Doose Syndrome

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We have just discovered DD has Doose Syndrome. Does anyone else have experience of their DC having this type of epilepsy? -if so has anyone got a advice or can point me in the right direction?

Also, we would like to get some kind of medical insurance that will cover DH time off work, therapies for DD etc etc - not sure if such a thing exists tbh, just wishful thinking maybe.

Thankyou in advance.

Anyone??

sorry, but I'll bump in hope someone will

Thankyou

no experience here either with this form of epilepsy "just" absence seizures - have you tried putting a thread in health as well?

Wondering if you might still be here? My niece has just been diagnosed. I know this is a very, very old thread

This is a really old thread but I thought I would comment on it because when my ds was diagnosed with epilepsy with an EEG that looked like doose syndrome I really wanted to read some real experiences (and with a good ending) but found it so hard to find them. My son was 6 when he had a seizure which caused me to call an ambulance. He was in hospital for a few days before he was actually taken for an EEG which showed he was in non-convulsive status.
We had known that he was struggling a bit and in the 6-8 months before diagnosis he seemed withdrawn or impulsive, was struggling at school and had started compulsively chewing. We had taken him to the GP and had a pediatric referral but they didn't find anything and we had no idea that he was having a range of seizures (absence and myoclonic seizures) every day. It was only when he had a more noticeable classic seizure that it became clear something else was going on.
He was diagnosed with doose syndrome, given emergency medication and put on a pretty massive dose of epilim.
We were lucky that the epilim worked almost immediately and it was like he returned to himself, having been spacey and lost.
We were additionally lucky in that the epilim continued to work which j understand isn't always the case with doose syndrome.
It was pretty terrifying for a few months as we waited to see if he would be stable and I had to stop googling things because it was always so scary.
We got used to the medication and the safety measures and after a year or so I started to calm down - the uncertainty was really difficult to manage at first.
After nearly 3 years of being stable and seizure free, out consultant advised a very slow medication reduction and my ds is are now nearly a year free of the medication.
He's just turned 10, is doing well at school and seems happy.
Epilepsy is such a scary diagnosis and is often rubbish for children and parents alike. It was a difficult experience for the whole family, especially my son. All that said, you can start to live with it and you might also have an ok outcome.
If you are googling like I was a few years ago, I hope our experience at least shows that there can be a good outcome, even if your child's prognosis is uncertain.