Noah Brandon (Memphis, TN)

Our experience with STX209 was great, we enrolled in the study at Vanderbilt. We knew a few weeks into the trial we were NOT on the placebo; he was FINALLY connecting with his environment and the pieces were fitting together. Noah noticed things around him, his speech improved, he sat to get a haircut, he went to the dentist where for the first time ever we didn’t have to hold him down, his anxiety levels dropped dramatically, his stimming behavior was reduced, and his obsessive behaviors lessened. Today, we are almost weaned off  STX209 and we can really tell!

Noah is reaching back two and three years coming up with upsetting incidents and having meltdowns over them. His obsessive behavior has also returned. He has trouble getting his thoughts together and slowing down enough to complete sentences that make sense. It is heartbreaking for us to see our child regress EVERYDAY while bringing him off the medicine that changed his life and the quality of our family’s life.

STX209 gave us a quality of life that we were never able to have before.  We were able to go places as a family and not have to worry about Noah and whether he would be ok. We went to Disneyworld at the end of April and we would have NEVER done that before STX209 I wish that you could understand how much this tiny pill affected every aspect of our life!

Below is a blog post I wrote after we had been on the medicine and the effects that we saw in Noah.

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, and spitting.  He couldn’t walk in the room without hitting his sister. It seemed as if I got bit, hit, and kicked at least 10 times a day. It was horrible so we went to the doctor and while he is a great doctor, he doesn’t know a lot about autism. We got in a clinical trial at Vanderbilt in Late October, early November 2011.

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The trial 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 the beginning of the study we went every two weeks to the trial site where we had blood draws, urine samples, the whole nine yards. We started out at 5 mg a day and in increments of 5mg a week we moved up to our maximum dose of 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.

We had to bring him down off the medicine just like we took him up, in increments of 5 mg. I dreaded it and 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 on the floor when we got there, locked himself in the bathroom, and pulled the 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 of communication, sensory issues, parent stress, behavior surveys, and ADHD symptoms. 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”. 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” 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) which 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 even! 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, stayed with me. It was field trip day.  He could not have been better though maybe I should clarify my definition of “perfect” a little more. At the sea lions there is an inside part 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.

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I am begging and pleading with you as a parent of a child with autism please give us this medicine.  Thousands of children benefitted from this medication, please approve it as it can change SO MANY lives.

Noah