Wednesday, December 30, 2009

The continuing story - a referral to a dietician?

december 30 2009



I hate being late at an appointment, but this morning was the one time a year event.
We got stuck at the local train station because the bus we needed wasn't scheduled, and others just didn't arrive. We were 15 minutes late.

Yet, the psychiatrist had to read my sons files while we sat there, forgot to ask how the new dosage of Abilify worked out (no change at all, in fact the change between taking and not taking is only minor: a bit more relaxation between the aroused emotions and behavioural problems. They haven't diminished in number en maybe even intensified in quality.)

But we had something to talk about.


Well, well, well, after begging for help for over 6 years the miracle happened: my autistic son will be referred to someone with experience with eating disorders.

To be honest, it was kind of vague. His psychiatrist will talk with someone who has experience with it. So maybe the result will again be zero, nothing, nada.
But at least it gives a feeling that someone has heard something from my shouting.

He also mentioned a dietician, but I hope that was just to say something and not meant in a serious way.
I know what to cook and what not, and I do.
My other children have normal weight and are very healthy.

He doesn't need a dietician to find a diet that makes him loose weight without hunger feelings.
He always feels hunger, no matter whether he's eating, just has eaten a huge meal or should be plain hungry.

He needs other help.

Point is that there are two matters of concern with my autistic boy.

1.
We're caught between his enormous urge to respond to his feelings of hunger and his behavioural problems.
He can't deal with the hunger, can't label hunger for what it is. It causes a general feeling of not being well, and he acts upon that feeling.

So either we keep him hungry and he acts on that... which means meltdowns and the results of it, or give him what he wants.

For outsiders the choice may seem clear, and in other cases the choice is as clear as can be: no food - healthy kid - problem finished.
In between deal with the behavioural issue. In normal kids the behavioural problems can be treated with ABA techniques, positive reinforcement and even congitive therapy/support, and it'll die down.

In his case that doesn't work.
We've been there, I've used all my skills. Resulting in a 20 hours of the day constant focus on the issue, a child constantly struggling with his hunger and a hell to live at home for everyone else concerned.

We're so far that he doesn't eat more than normal during the first half of the day, but we're not able to tackle the problem during the rest of the day.

2.
What worries me is his constant feeling of hunger.
Even during a meal, with his mouth full, he can ask for more.
At moments that we experience that we've had enough, his body begs for food.

The psychiatrist agreed to send him to a neurologist to exclude problems like a hypothalamic dysfunction.

Well, we'll see.
After all those years it's something. Not more than that.

For the rest the meeting was nothing special.
It's clear they won't invest in helping him to see why he doesn't want to go to daycare.
I so wish I live elsewhere, where people want to invest in every case of autism.
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