The world of Down syndrome is changing. In my opinion, babies born today will grow up to resemble little of the “syndrome” identified by Langdon Down—if their parents take advantage of the most recent research findings. This is a big “if” because it is up to the parent to seek out the research findings and not wait for the established support organizations to catch up.
I’m going to try in just a few paragraphs to explain a very complex concept in recent research. You see, the brain doesn’t just have a mess of neurons firing at random. Instead, there is a perfectly designed system to tell neurons when to fire, and also to tell them when to quiet down. You can picture it as a busy downtown maze of streets, and with a traffic lights over the various lanes, telling the cars when to go. If your light is green you go. When it is red, you stop.
In 2004, research found that the neurons in the brain of the genetically modified DS mouse fire just fine. So what’s the problem, then? There is too much of the neurotransmitter that tells them to stop firing. Teresa Cody, a parent and dedicated researcher, explains it this way:
You may not realize it but this discovery has turned the Down syndrome world upside down. All efforts to date have been aimed at increasing the excitatory transmission. In Down syndrome the brain activity is low, and the person is mentally challenged; the obvious answer is to increase the excitatory activity. But, the work at Stanford says it [is] the other side of the system that needs to be addressed reduce the inhibitory activity.
The researchers at Stanford have demonstrated that an excess of inhibitory signals is the problem. In other words, there are too many red lights in the system and making the green lights greener doesn’t help, we have to turn off some of the red lights.
So, based on what was learned with this DS mouse, the hypothesis is that in DS there is too much inhibition—too many red lights. While the medical researchers design their studies and investigate a drug therapy to turn down those ornery red lights (the technical term is to find a “GABA antagonist”) our children need a solution now, or they will fall farther and farther behind.
That solution is Ginkgo Biloba. This oriental herb has been used in Chinese medicine for 5000 years to improve mental function. Ginkgo works as a GABA antagonist. Ginkgo turns down the red lights that inhibit the firing of neurons. No, this isn’t a drug. No, there haven’t been exhaustive studies to prove this. No, your doctor doesn’t have this as advice on his “standard of care” sheet for your baby. The major DS organizations have even released a joint statement saying, “BUT THIS ISN’T PROVEN!!!”
Right. It isn’t. The medical research establishment has a job to do. Studies have to be done. Many more mouse studies must be done to conclusively prove that in the DS mouse, Ginkgo Biloba results in learning. Following that are cautious human studies. They have to dot every i and cross every T. They must be cautious before they ever recommend any treatment for babies in this medically “at risk” population.
Finally, after the studies, and human trials, and grants, and fellowships, this body of information might percolate out to the major clinical treatment centers, and eventually to the family doctors…
…in twenty or thirty years.
You, the parent of a baby with Down syndrome, have a choice. You can do what scores of DS parents are doing, and conduct your own personal trial with this ancient herb.
What I Would Do
If I were starting over with a baby with DS, knowing what I know now, here’s what I would do.
I’d go to the Changing Minds Foundation and I’d click on Protocol and then click on Ginkgo Biloba. I’d read that explanation. Then I’d click on Research, and I’d start reading the medical research related to Ginkgo.
I’d copy off the relevant journal articles and I’d take them to my child’s doctor. I’d ask him if he knew any dangers of Ginkgo Biloba, any toxicities, or dangers of long-term use. (This herb has a 5000 year safety record in China.)
I’d buy a quality brand of Ginkgo and start taking it myself, just to see what it does to me, how it makes me feel.
I’d weigh the potential risks of giving this herb against the known risks of untreated Down syndrome.
If everything checked out, I’d look at the dose on the bottle, and I’d calibrate that adult dose to the weight of my baby. Then I’d start the herb at half of the baby dose. I’d do that for a week, and I’d watch carefully for negative reactions. Gradually, I’d work up to the baby dose I’d calibrated from the label dosage. Eventually, I’d work up to the higher dosages that are recommended by the Changing Minds Foundation parents based on parents’ experiences.
To complete my personal trial, some months after starting the Ginkgo Biloba, I’d stop giving it, and watch again for changes. Then, I’d start again, and watch for changes. One of the moms on the ES email list wrote this in 2008:
The ginkgo produced very definite and positive results in our son. The cognitive improvements came first, within a week or so, but definite motor improvement came at about six weeks on the button. I tried it twice, and it was just like a switch went on.
You don’t need to wait until GABA antagonists become standard protocol recommended for DS by the medical establishment. You can start trying Ginkgo Biloba now.
This post is #14 of a series which was written specifically to a couple who have a baby boy with Down syndrome. These fifteen are the things I would do if I once again had a baby with Down syndrome.