Re: & Liz re: Myoclonic (clusters) vs. Infantile Spasms.

[Guest guest]

,

Here is a copy of the diagnosis info on infantile spasms.

Diagnosis

The diagnosis of infantile spasms is made by a

combination of the typical features with a typical EEG

which shows a very disorganized pattern termed

‘hypsarrhythmia’. Infantile spasms, like many other

electroclinical syndromes, have lots of different causes

though a particular cause cannot be identified in each

case.

Most children with infantile spasms will need a number

of tests (EEG, brain scans, blood tests, urine tests and,

sometimes, spinal fluid tests) in order to try to identify

the underlying cause.

Our first neuro told us we had IS before viewing the EEG but wouldn't

remark about the EEG after we had it. Our second neuro did another

EEG,and I will assume it was because after viewing my EEG from the first

he did not see the IS. He said there is no hypps. but we do have

continual short spikes and slow waves and the spikes get larger during

his 'seizure' activity. The spikes he does have don't measure high

enough to be considered seizures, but they mess him up.

We now have 3-4 clusters a day with 2-10 seizures per cluster.

On his good days he'll have 2 singles and 2 clusters with just 2 eye rolls

with a slight head twitch.

I also worry about the LG, but will just keep on keeping on.

Thanks

Dianna

Carpenter wrote:

Hello

everyone, especially & Liz:

Our

first Pediatric Neurologist, Dr. Tiznado- diagnosed our 26-month

old son, AJ., at 14 months (after I videotaped) of having Myoclonic Epilepsy

of Infancy.When I showed the Pediatric

Neurologist the tape of AJ’s seizures, he diagnosed him immediately.I

videotaped AJ right after waking up and he would have clusters of between

10-30 at a time.His right arm comes

up in front of his body at about shoulder level and his head jerks downward

at the same time.This whole process

would take about a split second, keeping in mind he’d have between 10-30

in a row (clusters).This would

happen between 10-20 times per day.

AJ

had a sleep deprived EEG done and there was no mention of the word hysparrthmia

(sp?) at all.What does this word

mean, anyway?

We

went to the second (current) Pediatric Neurologist, Dr. Nespeca when AJ

was 21 months and he reviewed the EEG, videotape and ordered another sleep

deprived EEG and an MRI.Dr. Nespeca

then diagnosed AJ with Infantile Spasms.AJ

was still having clusters, but the name of his diagnosis changed.Dr.

Nespeca finally got AJ’s clusters to stop after trying ACTH (only 1 treatment)

and Topamax, which keeps getting increased every so often.AJ

still has between 10-20 single seizures per day and I am concerned that

if we do not get better control, it could progress to Lynnox-Gastaut Syndrome,

which in my opinion, he already has.After

reading one of Dr. Nespeca’s reports, he mentioned that AJ’s condition

could progress to Lennox-Gastaus Syndrome, so I did some research on the

internet.What I found out is LGS

is a variety of seizure types.AJ

has 4 types of seizures (Myoclonic, Infantile Spasms, Absence and Atonic).Other

characteristics of LGS are:developmental

delay, and behavioral disturbances such as poor social skills and attention-seeking

behavior. Most children with Lennox-Gastaut syndrome experience some degree

of impaired intellectual functioning or information processing (like Sensory

Integration Dysfunction, which AJ also has). The

types of seizures associated with Lennox-Gastaut syndrome are generally

difficult to control due to their resistance to most anti-epileptic drugs.

So far, AJ’s seizures still are not under control and he has all of the

above-mentioned characteristics of LGS.

I

hope I am not scaring you; I just wanted to share our experience and my

concerns with you since one Ped. Neuro. has diagnosed our son with Myoclonic

Epilepsy of Infancy and the other Ped. Neuro. diagnosed AJ with Infantile

Spasms.

AJ

will be admitted to Children’s Hospital of San Diego, California on July

16, 2001 to initiate a “variation of the Ketogenic Diet”.They

use MCT oils and allow more variety of food.Please

keep us in your prayers.

Thanks

for listening and God Bless.

Kim

Carpenter, Mother to AJ & Wife to Al.

"The Ketogenic Diet....a realistic treatment option,

NOT just a last resort!"

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