Monday, December 14, 2009

I'm Back, With Apologies

Hello everyone! I'd like to apologize for my absence over the past months - it has been a busy, eventful time for my family. My son, who has a history of seizures, had a setback this summer, and we have been working hard to help him through. The good news is that he is doing much better now, and I would love to share a bit with you.

Alex had a follow-up EEG last spring. It showed no seizure activity, so we were advised to take him off his meds. At first he was doing fine, but we noticed several things over the summer that were alarming. His sleeping patterns were interrupted. He started to complain of frequent headaches. Occasionally, he would eat until he vomited. Most disturbing, he regressed in his RDI program - his ability to read facial expressions regressed, he became more inflexible, and his stimming behaviors and high-pitched noises increased.

My RDI Consultant (yes, I have an RDI Consultant, even though I am also trained in the program. She has the distance necessary to help me see our progress and setbacks as they are, not as I would like them to be, and she is wonderful) felt that he might still be suffering from seizures, though they were likely so deep into his brain that a basic EEG would not pick them up. She recommended a doctor in Deerfield, Illinois who could do a test called a brain SPECT scan, which could pick up on activity deep inside the brain.

The SPECT showed seizure activity, as well as helping the doctor to pinpoint which parts of his brain are under-active and which are over-active. We started by putting him on depakote to treat the seizures. It took a few months to build him up to the proper dose, and during that time we noticed regression and progress in fits and starts. The general pattern was to see some regression right after we raised the dose (for example, he would get really obsessive over a toy, or have a hard time waiting to do something he really wanted to do). After a day or two, this would pass, and we saw big changes. He started reading my facial expressions again. He started imitating facial expressions.

We saw other incredible changes. He started spontaneously greeting his peers. He is showing curiosity and asking questions, like "What did you have for lunch today?" He is teasing his brother, which is annoying, but so normal. He follows me around like a toddler and wants to help me clean the kitchen or cook dinner. In many ways, his is like a preschooler. My background is in early childhood education, and he reminds me a great deal of the preschoolers I've worked with - seeking interaction, asking many questions, not always behaving appropriately, but learning with consistent redirection and guidance. He is finally at a place where I can guide him again.

We still have a long way to go. His doctor wants to work on stimulating his prefrontal cortex, so we will be starting neurofeedback next year.

I will continue to update you on how he is doing, and to get back to my posts on RDI. Again, I apologize for my absence, and I will do my best to post here regularly again.

Happy holidays to all!


Penny said...

Laurel, I've missed your posts and I see you've been attending to more important matters. Glad to see you're finding the right path for you son and he's on track again. I know how frustrating the regressions can be.

poohder said...

Yay you're back! We understand your absence. Your posts do help so many. I am looking forward to them and also to being able to refer your site to others who have questions about autism remediation. Rhonda

The Glasers said...

Don't apologize, but it does point to how devastating seizures can be, even the ones that are not obvious!

Snoopy dancing that you were able to find the right med at the right dose!!!!!

Di said...

Welcome back. I have been recommending your blog and had observed that you hadn't posted for a long time. I have also been giving your RDI article from the Autism Spectrum Quarterly Magazine on to anyone I meet associated with Autism!
Great news that your little boy is on the mend.
Best wishes
South Africa