Sunday, April 15, 2012

Biomedical Update: Leucovorin

Kai has been in great spirits for the past few weeks. He rarely angers, and seems more flexible. Beyond that, his communication skills have taken a leap forward as he responds much more often and quickly to our attempts to interact with him. And I have noticed increased communication when he is with other kids as well.

His school noticed the change as well, even telling us the other day that he is “a completely different Kai.”

So the question is why?

I have a couple of theories.

Of course, the therapy that Kai receives at school and with private therapists has to be a factor. But the timing and dramatic nature of the change indicates that there may be something else at work.

As mentioned before, we changed psychiatrists and medications earlier in the year. The new psychiatrist currently has Kai on a combination of a non-stimulative ADHD drug, along with a small amount of Resperidone. The amount of Resperidone is apparently small enough not to trigger the side effect of massively increasing his appetite that we saw before under a higher dose. And I believe that the reduction in anger and increase in focus is, in part, due to the medication.

But I think there is also something else having an impact.

A few weeks ago, we started a new biomedical treatment after tests suggested by our DAN! doctor indicated that Kai was deficient in folate receptor antibodies.

A relatively new study indicates that low folate levels in the brain are common among children with autism, and that this condition can result in an array of neurological dysfunction.

The treatment for this is a very high dose of folinic acid in the prescription form leuvocorin, and a dairy-free diet. In this early-stage research, the children treated with leucovorin had significantly higher improvement ratings over a mean period of 4 months than the control group in verbal communication, receptive and expressive language, attention and stereotypical behavior.

Kai has shown improvement in exactly those areas, and the timing of it ties more closely with the introduction of leucovorin than with the traditional meds. And so, I believe that the leucovorin is having a big impact.

I am usually not one to say that about any of the treatments we have pursued. Usually I am cautious about attributing improvement to new treatment we have pursued. But in this case, I am encouraged.

Of course, we will keep monitoring it. And I will try to keep you posted.


  1. I have read about folinic acid but didn't know there was a prescription form. Very interesting...and I'm so glad it is working for Kai. :)

    1. It is interesting, Betsy. I will be keeping an eye out for more studies, as well as continuing to monitor progress with Kai.

  2. Good for all of you. I am especially glad for Kai. The best approach, is the one that works the best. It seems Kai is headed for much better days. I am happy for all of you.

    1. Thanks, Shiroi. It is definitely nice to see Kai doing well.

  3. How is Kai doing? My son is 12 and I have just started in him on Leukovorin about a month - how long to see changes?

    1. Hi Holly, it is interesting to get your comment today. We let Kai's leucovorin prescription lapse some time ago, and he seems to be having more anger issues lately. It is hard to say if taking him off leukovorin is related to that. I will say, though, that when we first put him on leucovorin, he showed improvement in just a few weeks, especially in language and communication. Have you noticed any changes with your son yet? I'd give it at least a couple months to see. Best wishes to you. Please follow up and let me know either way. I am interested to learn of the experiences of others.


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