My son is 5 1/2 years old and has a variety of issues.
A lil history: He was born premie at 27 weeks gestation. One month after discharge, he had a Hiatal Hernia and Lazy Eye repair. He's had global delays, pretty much his entire life. He didn't sit up until he was about a year old, which was around the time of his first onset of seizure activity (myoclonic). Didn't walk until he was almost 2, and then took off with his language development. He's lucky enough to have been receiving services since he was 6 months old, and began S/L Therapy at 2 1/2.
When he was about 3 1/2 he started having staring spells, which I didn't think twice about at first. Then one day, his eyes rolled a bit, and the lightbulb turned on that it may be seizure activity. I was told he was having Absense Seizures and learned that he may also be having Atypical Absense seizures.
Currently, most of his development ranges between 12 mo to 29 months, rounding out to about that of a 2 year old. His IEP states Other Health Impairement and Speech/Language Delay, so I guess those are his biggest issues. However, he benefits hugely from OT and PT. He is still being treated for seizure activity.
In the last 6 months or so, he started having other very abnormal activity, which I thought was related to the seizures.
First of all, his head jerks down, and his eyes stare, which is what I thought was the actual seizure. The seizures, I have read, can last up to 20 seconds. During this time, he will hold his arms out to the side, like wings, only bent forward at the elbow. At times, they also flap. Sometimes, his arms will go above his head and clasp together. Other times, his arms will go in front of him, and he will either flap them or clap. He continues to walk during this activity. Sometimes his legs go in a bicycling motion. Other times, he just lifts his legs. Sometimes, if he's sitting "criss-cross applesauce" he will grab his foot and pull it upward. I've seen this happen in his sleep. His eyes will open and go upward (not roll), his arms and legs will move about in motions mentioned above. If he's eating or drinking, he will either bite his tongue, or the liquid will drain out of his mouth. He has never wet or messed himself during this activity.
No matter what he does, these actions make for a very awkward looking 5 year old while he's out and about.
During my last Nuerology visit, my son's doctor told me what he's experiencing may not be seizure activity after all. Her theory was that his seizures may be fully controlled, and what he's experiencing is something completely different. She saw one of his jead-jerking, staring spells, and said, "that's not a seizure." She wasn't able to give any answers, as I believe she was just as stumped as I am.
I feel like I've just run into a brick wall. What else could it be?
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