Re: Re: Wecome to new member

[Guest guest]

Hi Penny,

My daughter is 8 months old and she also has PMG, subependymal gray matter

heterotopia, mega cisterna magna, band heterotopia, and atrophic corpus

collosum. My husband and I were reading ur email and he was curious to know

what kind of symptoms is your 14 yo having. We are seeing signs of delay in our

daughter but we r curious as to how others with the same conditions are

developing. When did she start having seizures? She hasn't started seizing yet

but the Neurologist said she will eventually start having them.

Mika, , and Aislinn

Louisiana

Penny Stuehler wrote:

Thanks Kim for getting me up and running so quick. My Step Daughter

is 14 years old (well will be in 2 weeks) and was diagnoised with PMG

last December! She was ever only given 1 MRI when she was 8 months

old which showed no abnormalities and, for some reason, all the

Neuros her parent took her to never saw fit to request another one.

There is more than PMG; there is gray matter heterotopia and a

prominent cisterna manga. She has Lennex gastaut syndrome,

orthopedic problems with her feet (very flat footed) and a 30% spine

curviture.

We don't know what this all means but her father is sending her MRI

and CAT scan reports to Dobyns. We are fortunate to live in a

Chicago suburb so we hope that he will be interested in seeing her.

We are looking for a diagnosis and prognosis at this point. It's

been rather devastating to find out this is PMG. We thought we were

dealing with Lennox gastaut without any brain malformations, which

meant there was hope of partial or even full recovery with seizure

control. Her current neuro said that a Hemispherectomy was out of

the question because both sides are bad. We hope to find out more

later this month but figure Dobyns will be able to provide the most

information.

Everyone here sounds like they have young children, are there others

with teens here?

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[Guest guest]

HI,

Thank you so much for helping me to understand. My daughter has started

putting her head down we aren't sure though if she is having seizures or not

though. We are so green to any of this and we are trying desperately to find

out everything we can. I feel the doctor has not explained to us thoroughly

enough what can happpen with these conditions. Your daughter sounds like she is

a gift from God, I think they all are. We are not sure yet on her mentality.

ly, that is not gonna stop us from loving her, she is a beautiful child.

I'm going to try to figure out how to put her picture on here so everyone can

see her. But, thank you once again for informing me on her condition. Our

daughter is 8 1/2 months old her communication is on a 3 month old level and her

social and emotional is on 4 months.

Mika and Aislinn

Louisiana

centworthy wrote:

Mika,

My understanding is that she started with Infantile Spasms at 6

months (head drops). This progressed to West Syndrome and evolved

into lennox gastaut(multiple seizure types that are uncontrollable

and associated with a slow spike pattern). By about age 9 years she

began having what are known as Sound Seizures (atonic drops at loud

sudden noises) these eventually were controlled with medication.

Currently, she is very delayed and would be classified as severely

mentally retarded.

However, she is very loving, kisses and hugs constantly. Loves

looking at books, brushing and petting our cats and loves listening

to familiar music and tries to sing along (often hums with an

occasional word or 2). She is not verbal other than a few words.

She does tell us " Potty " when she has to go but sometimes she

doesn't tell us (suspect that's when absence seizures are happening

and she's " out of it " ). Personality wise, on a scale of 1-10, she

definately rates a 10 for sweetness, kindness and cuteness (if

anyone sneezes, this non-verbal child will proclaim " Bless you " ).

What little she does say, is just beautiful.

Her neuro has started weaning her from meds (she's on 3 kinds;

Klonopin, Lamictal and depakote). Klonopin is the first to go with

no notable side affects thus far and she's nearly off that one. The

reason for weaning is so he can distinguish what issues are due to

the condition and what are being cause by drugs. She has seemed to

improve a lot over the past year, not sure it that's because she's

having less absence seizures or the pull back of drugs or she's just

out growing both (I've read where absence seizures are often out

grown by adolesence but turn into Myclonic jerks which do seem to

have increased).

We still have no prognosis, she does seem to have some orthopedic

issues that still need to be addressed with her feet and back, again

this may also be agravated by her weight. She is only 4 foot 8 and

weighs 125 lbs. Her eating habits don't seem to explain this weight

and the neuro thinks it's the drugs causing it. But again, she is

under height for her age which he thinks is related to whatever this

turns out to be.

Her dad is sending all her medical history to Dr. Dobyns. We hope

to get some answers there. I would suggest, since you are not in

the Chicago area, that you send same to him. My understanding is he

has a funded research project and you would not be charged for him

to take a look at her information and may be eligible for further

testing without charge.

Make sure you get regular MRI's and CT scans done to determine

progression. We are just starting this now because her earlier

neuros didn't do regular testing. Her 8 month MRI was the only one

she had gotten until last December and it showed no malformations

(of course MRI's are better now than they were then and technology

may account for the " clear " MRI) We hope to find out if this is or,

hopefully is not, a progressive thing by comparing her new baseline

with future tests. We also hope Dr. Dobyns will recommend genetic

testing which, I'm told, is the best way to determine what this is

which will aid in diagnosis and appropriate treatments.

Even though my Step Daughter is 14, I'm new to this as well. All I

can say, from my own parenting experience (I have a 19 and 17 year

old of my own) is seek out as much information as you can, look for

the very best doctors, trust your own instincts and keep your faith

in God and accept is Grace.

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