Dravet Syndrome Stories From Those Who Know

River River's Story

River had his first seizure when he was six months old, it continued for about 45 minutes. This was the beginning of a very scary and difficult life for our family. Approximately a month later River had another seizure, it was the same day he received his DTaP vaccine. Seizures continued to occur averaging about once a month. Before the age of one, River had been through seven seizures; the shortest was twelve minutes and his longest 2 hours and 40 minutes. He had 4 seizures which lasted over an hour despite emergency medication (Diastat) being given at home, and getting to the hospital within twenty minutes.

I don't have the words to describe the feelings of watching the ER doctors pump drug after drug into his little body without resolution. Before this could happen they had to get an IV into his tiny vein, which always took several attempts by different people. After the seizure would finally stop there was still more to go through. During the next few days in the hospital we would have to hold him trying to comfort him while the doctors and nurses would attempt blood draws, give him spinal taps, X-rays, CT scans, put EEG leads on, or go under anesthesia for an MRI. After River's longer seizures he would lose the few words he had learned, and it would take a few months to catch up to where he had been with his development. We were so frightened that River would have permanent brain damage, or worse from these seizures. Before they began he was developing normally, everything seemed fine.

River has finally gained excellent seizure control considering his diagnosis of Dravet syndrome. He hasn't had a convulsive seizure since September of 2008. In September he only had a vocabulary of 3 words, today (six months later) he has at least 300. He seems to be very close to where he should be developmentally! We attribute his lack of seizures to three things: pharmaceuticals, ketogenic diet, and his caring and attentive neurologist. His neurologist, Dr. Harini, has been a godsend to the entire family, both in caring for our son and comforting us. River has been on the ketogenic diet for one year, he also takes Topamax and Cyproheptadine. This combination seems to be working wonders! The diet is very strict, limiting carbohydrates and protein; eighty percent of River's caloric intake is fat. Topamax seemed to help increase the duration between his seizures and it works well in conjunction with the diet. Cyproheptadine was added to help with symptoms of dysautonomia and to try to increase his appetite (River is mainly tube fed because of lack of appetite).

We are so thrilled and thankful for River's great progress developmentally and current seizure control! Still, we are afraid that this may all be taken from us by this horrible affliction. Around the time River is four we will be able to escape this purgatory we live, by then his prognosis should be established. It is difficult to focus on the present and not worry what tomorrow may bring. Every day we have with River is a most precious gift; he is such a happy, sweet, and affectionate little boy. We love him so much!

You can contact River's mum Sabrina via: sabrinamountford@aol.com

23rd April 2009. Submitted by Sabrina.