seizure questions

[Jess in FL]

My dd 8 had her first seizure about 3 mths. ago. It was a big one. She ended up with a concussion. It was very scary for all of us.

Since the seizure she has had some OCD compulsions, which we were told is normal. She has a toxic reaction to the triliptol (sp) they put her on at first. Now she is on topomax and is doing much better.

However, she has forgotten how to do things she knew before. This is really frustrating for her. It makes her feel stupid b/c her little brother is only 1 yr. younger and he is catching up to where she is. Also, she knows that she knew this stuff. I don't know what to do.

I have her and her brother using different programs and I am fine with reteaching. I just don't know how to help her through her frustration. I hate that she feels so bad.

Has anyone else been through this? What did you do?

[Alice R]

I'm so sorry. Seizures are very scary. :group:

Was she developing typically before she had the seizure?

[Jess in FL]

Yes, she was developing normally before the seizure. She was ADHD, but very bright.

Seizures are so scary. I thank God that she hasn't had one since. But it really worries me....if these are the side effects from one.....

[Missy =D]

I have been there...done that...and still wearing the T-shirt.

I'm sorry you are going through this. My oldest dd was diagnosed with complex partial seizures at the age of 2. It took us years to find the right medication and dosage to gain control. Yes, all that you are going through is typical, but it will get better in time. Seizures coupled with side effects of medication often lead to a variety of challenges as noted in this article http://www.efwp.org/programs/epilepsy_learning.shtml Patience is the key and it takes a bunch. I use to think that I was a bad teacher then I learned to accept that this was not her or my fault...it just was...period. My dd has had to work much harder than many to achieve simple things. But when she gets it, she soars!! :group:

[Missy =D]

Yes, she was developing normally before the seizure. She was ADHD, but very bright.

Seizures are so scary. I thank God that she hasn't had one since. But it really worries me....if these are the side effects from one.....

The seizure itself did not cause this...it is a combination of many things neurological coupled with medication. I have no doubt that she is STILL very bright indeed!!

[Sue C]

Was that her first and only seizure? My family has a history of seizures so unfortunatly I do know about them. My daughter had a grand-Mal seizure at 15 months. They did an MRI but all came out normal. After that she continued with a few 'drop seizures' but nothing real regular. They didn't medicate her. They did a CT scan and if I remember right another MRI. I guess what I'm asking is did you question the Dr. on why he is medicating her? Or are there more seizures you didn't tell about?

As for the Topomax, I am on it for Migraines and I feel like I have the beginnings of Oldtimers half the time!! :lol: Your poor daughter, I can sympathize with her!! It really does slow down your thuoght process!! I hate it! It has seemed to help my migraines tho so I guess I'll stick with it.

I wouldn't hesitate to ask the Dr. about why they did medicate when they did. But maybe there is lots of info you didn't give. It is SO frustrating!! :group:

[Missy =D]

Sue, my dd was given medication after only one very long seizure that she was hospitalized for. She had normal MRI's and CT's but given the EEG results were abnormal they felt strongly that others would occur...they were correct. Epilepsy, as you know, can vary greatly.

[Jess in FL]

Thanks for the article. This was her first seizure, but she had brain surgery when she was 2 to remove a blood clot from an AVM (weak blood vessel that burst). We knew it was a possibility she would develop seizures as a result of that. I guess we were hoping that it wasn't going to since it had been 6 years.


The dr. felt that with her history, the fact that she had a grand mal, and that she has migraines topomax was a good fit after the toxic reaction to the other.

How did you help you children to not be so anxious/scared about having another one? I am patient with her, but I just can't seem to help her be patient with herself:sad:

[Sue C]

:group: I'm sorry Jess, sounds like you and her are dealing with a lot. I think just keep doing what you are doing. Taking it slow, with the academics and life. Not giving her more than she can handle, it will come. My son who still has seizures is now 19 but is developmentally disabled. But even so he is afraid to go to church or anything because he doesn't want to seizure in front of people. I always just tell him that people understand and Jesus is with him. We pray before going anywhere.

Not much help I'm afraid but it sounds like you have good Doctors. :group::group: for you and your daughter. Seizures are no fun and they don't get any easier. I'm glad the Topomax seems to be working. My 19 year old takes Topomax as one of his seizure control meds and we have had fairly good luck with it. It seems to have cut down on his seizures.

[Missy =D]

Ahhh...patience with self is still difficult for our dd. We work on it every painstaking day. When she is having a bad day we take a walk, talk to God, try to giggle about something silly and sometimes have a good old fashion cry. Hang in there Mama :group: I have seen amazing character traits develop in our dd through her trials. She is compassionate toward others and her faith has deep, deep roots. :hcry: I'm so proud of my baby girl!

http://www.efa.org

[Missy =D]

I was in the middle of ordering this and thought of you... http://shop.epilepsyfoundation.org/store/category.aspx?c=for_children_ep%28base%29

My dd just turned 11 and I thought that this book was a good choice, but there are others if this one doesn't meet your dd's age.

[Jess in FL]

How do you deal with end of year evaluations? I don't know that there will be the expected progression since we are really going back to mid last year math.....

[Sue C]

I'm not going to be any help Jess. I am in Montana and we have some of the most lenient homeschool laws. We don't have end of the year evals. I would call a contact person from your state and ask. A special needs child in the public school is put on an IEP (Individualized Education Plan) so I don't see why some exception couldn't be made with a child at home given the circumstances. If she was in the school system they would be making an exception with some sort of IEP. So, I didn't want your answer going unanswered but there is your no help answer. :lol: Or you could just move on out here to Montana!!!

[Missy =D]

I've been homeschooling in Pennsylvania with the same evaluator throughout. She understands and appreciates our dd's unique needs as she grapples with the extra level of challenge in her life. I believe that a good evaluator will be able to note progress and take into consideration your dd's challenges as well.

[Jess in FL]

Hmmm....Montana is a bit too cold for us:lol:

We have had the same evaluator for the past couple of years, so she'll be understanding. I guess I should talk to her.

[Chalane (FL)]

How do you deal with end of year evaluations? I don't know that there will be the expected progression since we are really going back to mid last year math.....

Just tell the evaluator the truth. My ds has been in the this exact position. If it would make you feel more confident that he/she would believe you either take a copy of the doctor's notes from a visit or ask him to write a letter. My ds's eval. completely understood and was glad that we we're trying to deal with what is. I can actually track some of his seizure activity by his portfolio. Hang in there we are now seizure free since Mar.:clap: You may want to ask the Dr. is a meds switch would help.

[Jess in FL]

:clap: On being seizure free since March:clap:
I was hoping we were going to be, but I think she had one during the night last week. She woke up with a horrible headache that actually made her cry. No other symptoms and it lasted all morning.

We went down to the children's hospital and they reduced her meds which seems to be helping with the school issues. Unfortunately they are worried there is something else going on, so she is having an angiogram with an MRI this month.

I talked with our evaluator and she was very understanding, so I am not as stressed out about that, but I think I will get some sort of note from the dr. That is a good idea and probably something that should be on hand.

[Chalane (FL)]

Jess so sorry she had another seizer. My ds had them for 10 yrs so I truely know how devestated you are right now. You're both in my prayers. Let us know about the test results.