Saturday, September 3, 2011

Our experience with D-Ribose

 In early summer I came across a study of NADH and D-Ribose supplements in autistic children:

The researchers wanted to see if the supplements could offset some of the unique biochemical deficiencies seen in autistics.  Here is a summary of the findings:
"Results: The NADH group had significant improvements in levels of ribose-5-phosphate, GSH, NADH, NADPH, and SAM. The Ribose group had significant improvements in ribose-5-phosphate, NADH, ATP, and folic acid. There was no significant change in GSSG in either group after two weeks."

Nervous, but I've been researching autism's biochemical pathway's and understood that if true, it could be the pharmacological intervention I'd been hoping for: directed and homeopathic.  So I read the study, and bought 5MG NADH tablets and 5,000MG D-Ribose power from a local store that specializes in vitamins and supplements.  

I first tried both together, and the early results were impressive: increases in social cleverness, empathy and intuitiveness; Increases in motivation, energy levels, and interest in team sports; Reductions in repetitiveness, skin-picking,  and negative thinking, but he over-stimulated.  Rereading the study, I realized the NADH and D-Ribose were studied separately.  So then we took him off for a week, and then tried them separately at 2 week intervals.  Between the 2, I prefer the D-Ribose.  The NADH did result in some positive affects but he was more emotional and prone to over-stimulation, and it was difficult to administer as compared to the D-Ribose (you have to take the NADH 30 minutes before you eat, and my son has difficulty obeying the admonition strictly).

Overall, I'm very impressed with the D-Ribose as a supplement.  I took it myself - the immediate effect is the feeling that you drank a good bit of coffee in a short amount of time, which wears off in an hour or so.  It looks, smells, and tastes like non-dairy creamer powder so my son has it in his chocolate milk.  The 2 negative side effects I have noted are the feeling of physical rush just after taking it and an even greater difficulty falling asleep.  For the sleep, my son takes melatonin 1MG sublinguals a few times a week.  I don't have the laboratory tests to back up the increases in his biochemical markers, but the improvements in those behaviors and traits that were problematic are evident and marked.  My son is still autistic - he is still as interested in Titanic, and just as apt to hyper-focus on it - however, D-Ribose seems to "unstick" that lever that trapped him there so often before.  Yes, he's thinking about Titanic...but he's able to let it go when he should 

I'm not affiliated with the supplement industry in any way, and hope no one feels I'm trying to sell anything.  I'm just relaying our experience in case other's are struggling to find something to alleviate the problematic symptoms of autism.  We've tried all the ADHD meds with limited positive effects, and lots of negative side effects.   Right now, no drugs have been designed strictly for autism so many take other medications off-label, sometimes with troubling side-effects.    


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  3. I've read and reread your comment a few times, and here's what I think you are saying: That the benefits of the d-Ribose supplements are mediated by a complex gene/environment interaction and through interpretive constructs, made unique due to my sharing ASD traits with him? You're really are a big thinker, ColinB, and your writing shows it! I'm known for my ability to quickly mince research papers and medical studies, find the important points, but I'm struggling to keep up with you!

    Hopefully I'm right in my interpretation, and you bring up some important points that have not missed my consciousness. What role does my ASD traits play in my parenting of not just my ASD son, but non-ASD daughter? I've never feared about my ability to relate to my son, it's clear I understand him all too well; I have feared that my deficiencies in skill set's would turn out to be a detriment - ie modeling maladaptive behavior's that I'd prefer he not adopt. If nothing else, becoming a parent has given me the impetus to confront and overcome some unfinished business I had put off too long.

    The bigger question you pose at the end, which I believe is your main point: how would autism research be different if the researchers were themselves, autistic? One of the early flaws I saw in autism research, when I first started out was the flaw of studying autistic children against their non-autistic parents and siblings. Yes, some cases of autism are de novo, meaning not inherited, but in a great deal of cases autistic traits are evidenced in the parents, siblings, and extended relatives. I think this flawed model has set back autism research considerably.

    So without getting too far into it - does my ASD affinity alter my son's course with this supplement? Sure - it's not a cure. To someone who see's autism differently than I do, might deem it to be a failure if it does not cure autism. To me, autism offers some beneficial skill sets and traits that I wouldn't want a cure for; still, to merit a diagnosis as my son has, means those benefits are coming with some hindrances as well. In my case, I get many of the benefits without most of the hindrances (hasn't always been the case). Right now D-Ribose is offering such an outcome: maintaining the benefits of autism and minimizing the hindrances.

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  5. You shouldn't call Ribose or vitamins or natural chemicals homeopathic. Homeopathics are water and based on mysticism. What you're using is natural medicine, or biomedical medicine. When people confuse the two it gives pharmaceutical lobbies and groups the chance to claim we're all clueless because we're using homeopathics, which are a fraud, but we're not actually using homeopathics, people are simply confusing the meaning of the word.