Having problems with message search?
In the very darkest days when she was about 4 1/2 she'd have about 3 grand mals in one week. This was at a time when she was on high doses of valproic acid (depakote), zarontin, and was in the process of adding in lamictal. It was disasterous, and she was overmedicated to the point she became ataxic and was so dizzy she couldn't walk or sit. We spent 4 days in Children's....which turned out to be a life-changing experience. You see, the hospital was crowded so we ended up on the oncology floor. After seeing a group of young girls sitting on their beds showing the "newbies" how to make a ball out of the hair that was falling out of their heads from chemotherapy, and baby's being rolled around these lily pad things all hooked up with IV's and various other tragic things, I decided "OK, we can deal with anything!" It really helped to put things into perspective, and gave me the strength to become an advocate for my daughter, an epilepsy mentor (trained by the Epilepsy Foundation of Seattle...just a one day thing, but SO worth it), and I also started up this list to help people connect. Anyway...my daughter is a beautiful young lady who's only had one major seizure (she had one 5 months ago) in about a year. She has a mild learning disability...mainly related to being able to understand what she's reading when she has to "infer" something and she goes to regular classes and gets average grades...though she does have an IEP and takes speech for 20 minutes, two times a week.
Anyway (Brenda) you were asking about Keppra. My daughters been on it for about 2 years. She's also on Zonegran. Both of these drugs are the new generation drugs that don't make them drowsy. This combination seems to work well for her. She doesn't seem to have any side effects from them. Her appetite has decreased, which is ok, since she was a couple of pounds overweight. She's a shrimp for her age...about 6 inches shorter than most girls her age.
Hi;
I completely understand what you are going thru. My daughter was
2 1/2 when she was diagnosed with complex partial epilepsy. It took
me a long time to accept it. She was put on Tegretol suspension 3x a
day. But she kept having seizures so her doctors kept upping the
dose. She then moved on to the chewable tabs. The meds made her very
tired she would take four hour naps. She didn't act like a normal
toddler because of the meds. She is know 3 1/2 and is on Carbotrol
time release. She has been on it for almost 5 mos. and has not had a
seizure since starting it. She still gets sleepy. From what i
understand the seizure meds are very hard on the systems and can make
them feel bad. One med will work for awhile and then not work so on
to the next med. It is very frustrating and hard to watch your child
go thru this. The beginning is rough but it will let up once your
daughters body gets used to the meds. My daughter is seen at
Childrens Hospoital in Seattle. They are great. I love her
neurologist, Dr. Bouldin. He listens to you as the parent and lets
you have a say in there care. If you have and questions please feel
free to email me. I have been through it all. My thoughts and prayers
are with you and your family!!!!!
Take care.
Candice and Emily
--- In Cent_Wa_Epilepsy_Support@yahoogro , "troop1099bre"ups.com
<brebrymeg@...> wrote:
>
> Hello to you all,
>
> Well, I had time to try and imagine why my 10 year old daughter out
of
> the blue had 2 seizure. My thoughts have traveled from the very
> extreme to just a fluke. After an MRI, CT Scan, and EEG we met
with
> the neurologist and My daughter has been diagnosed with epilepsy.
The
> reasoning behind the lable of epilepsy was her abnormal spikes in
the
> EEG being so often and in all areas of the brain, the fact she had
2
> seizures, and the fact her physical neurology test was not 100%.
>
> I just found out that her apointment to get a 2nd opinion from
> Doernbecher was moved up to next month!!! I can just not believe
this
> whole thing… She went from a normal child to now having to be
> watched. I am still in disbelief!!!
>
> We at this point are having a really hard time with medication..
She
> is on Trileptal 3 150mg per day... She takes a nap everyday and
the
> Dr wants her up to 4 pills a day or switch her to Kepra (SP?)
>
> My question is to anyone that can voice their experiances with
> medication? I have heard we may have to try a few to get the
correct
> one? Can anyone share with me any helpful advice?
> Thanks,
> Brenda
>
Offline 
Send Email