Neurologist update- Frontal Lobe Epilepsy

I must say that I am very thankful for computers and websites....there is so much more information on there that one can learn from. It is so much easier to learn from the web than spending a ton of time in the doctor's office.

I also must say to those who have special needs kids...get a second opinion if you have any doubts or concerns that are not being addressed by your regular doctor. I say this because Andy was on the same seizure meds for 7 years and nothing else was done about to see if the meds were working. We have been dealing with Autistic like symptoms for many years and haven't had the support we needed to deal with the issues because he has cerebral palsy.

Remembering back when Andy was 4 months old in the hospital getting his shunt re-vised after his shunt infection....

We were told that cerebral palsy is an all around catch all diagnosis and not to focus on the "Cerebral palsy" part. The "CP" part really doesn't mean anything. To look at Andy after his shunt was placed you would not think anything happened to him. He looked like a perfect little baby. His eyes were wide open. He was able to move his arms and legs. The neuro-surgeon told us...he didn't have CP but he might have problems in school...he'll probably have a hard time in math and science.

Bruce and I still talk about that doctor and wonder why he thought that. A few weeks after that we changed medical insurance and our new neurologist told us that Andy would start walking around age 2.

At age 2...a few things happened...The neurologist put him on Trileptal as a preventive thing...He had abnormal spikes in his EEG. The abnormal spikes could trig a seizure at anytime. So, we agreed to the medicine. He had just learned to sit up....he learned to roll everywhere and wouldn't try to sit up because he was on the go all the time. He also at some point started shaking his head back and forth from side to side...like he was shaking his head no all the time. This is called stimming. I remember Andy's behaviors getting harder and harder...he also started waking up at night...many days he would be up all night long. We tried sleeping medicines but they weren't working. We were told it was behavioral issues and he wanted to be in control. We were letting him win when one of us would sleep with him or he slept with us. We always felt there was a reason he was waking up. We did a 24hr EEG in the hospital...which showed the same abnormal spikes. The neurologist didn't do anything about it....just kept him on Trileptal.

It is now 7 years later....Bruce has been sleeping in the same room as Andy since Luke's been born. (He will be 5 in June.). We have major Autistic like symptoms going on and still have no help or direct on how to deal with them.

Until today....!!! Our new neurologist said Andy's EEG is severely abnormal with spikes that it is worst than the cases he described in his book. (Autism and it's Medical Management: A Guide for Parents and Professional by Dr. Michael Chez.) Yikes...how can this be. He said the Trileptal can actually make the abnormal spikes worst. And his behavior could be the direct result of the Frontal Lobe Epilepsy.

So with this Frontal Lobe Epilepsy comes the Frontal Lobe Syndrome. Just when I thought I have heard it all...(ok, maybe not...however I haven't ran into FLS before.)

All the Autistic traits Andy has....may come from this Frontal Lobe Epilepsy and Syndrome.

We are starting him on new medicines and taking him off Trileptal. It will take 4 weeks to reduce the Trileptal...so hopefully within a few weeks we will see improvements.

Oh, all the sleeping issues we had with him is because of this. His lack of attention in the class room is not ADD...it is because of the abnormal spikes. Oh, the lack of potty training, the lack of memory is all directly related. Hopefully the medicine will reduce a lot of his issues. In the doctors book...he stated that he has seen the kids improve up to 70% in behavior and in speech. We are praying to see some improvement...maybe not the full 70% because Andy's EEG is worst than those of Autistic kids. So, only time will tell.