Member details for corsa55sd
Last updated: 07 May 2009
To save room on the page we use the term disabled to indicate those with disabilities, special need or a medical condition.
Forums
Click here to see if corsa55sd has posted on the forums
corsa55sd
Family type:
Siblings:
2
Disabled siblings:
0
Brief summary: Our 3 year old daughter has dravets syndrome (SMEI) and has the SCN1A gene She goes into status with each seizure Takes Epilim, Topamax, Stiripentol Would like to hear from other parents with child who has similar!
Location: Londonderry
Languages spoken: english
Member since: 07 May 2009
Full story:
Our 3 year old daughter has dravets syndrome (SMEI) and has the SCN1A gene. She goes into status with each seizure. She is given 0.5ml buccal medazalam but it doesnt make any difference. She needs to go to hospital each time. She takes Epilim, Topamax & Stiripentol. Her seizures average around 1+hr with medical treatment including diazepam, lorazepam, paraldehyde & phenytoin. Her seizures vary: sometimes she has one per week but can then go a month or more until the next one. To date there is little developmental delay and she is really active! We would like to hear from other parents with child who has Dravets syndrome or the SCN1A gene!
What to do now
- If you want to contact "corsa55sd" you will need to be a gold member of this site. To contact corsa55sd click here.
- If you would like to list your story on this site, so others can contact you, then you can sign up for Silver membership here. Silver membership is free of charge but you cannot start contact with someone, only reply to them.
- If you would like to find other people, go to our search page.
- To find out more about this service, membership and who Contact a Family is, go to our FAQ section.
|
|
|
|
