or adhd.I hope things get easier for you and your daughter.I also have one in seventh grade so I understand how hard it must be for you.

Re: My 10-year-old daughter with epilepsy

Submitted by kelslp on Sun, 2007-03-11 - 12:04
You have a right to request a review of her current IEP at any time during the year if you think it is not meeting her needs or being implemented appropriately. Make it clear that you expect the teacher to be at the meeting and put it in writing. My 13 year old daughter has complex partial seizures. Her teachers do not always recognize what is happening. She comes home and tells me, "I think I had a seizure because I felt like I woke up in the middle of a test." Sometimes the teachers will tell me she wandered around the room or mumbled, but sometimes they don't notice anything. I wrote a detailed letter that I copied to all of her teachers that described her seizures so that they know what is going on. I have also tried to get her to take responsibility for telling someone or going to the nurse when she has these feelings. Additionally, she has short term memory issues and must actively integrate information in order to retain it. Sometimes this requires reteaching. One of the things I am trying to do now is get the teachers to check for understanding of new concepts by asking her to tell them what she learned and then they fill in the missing info for her. This also helps her to learn ways to compensate for what she is missing. I understand your frustration. I have found that my biggest jobs as my daughter's advocate are to educate people who are in her life and teach her independence and responsibility. Let me tell you that it is not always easy in middle school. She doesn't want to be different. She doesn't want people to know. She is sometimes angry that she has to deal with this at all. Good luck. Hang in there.

Re: My 10-year-old daughter with epilepsy

Submitted by MindyRoy on Mon, 2007-03-12 - 12:36
Hi! Sorry to hear that you are having so much problems with the school. My 12 yr was dx with E in Aug 06. She also has ADHD. We held her back in 2nd grade, but that did not help. She had a hard time in 2nd grade the 2nd time. In 3rd grade, she did okay, but 4th was really hard for her. We finally got an IEP. She did have a learning disability. She was able to have special education for 1 hour during the day. Well...since than she starting having seizures. The special eduction didn't change until she started having a seizure everyday for 5 days, and started having absence seizures in Jan. We requested an aid for her, which the school provided. The aid helped a little, but she was still having a hard time. Her absence seizures started to increase, so I asked the school for some more help. They decided to take her out of the classroom and put her in another room with just her and the aid. So far that is doing okay. But, by law once you request an IEP, they should be able to do it. What you may want to do is get a letter from you neuro doctor. I did request a letter from the doctor about the aid. If that doesn't work, than you should call the State of Education in your county. I did call our state to make sure what they were doing for Shelbie was correct. I also know that the medicine has something to do with her learning. She is on topamax, and it interfers with learning. I know she will struggle for a while, but she does have wonderful help. I hope this helps. Mindy

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