West Syndrome Too

The Neurologist appointment was pretty despressing. Sheena was asleep when we met the Dr, but woke up about 10 minutes into the appointment. Usually with Infantile Spasms, they occur more so after waking up, and sure enough, he observed several episodes while she was on the examining table. Her seizures are more like half a startle reflex - really brief, and unless you are specifically looking for them, I don't think you'd pick it up. I think we've often thought it was excitement and wriggling. He thinks that these movements are the issue, but is less convinced about the eye blinking and lip smacking thing (although we didn't have the video of that to show him - need to send one into him).

Infantile Spasms is also known as West Syndrome. It is a combination of 3 factors, the spasms, developmental delay or regression and hypsarithmia showing on an EEG. While the hypsarithmia doesn't cause her pain (as such), he said that it seems to annoy kids, which is why she's been so irritable. I liken it to restless legs that you can't relax during a movie or in the car. He also thought that she might be having aura, a sensation that something is going to happen, which would also explain some of the grizzling. The worst news that he said, and I want to reject, is that kids with West and Down Syndrome, or even Down-West Syndrome (which rolls off the tongue very well) are more more likely to be on the lower end of the spectrum as far as the DS range goes. Didn't look like that yesterday, so I am still denying that will be the case with Sheena.

So anyway, now that a Dr has offically seen a cluster of her seizures, we also know what to look for, and we are to track it in a diary. He was happy to boost the medication significantly, and told us that we could dilute the sachet in 10ml rather than 100, which is much easier to give her twice a day. She's to have another EEG in 2 weeks, and we're to up the dosage again in one week if we are still seeing spasms. Pretty bad huh?

I am reluctant to just have shocking news on this blog, because I much prefer good news, so the good news is that Sheena had a nice morning with her dad while I was at work. They went to a DS coffee group where there were 4 other bubbas under 14 months. Another guy at the group is a house-husband so Mark wasn't the only bloke there. The coffee group is never too heavy, and rarely has a specific topic to address, so it is more of a chance to get together with other parents on a regular basis.

I am going to try to get some sleep now. Its 3.30 a.m. and I have to work tomorrow. I am a bit freaked out with all this stuff at the moment.