Hi
Well, it is still sinking in.
He started having seizures last August, his first one lasted about a minute, he slumped to his left side, lost all muscle tone stared into mid space, eventually came out of it and wet himself.
He had 3 of these in 10 days, with each time resulting in a trip to A&E to be told it was his temp(but there was never any sign of virus or temp) and he would grow out of these febrile convulsions, anyhow health visitor felt we were being fobbed off so helped us get a referral.
He was seizure free for about 4 weeks, then bang it all started again, these seizures came out of nowhere but I started to notice a change in ds's behaviour aggression, hyperactivity and a general tiredness.
This may seem quite strange but he can be hyperactive for say half an hour then get an over whelming tiredness like burnout, this is when he is more likely to have seizures.
Both eeg came back normal, sleep deprived normal, but consultant seems to think that this does not mean anything.
MRI showed FCD, which was explained to me that this congenial condition happened in my first 3 months of preg, and the consultant says it is the cause of Ds's seizures and surgery may be an option later in life or if the seizures become worse or medication ceases to work.All I can actually say is that after leaving the hospital yesterday I was not given a prognosis, yes I know he was born with it etc but it was was more of a "just wait and see approach" they also checked his hand a feet to see if one was bigger than the other.
I feel like I have been hit with a huge hammer.
He is on tegretol atm and has been seizure free for 7 weeks but has staring spells alot.
Please has anyone experienced this condition or knows about it, thx for reading