I was going to write about something entirely different this week, and then this happened.
Carys’s paediatrician : So, I last saw Carys in August, and you thought her (chronic) constipation (and faecal impaction) was due to the thickener prescribed for her fluids. (Please note: the bracketed words are my own insertions following diagnosis, which he failed to include.)
Me (confidently) : Yes, I’m convinced of it. Since I stopped giving her the thickener, she has been a different child. There has been no constipation.
Paed (raising eyebrows and staring at me over the top of his glasses) : Really? I’ve never heard of that before.
Me : Well, it is made from corn or maize, which can have adverse effects on people suffering from constipation. I’ve read about some new studies which indicate that low fibre diets are better for people with poor motility of the gut, like Carys.
There were five other doctors in the room at the time, all the paediatrician’s acolytes and sycophants. As I uttered these sacrilegious words, six pairs of eyes bored into me, all laden with varying degrees of disbelief and contempt at my ignorance. I felt the heat rising in my face, and hoped it wasn’t accompanied by blushing.
You have to realise that Carys’s paediatrician’s area of expertise lies with the gut and its functions; before I met him, I had no idea that poop had been officially graded into seven textures called the Bristol Stool Chart…google it if you don’t believe me! You’ll soon be whiling away many a happy moment staring into the toilet bowl and trying to assess your state of health according to the Bristol standard.
Now, don’t get me wrong; Carys’s paediatrician is the best this side of Dublin, and I’m very grateful to have him in our lives. Judging by the reactions of her many specialists, he is very highly thought of by the medical fraternity. I know he must have worked incredibly hard to climb to such lofty heights. Yet there I sat, in his office, redefining for him the role of fibre in the human diet.With such a frosty reception to my hypothesis, I no longer felt quite so confident, and my well thought out arguments seemed to dissolve into…well, verbal diarrhoea, while we’re on the subject, to be quite honest.
Me : Um…I’ve put her on a low fibre diet, too, and we’re avoiding gluten.
Paed : A high fibre diet is better for issues of constipation…
Me (interrupting quickly) : Not for someone like Carys who has low motility. (Defensively now, with nervous laugh) Well, whatever I’m doing, it’s certainly working for Carys.
Paed : Hmmm…(writes something down in his notes)
I could tell he wasn’t convinced, and why should he be? We have all grown up believing that high fibre, brown, wholegrain is best. To be blunt (some might say cynical), high fibre is big business. Doctors, world health authorities and government health departments have all backed this school of thought. No-one’s in any hurry to make a U-turn at this stage, despite the growing number of gastrointestinal diseases, such as constipation and IBS. I should have used the traffic jam scenario; the more traffic you add, the more congested the road becomes. It’s the same with fibre. If you have too much for a weak gut to shift, adding more ain’t gonna help.
Me (feebly) : I’ve even got her Movicol down from six sachets to three…
Paed (stops writing, lays his pen down and looks at me) : Movicol is just a stool softener. She can quite safely take it for the rest of her life.
I clamped my mouth shut. I knew I was beating my head against a brick wall. He just didn’t get it. Although we had the same aim, Carys’s good health and well-being, we clearly both looked at it from completely opposing viewpoints. As a parent, I would do anything to limit the amount of chemicals going into my little girl’s frail body. If there’s a natural way to achieve the same result, I’m going to find it, because I’m not just a parent, I’m a Parent-Detective.
Thickeners usually come as a white powder. The more you add to a fluid, the thicker and stodgier it gets. If it can do that to a liquid, what is it doing to your insides?
The metamorphosis took place a year and a half ago, when this all started, Carys’s bowel was so impacted and swollen, it pressed against her bladder; she couldn’t pee and she couldn’t poo… no wonder she screamed day and night with pain. It kept recurring. Scans, ultrasounds, blood tests revealed nothing. All the experts said nothing was wrong. They began to talk about behavioural issues, but I knew her cry was one of pain not temper. I knew something was wrong, but no-one believed me. Meanwhile, I watched my daughter screaming and writhing on the floor in agony day in, day out, watched her hard-won development regress, and felt helpless. When I stood in the doctors office holding my screaming daughter, with tears running down my face, and he said to me, “There’s nothing more I can do.”, I knew I was her only chance. That was when I truly became a Parent-Detective.
(Btw, I do forgive him for saying that; he really had tried everything he could think of. He is a doctor, not a god, and human bodies aren’t all alike. There’s so much modern medicine can’t cure. But it was so easy for him to turn away. A parent can’t do that, wouldn’t even if they could. I needed help for my daughter, and support. That’s where he failed.)
I researched and researched. I talked to other parents. I observed Carys, even though it broke my heart. And I realised that if there were no physical issues causing the problem, what was not coming out had to be caused by what was going in. Tried various things. And finally made the connection. And I, no-one but a mother, just me, I solved the mystery for my daughter, and I made her better.
I did that. They might scoff at my ideas, which fly in the face of everything (they think) they know, these doctors, but after eighteen truly horrible months, with all their expertise and experience, they couldn’t fix my daughter. Doctors nil, Parent-Detectives 1.
As I walked out of the doctor’s office, the paed looked up at me and said, “I’ll have to remember that about the thickener.”
Correction…I think the score just changed. Doctors nil, Parent-Detectives 2, I believe.
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