Question Title: Improvement with Neurontin for child with Infantile Myoclonic Epilepsy

Our foster child Grant started having seizures 36 hours after birth.
He was diagnosed as having Infantile Myoclonic Epilipsy with
developmental delay. He is now in a wheel chair, cannot speak
and is totally dependent upon us for his needs.

We started caring for him when he was 12 months old. He is now 10 years old.

When we started caring for him he was having about 13 bad seizures a day
and hundreds of severe myoclonic jerks which made him cry.
He was on many anti-convulscent drugs which had no effect
on controlling his seizures. He was on a very poweful skeletal muscle
relaxant normally given to children over 13 years of age
(to control his severe arching) but this had no effect either.

About 6 years ago, we for a period of about 2 years trialled him on many of
the latest anti-convulscent medications but to no avail. As nothing worked,
he was taken off all medication.

Over the last 5 years his seizure activitiy has sometimes become
difficult to control, resulting in us rushing him to hospital by ambulance
because he is in status seizures. This has happened about 17 times now.

Three weeks ago his 'normal' (normal for him) daily seizure
activity would be

1 bad seizure about once every four days requiring rectal valium . (This is
the only medication we can use to stop his bad seizures)

During the day he would have countless seizure activity such as

eye flutters
head forcibly turning to the left
head forcibly turning to the right
small myoclonic jerk with hands extended
drop seizure followed by eyes rolling up and not breathing
for about 5-10 seconds
giggly seizures
grimacing (clenched teath) with arms forward and shaking
absences
eye flutters followed by head turning left
(this would always happen if we turned a light on or off!!)

Each of the above activities would last for less than a minute.

Three weeks ago he was rushed to hospital in status. He was also having
difficulty in breathing suggesting obstructive apnaea.

He had a sleep study and the results showed that he did not have obstructive apnaea which is a great relief as there was the possibility that he might have had to have his tonsils and adenoids out which for him would have been a major operation.

He spent a whole week in hospital and then was discharged.
One drug amongst many others that was given him to try and stop the seizures was Rivitral which had a very negative effect, by making the seizure more pronounced!

Upon discharge Grant was put on 300mg 3 times daily
capsules Gabapentin/Neurontin. He is not on anything else.

We were instructed that we make sure that we increase his fluid
intake to 1200 mls per day. (He doesn't drink fluids well, although he
is a good eater).

****** Now the GOOD NEWS ******

Grant was released rom hospital 2 Fridays ago (18 days ago)

Since then he has not had 1 bad seizure !!!!!!
Since then we have only observed about 5 little seizure activities in total !!!

Needless to say my wife and I are absolutely thrilled.
It seems as though Neurontin is a miracle drug for Grant!

Now for some serious questions for you to answer please.

1. Are there any negative side effects for Neurontin (ie liver damage etc)?
2. Do you think that this remarkable improvement we have seen will last?
3. Is Neurontin a drug that can be taken over a long period (years)?
4. Will the effects of Neurontin weaken over time, requiring the dosage
to be increased?

Many thanks for your assistance doctor.

I hope that you and your colleagues have a very peaceful and Holy Christmas.

PS. I have set up a www page for Grant which contains many photo's of him
from age 12 months to today. The www address is

www.ozemail.com.au/~paulcjc/

Please visit if you have time.

Dear Mr. Copeland:

First, I admire people like yourself, who will adopt a child let alone a child with a physical challenge. My hat is off to you and your wife, my God bless you many fold. Actually we see many children with infantile spasms, and those who continue on with Lennox-Gastaut syndrome. Most of which do poorly, as you imagine with your experience. We have never found that neurontin, as monotherapy had much effect. But, if your son is having such a wonderful effect then GREAT. Just to warn you, there is something called a honeymoon effect, where when a new antiepileptic medication is started that one see an effect. I truely hope that this is not the case with your child. For your othere questions, neurontin has few side effects. The most encountered is drowsiness. It is cleared by the kidneys unmetabolized, so the liver does not play a part in its metabolism and therefore there are few interactions. It is not bound by serum proteins, so there is few interactions with other medications. It is what all
medications would like to be if it was possible. The dose your child on is still rather small. We have used neurontin up to 4,000 mg a day to control seizure activity. I wish you the best. Merry Christmas and the best of holiday seasons.

Sincerely,

CCF Neuro[P] MD, RPS