The Parent-Detective

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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.

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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) 

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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.

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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.

 

 

14 thoughts on “The Parent-Detective

  1. Hi, just found your site would like a bit of information about the thickener. I live in Zimbabwe and have a children’s home, 2 of my children have CP and they really suffer with constipation and swollen tummies, have been to the hospital a few times with them and they just can’t help. How would I get food and drinks into them without thickener.

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    1. Hi Dorothy, I gave Carys foods and drinks which are naturally a bit thicker, such as fruit smoothies, yoghurt thinned with a little water or milk, milk shakes. Soups are good, as mashed potato or blended veggies tend to thicken them up. Tomato puree is good for thickening up sauces. I gave these to Carys, and still do. Foods and drinks with thickener in them are very dehydrating, which only makes constipation worse. New research is indicating that a high fibre diet is actually not good for us, especially for those with poor motility in the gut, as it makes the stool bulkier and harder for a weakened bowel to move, so now I avoid giving Carys bread, cereal, porridge, baked beans, pasta, anything containing wheat, maize or corn. She has improved SO MUCH! But her bowel has suffered so much damage, that she is still not back to normal. She still takes a stool softener daily (movicol), I haven’t been able to wean her off it completely. And a couple of times a year she still gets constipated, particularly after she has been ill, for example, and so hasn’t been eating or drinking normally. Now I recognise the signs, though; I keep a daily record of all her bowel movements so that I always know if she has missed one, and when I see the signs, I increase her movicol and give her an enema. It takes a few days to work through (although the enema brings almost instant relief!), and then she is back to ‘normal’ again. I must stress though that I am not a medical expert, so if you are making any changes in the care of these children, please run it by your doctor. Also, all children are different, and these measures might not be quite so effective for anyone else as they have been for Carys. I am so very sorry that your children are suffering with this dreadful complaint; it really is so very painful for them, Carys would scream for days. People think constipation is trivial, but chronic constipation and impaction is very serious and debilitating indeed. I hope you find a solution for these poor babies, and I send you much love, and please contact me again if you have any further questions. I would love to hear how you get on, and I wish you all the best.

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  2. Once when my son was a baby, I took him to the emergency room three times in one night. The first two times, the nurses and hospital doctor sent me home and tried to make me feel like I was over-reacting. The third time, they called in my son’s actual pediatrician. When he arrived, I saw him down the hall. A nurse stopped him and told him I was a crazy lady and that she needed HIM to stop ME from disrupting the hospital. He simply nodded, then walked in and took one look at Jeremy. He asked me what had happened, then wrote orders for a croup tent and breathing tube right away. I heard him go around the corner and yell at the nurse as well as the hospital doctor for not listening to me. He said A MOTHER KNOWS HER CHILD BETTER THAN ANYONE and they needed to remember that! My point? Don’t ever let a doctor talk you out of what your gut tells you. You are good Mama and Carys is lucky to have you in her corner. 🙂 Good for you!

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    1. Unfortunately Rachel I have heard of many new mothers who have had similar experiences. Thankfuly you had a great paed who came to the rescue. Thank goodness! It sounds like your son was really ill. Its laziness on the part of the hospital staff…a tborough examination would have revealed your sons illness. They were too quick to see a new mother and jump to (wrong!) Conclusions. I hope they learned something from that! Im vuessing you certainly did!

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  3. Hi Ali, It’s truely amazing how many doctors, including gi specialists, have no clue about nutrition or how food impacts bowel function. I was chronically ill with a bowel issue for six years before I was properly diagnosed. BTW I know about, but haven’t personally read, the studies showing that corn can be very harmful for people with low motility. In my case, I learned how to be my own detective… but to be fair, I learned this skill from my mom. In a completely different context, she advocated relentlessly for me to stay in public school when no one wanted to deal with providing resources to a blind child. It’s so painfully true that it’s easy for others to turn away, but a parent never will. I do wish people would realize that we are all some mother’s child and act accordingly. The world would be a better, different place. Good on you for figuring out what your daughter needed!

