Living with Seizures

In the articles I have read on the net dealing with seziures in infants or young children I have never seen an article or information on Dravets syndrom, usally misdiagnosed in infants for febrile seizures Dravets syndrom is sever myoclonic seziures at infantcy it follows with develmental delay and the outcome for these children is not good if gone unreconized it can be debiltating.

My daughter Abigail had her first seizure at 8months old. She was hospitalized and sent to riley hospital for children. They told me it was bought on by a fever but sence the seizure was so long they expected her to have eplisey [epilepsy]. Then we were ending up in the hospital all time for polonged seizures. Finally abby had one that about took her life 6 hours seizing off and on she required oxygen and was put into a induced coma. After that I finally told her neurologist some is not right with her abby was developmental behind almost a year and she made no noise and she was having way to many seizures. They agreed they ran a gentics on abby and found a mutation in her scn1a gene, they call me after the results came and told me she was diagnosed with dravets syndrom.

After I had done some reasearch and contacted some famlies who have children with dravets, I found out that many of these children went undiagnosed for several years and many childeren who have eplisey with developmental delay are still going undiagnosed. Not many neurlogist know of this rare but not so rare syndrome anymore. My goal is to get the information out their to families who are seening the same things in their children and need help to find out what is going on.