Today, again, I collected photocopies of pathology results from a doctor, in much the same way I gathered a toothbrush, spare undies and that ugly emergency work outfit from past ex's bedrooms and walked away. I made an appointment to catch up in the new year, but we both know we will have moved on by then.
Dr Poo is not the first doctor I have had this relationship with, and I'm sure he won't be the last. It's just that we need different things. It's just that we don't have the same ideas about the future. It's not him, it's me. Well, it's my son, but that's a whole other tangent.
Dr Poo is a fine man. Let me begin by saying that. And he's a fine doctor too, no doubt about it. But he understands autism like I understand The Lord of the Rings. Not at all, for those in the cheap seats, with a vague sense of curious revulsion (Gollum) and confusion (all the other freaking characters). And as it happens, I have a similar level of medical knowledge, so I have no cogent comebacks to his doctoral pronouncements.
He proudly poked Billy's stomach today and pronounced him 'emptier than ever'. Billy, while enduring said poking, announced 'That tickles!' (a script from Roary the Racing Car). Dr Poo responded with, 'How fantastic! It's not hurting him at all!'
No, it's not hurting him. Because nothing hurts him, nothing ever has. Or at least, nothing did hurt him much until we started sensory integration therapy.
I wonder, Dr Poo, if you've met autism, or indeed Billy's individual brand of it. He does not feel pain like we do. He never has. In fact, many sensory receptions and expressions are unique. He's the one who has endured reflux that would knock an adult down, without complaint, remember? He's the one who has had a hernia since birth, and no one knew because he didn't complain (in the traditional sense). He's the one who spends half his life lying with his tummy stretched over the arm of the couch, the edge of the trampoline, the pile of pillows he's made on his bed attempting to relieve the discomfort he registers. He's the seven year old who has been vomiting since you put him on laxatives and reflux drugs.
He's my son, and I'm wondering if you have listened to anything I've said in the last four months.
Dr Poo's response to my barrage of questions (actually just the word 'why' leading off an infinite number of questions made up of words I have already forgotten) was to distance himself and say, 'I don't know. I really don't know. I don't know the answers to the questions you are asking me (the flashbacks to my twenties relationships with tortured boys with guitars are intense right now). But I'm sure there's a man (sorry, doctor) out there who does know those answers. I just cannot remember his name right now, but I will, and... I'll call you. Yes, I'll call you. Soon. I really will.
In all seriousness, Dr Poo acknowledged that Billy is not well. He acknowledged that Billy is less well now than when we first came to see him. We had a child that could not poo appropriately, now we have a highly anxious, cyclic vomiter who still poops pebbles without drugs.
Dr Poo acknowledged that he does not know why. We have the same aim - a healthy (i.e. pooping and not refluxing child) but we have different thoughts about how to get there.
I, for example, do not want to contemplate putting my 7 year old on anti-anxiety medication when he did not suffer from anxiety until we started giving him chemical laxatives and PPIs. Dr Poo thinks it might be a good idea. I have no interest in giving my 7 year old drugs clonodine on the off chance his neurotransmitters are off kilter, without testing said neurotransmitters first. Dr Poo thinks it might not be a bad idea. In fact, last time I looked, we went to Dr Poo to address the fact that our child was pooping his pants with something approximating gay abandon. Suddenly I'm supposed to contemplating giving my child anti-depressants and blood pressure meds to get him pooping in the toilet.
Um... no.
Seriously, it's not you, it's me, Dr Poo. No more.
Dr Poo did suggest we go to a geneticist. And I agree, we should. I have a feeling that geneticists are the folk that people who have no answers are sent to, and I pity the fool we will see, to be honest. I'm hoping this guy (as I know he is male) will have the people skills of Oprah
and Stephanie Dowrick
combined, because he's gonna need them.Every single diagnostic physician we have been to has said the same thing about Billy. One word - atypical. Yeah, autism, but atypical. Yeah, hyperacusis but waaaay atypical. Yup, that's Transverse Myelitis but it's definitely atypical. Yup, this kid has gut issues, but they are quite atypical.
We have some clues - high iron/ferretin/b12 levels despite zero iron intake in the diet and no evidence of haemachromatosis, high bicarb levels, odd IgA and IgG readings but no coeliac evidence, declining Vitamin D without any change in activity or diet, hyper mobility in the extremities, high palate, crowded small teeth, soft nails, bilateral ptosis, positive Gorlin sign, silent reflux, low motility, hyper intensity in the outer surface of the brain in his MRI, tiny cerebellar cyst, odd blood sugar behaviour, keratosis pilaris or some odd lumpy skin on the knees and ears, bizarre reactions to vaccines/drugs/homeopathics, fine and gross motor delays, myoclinic jerks, intense hyperacusis to vocal sounds with possible canal dehiscence, oh... and autism.
But they are just clues. And I am not Dr Poo, or any other bodily fluid Dr. I am a kids TV writer, and a sightly crap one at that (more about that in another entry).
And so we return to my original plea.
Dr House, if you exist, in real life, particularly in Australia (but we're not fussy)... could you help out? Are we ringing any bells? Are we singing your song? Are we tickling your ivories? (or is it tinkling your ivories...?)
I would like my child to be able to take a dump consciously and healthily without drugs. I would like my child to not freak out when his dog barks or someone coughs. I would like my child to be safe and able to learn at school.
Or if that's not possible, a gigantic lottery win would be awesome, so we can fully employ his wonderful tutor and settle into a counterculture existence in the centre of Australia's biggest city.
Or if that's not possible, please send giant dragons to spew fire at the hair of intolerant politicians and shock jocks for my amusement.
Hey, a girl's gotta be able to dream, right?
5 comments:
I sound like a broken record on your blogs lately Val but this just sucks.I am angry for you that this is so damn hard and so unfair.I want to throw something at someone or something or turn into a fire spewing dragon so you get at least that much(C's school would argue that has already happened).
It just shouldn't be so bloody difficult. Here reading along and wishing Billy a healthy way forward, somehow, some way x
I am not really a huggy type of girl...... but I send you a huge hug! Shame, you all have been through so much, so sorry :(
Hi it also angers me that you are getting no where. My little man has ASD but I am blessed because compared to you he is a walk in the park, I hope you find someone who can help you, don't stop looking, you can't and I don't think you ever will until you are satisfied I guess that's your job and you mission isn't it? be strong Valerie
lots of hugs
Oh, how well you tell your son's tale with a very high dose of medical language! i have come to the conclusion that doctors are not infallible, they are human and we are right to question them. as often as we want. The most important thing a Doctor can be taught in med school is to listen to the mothers!
I do hope you get some answers re: your son's condition. My son, aged 11 and with PDD-NOS also has chronic constipation. He's on Movicol every day which is a safe option for him.
xx Jazzy
Post a Comment