Starting my research a little late, I know! But better late than never! I first learned about Dravet's Syndrome from the director of The Special Childrens School, who was telling me about one of his students who has anywhere from 5 to 150 seizures a day. I was astonished! This disease is also known as Severe Myoclonic Epilepsy in Infancy.
The first thing that I wanted to know was what exactly happened with these seizures and just how many there where.
11 comments:
Anna,
I am the mother of the child Bill Donahue described at the Special Children's School. I do much research in Dravet Syndrome and would like for you to contact me if you will. The information you may have seen - physician's guide for treatment of Dravet syndrome, was written by me.
Thank you,
Michelle Welborn, PharmD
michellewelborn@gmail.com
Dear Anna,
As a parent of a child with Dravet syndrome, I am always happy to hear about a professional who is interested in this syndrome.
I would advise that you join the IDEA League at www.idea-league.org. They offer support and research for families of children with Dravet syndrome and own a large database of families interested in participating in such research.
I am one of the founding members of this organization and would be happy to put you in contact with the current Board of Directors or with the Professional Advisory Board Chair.
Sincerely,
Mary Anne Meskis
mameskis@aol.com
Dear Anna,
I am a mother of a 7year old who was just diagnosed with Dravets Syndrome.I just wanted to Thank You for the information you are sharing with the world!! Thanks for your advocacy of awarness.There is still soo much to learn.Please feel free to contact me anytime my email is sweetjnessa@yahoo.com and i also live in North Carolina.Take Care!
Hello, As anyone an older child with Dravets? I am currently fostering a 12yr old and wondered what effect if any puberty has
Hi Max-
My son is only 8, but I know for some of the older children with Dravet see an increase in seizures during puberty because of hormonal changes.
If you want to join the IDEA League, there is a private online support forum for parents and caregivers of children with Dravet syndrome where you could ask this question and receive responses and suggestions. It is a very active forum and everyone there is happy to share their experiences.
Sincerely,
Mary Anne
Thankyou i will try that. Im finding the increase in the meds always triggers more seizures. It would be great to find out about others who are older.
Please go to www.ICEpilepsy.org for more information
my son is 2 and has a severe fom of dravet. contact me at jaidendavid22@yahoo.com
Please someone look deeper into vacinations.... denovo mutations....I still dont buy it. Proud daddy of 8yr old with dravets
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