Tuesday, September 16, 2008

Jonah's Miracle?

The very first book we read about autism - back before we got the official diagnosis, but knew it was coming - was Karyn Seroussi's account of how her son was cured of his autism through the implementation of a gluten-and-casein-free diet. So, for the next four years, we put Jonah on the same regimen: no milk or wheat products at all, which meant we had to buy special breads, pastas and pretzels made with rice or soy.

But it didn't cure him. It didn't help much at all.

There are many miracles in the autistic community. Kids have lost their diagnoses after being treated with vitamins, or chelation (a controversial procedure that removes toxins, such as mercury, from the body), or hyperbaric oxygen therapy. And we've tried a lot of those things. But none of them did for Jonah what they had supposedly done for other people's children.

I used to feel this incredible pressure to try every alternative treatment I heard about. Because what if Jonah's miracle was out there, but we never found it because I stopped trying? One thing Kennedy Krieger has done for us is relieve that pressure. Knowing that Jonah's tantrums were caused primarily by his mood disorder means that no diet, no B12 injections, no amount of oxygen could have "cured" him. Bipolar disorder is a medical condition, and requires medical treatment.

But now I'm thinking about miracles again. Because, although Jonah's aggression has virtually disappeared since he was prescribed lithium and abilify, his doctor at Kennedy has just started him on a new medicine that she hopes will help with the lingering irritability, crying and SIBs (self-injurious behavior, such as the hand-biting Jonah does when he's agitated) she is still seeing. This new drug, riluzole, is only FDA-approved to treat patients with Lou Gehrig's disease. But doctors have also seen amazing results treating psychiatric patients who haven't responded to traditional mood stabilizers - like Jonah, who has been on so many different medicines over the years, I lost track long ago. Clinical trials are going on at Johns Hopkins (across the street from Kennedy), and the psychiatrists at Kennedy have just begun prescribing it to their patients. The two who are now taking it, according to Jonah's doctor, have made enormous gains.

New drugs are exciting - so full of hope and potential. It's thrilling to think we may be part of the beginning of a great advancement in the treatment of kids like Jonah. Although I've stopped believing that Jonah will ever be cured of his autism, we sent him to Kennedy to solve the puzzle of his mood disorder. Giving him the gift of a tranquil mind would be miracle enough for us.

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