Photosensitive epilepsy

[kari]

I am new to this site and not really sure how it works but here goes.
My daughter ( 8 ) was diagnosed with photosensitive epilepsy a couple of years ago. Her head shakes uncontrollably whenever she is in the sun. It is controlled through medication (ethosuximide & zonisamide) however she still cannot enter into the sunlight without a hat and glasses. We are fortunate that the majority of her seizures are very small and unnoticeable to others.
My question today is this... She is having problems in school. She cannot concentrate, forgets nearly everything and is having to work on homework for up to 4 hours a night after school because she cannot get anything done during class. I have talked to the teacher but she just really isn't very understanding and offers her no help to speak of. I don't know if this is normal amongst children with epilepsy or if it this is abnormal. The teacher recommends we put her in special ed. onder: Any thoughts or suggestions?

 

[Nakamova]

Hi kari, welcome to CWE!

Cognitive issues can be caused by both seizures and by medications. Do you think your daughter's concentration problems are related to the medications she is on? If so, then definitely get in touch with her neurologist see what the options are -- maybe backing off the dosage slightly, or trying a different med such as Sodium Valproate.

At school, can you go over the teacher's head -- is there a supervisor who can let you know what the options are for evaluating and accommodating your daughter?

Best,
Nakamova

 

[kari]

Thank you Nakamova!
We recently raised the dosage of her medications to help her so that she wouldn't "space out" so I am not sure if we can lower the dosage or not but it's worth a try! What is Sodium Valproate?
As far as the teacher is concerned I will try going to the principle and seeing what is available. I don't want to coddle her but at the same time surely the teacher should try and help her to do work in class!?!

Thanks,
Kari

 

[Rae1889]

Does her school have flourescent lighting? If so, this could be the problem. Try seeing if wearinf pink or brown tinted sunglasses (if possible polarized) inside the classroom.

If the teacher uses an overhead projector for notes, you can ask to have your daughter provided with a hard copy of the notes.

 

[Nakamova]

Did your daughter's concentration problems get worse when the dosage was upped? I know it can be hard to tell sometimes, but it's not that unusual for meds to have cognitive side effects. When I was on Zonisamide, I was definitely aware of cognitive issues. (Zonisamide is sometimes called the Supermodel Drug because it can make you "thin and stupid", due to it's effects on appetite and cognition.)

Sodium Valproate is an anti-epileptic drug that is fairly commonly prescribed for photosensitive epilepsy. It's possible that it would work for your daughter without having cognitive effects (though this can be hard to predict since everyone reacts differently). Your docs may have had particular reasons for choosing the meds they did. Ideally it would be great to have her on just one med, but I don't know if that's an option.

 

[kari]

Thanks Nakamova,
I will certainly ask him... I know that it has required both medications to make her head stop shaking. She has about 1 spike every 2 seconds or so. It makes it really hard for her to function when her head is going crazy all the time. Since we are fairly new to epilepsy we are still experimenting with medications. The last one helped with the concentration but made her wet her pants constantly (depekote). Is it normal to be switching medications so often? Sounds to me like you have tried a few... How long have you been dealing with this?

 

[kari]

Rae1889,
Those are awesome suggestions... I hadn't even thought about it. Does the pink / brown color make a difference in the glasses? The teacher does use and overhead projector for everything she does, there is also florescent lighting in the room. Both are possible issues! I don't know why I didn't think of that!

Another thing I was thinking about that I would like to ask everyone is whether it is possible to ever get off the medications? Homeopathic remedies and what not. I am not sure if there is a solution other than the drugs or not but am curious.

 

[Nakamova]

Ah the Depakote is the same as Sodium Valproate, so I guess that's a no-go for your daughter. Unfortunately, it's not uncommon to get on and off the medication merry-go-round. People can develop allergies, or tolerance, or find the side effects too unbearable. I've been on Dilantin, then Zonisamide, and now Lamictal. I have seizure control with Lamictal and the side effects aren't "intolerable", but all the same I don't want to experience them for the rest of my life if there's a chance I don't have to. I'm saving my pennies to try neurofeedback to see if that will help. (You can read about neurofeedback here: http://www.coping-with-epilepsy.com/forums/f22/eeg-neurofeedback-501/)

And here's a vendor for polarized lenses that might be of interest: http://irlen.com/index.php

 

[JacobsMom]

Kari
I live in AZ as well. My son, not the one with seizures, had a traumatic head injury when he was 3. It caused him to have learning issues as well. When he was in 2nd grade I approached the school (in Nebraska) and they set him up for testing. The results showed he had issues with reading comprehension. If it was verbally told to him he got it but if he read it, it didn't stick in his brain. We moved several times over the next few years to different states and each new school district would set up a meeting and we would decide what was the best for Zach. When we came to AZ he was just entering junior high. He was in mainstream classes for the majority of the day and during reading he would go to a different class to receive extra help.
You need to approach the school, not the teacher and ask that your daughter be tested and set up an IEP. She doesn't have to spend the entire day in special ed. I would also suggest requesting that she be moved to a different teacher, however with the year almost over it may not be an option. By law the schools have to honor your request for assistance. My son is now 16 and no longer requires the extra help. So there may be a way for the special ed teacher to show her how she can retain what she is learning easier.

Good Luck