Then one day he had one when my husband was carrying him out to the car, shortly after he woke up. I was walking behind and just saw his right arm starting to shake. When he first started having these we could change his position and startle him out of it, so I took Devyn and got it to stop.
He had either 8 or 9 of these and in that time he was also having screaming fits that would last for about three hours in the evening. My mother also noticed that he seemed to grab for his head when screaming.
During this time he had an xray because his soft spot is almost gone, and not very soft to check for craniosynostosis. This showed that his sutures were open, but very narrow. His doctor also sent him for a sleep deprived eeg for the screaming fits and lack of sleep because he would do them more when tired. This came back normal.
Since the seizures were still happening, his doctor sent for a CT scan to make sure his sutures were open. That came back normal.
He continued to have seizures, but they were mild. Then, two weeks ago, he developed a muscle spasm. It started off looking like he had a chill, and I didn't get too worried about it. I asked around to see if anyone else had ever observed this. No one had except my husbands mother who said her two boys seemed to do this when they peed... I will add that my husbands brother has hydrocephalus (sp?).
Then, a week later, the spasms got more intense. He would look like he was having a chill still, but it would be in a set of maybe three. Then, the day that it got worse, he expreienced the worst seizure yet. My sister was with him and he had just woken up from his morning nap. He began to shake more violently and his right hand turned blue. She picked him up to try to stop it, but it would just stop for a second and then start again. His eyes were open and he was alert. She said that he looked worried and that he looked like he was going to cry. This went on for almost five minutes.
His spasms stopped for a while, but I couldn't see his pedi that day because she was not in.
Then, a few hours later his spasms started again. They would come about thirty seconds apart, so I took a video of if and took him to the er.
They watched the video and told me that that was not a seizure (I knew this) and that it looked like he had just developed a tic that should go away on its own and that it was normal. They sent us home. We were there for less than an hour.
When I saw his pedi the next day she was very concerned and ordered blood work and an mri. We have an appointment with a pediatric neurologist scheduled for Jan, but she is working to get it sooner.
The bloodwork came back all normal, except for an elevated muscle enzyme that shows that the spasms are happening often enough that they are exhausting his muscles.
The spasms are now showing up a little differently, like all his muscles just tense up and he straightens out, sort of throwing himself backward instead of forward. I have a video of both types of spasm if anyone wants to see to offer some help. Things are just moving too slow for me on this...
My mother also saw dapne's story on tv and suggested moyamoya. She sees similarities in him and dapne. If anyone can help I would greatly appreciate it...Thanks for your time reading this, I know it is awfully long...
-Courtney, mother of Devyn Joshua Allen[/font]