Saturday, January 26, 2013

Memantine Clinical Research Study: Month 2-3

It has come to our attention that the Memantine* is actually the generic version of Namenda*, a drug, already on the market for Alzheimer's, used at parent/doctor discretion for experimental autism therapy.

We are entering our 3rd month in clinical trials at Children's National Hospital in Washington DC.
This trial is focused on allowing Memantine* to enter the FDA approved market SPECIFICALLY for the use of treating Autism in children under the age of 12. His dose has doubled to 6mg a day, in the for of two 3mg capsules.

To date we have seen some improvement in sentence structure, number of words used in a given sentence and also more "typical" social outreach. For example, this morning our 11 year old looked at me and said, "Ally, tickle tickle!" and then smiled and started ticking me under my chin.

We have also seen some negatives that have been somewhat of a concern. The STIM behavior is at a recent high; loud and aggressive noises with constant repeating of word phrases. These behaviors couple with severe headache, diarrhea, loss of interest in food and what appears to be nausea (I say that loosely as we don't know exactly how he feels as he cannot communicate it directly).

Food for thought:

Our 13 year old is on Namenda* already, they started about the same time frame. She never experienced side effects such as headache or over all ill disposition, but did suffer the increase of STIM activity including loss of sleep on a regular basis (waking at ours like 4am and 5am for the day).

She has also shown a large increase of number of words used in a sentence along with an enormous increase in use of typical "quips".





  1. My son is on therapy for 3 weeks of memantine and we noticed the same kind of progress you're describing. For now there are no bad effects. The first two weeks was at a dose of 3 mg and is now on 6mg as his final dose. He is 7.5 and he was diagnosed with autism. I wish you good luck! :)

    1. Thank you! We are still seeing good results but have stopped his older sister as we are trying a bunch of other treatments since being diagnosed with PANDAS. Best of luck to you too!