Sunday, July 25, 2010

Neurology

Since my last update, there has been a few things going on. Way back in April right after Noah returned to school following his surgery, Noah began having some strange behaviors. In October of last year, we noticed some similar behaviors and Noah underwent an EEG to rule out seizures. Because the EEG in October was normal, I thought nothing of the return of the staring spells. I figured he was just out of his routine and having a hard time readjusting. When his teacher, aide and speech therapist all expressed concern over the staring and unresponsiveness, we decided it might be a good idea to have another EEG to rule out anything new.  On May 18 we had a repeat EEG done. This time was a little different. Noah was far more sleep deprived and actually slept for the sleeping part of the test. We set up an appointment with neurology for August 31 on the assumption (You'd think that I would know better than to assume anything. What's that old saying about assuming? LOL) that the EEG was normal. A week later we received the results from Noah's pediatrician, who immediately got in touch with Children's and rescheduled Noah's appointment for a sooner date.

On July 2, Noah had his appointment with neurology at Nationwide Children's Hospital. Because they were booked, we did not see an actual neurologist and instead saw a CNP. She was awesome and treated Noah so well. She noticed his hypotonia immediately. She could also tell that he was (and still is at times) a toe walker. She asked SO many questions. She even held Noah up to the window so that he could see all the construction work going on outside. After her exam and talking with us, she consulted with the neurologist to get her opinion. The consensus is that Noah is having seizures. He was diagnosed with complex partial seizures and we began medication a short time later. She also set Noah up for an MRI at the end of next month to rule out any possible cause (although the odds of that are pretty slim).

I think that the seizure diagnosis hit me just as hard or harder than the autism diagnosis. I had a half-brother that was an epileptic. He passed away in his early 20's due to complications. A few days after Noah's diagnosis, I got a phone call from the Epilepsy Foundation. She left a message on my answering machine. I haven't called her back yet. I will. Sometime. I'm coming to grips with the diagnosis now, but it's still hard. I know he will be fine. He's such a great kid. He's dong well on the medication. It took him awhile to adjust and we are increasing the dosage VERY slowly because he became excessively drowsy when he started. Sorry this post is so long, but I had to get some stuff off my chest.

2 comments:

One Mom said...

Hugs and love and lots of prayers.

Have you ever read a blog called Connor's Song (if not, it's on my blogroll)? Connor has many medical challenges, including seizures, and his momma tends to include some interesting and useful information. It also doesn't hurt that she's really funny. ;)

Anonymous said...

Oh no! So sorry you (and Noah) have this complication to navigate through. Sending a big hug and prayers your way. Carrie