My youngest daughter has a condition known as Angelman Syndrome. It affects almost every area of her life, but the one that is the biggest concern for parents is the seizures. Over 90% of children with Angelman Syndrome suffer from seizures, many of the uncontrollable. Some of the children have even died from the severity of their seizures.

Noel has done remarkably well in this area. She had around a dozen febrile seizures from ages 1 to 5, but these are not treated with medications because once you get rid of the fever, you get rid of the seizure. It wasn’t until Noel turned 5 years old that she had her first non-fever related seizure. She was at school having a session with her occupational therapist. She began to shake, her eyes rolled back, and then she passed out.



From the age of 5 to 7 Noel only had a few minor seizures like the one described above. She takes Topamax twice per day, and is now 10 years old. Noel continues to get EEGs about every six months, and has probably had at least 18 of them total. This is no easy task since she thinks the wires are something fun to play with. Two of the hospitals we have used in the past did not allow the use of papoose boards so she had to be wrapped in a sheet with me laying on top of her for 45 minutes to an hour. Not fun!



Fortunately, this past EEG was done at Children’s Hospital of Philadelphia. God bless them, they have papoose boards! No hard work for me and as you can tell from the picture, Noel actually liked it.



It only took one day before I got the results of her EEG. I almost never cry, but this one really got to me. Although she wasn’t having a seizure at the time of the EEG, it showed the patterns that mean seizures could occur at any time. It’s almost like you are waiting for a ticking time bomb to go off.



The important thing is that I kept it together in front of the kids as I conversed with the doctor. Noel wouldn’t have cared if I cried, in fact, it would have made her laugh. My oldest daughter, however, is very sensitive and worries about her sister. I didn’t want to add to that. I think it is necessary for parents to be honest with their kids, but later on after they have had time to digest the news themselves.