I am going to recap for those that don't know; my son is 9 and has autism. Back in August of 2011, Noah started hitting, kicking, biting, spitting he couldn't walk in the room without hitting his sister. It seemed as if I got bit, hit kicked and least 10 times a day. It was horrible so we went to the doctor and he is a great doctor, but due to reasons of insurance he was going to be our doctor. Like most pediatricians he doesn’t know a lot about autism. Anyway to the point we got in a clinical trial at Vanderbilt in Late October, early November.
It was a blind study meaning we didn't know if he was on the placebo or the drug that he was going to get. He was definitely on the medicine, I am his mother and I know my kid. So at first of the study we went every two weeks, blood draws urine samples the whole nine yards. We started out at 5 mg a day and gradually in increments of 5mg a week we moved up to our maximum dose 30mg. I started seeing improvements when he got around 15-20 mg doses.
The improvements that we were seeing were great the study was to see if it increased social skills. To increase social skills you have to be able to communicate RIGHT??? His communication improved so much, he was a late talker, he did a lot of the echolalia thing, he still does that but he uses it in the right context. Along with be able to communicate better his social skills improved. His cognitive skills are improving daily; he is connecting with the world around him. He reads billboards as we drive down the street. His behaviors have improved and we are not currently getting ABA services due to financial reasons I can't afford it.
We had to bring him down off the medicine just like we took him up in increments of 5 mg. I dreaded it, when we got him to 0 mg some behaviors began to reappear we had to wait about 10 days off the medicine before we went back to Vanderbilt. The nurses noticed his old behaviors coming back, he lay in the floor when we got there, locked himself in the bathroom & pulled emergency cord!! Had a mini meltdown when Dr S came in he was upside down in the exam chair screaming GREAT. Each time we went I had to complete surveys of different areas communication, sensory issues, parent stress, behavior surveys, ADHD symptoms and I noticed that the final survey looked a lot like the first one.
He doesn't try to escape anymore, he gets dizzy, he gets hot or cold now and will tell me. He was trying new foods, he is more attentive when we are working, we home school him due to issues with Memphis City Schools. He is making great strides in all areas. Is it a cure for autism NO but does it help YES. Just last night he approached his sister and said
her,“let’s talk". How cool she was so excited she came and told me I said go talk to him! So she asked him what he wanted to do, and he replied, "I want to skate with you" (they sock skate in the living room on the hardwood floor). So they skated she was teaching him "dance moves" a routine and he was doing it the best he could. It was awesome.
We have had a totally AWESOME month. I had a FSP meeting (IEP for home school) went well; the dentist appt was INCREDIBLE this was the first time that we were able to get his teeth cleaned!! They took x-rays it was so cool and it was a new dentist. All is well NO cavities!! I made a new friend this week at a parent support group her son is Noah's age and they seem closely matched!! A friend for Noah awesome!! I took him to the zoo he was perfect, he listened to me, he stayed with me, it was field trip day UGH he could not have been better, maybe I should clarify my definition of "perfect" a little more At the sea lions there is an inside where you can sit or stand BUT NOT LAY DOWN well Noah did he liked the way the floor felt cool and smooth. He had to walk up and down the stairs in the amphitheatre about 5 times. Those things don’t bother me any more though. That is life on the spectrum.
Dr S said we would continue to see improvements with him. This is the FIRST medicine to be approved to help the symptoms of autism, it has minimal side effects. He also told us that Noah had seen the world around him in "his own way" that too will continue to change and he will continue to become aware of his environment.
You can subscribe to my blog I continue to post information you can email me at firstname.lastname@example.org. The drug is to be released in 2013 in my opinion it will benefit many individuals with autism. It has truly made a difference in our lives and it gives me goose bumps as I see growth in him every single day and it his positive and sometimes negative interaction with the world.
Thanks Seaside Therapeutics, Vanderbilt Children's Hospital, Autism Speaks (funding the study) and God because of His grace and mercy that we were able to participate!!!
I LOVE STX-209!!!!!
Here are some links to a few article you might find helpful: