Be Wary When Feeding THICKENERS To Your Special Needs Child.

It is four months today since my daughter, Carys, stopped taking thickeners in her fluids. I think it’s time to warn you what thickeners can do to your child, as we have experienced for ourselves first hand over the last eighteen months or so. No-one will tell you any of this when they prescribe thickeners for your child. Everything you will read in medical and industry literature will tell you how safe these products are. BUT THEY’RE NOT. Just google ‘thickeners and constipation’ for yourself; you’ll be blown away.

This is our story.

Carys did not drink fluids, at all, for three years. Speech therapists introduced thickeners as away to get her drinking again. Faced with a wall of eight superficially smiling speech therapists, three radiographers, a strange high-chair, and a huge x-ray machine, Carys commenced screaming, and therefore choking, all the way through her barium swallow test. The results were inconclusive, I was told. best start her on thickeners, just to be on the safe side. I had misgivings; I didn’t believe she had any swallowing issues, but they were the experts, and I was intimidated.

I tried various feeding cups until I found one Carys liked. About three months after she started drinking, the periods of screaming started. They would last for about four days, often did not stop at night, and recurred  in a cycle of every ten to fourteen days. I was at my wits end; she seemed in such agony, yet doctors could find nothing wrong with her. Finally, one morning I took her out of her cot, and her nappy was bone dry. She was drinking about a litre of fluid a day, more than she had in years, and yet her nappy was completely dry, something which had never happened during all her years of not drinking anything at all. We went to A&E.

Poor Carys's swollen belly when constipated.
Poor Carys’s swollen belly when constipated.

Carys was diagnosed with Chronic Constipation and Impaction. Her bowel had swollen so much, it was pressing against her bladder and preventing the escape of urine. How could this have happened? If anything, I thought she was suffering from diarrhoea; apparently, liquid stool is a sign of constipation, but who knew that? She was started on a high does of Movicol to liquefy the impaction and keep it all moving, and was warned that it could take up to a year for the bowel to recover and begin to function normally.

A few days later, the Movicol took effect. The less said about that, the better! But finally, Carys had some relief. I consulted a nutritionist, began counting her daily fibre intake, and that was the end of that…or so I thought.

A week later, Carys was screaming again. And so the cycle continued. Even with all that Movicol (up to ten sachets a day) and her daily requirement of fibre, and regular enemas. I investigated the causes of constipation; lack of fibre – definitely not; not drinking enough – no, it only started after she increased her fluid intake; lack of exercise – difficult one to address in a non-mobile child; lots of medication – yes, but I couldn’t stop those, and anyway, her prescription had not changed in years, so why would it be causing a problem now? I was convinced that Carys must have some other underlying condition. Her older brother had been born with Hischsprungs Disease; could she have it too? Unlikely, doctors told me. What about her Thyroid? Tests proved it normal. Diabetes? No. Ok, so maybe it’s something else, like a twisted bowel, or a blockage? Xray and ultrasound could find nothing wrong. Finally, a doctor said there was nothing more he could do. Let me just say, that’s the wrong thing to say to a stressed and weeping mother at the end of her tether, carrying a child screaming and writhing with unexplained agony!

There had to be a reason. This was not normal behaviour for Carys. But it seemed only I believed that. It was now a year later. Carys had missed a lot of school. Her development had not moved forward at all during this time, in fact, she had regressed. She was no longer the happy, loving child she always used to be.It was impossible to take her anywhere, she would scream the whole time. All she wanted to do was rock on her belly on the floor of her bedroom, where she felt most safe and comfortable, I suppose. If anyone out there believes constipation to be only a mild, temporary condition,  I say to you, think again. Carys’s pain and unhappiness was affecting the whole family. Do you know how it feels to watch your child in agony, and not be able to do anything to help her? And let me just add, I’m no selfless hero; there were times when Carys’s screaming got to me so much, I just wanted to close her bedroom door or leave the house, so I didn’t have to listen.

foodAfter months and months of racking my brains, I began investigating the side effects of all Carys’s medicines. None of them especially listed constipation as an issue. Then I investigated her thickener. It was made from maize starch. In this country, maize starch is called cornflour. Everything I read said how safe it is. But then, it’s big business; any negative effects would be kept hidden, wouldn’t they? But when I googled thickeners and constipation, there was a flood of concern. When I read a speech therapists report on a nursing home in the UK, where there was a high incidence of dehydration and constipation linked with a high mortality rate, I was convinced. I discontinued the thickener immediately, and guess what? Carys could drink all her fluids fine, no choking or aspiration whatsoever, even when taking water. I couldn’t wait for the summer holidays to start, to trial my theory more fully; the school had to cover themselves by following speech therapist recommendations. I could do what I wanted.

On July 21st this summer, Carys had her first day completely free from thickeners. SINCE THEN, CARYS HAS NOT BEEN CONSTIPATED ONCE! We have decreased her Movicol to three sachets daily. She has not had a single enema since July. And she is having a bowel movement every day. Oh, and she has never choked on her fluids, or inhaled any, either.

Before Carys went back to school, I went to see her doctor and explained my theory, prepared for a battle. “Ok,” he said, looking at the report from the swallow test. ” I don’t know why she was put on thickeners anyway; there’s no evidence of aspiration in the report. I’ll write a letter to her school.”

SAMSUNGFour months later, Carys is well and happy again, just like she used to be. She can hold her own cup now, and drink the whole lot by herself. She is stronger, and participating well in her physio again; her walking (in her walker) is better.

It’s not coincidence. I believe thickeners in large quantities are not safe. If your child is suffering from constipation, but doesn’t take thickeners, look again at her diet. Corn flour/ maize starch is added to lots of foods that you wouldn’t think needed it. It’s usually GM modified, too. Be wary of ‘hungry baby’ milk formulas, check their ingredients carefully. Hospitals and care homes use thickeners in everything. A couple of spoonfuls used to thicken a sauce or gravy won’t do any harm, but more than that might, depending on your child’s sensitivity. I don’t want to scare anyone, but it took me a year and a half of stress and suffering for Carys to find this out for myself. I’m sharing our story, in the hope that it might help someone else.

It's nearly Christmas!
It’s nearly Christmas!

Of course, there are many conditions which can cause constipation, so always get checked out by a doctor.

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