Our Journey


I figured I would tell our story, not because I want to bore the pants off of you, but because I know there are others on parts of the same path we’ve traveled.

My daughter Rachel is 20 now. She was diagnosed with Infantile Spasms, a catastrophic form of epilepsy, at 19 months of age. We don’t know how long she had them before that, because, quite frankly, the pediatrician sucked. But, moving on, Rachel had these seizures every day for four long years. She slipped into Lennox-Gastaut syndrome and continued to seize, less frequently, until she was seven. I still shudder thinking about this time, the fear added to everything else that was going on in our lives, including having to raise two other children (she is my middle child).

During this time we got her into early intervention and the Easter Seals school. We also took her to Canada for an Infantile Spasms specialist, a PET scan, and medicine we couldn’t get here yet (Vigabatrin). The Canadian doctor told us about the link between Infantile Spasms and Autism, and she was diagnosed before she was three. We also were trying several drugs, to no avail, ACTH, and the Ketogenic Diet for 14 months. It did not stop the seizures, but it really woke up her senses, we realized how much she wasn’t processing until the diet. She laughed for the first time watching Sesame Street, and I don’t think she had felt her feet before that!

Rachel didn’t say her first word until she was 5. She didn’t put two together until she was 7, when the seizures finally stopped. I changed diapers until she was 6 1/2, that’s how long it took to potty train her. She’s always been in an all-special needs school or classroom, and still is today. The seizures stayed away for 9 years, then she had one new tonic-clonic and had to be put on a new medicine (Zonagran). It worked until last year, when they broke through again with a vengeance. Last year was a little scary, and we had her in the hospital for a week. She was having tonic-clonic and absence seizures every week, the latter being even more dangerous as she would fall over wherever she was standing. She’s on a new med and under control at last, and we’ll just deal with the next crisis when it arises.

I have left things out here, things that we have been through as a family, a married couple, as parents. I’ve left out the psychiatrists and behaviors and other meds that go along with having a child with autism as well as with epilepsy. But I believe one of the good things that come out of having to go through something like this is eventually being able to be there for others who are starting their journey. I understand.