Tuesday, June 14, 2011
I wanted to actually wait to post this until Cole actually had the label. But it seems the last couple of weeks its been used more frequently then before. When Cole first started EI, Noreen had told me that Cole had a few signs of autism but we didn't think at that time he had it. I did the best I could to keep him away from hospitals that are fast to diagnose a child with autism while we were trying to figure out what was going on. Cole's main signs that we noticed was poor eye contact and no speech. Later at the neurologist i found out on the M-CHAT that Cole had about 7 red flags out of 23 questions. The doctor sad normally 3 red flags leads them to start looking at autism. The M-CHAT is a test the parents take on their child. Its all yes and no answers that the doctor then grades to see how many warning signs your child has for autism spectrum. Our neurologist spoke about autism with regression and possible seizure. We took Cole for his blood work, MRI and EEG and like every parent we waited. The blood work was the first to come back since the MRI and EEG appointment felt like we had to jump through hoops for. His blood work came back normal and next was the MRI and EEG. The EEG came back normal but the MRI showed abnormalities. I immediately panicked and if it wasn't for Melissa ( Cole's EI) I would have kept panicking. I picked up the MRI and couldn't help but look at the results. The abnormality was that he could possibly have White Matter Disease. Once again I did the worst thing and googled it. I overnights the MRI to his neurologist and hoped that I was now overreacting. I spent a whole weekend keeping busy with the help of my car, to not think of what the doctor could tell me. So the call finally came in and she said that it was not a concern the white matter disease now since he was so young but wanted to have a follow up MRI in 6-12months. I know that it will be a worry in the back of my mind but I can't put my focus on it. So I thought I was in the clear and that we would do Cole's follow up appointment in July like planned and all would be fine. I know that autism still lingered but it was actually something I accepted. But then the words came out of the doctors mouth that we needed to talk about his EEG. She told me it was only 30% accurate as far as telling us if seizures had happened. She now wants Cole to go for a 3 day EEG. He would be admitted in the hospital and she would monitor him. She said she needs to be sure that there is no seizure. While she was speaking she was implying Cole was Autistic. I also went through this while speaking to Cole's peds doctor at his check up. I started to wonder if they knew but just wasn't labeling him. While trying to wrap my brain around this EEG , I was also wondering if our next appointment Cole was actually going to have the autism label. So I am now waiting for the day for the label to happen. I still have hope that its not that and of course hope That all of the sudden the light clicks on for Cole and he starts speaking. But i know that Cole's warning signs are there and it will be hard to change that. I just wish the doctors would tell me what is going on and if I am proceeding the way i should. Its hard to know if all the EI and Speech at the hospital is going on the right track. I know Cole loves all of his therapist but wonder if its too much some weeks. I also want to say that parents who have children with special needs should win a medal. I spent a lot of time trying to make appointments, find the best place to take Cole for his testing and just keep things straight. It made me realize that parents who have children that have major special needs are truly amazing. So to all those parents who have special needs children: YOU ARE DOING AN AWESOME JOBS AND YOU ARE AN AMAZING PERSON!