Thank you

[Guest guest]

Hello, , Kate, , Kim, Joanne, Deanna, , and

everyone,

Thank you very much for your warm welcome and many helpful suggestions!

Let me introduce myself.

My name is Gan and my son was born on 10/15/99. I had a very normal

preganancy. I had to go through two times unsuccessful induced labor one

week after my due day, and was born C-section (he weighed 10

pounds). The only thing that bothered me during the first several days in

the hospital is that is very easy to startle compare with other

babies in the hospitals, and I asked sevearl nurses about it and they told

me 'it is normal, all babies do that'. Since we are new parents, we

believed it.

When was 3 weeks, one day after feeding him, I noticed that he is

fussy and staring at the ceiling and extend his body. And same thing

happened many times afterwards, and is very fussy, did not sleep

long, a lot of times he woke up by his own startle. I went to see the

pediatrican and she thought is colic baby. The only thing I suspect

is that would have his spell almost all his awaken time while colic

baby should be fussy only around certain time of the day, eg. evening. We

tried our best to calm down, the only thng that worked is pacifier.

We were told that he will outgrow when he is 3 months old. and as times

goes on he did seem to be bettter, less fussy. He started to smile at us,

coos a lot. And he learned how to suck his thum.

I sent to family day care when he is 2 and half months old. one

week later, one day I put to sleep after feeding him, and I watched

him shaking his hands for 10 secs. before he fall asleep. I am a little

worried. that same weekend, while is dozing off from feeding he

was shaking unconciously in my arm again for 1 mins. For the next two

weeks we went to emergency a couple of time and every time they told us is

myoclonic jerk. Our Pediatrician evaluted when he is 3 months old

and she told us is a normal baby. Again, they think we had new

parents panic. One thing I noticed it that he forgot how to suck his thum.

The next day contined to have seizures and we went to the emergency

again because he would have 6 seizures in the row within 20 mins. and he

turned blue. they were going to discharge us again until he had his

seizure in front of the doctors. They accept him in Standford Children's

hospital. The neurogist did EEG, MRI, and they sent the MRI to UCSF and we

got diagnosis of PMG (difussed, both left and right front) two weeks ago .

had 3 medicines so far (pheno, tegratal, lamactl), and nothing

worked, both intensity and frequency of his seizures increased. He usually

have his seizures before he doze off or while he is trying to wake up,

lately he is extremely fussy and cried all the time, he will have seizure

when he is very excited.

Recently, developed rash, and doctors asked us to stop Tegratl and

Lamactl, and his seizure is getting worse. We are extremely worried and

helpless. The doctors said his seizure will be difficult to control, and

it broke our hearts to see him go through all the seizures.

Kate and Joanne,

How do you convinced the doctors to use Vigabatrin since it is not FDA

approved here. Is it covered by insurance?

How do you get the medicine?

What kind of PMG will be effectively treated by Vigabatin? any side effect?

Deanna,

Is 's seizure type similar to Kasay?

What type of PMG will be effectively by Depakene? any side effect?

Everyone,

Any suggestions for seizure medicine?

Thanks again for all you support.

Best Regards,

Gan and