Dravet Syndrome Stories From Those Who Know

96% Likely to have Dravet Syndrome

We have a very beautiful little girl who was recently branded as over 96% likely to have dravet's. We are still awaiting our results from the test sent to the uk. We have had social workers and the head specialists talk to us as if the results are already positive, some have been great and some, in our conversations have completely written her off. Our specialist at the local children's hospital is fantastic; he is very straight talking and gives us all the information as he recieves it.

We are very lucky to have such a wonderful 6 year old, who is already slowly coming to terms with her sisters continueing fits; and often calls us and already has our babies head on something soft and lets us know she is having another fit. Our bella is now 8 months old and had her first tonic-clonic after her 4month immunisations they were only 30-1min but she started with 9 that day. Over 2 weeks they were every day, up to 25 in a day. We went home after being told that she could grow out of it and she was on 3 medications. For 3 weeks after she was unsettled and seemed to have forgotten how to move or role over as before. Four days after she had started to catch up with her development she had her 6 month injections and 12 hrs later they started again this time she went through many different types of fits, including holding her breath. No amount of medication woiuld help and she had just short of 200 fits in the 3 weeks we were there. She spent several days in the ICU on an infusion and even this didn't work. We have tried 6 different kinds of drugs and now they have finally put her on the 3 that work best for children with dravet. We are lucky in that the longest fit has only been around the 6 min mark but were told that because of how bad they are and the fact she can have up to 40 in one day, that things really dont look too good.

My poor princess just keeps smiling even though shes had every kind of test going! Even though shes been on so many drugs in such a short space of time and even though she is now showing signs of a possible hyperactive disorder which we were told could be a side effect of Dravets. It's been 3 weeks since her last major fit and all we have seen are about 15 abences since we got home, which is good! We have seen almost every type of fit in such a short space of time and she has picked up her development a bit quicker this time my only hope is that wew can go longer then four and a half weeks before they start again. She has never had a temp or been sick but we have been told that even the slightest temperature or infection will start her off and it will probably get worse with each cluster she has.

I am very new to this and I am looking for all the information and support from people that are both local (Penrith NSW) and from all over Sydney.

Click here to contact Helen.

Submitted 3rd September by Helen.