Last Monday, Alex started on Rapamune finally. It’s a wonderful but horrible medication for Alex. In terms of risks and side-effects, it scares the hell out of me, but for Alex’s situation (TSC and autism), it’s one of the few pharmaceuticals that can do some amazing good for the kid. We’ve been wanting to try it a while, and the growth in his brain is enough to justify it finally — either we try this medication or we get started down the road of brain surgery.
The good news is that it has been shown to shrink these growths (SEGAs) as well as reverse autistic behaviors to some degree — obviously we’d like to see the self-injury go away or at least cut down some.
The bad news is it’s just so risky. It’s got some ridiculous side-effect rates (something like 75% of all users get mouth ulcers, for instance), and there is some research that suggests it can increase the risk of certain types of cancer. It’s an immunosuppressant, which means he’ll have a weakened immune system. That’s bad for a kid who is constantly hurting himself (both self-injury as well as just skinning his knees and such during normal play) and putting all kinds of random stuff in his mouth. Not to mention being around so many different people throughout the day. A simple cold makes me worry now.
All in all, it’s a really scary time for us.
Our last few visits haven’t helped matters – his mood has been incredibly volatile, even with the new hash. The new medicine is obviously not yet fully in his system, so I can’t expect to see any changes in his behavior yet, but there was always the hope that it would somehow work a miracle after a single dose. When he was very young, he had infantile spasms (also known as West syndrome), and we got a medication for him called Vigabatrin, which stopped the spasms from the first dose. I guess I was hoping it was finally Alex’s time to have some good luck again, so even though it’s not a surprise that he’s still raging, it is still very hard to bear.
4 thoughts on “The new medication”
I live in Sydney Australia.
My son Joe is 16 and was diagnosed with TS at 10 months. His seizures have been intractable – despite trying just about every anti-convulsant medication known, and having surgery at age 11 to remove one of the biggest tubers in his brain.
He’s just started today on Rapamun. We’re concerned about the possible side-effects, but prepared to give it a shot in the hope of some improvement in his seizures.
I’ll let you know how he goes. Good luck to Alex and congratulation on all your hardwork!
Mark from Sydney.
I wish you the best of luck. There’s not a lot I can say about Rapamune yet – doesn’t seem to be helping or hurting at the moment. But only seeing Alex irregularly, things could be changing in small ways and I wouldn’t really notice, so who knows?
Have been reading your site with much interest. How is Alex doing on Rapamune?
My daughter Haley is 13 with TSC and autism. We live in Denver and she sees Dr. Franz up in Cinci. She’s been on Rapamune since July of 2008 and we are now considering medical marijuana for her behaviors (anxiety, agitation) and intense stimming. I would love to chat with you and see how you feel the combo of Rap and MJ are working for Alex.
Your story breaks my heart and I can easily start crying when I see some of the similarities between Alex and Haley. The decision to have him live elsewhere had to have been heartbreaking for you and your family, but it has been very helpful reading your posts as I am struggling with how to keep Haley at home with us as well.
Thanks for putting your story out there….
I’m not sure I can say much about the combination of MMJ and Rapamune. The Rapamune has only been in his system for two months, so we’re not sure what to expect out of it long-term, and the MMJ we can manage to administer is so little that I couldn’t even guess if the two would interact in any concerning way.
I’d check with the doctor, but cannabis is a pretty mild substance. Chances are the worst you’ll do is impair Haley’s ability to learn. That seems to be about the only legitimate concern I’ve seen regarding treating children with marijuana, but in a case like Alex’s, the other medications he’s on are already doing that (and have the potential for serious long-term side-effects).
I’d say if she’s in a situation where she may have to be placed outside the home, and you’re comfortable with the risks (Alex’s learning is impeded so much be self-abuse and other meds, for instance, that we wouldn’t worry a bit about that) that you should try medical marijuana soon, rather than wait until it’s already too late.
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