Butterfly grew up with food intolerances and was diagnosed with ADHD, Asperger's
Syndrome, and learning difficulties. Now she struggles with OCDs.
This is the story of how we have faced these challenges.

Friday, January 28, 2011

There's Progress, and then....

Moments of notable progress are difficult to achieve sometimes, and all the more celebrated because they are so hard won.

I am told by our doctor that OCDs are to be expected with Aspergers. He prescribed meds intended to control them, but they turned Butterfly into something of a zombie. Turns out that particular medicine also contained a sedative, which she simply didn’t need. Yes, she is hyperactive and yes, she has trouble sleeping, but whatever was in this drug had her sleeping 14 hours a day. This wouldn’t do. We don’t want drugs that just knock her out or change who she is. I don’t just love Butterfly, I like her. She’s a bright, funny, creative person and her restlessness is part of her charm. She needs help controlling her OCDs, which, I’m told, is a neurological problem involving serotonin. Drugs that help her specifically with this would be helpful; drugs that alter who she is, not so much.

We made a further adjustment in diet, as mentioned in the previous post. She had been using goat milk products because they didn’t bother her like bovine dairy foods did. Nevertheless, turns out, even though the symptoms differ, goat milk is a no-no too. She probably shouldn’t be having sugar either, but that’s a tough one at this point. I mean, I had her off sugar for eight years or so when she was little, but there were alternatives she could have, such as honey, maple syrup, etc. When she became allergic to maple and intolerant of honey that really only left artificial sweeteners, which we tried for awhile. Turns out they aren’t exactly healthy either. Yes, we know about stevia and tried it once. The stuff that was available then didn’t work so well. I hear it’s more refined now, and we may try it again. She probably shouldn’t be having gluten either... another tough one for a burger lovin’ teen. For right now, she’s trying to find treats that are sweetened naturally with fruit juices. Gluten is another story. And so we struggle on, as we must, because there just aren’t any easy answers or quick fixes and experimentation takes time.

Experimentation.... this brings me to a few more words on vaccinations and studies, aside from my page on this blog entitled, Autism and Vaccines. It would be helpful to people struggling to find answers if more people were working together with a fundamental understanding that not every story has to have the same beginning and end, though there are common elements. I have to say that I’m far more disappointed in the celebratory mood of some people at perceived failure, than I am in the results of any one study. This would hardly be the first time a study has been discredited and a doctor’s career ended by the threatening tactics of big money interests. I’m not saying I know this is what happened here; I’m just saying I’m not judging. I’m waiting. I don't think it's helpful if everyone is looking for a smoking gun while standing in a minefield. So I don’t understand why some people are so eager to dismiss the entire vaccine theory out of hand, based on the failure of this study. That makes no sense... warped logic, at best. I mean, if the science of the study was bad, then the study itself is null and void, as in, it proves exactly nothing. Nada. Waste of time. Temporarily dashed hopes for parents who observed the role of vaccines in their child’s development and want answers.

What saddens me is the apparent need of some people to rub noses in the bad news. I guess I’m old. I was taught that to do such a thing is nasty, to say the least. Perhaps I’m missing something... do these people have some sort of stake in this? I mean, I get it: their child was born with autism. All possible causes need to be more thoroughly researched. But am I supposed to rewrite my own personal history to suit the needs of those people? Because I’m not willing to do that. I can only tell my story the way it happened. Moreover, there are other parents who experienced something similar to what I did, with a plethora of anecdotal evidence that’s impressive to anyone who cares at all about truth. They aren’t about to rewrite their histories either. The issue of the role of vaccines in autism is not by any stretch of the imagination, finished. And yet, many people seem to think it ought to be.

Butterfly’s experience with vaccines when she was about 8 confirms for me that they are, for her, toxic. She stepped on a nail. Who wants to mess with tetanus? I took her to her doctor for a tetanus shot, but he gave her tetanus and polio combined. I don’t know how significant that is; I do know she was sick as sick could be for almost two weeks. She was old enough at the time to remember it vividly. Technically she is due for another tetanus shot, but won’t be getting one, any more than she will a flu shot. “Less sickness if I just get the flu, Mom,” she says. Thing is, we have no way of knowing if these vaccines even do a thing for her when they make her so very ill. More harm than good simply means no vaccines for Butterfly. Am I celebrating this? Are you kidding? It worries me. I mean, what if she wants to travel? What if she wants to go to some country known for some deadly illness? What if she steps on another nail? There is nothing simple about this problem. In fact, it’s frightening. So to those who think a toxic reaction to vaccines is a joke, laugh your asses off I guess. But I will continue to tell OUR story honestly. And I will continue to question what is in our vaccines. I will also continue to hope for answers.

In truth, I hope everyone is finding their own way along their own unique path on this journey we call life. My own priority is simple: my daughter. I am happy to share when we have either success or failure of something we’ve tried because maybe it will help someone else. Whether it does or it doesn’t, you can be assured that I won’t be rubbing your noses in any bad news that comes your way, because that just isn’t my style. Yeah, I guess I’m old or something.

2 comments:

  1. Catching up and sending you guys hugs.

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  2. Thanks ChickiePea! Hugs back atcha! :)

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