Seizures

[easyquilts]

Hello....I am new here, and am searching for some answers and some support.

My grandson, Andrew is sixteen months old....He has begun to have what has been diagnosed as partial seizures ..He simply falls down, and becomes limp....At night he will startle and cry out....a sharp cry....He has had an EEG..The findings should be in Monday (this is Sunday)....and is scheduled for an MRI on Oct. 9th..

Andrew is on an anti-seizure medication...It began working on the third day..He is not at his full dosage as yet....The med seemed to be working, but today he had several more seizures (during the day and tonight)....

We are worried sick..Andrew is the youngest of four wonderful little boys...He is a great little kid..always smiling, and very content....

What do you guys think? Have you had experience with this type of thing?

My daughter...Andrew's Mom...has partial seizures that cause her mind to go somewhere else....Like a fugue, sort of....She is getting and EEG to compare with her son's....Her partial seizures did not begin until a couple of years ago, and we only recently even knew they were seizures ...

Please help...if you can....I am so worried...This little guy means the world to us.

Thanks,
Sandy

[dmom3005]

Dear Sandy

Your grandson is having what sounds like complex seizures. And if the medication is already
working then this is a good thing. I hope that you get some answers tomorrow.

Its a very rough thing to hear. But there are many of us with kids and grandkids with seizures
and epilepsy. So please realize that he is in good company. And so is your daughter.

If you haven't found the epilepsy foundations forums yet, please go look for it.
Its got a parents helping parents forum, and we have lots of grandparents that post all the time
too. So you will get lots of support and responses. It will be fast, and very active.

I'm alld'smomma there.

Donna

[easyquilts]

Hi Donna...Thank you so much for replying....The Dr. is calling Andrew's seizures partial seizures....And, he has been having some in spite of the medication..He went a week without any, then had one or two...He also had one a couple of days later...They are telling my daughter to continue the medication as prescribed for now.

He had an EEG that was normal...Thank God...His MRI is scheduled for this coming Tuesday...I'm very nervous about this, because they have said that he may take up to two hours to come out of the anesthesia....I have some medical background (paramedic), and frankly, that scares me....

We have discovered that my daughter also has partial seizures...Her mind simply goes to another place....Her husband has two cousins with seizure disorders, and my cousin's youngest (twenty) had a few this year....Andrew's paternal grandfather died of a brain tumor....Of course that has been the elephant in the living room....Although the neurologist has said he does not believe a tumor is involved....I won't be easy about that 'till the results of the MRI are known..They said we would know the next day...

This is new territory for us....It's scary, to say the very least....Thankfully, Andrew is doing everything he is supposed to be doing at his age....He seems to be bright, and interested in everything....Of course my daughter has been worried about brain damage....But...The doctor she works for..who is Andrew's primary....says that since she paid attention to what was going on, and got Andrew help right away, she should not worry about that.

Thanks again....

Sandy

[dmom3005]

Sandy
The doctor is right. And even if he is somewhat delayed at a later time. There are lots of things
that can be done now to help. So she has many thing that can help him.

I hope the MRI goes good. And to be sedated and to take a couple of hours to come back around
is very normal. Its something many parents have to deal with.

And I too understand the worry about tumors. I also understand about partial seizures.

I had seizures as a child, and have now issues with central abnormalities of the brain.

Which mainly means I have vertigo and other things that i have to learn to be retaught how
to do things so I don't fall as much.

Donna

[easyquilts]

Hi Donna...Thank you so much for your encouraging post....This is just such a new thing for us....We haven't learned how to deal with it yet...We are still in the information gathering stage....There is so much we need to know....

Thanks again,
Sandy

[beatakowal]

We have similar problem w/our baby girl - 8m
All tests are fine but she keeps having seizures...
Did you get any new info about this condition?
Which drugs were you giving to your grandson?
Do they work?
Thanks a lot
beata

[easyquilts]

Hi Donna...thank you for your post...Just to update you.....My daughter and I took Andrew to the Cleveland Clinic, in Cleveland, Ohio, for a second opinion...The doctors there agreed with the Cincinnati Children's doctors as far as the diagnosis and prognosis goes...But...They agreed with us that the surgery that will actually cure Andrew should be done sooner rather than later...The Cincinnati docs want to sort of wait and see....The Cleveland doctors want to get the lesion out of Andrew's brain, before it grows....And..The Cleveland Clinic has a new...and rare....brain mapping tool that will be a great help.

So...We will be taking Andrew back to Cleveland the last week of January, for three days of ptr-op studies and tests....Wedon't know when the surgery will be, though.

Thinking of your son and grandson having brain surgery is awful, but we know that this surgery will actually cure Andrew...He will no longer have seizures of any kind after the surgery. Praise God....

Thanks again for your post and your encoragement....It's been a rough time, but by the grace of God, we have gotten through it....And will survive the rest...

Sandy