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    1. Hi Eilish thanks for your lovely comment. Im sorry to hear you have been so ill. I never would have tbought a bowel condition could have such a huge impact on overall health and wellbeing till I saw it with my own eyes. Six years is too long. It should never have been allowed to go on so long but doctors seem reluctant to admit diet can be the culprit and want to cure everything with medicine or surgery. I hope your condition has improved since then. Your mom sounds like an awesome lady and so do you!

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      1. Thanks, Ali! Actually in my case I had a pretty nasty structural problem and surgery was the only option–I did spend years trying diets, postures, supplements, acupuncture, whatever might otherwise work, but the issue was pretty physical. I had a bunch of symptoms in addition to the structural problem like IBS that also went away after surgery. I’m a natural/alternative health person so it’s odd for me to say this, but at least in my very specific case the surgery completely healed me. Now I watch diet and habits and such so it does not happen again. Yes very debilitating and I’m grateful everyday to have my life back! Obviously like in your daughter’s case diet and medications were the culprates and doctors really need to be more aware of the connection between food and our bodies. We are what we eat at a level they strikingly don’t seem to want to acknowledge.

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  4. That was an amazing result to turn around Carys’s health problems Ali well done!

    Doctors have forgotten that the more you think you know, the more you should know that you actually don’t know – if you can understand what I’m trying to say 🙂

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    1. I didnt know we could ‘like’ comments…is that new? Never noticed it before lol!

      SRA I’ve missed you! Where have you beeeeeeen?!!
      You are a very deep thinker for an ape, and as usual have hit the nail on the head…I totally get what you mean!

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  5. Ali, I don’t know if you can see this web site but it is called ‘Know the Cause’ and it is by Doug Kaufmann. http://www.knowthecause.com He is very good and I have learned so much from him. I had a Dr telling me I had Diabetes because my Trigl and Glucose were so high. He wanted to immediately put me on Insulin. I said not yet I wanted to talk to a Dr in ST Louis that I knew of. btw I had been telling this dr for years I had all these ‘symptoms’ and he said it was old age. When I saw this dr in St louis, he took one look at me and said I had an internal fungal infection in my stomach, large intestine and pancreas. These 3 places all were the areas that were causing the problems. The Pancreas was what was causing the high levels of tri & Glucose. He suggested I read Kaufmann’s books and go wheat free, gluten free and sugar free. This was hard to do because it meant no bread of any kind, cakes, pies, candy, fruit, etc BUT in the space of @ 3 months I saw such a VAST improvement in ALL of my problem areas and even in some I wasn’t aware of that were being caused but the yeast and fungal infection! I was having Pnuemonia at least 3 times a year caused by sinus infection, asthma, etc. Since I have gone on this food restriction I haven’t had 1 sinus problem much less an infection or Pnuemonia and it has been 2 1/2 ys since I changed my eating habits. I have no problems with my breathing, sinuses, bowls, stomach aches, etc. Just as a ‘btw’ IF i had just done what that dr wanted me to do with the insulin, he would have ultimately destroyed my pancreas because the insulin wouldn’t have take care of the readings, they would have just gotten worse as the infection got worse so he would have just kept ‘upping’ my insulin until he finally destroyed the pancreas. I haven’t been sick one time since I changed my habits. No flu, colds, Pneumonia, asthma attacks (I don’t even use my inhalers any more!). I am a FIRM believer in the wheat,gluten and sugar free life style. Even not having my favorite thing (bread) became vey easy to do with out, once I saw what a difference it made in my life! I have both you & Carys in my prayers.

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    1. Diane that is amazing! I firmly believe that our eating habits have a huge impact on our health. And I definitely believe in low carbs and low fibre after what I have seen it do to Carys. Ive cut wheat, gluten and dairy and sugar from my own diet too and feel so much better for it…and Carys does too! Thank you for sharing your story and confirming everything I nust wrote about! Its amazing how many people have similar experiences. I will defo check out that website! Cheers!

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    1. Harliqueen, a midwife once said to me when my firstborn was only 4 weeks old that tbe mothers instincts are always right. I was convinced there was something wrong with his hearing. Turned out to be only fluid in the inner ear which drained away naturally 8 months later but Ive never forgotten her words. Its so easy to be intimidated by doctors but tbeyre just human like the rest of us…even if they sometimes forget that themselves lol!

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