DD with complex partial seizures

[my*2*angels]

HI! I don't know if I am posting this in the right place or not, but my 7yo dd was diagnosed about 4 months ago. I have been doing alot of research but would love to hear from anyone who might be going through this with their own child. Just wanting to hear your experiences with different meds and things that help your child. We haven't yet found a med that has any type of control so far. I have just been feeling really alone lately in our daily struggles with this and would love to hear from others! Thanks!

Mindy

 

[SueM in MN]

I am going to move this to the disABILITIES Community Board since the subject will be more on topic there.

My youngest DD has generalized seizures, which are not well controlled with medication. She's had seizures since she was about 8 (she's 24 now) and has never had good control. Because she had a very bad reaction to one medication and has cerebral palsy, it has been hard to find a medication that prevents the seizures while still allowing her to function.

 

[my*2*angels]

Thank you! I thought I was posting in the right place, but I guess not! LOL

So sorry to hear about your daughter. We are also having no control over seizures but experiencing all of the side effects of different meds. The side effects are awful! I agree that finding a med that works without side effects seems impossible!

 

[mdvlprof]

DS-20 seizures are not totally under control, just mostly. One every 2 months. Takes a whole cocktail of meds, two are for seizures. The worst side effect, for us, is the loopy-ness. Since he uses eye-gaze computer to communicate, being loopy really can affect his ability to communicate.

 

[kstugan]

My almost 10 yr old son has had complex partials since he was about 4. They have been controlled for about the last 4 years. He is on Trileptal (oxcarbatine) for seizures. He is also on Zonegran for migraines which is also a seizure med. He has Asperger's and anxiety from his Asperger's that cause the migraines and allergies. His 7 yr old brother has absence seizures and is also on Trileptal and Zonegran. He still has breakthroughs every few months, but has several other medical complications and medications that can cause them.
I have found that a really good neurologist is vital. If you do not know of one in your area, I would look for a local yahoo group, bulletin board or support group and ask for recommendations. I have found the best doctors from other parents.
If you have any specific questions, please let me know. I know how scary complex partial seizures can be. The first one I actually saw really freaked me out. We think he actually was seizing for about a year to year and a half before he was diagnosed, we just thought he was having nightmares.

 

[my*2*angels]

So both of your boys are having them? That is something I have been worried about, as I also have a 3yo daughter. We tried Trileptal, but it was causing her to have about 50 seizures a day and she was so out of it. She was a walking zombie! I am glad to hear that you are being able to control your kids seizures. That is something I am hoping for!!! I am glad to say that we are really happy with our neuro! But my pediatrician is FANTASTIC and she recommended the neuro that we are using, so all is well there.

May I ask what causes your 7yo's breakthrough's? My dd is also on several other meds for her allergies, asthma and eczema. Just curious about if those can effect things.

 

[ireland_nicole]

I don't know if this is helpful for you, but DD is on Trilyptal for hers- they tried Depakote, but it made her really, really violently ill. With the trilyptal, I actually feel like a bad mom sometimes because unless she's sick or overheated, she isn't seizing except sometimes at night (which I don't really notice because, well, I'm sleeping too.) We keep a monitor in her room, just in case, and pillows on the floor for when she falls out (we used to use a bed rail but she really hated it, and it freaked her out when she would wake up in the middle of the night). Anyway, the Doc will ask if she's having seizures, I'll say not really and then of course the EEG says she is; but at least they don't seem to be affecting her much right now. I have been told that as she goes through puberty her seizures could change as well, but so far she's doing ok. FWIW, her seizures are because of a sclerosis in the right temporal lobe. Her brother has some special needs, but does not have a seizure disorder (although Caitie didn't have her first seizure until she was 8)

 

[my*2*angels]

If you don't mind me asking, what type of seizures does your daughter have? I am wondering if different meds are used for the different types of seizures? I just really wish we could find something that worked!

 

[Chicogirl]

There are different meds for different seizures. Mostly it is a test and go deal to find the right one. My daughter has complex and absent seizures. was dx at 4. She started with depakote. For me it was the hell drug. She looked comotoise. It was horrible. Now she takes Zarontin. It is in liquid form, and it works very well. She went from having an avarage of 200 seizures an hr to maybe a couple a day, and they only last a few seconds and dont effect her at all. And most days she has no at all. It depends on heat (you have to watch out for heat) or how tired she is. Hope this helps

 

[my*2*angels]

Thanks! Your dd was def having ALOT! We have some days worse than others, and heat and being tired def make them worse! Monday for some reason she was having quite a bit, probably around 50/hour. Some days are better that others! My dd was put on Zarontin yesterday, in addition to the Keppra she is already on, so I hope it works well for us, too! I should say that my dd also has absence seizures as well. At first, I thought that was all she was having, until we actually had an EEg, MRI and went to see the neuro. I am just praying that we find the right meds to help her!