Re: Unilateral Polymicrogyria

[Guest guest]

Well that is definately scary, but thank you for sharing. Not a day goes by that

I don't think about the " what ifs " with his condition. I am teriffied that

something will happen to him down the road because I know how common seizures

can be, but I hope to never have to deal with that.

Devon

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> > My son, who is now 15 months old, was diagnosed with Unilateral

Polymicrogyria at 7 months old. I am just on here looking for other people who

have the same condition and how they have turned out. My son, thankfully, only

has signs like tightness in the left hand and he doesn't use his left hand/arm

very much and is still not walking because his balance is not what it should be

at this age. His is on his right side of his brain, therefore it affects the

left side of his body. His speech (as far as I can tell) is good, so I am not

too worried about that. I just hope that someday after therapy and working with

him that no one will ever be able to tell. We had genetic testing and after

everything coming back negative they are pretty sure that it was my thyroid that

caused this to happen. I thought that all the things I was feeling was just

because I was pregnant, but it turns out my thyroid was not working. I have only

told a few people about my son because I don't want him to be labeled as " the

kid with PGM " I want people to see him for the happy little boy that I see. His

doctor has said that unless someone has dealt with this, they probably wouldn't

notice. Anyways, I am just looking for information on the outcome of people who

have gone through this. I appreciate any information that can be given for me to

better understand this.

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> > Thanks

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[Guest guest]

Yes, recently. High dose Valium treatment cleared his EEG or at least kept the

spikes isolated to the affected side of the brain. ESES/CSWS usually subsides on

its own at puberty so I'm not sure if it was the Valium or if it burned itself

out.

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> > My son, who is now 15 months

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[Guest guest]

Hi Steve,

My son Larry is 14 and has a very similar story to yours. His seizures hae been

slowing down or I think the spiking has over the last year. He is demonstrating

improved cognitive skills now - he can remember things and is going back into

general education classes. He is on Vimpat and has a VNS. Don't get me wrong

he still has seizures probably 1-3 a week, but they have no where near the

efects on him that they used to. What doctors are you seeing nad is your sone

having the same changes?

Joanne

Re: Unilateral Polymicrogyria

Yes, recently. High dose Valium treatment cleared his EEG or at least kept the

spikes isolated to the affected side of the brain. ESES/CSWS usually subsides on

its own at puberty so I'm not sure if it was the Valium or if it burned itself

out.

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> > My son, who is now 15 months

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[Guest guest]

HI Steve

Hope you and your son are well :-)

Can i ask what valium your son has been on. My daughter Jenna is 5 months old.

She was diagnosed with unilateral PMG at 7 weeks and has Lennox Gaust syndrome.

Her EEG is Bileteral and her seizures affect both sides of her body. Becuase of

this the neurologists suspect she may have other abnormalities. We're playing a

waiting game until her brain gets bigger so she can have another scan.

She was having 30-40 seizures a day (myclonic and spasms). She's now down to

20-30. We've tried phenatoin, phebobarbitone, prednisalone (which worked but

gave her extremly high BP) and vigabartin. We're currently weaning off the vig

and are on Clobazam and starting Topomax. The Top has helped to reduce the

severity of her seizures, i'm hoping as we increase the does it will reduce them

more.

The extra control has really helped her to develop. She has a cortical visual

imapirement and even her responses to light and dark has come on leaps and

bounds. Our next app is in a few weeks and I'm just keen at the moment to push

the neuro's to maybe try a more aggressive approach if the top does't work.

Thanks

Katy :-)

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> > > My son, who is now 15 months

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[Guest guest]

Katy,

At what age was Jenna diagnosed with LGS? The reason why I ask is because an LGS

diagnosis is a combo of a certain EEG pattern along with cognitive regression.

I'm not sure how someone can diagnose LGS in a baby. They may be just going by

the EEG. My son also had seizure activity on both side of his brain and they

said the same thing, that he probably has abnormalities on both sides. He was

also diagnosed with LGS at one point. We had Dr. Dobyns look at his MRI and he

said that his right side was normal. I think the thing you need to look at is if

the epileptiform activity is originating from the affected side and spreading to

the other or if it is truly generalized.

was on 20mg of Valium for 3 weeks. We lowered it to 10mg after the fist

week because he was not tolerating it very well. He hasn't had a seizure since

July of last year.

The drug that really helped was ethosuximide. He was having numerous drop

seizures which the neuro thought was myoclonic. After doing some research I

found out that what he was actually having was a form of atypical absence

seizure called atonic absences. I have also seen them described as negative

myoclonus. These can look like a spasm or myoclonic seizure. I convinced the

neuro to give ethosuximide a try and it stopped the drops almost immediately.

If you mention trying ethosuximide/zarontin to the neuro during your appointment

he will think you are crazy. If Jenna is truly having IS, then ethosuximide is

not going to help. There is a possibility that she is having a form of absence

seizure. I would take that into consideration especially since these absence

seizures are common in unilateral PMG.

I would advise you to stay away from Tegretol and its analogues. It can really

exacerbate things.

I wish you well. It's a tough fight, but don't give up.

Steve

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