Seizures or Stims? Let the Fun Begin...

Now that we officially have the autism diagnosis, it appears that the "fun" is just beginning. Katelyn originally had a neurology appointment scheduled for the end of February to simply rule out seizures since they can be common in children with autism. When I made the appointment, we really did not suspect that she was having seizures, but we knew it was imperative that we rule it out. However, she has been exhibiting some concerning behaviors lately, so I mentioned them to the doctor at the autism diagnostic center on Monday when she went over Katelyn's diagnosis. She recommended that we get Katelyn evaluated by a neurologist sooner, if possible, since she said that some of the symptoms she is experiencing are concerning to her.

So, being the proactive mother lion that I am, I called the neurologist's office and told them that we could not wait; she needed to be seen ASAP. They gave us an emergency appointment today, but unfortunately it was with an adult neurologist, not the pediatric doctor that we were originally going to see. Regardless, we felt that it was more important to get her evaluated as soon as possible.

We met with the neurologist today and explained the different things we have noticed lately with Katelyn, including strange mouth and tongue movements accompanied by staring spells, crying and confusion, as well as what appears to be regression (she has lost many skills that she used to do independently; for instance, she is refusing to eat unless we physically put the food in the back of her mouth, and even then she will push it out like a 3-month-old does when first learning to eat; she wants to be carried everywhere and will no longer walk down stairs; she no longer has any interest in her toys, TV shows, etc., and basically just calls for "mama" all day long, even when I am holding her; and she will not enter certain rooms anymore.)

The neurologist seemed quite concerned, but admitted that she is not a pediatric neurologist, so she consulted with a pediatric epileptologist from a top Boston hospital. After she explained our concerns to this specialist, he said that Katelyn needs to be started on a low dose of Keppra, an anti-epileptic drug, right away in case she is having seizures. They also will be scheduling her for a 24-hour EEG study to look for any seizure activity, and also to rule out Landau-Kleffner Syndrome. Unfortunately, there are waiting lists to get 24-hour EEGs scheduled, often more than a month, but in accordance with the Boston specialist's recommendation, Katelyn's order was filed as urgent, and we are supposed to receive a call from the hospital within the week to schedule the EEG.

So, needless to say, we are now in the midst of what feels like an autism tornado. It is quite obvious why the symbol for autism is the puzzle piece. Unfortunately, putting together this puzzle, and searching for the missing pieces, is going to be a lifelong project. It's a good thing that Kevin and I enjoy puzzles. Katelyn sure is a mystery, but we wouldn't trade her for the world.