Seizures

[Guest guest]

Hello!

My son has struggled with seizures the last 8 years (age 5 to 13). His seizures

started after a bad virus (we all got) that he vomited in his sleep for 3 days

he has never been the same. They are focal/petit mal seizures they have never

been fully controlled. I found that food is a big factor. Medicines usually

causes a huge reaction and makes his seizures worse. Last fall with puberty his

seizures started changing and getting worse. We found the Modified Adkins diet

and he went seizure free during the day for the first time in 8 years in April.

The doctor talked me into changing his seizure medicine in May, oh how we wish

we hadn't. With in a month we noticed his cognitive was slowing and he was no

longer responding to you, he couldn't hardly talk if he did it was real slow.

His seizures got horrible at night went into grandmal seizures (we had never had

them before this summer). He started going into night terrors....he told me he

thought he was dying. He know longer could play outside...he was no longer my

13 year old normal son. I started going off topamax...slowly. He ended up

getting admitted on day 3 of coming off topamax...and his seizures were back to

normal. But by this time my son could no longer talk, didn't now his name, pain

in his eyes was horrible..couldn't hardly swallow. They ran tests...everything

came back normal CT/MRI scan...he had a 102 temp...no elevated blood count.

They put him on 3 different antibiotics before they could get the spinal done.

They took 9 ml of fluid off and he still was 5 over. He was in the hospital for

6 days...$39,000...and no answers. When I came home I found another seizure

medicine Lamactil had 40 cases of aseptic meningitis against..after researching

this is what I believe Caleb had. The doctors won't admit to it. It took a

month of therapy PT and speech...processing was severe he was like he was 2

again. The problem after this illness he started having these episodes....he

faints and then goes into a seizure. ( Usually he has 2 episodes late

afternoon/evening) Seizures are light only last 10-15 seconds the problem is

falling. His blood pressure at night is real low 70's he can't get out of bed

until he drinks his high fat shake and then has to sit for 10-15 minutes or if

he doesn't it is all down hill. Has anyone every heard of this??? I can't seem

to find a doctor that is willing to take my sons case on and a neuro doctor just

thinks of the brain. I really feel that there is another medical condition that

is triggering these episodes. We had been seizure free for 5 months (during the

day). The episodes are usually late afternoon (1:45-5 pm) and later evening.

Blood pressure, low blood sugar, or heart?? Also thinking gut problems??? We

need help and just don't know where to turn.

thanks for your suggestions,

Debbi