Travelling with an IA/ARM Toddler (part 3)
Updated: Mar 20
My first two parts on travelling with a toddler were more general, but in my final installment I wanted to go into some of the intricacies and different stressors that come with having a toddler with extra needs. My son has had all his surgeries to “correct” his anorectal malformation but as anyone with this condition knows, that it’s only half the battle. Everyday is now a juggling act of nappy rash and constipation.
There is also the constant fear that comes from not being able to control the environment and everything they eat. If I know exactly what is in everything he eats, it’s easier for me to work out what and when poo comes out. At home I have a fairly structured routine with his food, cereal and fruit for breakfast, home made muffin for morning tea, lunch tends to have more variety but often something and Greek yogurt, berries or other fruit for afternoon tea and either whatever we are having for dinner or something I have previously made and frozen for him. All that goes out the window when away, the fruits that are convenient are different, different breads, cereal and different lunches and dinner. A lot more pre-made food which isn’t unhealthy, because they don’t add sugar, salt or preservatives, but still not what he would normally eat at home.
This then causes a drastic change in bowel movements. In our case, they slowed right down, it was gradual over the course of the trip. It can really go two ways with him since his surgery, things go well and he has two good sized poos in a day and nothing around that or things slow down and he has what we refer to as sharts but nothing substantial and that results in many, many nappy changes. Keeping on top of it becomes a critical part of trying to stop the nappy rash but changing nappies every half an hour while on long drives or out in public is rarely practical and it can be a massive struggle at times to find somewhere appropriate. Not everywhere has nice clean parents rooms for you to use.
He is also on a daily dose of Parachoc, a stool softener to help keep him more regular. While on the trip I have had to up his dose slightly because it isn’t working as well as normal and I have had to change the time of day I give it to him to ensure a dose does not get missed. One missed dose tends to result in a very constipated child.
So then not only are you worrying about the backlog of poo that’s building up but there is also the smouldering nappy rash you are trying desperately to keep under control. I have three different types of nappy rash cream I cycle between depending on the severity of the rash, some seem to work better than others at different points in time, and I also have Stomahesive powder I use to try and set it and make sure the cream doesn’t rub off into his nappy. This needs to be applied every single nappy change, no exceptions. The consequences of missing even once is a severe rash, bleeding bum and a toddler in a lot of pain. Even with all this, it’s not always possible to keep it under control. Some days are worse than others.
As the trip has gone on, there has been less and less poo each day and each day my level of concern goes up and his discomfort goes up. They say it is OK for people to not poo for a couple of days, but anyone with IA/ARM will know that not going for even a day is a dangerous and uncomfortable thing. He was having small amounts of poo but my gut was telling me it just wasn’t enough, so I found a chemist and bought a single Microlax enema and thank goodness I did. He had a massive clean out and was a different child after. He had deeper more solid naps because he was in less pain and he was just happier in himself.
So it has been stressful and there was a lot extra I needed to pack, a pharmacy worth of stuff it felt like, and a lot I needed to be constantly thinking of, but we made it and we have had fun.
It’s a tough gig being an IA/ARM mum (it’s tough being a mum in general), you’re constantly ticking over about 50 things in your brain and it is all magnified when travelling. Even with other people around to help share the physical load, you never share the mental load and so your holiday is just as exhausting, if not more exhausting, than any normal day. But the awesome part is you and your tiny human have had new adventures and made awesome memories together, and that is worth all the stress in the world. Each day we go out builds up my confidence a little more too, so hopefully when I get home maybe we’ll spend a bit more time out of the house and go on other adventures together.
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