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Maryland offers "The New Directions Waiver" as a means of self-directing state and federal Medicaid dollars for individuals who qualify for supports due to their disability.

This offers the disabled individual the opportunity to use those dollars to best meet their own unique needs. However, it comes with the responsibility to create a plan, a budget, and find your own resources to make the plan a reality.

No centralized source of resources exists. The purpose of this blog is to direct others to resources in our communities and to provide one example of a self-directed plan. (*Caution: The self-directed plan described at the beginning of this blog is for an individual with a 5/5 needs rating, the highest possible rating in Maryland, and therefore the highest budget possible. Most will have a lower rating and a lower budget to work with.) It is also to share firsthand knowledge of experiences that may assist others who self-direct services.

Comments are welcome. Please share your knowledge with others.

Wednesday, July 4, 2012

Trying the NAC

So many new treatments that I read about, that show promise, require prescriptions and are still years away from FDA approval. NAC is not a medication. It is easy to acquire without a prescription, from the same source that was used in the original study. While the study was quite small, I found the results to be impressive. This is something I can try, with the risk of only some digestive upset, to help the irritability that plagues Valerie. Here is the link to the original article about NAC as treatment for irritability in people with autism; http://www.ucsfcme.com/2012/slides/MOC12001/OHANLONarticle.pdf
I purchased the same PharmaNAC effervescent tablets online from BioAdvantex Pharma, Inc.  The website is www.pharma-nac.com  .  It was $18.50 us dollars per box, plus shipping for 20 tablets. The shipment arrived within a couple of days. I started Valerie on one tablet in the morning a week ago. The first day I tried dissolving it in water, since the box says it is wild berry flavored. She took one sip and pushed it away. I added a flavored drink to the water and she drank it all without incident. The first day she had a little upset stomach once in the  morning, but has not had any problems with that since. I would say that, at 900 mg, once a day, she has been calmer and less irritable than normally, so far. After only one week, I am encouraged, but it is still too early to tell if the good week is because of the NAC or merely a coincidence.
In the study, they used one tablet a day for 4 weeks, then increased to 2 tablets a day for the following 4 weeks, and finally 3 tablets a day for the 3rd four week period. The increased doses did bring lower incidents of irritable behavior, but not as dramatic an improvement as the first two weeks did. Given the cost, and the fact that it will not be covered by insurance since it is not a medication, I am not sure I would commit to more than one tablet a day for the small improvement it might offer. I will have to wait and see. After one week, I see no downside to this treatment other than the cost.
The warnings on the package say that it has not been tested on adolescents under the age of 18, and warn against dosing in combination with dairy products. It also says that bedtime dosages will not interfere with sleep.