I've been avoiding writing this blog because I feel like I have been going through a brief period where my heart was aching a little too much to write, meanwhile knowing I have much to be very thankful for. Nevertheless, I have decided to post some information about this because I know there are others out there that are a bit confused about tics, stimming, and seizures.
We visited the neurologist a couple of weeks ago. I brought in plenty of videos and he watched them all carefully. He explained to me the differences between seizures, complex tics and stemming in this easy to understand non-technical way:
- Stimming is repetitive movements that a child chooses to do because it gives them self stimulation and feels good. These things are done often and sometimes for long periods of time.
- Complex tics, as in Tourette Syndrome, are movements that the child does to fill an urge that they often cannot help or are not in control of, additionally they don't always like the tics or they can cause discomfort.
- Seizures are complete loss of consciousness or a brief loss of consciousness followed by a period of lethargy (not in absence seizures, however).
So, he studied Jacobs videos and observed for about two hours. He ruled out seizures because in full seizures he would lose consciousness and shake or fall to the ground and in absence seizures the child usually stares off or blinks, while being sort of out of it. He said that there are no seizures that look like what Jacob is doing. We went over all of his history and he told me that the things that Jacob is doing are actually stereotypical complex tics. They are sharp movements that often time make him feel upset or bother him and he doesn't seem to have a pattern. For instance, he doesn't do it just as an avoidance technique or when he is upset. He also does it in the middle of playing or eating or walking. Doctors suspected Tourette Syndrome in December of 2012. He asked to keep his videos for research and training at Texas Children's.
Then he diagnosed Jacob with Tourette Syndrome.
I asked him if it was common for a child to have both autism and Tourette Syndrome and he said it was not. Since then I have looked it up and I believe less than 10% of people with autism have both.
I am praising God that Jacob is not having seizures. I pray for those that are dealing with seizures on top of autism. I want to thank everyone very much for your prayers for sweet Jakey. I know that we serve an awesome God and I am just trusting in Him for this journey and where it is taking us now. May God get all the glory in all that we do.
My favorite prayer over our lives and purpose...
English Standard Version (ESV)