Monday, May 26, 2014

Looks like we're going to pot

Before I recap our visit to the neurologist, just a brief comment on blogging parents of severely disabled children.

Until recently I congratulated myself for being the only blogging parent of a profoundly disabled child. The others, I presumed, were contending with just mild to severe CP, autistic, learning disabled or some such, in my opinion, disability-lite.

Now I've discovered a  flourishing blogosphere community of parents like me to which I've been gravitating. Of course, C. still takes first prize for "Most Profoundly Disabled of All", in a contest I wish she'd start losing occasionally.

But in the four blogs I'm avidly following the disabilities are genuinely severe and the parents so candid that I'm culling solace, entertainment and valuable information. It's often like looking into a mirror - right down to the gender and ages of the children (all girls between 19 and 20). I've linked to two of them in the past but here's the full list:
The neurologist - whom we already respected - didn't disappoint us. She's always professional, amiable though this side of warm. After warily posing the cannabis idea, I fully expected her to either ridicule or just dismiss it. Instead, she told us that the parents of two other patients had already requested it too. Since she wasn't knowledgeable about the treatment, she had contacted a colleague who is and who invited her to a meeting of all the neurologists in the country using the this drug. The meeting is scheduled for this week. She urged us to email her afterward to learn what C.'s chances are of being approved for cannabis.

After the standard dampener of hope that we've grown used to (i.e."it's not yet proven effective; success stories are anecdotal, etc") she seemed to read my mind when she said: "But why not try it? You've got nothing to lose."

All in all, it was a superb visit. I know, that's setting the bar awfully low. No diagnosis, no improvement, little hope of any in the future - yet we walked out of the office smiling. After C.'s daytime seizure lull was broken yesterday by two wakeful ones, I'm just bursting to start the cannabis.

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