Kim - posted on 07/06/2009 ( 5 moms have responded )
Sometimes it helps just to share your story...sometimes it helps the story tellers and sometimes it helps out others out there reading your story, and it sometimes helps lead them to some answers. In any event, it just helps to know you are not alone and that others share your same experiences each and every day.
My son Logan was diagnosed with epilepsy at 15 months old when he had his first 2 seizures in less than 24 hours. They were convulsive seizures, just on his right side. Over the next few months, during illnesses, he had a few more seizures. Then he stopped having the convulsive seizures for around 5 months, but in the that time, he started having about 50 absence seizures a day (staring, eyebrows moving quickly up and down). By his 2nd birthday, he was back to having convulsive, full body seizures about once a month, along with his 50 absence seizures a day. Over the next several months, we tried different medications, none that worked, and he started preschool for kids with special needs just after his 3rd birthday. Logan was showing signs of a severe speech and learning delay. Around this time, we tried a new medication called Zarontin and that controlled (and still does!) his absence seizures! At his 3 and a half year old mark, Logan was called in by his neurology team to have some blood work done. We had been complaining for months that he didn't "just" have "epilepsy" -- there was more to it. He had ADD-like and autistic-like behaviours, not to mention behaviour problems, and we just weren't sure if it was medication related or seizure activity making him this way. Anyways, then the neuorologist called in my husband and I for blood work. They came back earlier this year with a new diagnosis. Logan has a rare severe form of epilepsy called Dravet's Syndrome. It is caused by a gene mutation (SCN1A) that did not come from neither his dad's nor my side of the family so it must have happened spontatneously after conception they believe. Luck of the draw. There are less than 500 documented cases world-wide from what we have been told. And all of these "symptoms" we had been complaining of...the ADD, autism, behaviour issues, etc were now explained, as this can be all a part of having Dravet's Syndrome. So, Logan will celebrate his 4th birthday in a couple of weeks, on July 20th, and we are thankful each and every day that we have him with us. Several of these children are dying for various reasons (bad prolonged seizures, drowning, SUDEP, etc) so each day I try to just hang on tight to Logan and be thankful that I still have him in my life. I also have a 2 year old daughter who is my shining star and who is "typically developing" so far, from what we can tell! It's nice to have a "normal" parenting experience with one of my children...I am grateful for that.
Anyways, it sometimes helps to just share...
Thanks for listening!