Tuesday, May 25, 2010

To What Can We Attribute This?

I'd like to share another snippet of the conversation with Joy's excellent primary care doctor, from the appointment at which we reversed course on the surgery.

After I had recounted several aspects of the wonderful new developmental stuff that we've been seeing with Joy, he asked me a question. I don't remember his exact words, but the sense was: Why do you think this is happening? What's the cause, do you suppose? To what can we attribute this?

My answer was along the lines of: well, we don't really know. We haven't really tried anything new. Maybe it has something to do with springtime. Maybe we've just finally had the seizures under control long enough. Also all the good work we've been doing with intensive therapy -- and, of course, she's growing up!

He affirmed my assessment of the situation.

(Interesting to think that it if it had been "neurotypical" Rose who'd had a huge developmental spurt, nobody probably would have even thought to ask the question...)

Now just think how different that assessment might have been if we had decided in, say, February to start Joy on the GFCF diet. Or hyperbaric oxygen therapy. Or any one of the therapies from the "alternative intervention assignment" we did in LEND seminar.

We might then consider Joy living proof of the miracle powers of whatever-therapy, even though all the gains would have happened anyway.

This thought isn't original with me. I've cribbed it from Viktoria at Conductive Upbringing, who recently told such a story about India, a lovely young lady who has cerebral palsy. Recently and unexpectedly, with no new therapy to attribute it to, India suddenly grabbed and slurped an entire glass of pink-milk through a straw, where previously she'd demonstrated no willingness or ability to drink so much, so unassisted.

Viktoria tells this story in a well-documented, evidence-based, thoughtful post about the hyping of stem-cell therapy as a cure for cerebral palsy. In previous posts she took on hyperbaric oxygen therapy (yes, the purveyors of HBOT would have you believe that it works wonders for CP as well as autism), and magnetic therapy.

Fortunately, since India (like Joy) was not receiving any such therapy at the time, we can celebrate the amazing powers of human development. What miracles we are, every one of us, when you come to think about it!


Viktoria said...

Thank you JoyMama, and I agree: the miracle is inside us, it's in every human being's ability to learn.
Stem cell therapy is "recommended" for autism, too, as well as for seizures. It works for everything of course.
Parents returning from the clinics will report all sorts of improvements, not knowing that those have nothing to do with stem cells. However, in case of seizures it would be difficult to report that the seizures have gone away or became less frequent or shorter when they didn't. And here's what one of those parents reported: (I copied this from the comments on the CBS link):
"I have fallen into this trap and took my 5 years old daughter who has is still dealing with Epilepsy to an American Doctor who performs the stem cell treatments off shore in Mexico and the Dominican Republic. 2 times and absolutely no improvement, and 35 thousand dollars cash. A California Doctor who promises cure for almost all conditions and diseases. Thank you 60 minutes for the report, I wish this came a couple years earlier, but never too late. Thank You"

Anonymous said...

This is something I have thought about often. How can I know for certain if changing Charlotte's diet or adding this or that supplement (of which I've added very few) is reason for any gains I've seen?

What I have observed is that these changes haven't done anything like suddenly give Charlotte the ability to use language better. That would seem to be a stretch. What I have determined is that if I see an immediate change, like 1-2 days, it's the result of something dietary. Like when we removed milk, she quit having multiple tantrums and screaming fits daily. My theory is that it's because she's lactose intolerant and she was having pain from drinking milk, but b/c she's also ASD she didn't communicate that pain verbally, but instead would scream at us.

Many GFCFers feel that you have to give gluten-free in particular 9 months to see if it works. That makes no sense to me. 9 months is a long time in the life of a child and many developmental changes could naturally happen during that time. How can one go back and say it's because gluten was removed 9 months ago?

I am quite happy to hear that Joy has been using her words more to communicate. I agree with your assessment that she is growing up!

Hopefully a wonderful summer is in store for you!

JoyDad said...

In addition to all the things JoyMama mentioned, we have kept the seizures under control for almost two years without changing the dosages of Joy's seizure meds. During that time Joy has grown considerably. Since the neurologist calculates the dosage based on her weight (mgs of medicine per kg of weight), it stands to reason that the levels of the meds in her blood have dropped somewhat (although we don't know for sure how much, haven't had the blood work done to determine that).

The seizure meds can have side effects including cognitive impairments. So maybe having lower levels of the seizure meds coursing through her veins has contributed to her incredible gains this spring.

Whatever it is, we're glad it's happening. Go Joy!!

One Mom said...

Hooray for Joy! Miraculous, indeed.

Anonymous said...

so happy to hear about joy's amazing gains!!!

jess said...

it is so hard to isolate any one thing that we do for our kids as the one that makes 'the' difference. so often, as you've said too, i am convinced that it is instead the confluence of various treatments, therapies, teaching methods etc that lead to these monumental changes. either way, i call them miracles, but i applaud you for calling it as you see it.

Elizabeth Channel said...

I just echo GoodFountain, and say hooray for Joy!

I had no idea about all that stem cell hooplah.