Rilutek for OCD

[philamom]

Maybe you could try some Valerian Root Tea with Lemon and Stevia for her insomnia. Sorry Wilma...it seems you never get a break!

[PatAnne]

I'd like to add that my son was about a week away from being home schooled because the anxiety was so bad we just could not stand to watch him suffer the effort it took to make it though the day going. That decicion was killing me because he had just started in a really great school. Finding a med like baclofen to lift this anxiety/OCD off the shoulders of this poor kid, has been nothing short of a miracle for him. Everyday is a good day at school... Never thought I'd be able to mutter those words after what we have been through the past few years.

 

PatAnne

 

 

Nancy and All,

 

My son (very similar story to Nancy minus lyme dx),was on rilutek for almost three years. It was actually only really great for the first 4 months.

In December after reading some very interesting articles about Baclofen, a drug that's been around for a very long time as muscle relaxant, we decided to switch from rilutek to baclofen. We had also just gotten a script for IVIG because my son had a very bad PANDAS episode but decided to see how the baclofen would work.

 

Well now, we have been THRILLED to see 97% of the OCD/anxiety is gone! It's been the best few months in so many years. The other good thing is it's affordable! We started at 1/4 tab 4x/day and slowly upped the dose to 1 1/4 tab 4 times per day (DS is 14 120 lbs).It is a drug that cannot be abruptly stopped.

 

I encourage anyone interested to look up the NYT articles and study details on baclofen/autism/fragx research at Seaside Theraputics in MA. They have had successful trials so far with a formula 10x the strenghth of baclofen in terms of blocking glutamate, so the new drug hopefully will be on the market in 2013. In the mean time, baclofen is gaining use off label for anxiety/OCD.

 

Best,

Patricia

 

 

Wilma,

 

Considering that my daughter has been diagnosed with autism, colitis, PANDAS, and an alphabet soup of other disorders beginning from age two, I think she's doing very well. She no longer shows any signs of autism (other than missing some very subtle social cues) and her colitis is completely cleared up. As far as PANDAS goes, her tics are 100% gone (and have been for ~2 years), her violent rages are gone, no more sleep problems, she is getting As and Bs instead of Cs and Ds, and she has "real" friends for the first time ever. Her primary issues now are severe anxiety and intrusive/obsessive thoughts, which she has had for only the past few years and seems to have gotten worse as the other PANDAS symptoms disappeared. We did find out in Oct that she is IgM positive for Lyme disease and was also IgG positive for Mycoplasma. She is in her 5th month of treatment for Lyme so it is too soon to see much in the way of results, except her brain fog, fatigue, and joint stiffness and pain are gone. I suspect she may have another co-infection as well (possibly Bartonella), but time will tell. Sorry, that's a long answer to your question. I would say the PANDAS seems to be in remission. And in case you're wondering, I do think one or more of the bacterial infections may have been at the root of her autism and colitis.

 

Nancy

Pat Anne- That's fantastic! Thank you for sharing.