Tuesday, February 20, 2007
In response to Primetime The Outsiders, "aversive stimulation" skin shock therapy on autistic and other special needs kids. Please tell people about Zachary' s success story. I want people to know that kids that hurt themselves might be in pain. My son gets helped from the MAGIK clinic. He stops hurting himself. He isn't a zombie everyday.
It's a miracle in my life. He still has autism and other problems. It still happens. But we can manage it. I am sure that shocking him would not help him get over this in any way. I am sorry for those kids and the families that need help. I worry that people saw the Primetime and think it' s horrible but their only hope. Please tell them to check out 20 seconds of pain. Tell them it's nothing compared to how far it went. To being bloody and breaking doors and windshields. Tell them we are better.
Tuesday, February 13, 2007
He is so cute. I try to make him do something educational. He often watches movies and playes games on his laptop to distrac him from pain, panic, and boredom. This picture is actually from a dental procedure he had done. I never know how Zachary's body will respond.
It was after a dental procedure that Zachary had his first rabdomyalosis. Basically, his muscle protien is released into the blood stream and it damages the kidneys on the way out. It was also hard on his liver. The second time it happened, it was triggered by the flu. Both times he spent two weeks in the hospital. Because he has had it twice, we were referred to the genetics clinic, to look into the mitochondrial disorder.
The good thing about belonging to a regular clinic like the MAGIK clinic is that I knew Dr. Joseph would stop by to check on Zachary. He would interpret the medical information for me. He also knew Zachary so well he could rule out things that were being considered and validate things other doctors weren't at first willing to accept just at my word. Now, everyone is gettting to know that Zachary is one medical rubiks cube. Especially when it comes to pain.
Monday, February 12, 2007
Department: Department of Anesthesiology Critical Care Medicine,Division of Anesthesiology
Anesthesiology; Pain Management
Jeffrey I. Gold, Ph.D.
Department: Department of Anesthesiology Critical Care Medicine
Clinical Psychology; Pain Management
I will put more medical information up soon. Although, Zachary has many issues that are not well understood. Starting with Autism but that was the easy one for us. My brother was autistic. Zachary developed out of order as an infant. He screamed from day one. He walked/sort of ran from one place until he crashed into another at seven months. We started seeing doctors early on. Zachary was in an infant program through the march of dimes. I have been with him every step of the way. I had a hard time finding doctors that would treat Zachary for pain. Even though they would tell me that he was in pain. I was so relieved to find the MAGIK clinic at Children's Hospital Los Angeles. I was completely ruined by the time I got there. I resorted to showing them a video of one of Zachary's pain episodes. If you watch my You Tube video 20 seconds of pain, magnify it, add blood and open wounds to his head and hands. You'll have some idea of what I showed them. The only thing I could do was wrap us up in sheets and hang out in my homemade padded cell. You can find a picture of that here too. If that is not enough to show how terrifying this was to live with. Email me and I'll tell you the story about Zachary busting the windshield of my car twice. None of that mattered because he was suffering so much. I was so scared. To call Dr. Joseph and Dr. Gold heros is an understatment. They gave us a life. This is just the story of how we got to them. Next I'll post about what they do for him. I don't know how to thank them. Perhaps this will at least show them that I have the desire too. I hope to post more about the MAGIK clinic and what they do for other children. So this is why Zachary Wins Again!
Friday, February 9, 2007