Emergence

I think that it is rather interesting that my emergence from my "funk" began with a series of unhappy events. In the spring of 2006, I began to notice that Grace would stop periodically and look down. She almost looked tired as if she were dozing off. My mother in law said that she noticed them too and always thought Grace was tired when it happened. One night as I was laying by Grace and putting her to bed, I had a sudden realization. These were very likely to be seizures. My heart jumped up into my throat. I thought we were free and clear from seizures by now. It had been more than two years since her infantile spasms seizures stopped. I got onto the internet and looked up absence seizures. I was relieved when they described these type of seizures as basically harmless- just a bit of a nuisance. I called the neurologist's office and let them know that I suspected Grace was having these seizures. They scheduled Grace for an eeg. He confirmed my suspicions, but when I asked if they were harmless, he told me that in a normally developing child that would more likely be the case. With Grace, any type of seizures could cause her development to slow down or regress. I was sad, but not as devastated as before, mostly because I felt numb to that emotion anymore. I also knew that these were not as damaging as the infantile spasms.

The neuro put Grace on a seizure med called Keppra, and they stopped very quickly. I was relieved. It was kind of funny because I had just recently commented to family that I was so grateful that I didn't have to worry about seizures or giving seizure meds anymore. I began to look for more resources on the internet finally. I joined an internet group of parents of children with infantile spasms. It was so nice to chat with parents whose kids had been through what Grace did. I wondered why I waited so long to do it. It proved to be very healing and therapeutic.

About three months later, however, Grace began having the seizures again. After two or three med increases, they still did not stop. The neuro scheduled her for a 24 hour video eeg. It was our first overnight stay in a hospital- and so far our only one. (knock on wood) These eegs are different from the one hour ones. They get out a big vacuum sounding air machine and basically glue the connections onto the patient's head with a very nasty smelling adhesive. It was loud, and Grace hated it. Once she got settled though, we sat on her bed and played with toys and books and watched tv. We had to stay in view of the camera at all times though, with only short potty breaks allowed. We had a four year old roommate who made constant visits to our bed to play with Grace. It was nice to visit with her mom, but I would have preferred a private room. I hear that they have a new epilepsy dept. there with remodeled private rooms now. I hope we don't have to go back to visit it though. Getting the glue out of her hair the next morning was almost impossible, and we were picking it out of her thick hair for a few days.

The neuro turned us completely over to the care of an epileptologist. I hated to lose him, he was a great doctor. Our new doctor read the eeg and made an interesting comment in the chart. He said that her eeg looked like a typical eeg of a child with Angelman Syndrome and that we should have Grace tested for it. Well when the nurse told me this, I immediately went online to research it. When I read the diagnostic criteria for Angelman, I was floored by how much it sounded like Grace. Seizures, small head size, arm flapping, balance disorder, lack of speech, happy disposition, frequent laughter, drooling, mouthing behaviors etc... I made a list of about 50 characteristics and she matched almost all of them. I was convinced that she had AS. I felt like I belonged somewhere and couldn't wait to get her tested.

I had an appt with the epileptologist that read her eeg and coincidentally he was the one assigned to be our new neuro. He remembered her eeg and agreed that we should get her tested. Angelman Syndrome is a genetic disorder where the 15th chromosome is affected. The most common form is where there is a deletion or piece missing on the 15th chromosome. There are tests for about four other mutations on the gene as well. All are different variations of Angelmans. I began to look for support groups for parents of kids with AS. I found a forum and a listserv. I stayed on the listserv and made many good acquaintances and friends there. They were so welcoming and encouraged me to pursue the diagnostic tests for AS.

We had Grace tested for a few of the forms of AS and unfortunately they all came back negative. We also had her tested for Rhett syndrome which is in a similar family as Angelman and it also came back negative. Despite feeling a bit unsatisfied, I wasn't sad because I had found a group of parents with kids just like Grace. I eventually left the group for kids with IS as Grace was so far removed from that experience and settled into the AS community full time. I am still on the listserv and have met many families and received so much help and support from them. Joining this group has been the single most helpful thing I have ever done to help me and Grace.

I have gotten almost every helpful piece of equipment for Grace that we own from a link or suggestion from this group. I have made good friends. We were able to meet a cute family who have an adopted son with AS who is only a year younger than Grace. We get together rather regularly. Grace is cute with him and they like to see each other.

I need to end this for now, but next time....acceptance.