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PhilB
New Member


Date Joined Feb 2008
Total Posts : 4
   Posted 2/9/2008 11:44 PM (GMT -7)   
My 3 YO grandson has started having epileptic seizures since Christmas, 10 or 12 a day , now partially controlled by medication, but reading the literature I am very worried that it is Lennox Gastaut syndrome. He has had an EEG and an MRI, the latter of which showed an abnormality - it seems an area of the brain that has not developed fully. He is a very bright kid, and has also shown good hand to eye co ordination - up until now.
He has another appointment in just over a week's time and in the meantime is on a combination of medication.
 
My question is this - if LG syndrome is confirmed (and it all seems to fit his symptoms as far as I can see) is surgery best sooner rather than later a sensible option to limit any damage either further seizures or continued side effects from medication might have. He already broke his collar bone in a fall, but i am more concerned with potential loss of skills and mental abilities that seem to be a feature of this syndrome.
 
Of course I know that i am rushing ahead here - we await the confirmed diagnosis with trepidation - but any advice would be welcomed

djdaz_1985
Veteran Member


Date Joined Jan 2006
Total Posts : 2408
   Posted 2/16/2008 5:34 AM (GMT -7)   

Hi there,

I am sorry to hear about your grandson. It is possible that it could be LG but try not to let that blind your judgement. Do you know which area of the brain is under-developed? Brain surgery is always a risky option and should always be considered carefully. Lets see what the doctor says next week.

Darren


Everyone has a guardian angel. They help pick you up when you fall, comfort you through your times of need and help you appreciate the times when things are going well.
 
"A gold medal is a wonderful thing. But if your not enough without it, you will never be enough with it." - Irvine Blitzer (John Candy) in Cool Runnings
 
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PhilB
New Member


Date Joined Feb 2008
Total Posts : 4
   Posted 3/2/2008 6:05 PM (GMT -7)   
Thank you for your support and kind words. We still have no firm diagnosis. He is on sodium valproate and carbamazepine and they seemed for a while to be working to control the seizures. Until today he had not had a seizure for five days.  Then today he had two - the first of which included him wetting himself -  embarrassing for him in front of other kids.
 
I would like to buy a simple story book for him - so we can read it together and help him understand (as far as a 3 year old can) what is happening - Can anyone recommend a book? Many of them seem to be aimed at an older child.

djdaz_1985
Veteran Member


Date Joined Jan 2006
Total Posts : 2408
   Posted 3/3/2008 2:33 AM (GMT -7)   
Im sorry I cant help with this one. I am not aware of books aimed at people that young. Have you considered making your own? It wouldnt have to be very long and the internet is a mine of useful images.

Everyone has a guardian angel. They help pick you up when you fall, comfort you through your times of need and help you appreciate the times when things are going well.
 
"A gold medal is a wonderful thing. But if your not enough without it, you will never be enough with it." - Irvine Blitzer (John Candy) in Cool Runnings
 
Moderator - Epilepsy Forum
Co-Moderator - Depression Forum
 
Help support the forums so we can support you:  http://www.healingwell.com/donate
 

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