crazylazydaisy...............!

[lourobert]

HI, thought id just start a new thread....! The MRI did not show any underlying cause for seizures. We have since found out that my son has WIlliams syndrome althoguh this syndrome is not usually associated with seizures. Seizures could be a totally different thing in addition to the Williams or he may have extra chromosome deletion in Williams region which accounts for seizures....does that make sense??

Ive heard that if your child had a 'normal' MRI scan at a young age that abormaliies can show once the brain has matured and at around the age of 2 any abnormalities will show up on MRI. Im not sure that we'll go for another....I just dont want to be told any further dx'x and were doing ok as we are...!!!

bumping for CLD if she hasnt already seen this.

RIven- I probably should have gone on to say that my son has Infantile spasms- which is a severe type of epilepsy which damages progression and development, he is much more severly affected than the 'average' child who has Williams.Children with IS and WS are only a handful worldwide so Im told.

Ive found one other child in the UK who had IS and has Williams.

Always wanting to har from more if there are any.............!

Hi,

Yes, I am on the yahoo group for IS and the one for WS. Actually dont think I would be sane if it wasnt for the IS support group!!!

My son is currently on vigabatrin and epilim and has been seizure free for 4 months now (touch wood)his last ECG which was 2 weeks ago showed that the hypsarrythmia had now gone- YIPEE, so I just he doesnt have IS anymore......?

How lopng wass your daughter free before coming off the meds- our neuro reckons about a year for Louis would be about right?

DO you live in Bristol? Ive heard that that is an IS hotspot??

How is your daughter now RIven? Did she go on to develop other types of seizures?