"Help is on the way, dear!" (Perhaps)

That line is from a favorite movie scene of mine - which also happens to have helped save C.'s life several years ago. She was choking on a piece of zucchini, and had turned totally blue in the face. I had never before used the Heimlich maneuver. But my memories of Robin Williams in the scene below guided me perfectly. After numerous strong yanks just like Williams' character did, the zucchini popped out.

That help may be on the way via these two items that I stumbled on.

The first one
 
A research study is underway to shed light on Sudden Unexplained Death in Epilepsy (a.k.a. SUDEP). I was unaware that epilepsy could kill until Anna Conte, aged 9, whose parents were instrumental in New York's legalization of medical marijuana, died of "complications from epilepsy".  Although the law was passed in June 2014, one month before Anna's death, it won’t go into effect for 18 months. Anna's parents had planned to move to Colorado so that Anna, who had Dravet Syndrome, could receive the drug there until it became available in New York.

The late Anna Conte with her mother

The next I heard of SUDEP was while frittering away time reading about Chris Cooper, who played a supporting role in one of the best movies ever made, "August: Osage County".

Among other interesting details (e.g. he's been married to only one woman, an actress too, and for 31 years!), I learned that his only child, born with CP, died at age 18 of SUDEP.

Now linked to SIDS, SUDEP remains "one of the most enigmatic phenomena in all of medicine".  This week the National Institute of Neurological Disorders and Stroke announced that it will spend $5.9 million this year on eight academic research projects on SUDEP.

The second one

Cited in the same Medpage round-up as the first was a clipping from this month’s BMC Neurology. It’s about an open-label pilot trial of minocycline - an antibiotic - as a treatment for children with Angelman syndrome.  A type of tetracyclin, it has a low risk of adverse effects and an ability to improve behavioral performance in humans with cognitive disruption.

Holy moly! This sounded too good to be true. A treatment for cognitive impairment?  Why isn't it front page headlines? Why aren't neurologists doling it out like candy?  After all,  it’s prescribed for acne, urinary tract infections among other ailments so why this hesitation about trying it our on our children? Even those who don’t have Angelman’s? (The doctors actually suspected C. had this syndrome but the test results were negative.)

Here is an extract from the study abstract:

Results: Significant improvement in the mean raw scores of the BSID-III subdomains communication and fine motor ability as well as the subdomains auditory comprehension and total language ability of the PLS-IV when baseline scores were compared to scores after the washout period. Further, improvements were observed in the receptive communication subdomain of the VABS-II after treatment with minocycline. Finally, mean scores of the BSID-III self-direction subdomain and CGI scale score were significantly improved both after minocycline treatment and after the wash out period.

Conclusion: The clinical and neuropsychological measures suggest minocycline was well tolerated and causes improvements in the adaptive behaviors of this sample of children with Angelman syndrome. While the optimal dosage and the effects of long-term use still need to be determined, these findings suggest further investigation into the effect minocycline has on patients with Angelman syndrome is warranted.

But why wait for further study results? The side effects of this drug are a joke compared to the ones we risk with all those anti-epileptics. As our pediatric neurologist told us when we inquired about trying cannabis: “What have you got to lose?”

I intend to sound her out about this drug at our next visit. Meanwhile if any of you has tried this with your child, can you please let me know the upshot?