In my search for a Dentist who works with children who have special needs and particular issues with their oral senses, I stumbled upon a DAN Dr. in Santa Fe. I feel that I have done searches for this in the past years, but never found anyone; but there he was. So I called expecting to get the usual five-eight month out appointment, and BAM, they had an opening the very next day. So we hopped right on it!
I typed up my usual information sheet which outlines our therapeutic history and our strides. Also including his current diet and our current concerns. Thank goodness because when I got there they were a bit upset that I didn't have the 18 page history packet that they usually send out to new patients. Not my fault obviously because the appointment was from the day before, but none the less I am bothered that the DR didn't have it to review. Although my little two page sheet was of some help (minimally).
So we go, and he is the usual eccentric, way too smart, egotistical, socially challenged specialists we are accustomed to seeing. All that aside, they are usually the best and they know their stuff! So we sit down and he begins to ask why we aren't Casein Free yet, I knew this would be the hit I took walking in the door, and I knew it was going to be the beginning of us taking that next step, so that was all good. Then he began explaining to me that he wanted GM to begin the Methyl B12 regimen. This is a shot every three days of 3cc of Methylcobalamin. It is administered by me and the concept is that it will help us to make another leap in function. Read here for more info.
He then proceeds to ramble off a list of books for me to read, and research for me to do and gives me a prescription for Diflucan for yeast and writes a few supplements down for us to begin at home.
So, that was that.
He did say something that resonated with me, because it is true, and it gave me some hope that this man is indeed experienced with what he is talking about and that he could become a good resource for us. He said that "you are the expert, I am just the facilitator for what you want to do for your child, you tell me what the next step is". I agree with this wholeheartedly and have always known that while we see this specialist and that therapist, in the end, it is the parents who are driving the bus, making the choices and navigating their child through this forest of options and theories. So having him recognize that, gave me hope that this guy might be okay after all. But the jury is still out. I haven't decided yet.
Driving home, my mind is just reeling. I'm asking myself questions like, how good is "good enough"? How far do we go before we can say, we did all we could? At what point is the balance between intervention and obsession? Can continuing to intervene actually make enough difference to make the realities of the intervention (shots every three days) worth it? At what point do the interventions actually become more life inhibiting than the diagnosis? If we didn't do the shots, is there this whole different level to GM that we would be keeping him from reaching? Could this be the bump that puts us into meaningful friendships, love and marriage? Is it possible that we have become so accustomed to who he is that we can no longer see the potential that could exist for him? Or as he said it, "which parts of me are the Asperger's, and which parts are just me"? It used to be easy to see, it used to be easy to point out what areas concern us, but now it is much harder, like needing a microscope to see clearly instead of it being obvious to the naked eye.
So now I am trying to determine our motivation, and our choices as to how far we choose to go. I know that until I make this determination I cant make a decision regarding the choices before us (methyl B12, hyperbaric O2 treatments). It is a process, an ongoing, often life-changing process.
Sunday, February 11, 2007
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We started the MethylB12 last fall, and now do it daily. I have always decided to do the minimum of intervention needed, but I think it made a big difference and is worth it. The needle is VERY tiny, if that helps! :)
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