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A Promising New Drug for Autism!

August 17, 2017 by  
Filed under Uncategorized

by Monica Lee, MD

 

When I walk through the door, I am usually greeted by my son sitting next to his therapist. She will prompt him to say, “Hi ___.” He usually ends up saying, “Hi Brenda, please” (his nanny’s name). He is five, almost six. You might find this a bit peculiar, but I am used to it. You see, having a child on the spectrum means you have to be okay with your son never calling you mommy. On the outside, I remain cool and calm since I have no other children and have never been called mommy, so you know, it’s not like I’m really missing anything. Inside, of course, is another matter. I would pay a lot of money to hear my son call me mommy on his own.

Through the years we have heard of many different alternative therapies for autism including GABA, cannabis oil, and Vayarin, but all the studies relating to them were unsubstantiated and the safety could not be proven. So when I heard about suramin, my heart did a little leap and is still pitter-pattering. The article I read was in The Economist, a well-respected journal, and it seems the drug has already been used in the past to help people with African sleeping sickness and river blindness. Researchers reported some amazing results in the autistic boys taking the drug, including one boy speaking a full sentence for the first time in 12 years! Another boy, who is five years old, started smiling and actually said to his mom, “I just don’t know why I’m so happy.” And on top of that, it has been shown to be effective in a small randomized controlled trial, the gold standard of clinical trials! After reading the article, I immediately sent it to different friends who might be interested in such developments, aka other MD parents of kids on the spectrum, and they were as excited as I was. My son’s dad was just as excited and wanted him to try it right away.

Being the doctor that I am, I delved deeper into suramin and found out that the research is being conducted at UC San Diego, which is within driving distance of Los Angeles, where we live! However, when I looked up the trial in the database at ClinicalTrials.gov, I learned that the lead researcher, Dr. Robert Naviaux, is not recruiting at this time for new subjects. Wikipedia says I can potentially get the drug from the CDC (Centers for Disease Control and Prevention), but this gives me pause because the drug needs to be given intravenously and also I wouldn’t want to dose the medicine and monitor my son myself. This whole journey has made me wonder how far I will go to see my son act normally. How amazing is this idea of hope based on a single article I read online. Now I will be sitting at the edge of my seat waiting for larger phase 3 clinical trials of this drug to demonstrate safety and efficacy.

Here are some tips if you start getting excited about a potential treatment for your child:
1. Consult first with your pediatrician. The doctor may have first-hand knowledge and access to many more databases and sources of information than you do.
2. Make sure that the treatment is safe. Confirm that it is FDA approved and has gone through phase 3 clinical trials at least or has been used for other purposes and safety has been demonstrated.
3. Call into question the sources proclaiming efficacy of the herb, treatment, or remedy. Does the source tend to gain financially if you buy what they’re advocating? Is it government regulated? Does the source have a good reputation or is it nonprofit?
4. Check ClinicalTrials.gov to see what trials are being conducted in your area and if they are recruiting new subjects.
5. Remember that we all want to see our children get better, and we want to keep them safe too!

About the author:  Monica Lee, MD, is a mom of one son and an ob-gyn in the LA metro area.

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