Medical marijuana refugees: 'This was our only hope'

CNN ^ | 03/11/3014

[Ken H]

Asking again, would you have the federal government step in and put a stop to this treatment for this child?

[Ken H]

From the NJ Star-Ledger, May 2013 =>

__________________________________________________________________

Relief elusive for N.J.'s youngest medical marijuana patient

-snip-

[2 year old Vivian Wilson] is diagnosed with a rare and severe form of epilepsy known as Dravet syndrome.

Vivian’s neurologist, a national expert in pediatric epilepsy, thinks it’s worth investigating.

Orrin Devinsky, director of the New York University and Saint Barnabas Epilepsy Center, said he believes cannabis can play a role in helping children with epilepsy.

http://www.nj.com/politics/index.ssf/2013/05/relief_elusive_for_njs_younges.html

___________________________________________________________________

Thoughts?

[Wolfie]

Vivian is one of the subjects of Gupta's "Weed 2" documentary. NJ has medical marijuana, but nobody specializes in the high CBD/low THC blend that works best for epilepsy.

The family spent a month in Colorado testing the oil from the Realm Of Caring growers (who specifically breed this type of plant for the manufacture of the oil, dubbed "Charlotte's Web" after their first patient). It worked very well and reduced her number of seizures to an average of one per week. They could not bring it back to NJ with them for legal reasons, and Vivian went back to her average 100 seizures a week when they returned to NJ. After trying unsuccessfully to obtain similar medicines from the NJ dispensaries, they moved to Colorado permanently.

[exDemMom]

I honestly think that the situation with “medical” marijuana is very similar to the situation with laetrile a few years ago. Laetrile was supposed to be a miracle cancer cure; people who were desperate went to all kinds of lengths to get it. It is poisonous, however, and has killed people, but does nothing to stop the cancer.

If there is any therapeutic benefit to the use of cannabidiol in the treatment of this specific form of epilepsy, then carefully designed clinical trials will reveal that benefit.

I am very aware that many conditions cannot be controlled adequately, and that people are desperate for any straw of hope. That desperation simply cannot make a miracle cure spring into existence. As hard as it is, people need to step back and think critically. Is there objective evidence supporting the use of this substance for this condition? Is there objective evidence that this substance is safe? And so on.

I consider administering untested substances of unknown properties to sick children as a form of medical experimentation, conducted in such a way that would never be approved by an ethics review board.

Dravet’s syndrome in most cases is caused by a genetic defect that causes affected children to have half the number of a certain neural receptor as normal children. As a medical researcher, that tells me that gene therapy may be a way to treat this condition, by replacing the missing receptors.