Okay, now I am a bit concerned...
How did you find out that he had Epilepsy? How did you find out it wasn't just the 'dreaming of eating'? DD does that nearly nightly.
Lip smacking and chewing and swallowing. She also gets night sweats too. or so I think/thought. some nights her whole body get flushed, and pooled in sweat, but we just uncover her and she doesn't even wake up.
Is this something I should bring up at her next appointment? (I have one for may 3rd to get referral for Autism Evaluation.)
Off to do more reading about this..
Before that though I wanted to let you know, I AM thinking of you and your family. I really hope the med change will help soon.
I don't mind the hijack at all. In part, I did this TR because March was Epilepsy Awareness month and April is Autism Awareness Month.
Here is a link to a story on the Epilepsy foundation's website
http://www.epilepsyfoundation.org/epilepsyusa/magazine/Issue6-2009/AutismandEpilepsy.cfm According to the statistics, 20 to 25% of people with ASD have seizures.
It was surely an act of God that I discovered Anakin having a Grand Mal on Father's Day 2010. We were going to go to early church and then to Epcot for Father's Day. I was at the computer checking email and facebook when I couldn't get the thought out of my head that I should go check on Anakin.
He was having a Grand Mal. Goofy rushed to his side as I rushed to the phone. By the time the 911 operator got on with me, Anakin's face was blue and he wasn't breathing. Goofy started CPR on him and I stayed on the phone with the 911 operator. It felt like an eternity for the fire and ambulance crew to get here. But it was only 2 minutes. He came to in the ambulance.
We were only in the ER for an hour and a half and they sent us home! The ER pediatrician had a CT scan done on him and it came back negative.
Once home, I was completely overwhelmed. And I couldn't believe we were home, just like that. The ER doc said that we needed to get him to a pediatric neurologist in the next week, and that most children will have a seizure in their life and never, ever have one again.
The next day I made an appointment with the pediatric neurologist, but they couldn't see him for two months, but a nurse practitioner at their office could see him in 2 weeks. So I took that appointment. However, that night he had another seizure, though not as intense, and I refused to wait 2 weeks for him to get to a neurologist.
I called my neurologist who I see for migraines, remembering that he did a rotation years ago at Boston's Children Hospital. I asked if they could see him soon, and his office called in additional staff so that he could be seen right away. He was started on Topamax Sprinkles that we had to put in pudding or applesauce. He was scheduled for a sleep deprived EEG and sent to a Children's Hospital to have an MRI.
It just so happened that I was asked to stay with him. Somehow I remembered learning about EEGs in pharmacy school, and asked the technician about the spiking I was seeing. While she wasn't allowed really tell me about it. She did say the spiking was coming from the right side of the brain.
When we went for the MRI, I mentioned to the anesthesiologist that the EEG showed seizure activity coming from the right side of the brain. The MRI was ordered without dye, but the radiologist thought he saw something on the right side that looked like a possible lesion. He suggested in his report that another MRI be performed with dye and a spectroscopy test be done to see if the lesion is cancerous.
The MRI with dye and spectroscopy showed that the lesion was not cancerous. It was a pocket of neurons. These neurons give off electrical impulses that the brain does not recognize and causes seizures. The plan of action was to give medication that would intercept the signals. He increased the Topamax.
This is when the sensory issues started. Seems it almost happened over night. His senses of hearing, sight, taste and touch became so much more heightened. Things that never bothered him suddenly sent him cowering or fleeing. Meltdowns also began. As did hurting himself and him hurting us to try to make it go away. Both the doctor and my husband and I thought it was from the Topamax so he was switched to carbamazepine which helped alot with the seizures, but not so much with the sensory issues.
He was sent for neurocognitive tests too. We learned so much more about his brain and his actions through this battery of testing of him, and the surveys that Goofy and I were given to fill out.
Till it was all set and done, Anakin was diagnosed with Cortical Dysplasia, developmental delay, ADHD, and Asperger's Syndrome. However, the psychologist said that while he tested positive for ADHD and Asperger's syndrome were directly related to the Cortical Dysplasia, so he didn't feel comfortable labeling him with those diagnosis' but said he needed to be treated as though he has both. The neurologist agreed and said that the sensory issues are definately a result of the extra neurons, and he felt the ADHD was a result of the sensory issues. He began cognitive behavioral therapy as a result of these tests.
The neurologist sent Anakin for a PT and OT evaluation. And in January he started OT, and in Feb started PT. Here is where we began to see the biggest changes for the positive in his behavior, sensory perceptions and he began to have less and less seizures!
Welcome! Thanks! I hope you have an amazing vacation! 
