Nan's Blog

Just logging in for what seems to be my nightly progress report on Matthew. We went to see our doctor today, and low and behold he had one of his spells in her office. While I guess it was a good thing for her to see him in this shape, it was absolutely heart-breaking :( It happened after we had been put in a room and other than a baby crying, I have no idea what the trigger could have been. I tried to console him while waiting for the doctor and when she came in, I started to cry. I felt like such a baby, but I guess it had been building up for a long time and having him act so in such a public setting without me being able to help him was so hard. We tried to talk over all the screaming going on and I could tell she was really bothered by Matthew's actions. She agreed that something was going to have to be done or else danger was on the horizon for him. She called upstairs to the neurologist's office there at the clinic and they agreed to see Matthew right there on the spot. When Dr. Stewart's assistant (who has worked there for as long as we've been going) came in to tell me to go on to the third floor, I apologized to her. She said not to worry about it and that I was still the most wonderful mother...the dam broke and tears started flowing again. She ran over to hug me and was afraid that she said something to make me cry....no, it was just that Matthew was still having his spell and I was just heartbroken. She started to cry too...

There I went through the halls of GGC pushing a screaming child and wiping tears. We were sure the spectacle there today. I managed to get Matthew calmed while we waited at Dr. Zhu's office by pushing him in circles and lots of talking and singing...like we needed to put on more of a show. He acted perfectly while we were in his office. We both agreed that Matthew's behaviors needed to be treated. He has given him a prescription that will help to calm his behaviors, but we are having to wait to get it. It is a very expensive medication and since the liquid form is not widely used, no one keeps it in stock. It also requires a pre-authorization, so I have to call the pharmacy tomorrow and go from there. I worry about Matthew taking medicine, so I will question the pharmacist about the meds when I pick it up, but something has to be done to prevent injury.

Dr. Zhu said he thought that a lot of the behaviors stem from the autism and mental retardation. The sad thing is, no one knows for sure. He said nothing would show up on a medical test, but that we could treat the behaviors. I told him of the results of the MRI and he said he didn't think the lack of white matter would pose any relevance to the issues of his current behaviors. He was a very nice doctor and said to call if I have any questions, and Matthew will go back in two weeks time. I guess my one fear, and one that I've had for Matthew's life time, is that something could be medically wrong and we have no way to find out. Since he can't tell us if he hurts in the conventional manner, it makes it so hard. He had another episode in the night last night and he had one at mom and dad's this afternoon. I ended up driving him home with him hitting himself and screaming the whole way and then I bundled him up and laid down with him on the couch and we both went off to sleep. We are both exhausted. Please keep remembering us, as I have every confidence you will. Y'all are wonderful friends that I'm lucky to have!

On the bright side....Matthew was ever so happy to be at school this morning and waved bye to me until I left...he's always so anxious for me to get out the door, but I'm so glad he likes going!! AND...Jacob made it through day four of school with no expulsion ;o)