Today’s guest post is from Hayley Goleniowska, a proud mum of two gorgeous girls, Mia and Natty, who has Down’s Syndrome. Hayley blogs at Downs Side Up and her mission is to inspire new parents, show the world that most things are possible for children with Down’s, and shout out that the Syndrome truly is wonderful and that life will carry on, only just a little bit better!

In this post, Hayley talks about Natty’s struggle with constipation and the need to get her drinking enough throughout the day. You can read the original post here.

Hayley, Natty and Mia
Hayley and her daughters Mia and Natty

Natty, like many children with Down’s Syndrome has struggled with constipation over the years. Despite eating like a fruit bat and having a Mummy who makes biscuits and soups with things like linseeds hidden in them, she is a slow and reluctant drinker and we still had to resort to seeking additional help.

A powder called Movicol Paediatric was prescribed by our GP last year. This laxative is added to water and together the liquid makes the stools softer and easier to pass. And boy did it do just that! We panicked and stopped using it. We found an alternative called Lactulose which seemed to work fine with a small daily dose, although Natty would still go many days between movements and it could be very painful at times.

Wanting to make sure we were on the best path, I requested an appointment with a bowel and bladder specialist (ask your paediatrician or GP to refer you if you have concerns) which came up last week. After all, being constipated is not only painful, but leads to sluggishness, tiredness and a bad mood.

I know how hard it is to come by good information sometimes, so I will share her invaluable advice with you.

  1. Apparently Lactulose absorbs water from the body not the drink it is contained in, so for a child who struggles to drink enough that could have a dehydrating effect.

  2. Movicol is not a bulker and will not stretch the bowel or cause longterm harmful effects.

  3. Drinking plenty of fluid (water, dilute juice) is key. I was astonished to find that a child Natty’s age should be drinking 1.2 litres per day. For a chart for all age ranges see Wise Up on Water here. We weren’t managing anywhere near this, but are getting close now.

  4. Buy attractive cups and beakers and focus on them as your child drinks rather than simply asking them to drink. I bought a couple of sparkly Doidy cups, 2 patterned screw lid cups with a straw (don’t use sports bottles that encourage your child to jutt their jaw forward, for an explanation read Terrific Tools for Talking here), a pack of funky straws and a no-spill sippy cup. You could try a funky tooth brush holder with floating glitter and fish as a beaker too.

  5. Take the cup everywhere and offer your child a drink whenever you can.

  6. Encourage your child to sit on the toilet twice a day after meals. They must be comfortable (we still use a padded child toilet seat) and a foot step to raise their feet so that ideally their knees are above their hips.

  7. I cannot recommend the Rock and Pop method enough. Place your hand on the child’s lower left stomach (or encourage them to do it themselves), let them lean forward and relax for a few seconds, then ask them to sit back, push and… pop. It works 9 times out of 10.

  8. Make the experience relaxed and fun. Keep books or stickers in the room.

  9. Encourage your child to blow bubbles or play a small wind instrument such as a plastic flute or similar whilst on the toilet to strengthen abdominal effort.

The specialist is also able to advise on other aspects of toileting, positioning and so on. For help with steps and handrails, ask to see an Occupational Therapist.

Jayne Miller, Helpline and Information Specialist at ERIC adds: “The process of becoming toilet trained is a challenge for all children, yet the majority of children can be toilet trained even if they have additional needs. With time, perseverance and the right support from professionals, you can get there!

“Everyone should drink a minimum of 6-8 drinks a day, and it’s recommended that children with a bowel or bladder problem aim for 8. Water based drinks are best; a couple of cups of milk is fine but more than that and children tend to drink less water based drinks and eat less, which can indirectly lead to constipation”.

Visit ERIC's pages about bowel problems for more information about the causes and visit the website of Bladder and Bowel UK (formerly PromoCon) treatment of constipation for information on supporting children with additional needs.

The Down’s Syndrome Medical Interest Group (DSMIG) also publishes the following leaflet, courtesy of the Down’s Syndrome Association Gastrointestinal Problems in Children with Down’s Syndrome.