seizure

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Hi all from OZ.

Oh well!!!!

We were told that Torin had an 80% chance of seisures by teen age and the next

trigger point was 5.

He is nearly 5 and now %^ & $%^^ & ??( & ^% & He now has started seizing.

They started with just loosing balance and leaning sideways or forward just

momentarility. He then keep falling over and making no attempt to stop himself,

either forwards on his face, or backward onto the back of his head.

We realised what was probably happening but were hoping we were wrong. The EEG

was done with 2 turns while it was being done.

How good are specialists %^ & ^%$#$#^ & *. We got a letter in the mail to say he is

seizing, here is a script start giving it. 3 lines no " I am sorry to say " or

" Unfortunately " just a blunt letter. We tried to contact him and the

receptionist was dismissive, " you have the letter get on with it " . No comment as

to whether to stop any of his other stuff or anything.

We realize that to him it is just another kid but to us it is massive. When we

were first told about the PMG, he was if anything cruelly blunt. I suppose there

is no good way to hear news like this but surely a but of human kindness would

not go astray. Surely face to face not with a letter, we know doctors are busy

but!!!!!

I know our little loving man will just cope, as we will. I realise that most of

you have had this for along time, so I am sure you know how we are feeling. The

most difficult thing is how the people at his Deaf school are all being so

loving and worried and in your face. We know that they all well ment but still

thay will all forget hopefully and go back to just treating him as just another

kid.

Thank you for letting me rant.

Grandma Carol, Torin 5 PMG CPhemi, deaf etc but my wonderful loving little

redhead.

>

> I agree that it probably is a partial complex seizure with an altered state of

consciousness. My daughter has many types of seizures (mostly absence, grand

mal, and partial complex). It sounds a lot like her behavior during partial

complex seizures. She'll either sit & stare, " shiver " , or shrug her shoulders

repeatedly. Her face usually turns red. Afterward, she'll look confused, move

slowly, get sleepy, and need to cuddle. (She's 2, by the way.) She's aware &

responsive during the event--just very slow & not happy (unusual for her).

>

> Anyway, she's been having thses for a while. After severe break-through

seizures, I talked with a nurse from neurology & explained the behavior. She

said they were complex partials & that the doctor's notes said she was

susceptible. I just wonder why no one told me earlier.

>

> She also said that if the event lasts more than 5 mins, we need to give her

emergency meds (or take her to the ER, if you don't have any).

>

> Definitely record the event, if you can, and talk to your neurologist.

>

> Best of luck,

>

>