A mother’s experience.
Being a little person is hard enough – so many big emotions, learning to navigate the world and finding your place within it. Having Gastric Reflux Disease (GORD) at this age adds a whole other layer of complications. Most infants will outgrow GORD within the first year (approximately 90%). Those that do continue on with symptoms past this age tend to have other related health issues; for Tobias that is mild cerebral palsy.
Let’s face it this is a huge cause for concern for most parents but for many their little one is usually sleeping pretty well once they enter their second year of life. Not so for a reflux kid! Night times are usually the worse for reflux symptoms; after all they are lying flat for long periods. Tobias can wake A LOT! He has never been a kid who wakes to party; he wakes because he hurts as the reflux is coming up his oesphageous, into his throat causing him to cough; it burns and it’s uncomfortable. He is as frustrated as I am that he is awake; he wants nothing more than to sleep. This is something only reflux parents can understand. It’s for this reason I believe you can’t train a reflux child to sleep, and do you really want to teach them that they can’t tell you when they are hurting?
So is there anything we can do to help them sleep? This is what has helped for our family:
- Regular check in’s with your specialist team to make sure you are doing all you can medically to control symptoms, this may or may not include medication.
- Early tea times. For us we have found Tobias’ tummy is more settled if we give him an early dinner so that he has plenty of upright time and time to digest it prior to going to bed.
- Routine. Kids at this age love routine and I think in a world made a little more chaotic by reflux, routine is all the more important. This doesn’t necessarily mean a strict bedtime. I know with Tobias his day naps would very much reflect how bad his night had been. We went through periods where 3am wake ups were the norm and he couldn’t get back to sleep due to discomfort. On these days he needed an extra nap and this may change what time he went to bed. For us we always went with his cues and needs that day. However, we had a bedtime routine. Bath time, massage, family stories in the lounge and then a story in bed. We have always stayed with our boys while they fell asleep. Tobias loves deep hugs and this always calms and settles him. He went through a period where he really loved baby lullabies to fall asleep to too, then he got where they were too much of a distraction. You may find your routine evolves as they get older to better meet there needs and that what is relaxing for one child may be stimulating for another so some trial and error may be needed to find what works for you.
- Safe co-sleeping. Co sleeping by definition means sleeping in the same room as your child, not necessarily the same bed (see my article on safe sleep). Tobias was in a co-sleeping bassinet, then co-sleeping cot in our room. Now at almost 3 he has his own bed in his own room and I have a bed where I sleep next to him. We have found this approach means I can settle Tobias quicker and the whole household is less likely to be woken. Our next step is for me to be able to move out of his room! (Remember this is what works for my family).
Again another huge topic for any reflux parent! Tobias has always been a real grazer. I think food brings him comfort as long as it’s the ‘right thing’; for him that is dry salty foods such as crackers. From talking to parents this is the case for other reflux children too, but for others food is associated with pain and they avoid it. Tobias has an unsafe swallow and he struggles to chew food due to his low muscle tone which is part of his Cerebral Palsy; he also has a dairy intolerance. Tobias has a gastric feeding tube as we weren’t able to get the volume and quality of food needed into him orally so obviously his food journey is quite unique but some tricks I’ve learnt that may help you are:
- Take your reflux friendly snacks with you wherever you go! Navigating ‘safe’ foods while out and about can be a nightmare so I always take snack boxes everywhere with me. Baby Mum- Mum crackers are a hit with us and I take little containers of vegemite to spread on to give them some flavour. (Tobias loves salty!) Potato sticks, fruit pouches and smoothie drops are our go to. (Remember Tobias has swallow issues so we are more limited.) We do have to be mindful of the puree as the fructose and acidity can be a trigger but we find the banana based ones work best for us. (see FEEDING)
- Make meal times a positive experience. I use a lot of grazing platters with both my boys which work well. It can feel like you have so little control over your life as a little person so having the ability to choose your foods can be empowering. By only putting food you ‘want’ them to eat on there which means you are both in control. I also try to get creative with foods, creating sunshine’s out of mash potato with strips of sausage for the rays, for example. Our dietitian taught us that is ok for the boys to spit out food that they don’t like, whether that’s due to texture or taste but they must do so politely into a tissue and they are rewarded for trying the food, as even this is progress!
- Sometimes screen time is ok! I actually saw this recommended by a dietician I follow on FB which validated our meal time techniques. We always have toys, stories or yes the Ipad at the table. Distracting them from food may seem counterproductive but if you have a child that gets quite anxious over eating these distractions can actually have a positive effect on them. Less time is spent staring at the food, focusing on the colour, texture, smell etc and you may find they actually eating better. Of course this may not be helpful for all children.
We all know little people have huge emotions; add in discomfort and feeling unwell and being constantly over tired and these emotions are often heightened. When Tobias’ reflux was at its worst he would literally wake in pain and get so angry at me it was scary; he would scream and hit and kick. Of course it wasn’t me he was mad at; it was the pain. Read that again and again and remember it. I think one of the hardest things I have found as a reflux Mum is that crying makes reflux worse. They cry because they are in pain from the reflux and then the crying makes it hurt more, or they cry because they have a red ball when they wanted a yellow ball and then the crying makes them reflux so now they are crying because they have a red ball and they hurt! It’s a viscous cycle. You want to give them the space to feel their emotions and yet you want to limit the pain.
Things that have helped us are:
- Knowing when to be close and knowing when he needs space and respecting that. When your little one is on the ground screaming, red faced, tears pouring down their cheeks all you want to do is pick them up and hug them. Sometimes this is what they want too; other times they want to be alone with their emotions. At these times I sit close by to Tobias (not too close) so that he knows I am here when he is ready. It breaks my heart to ‘do nothing’ but in time he comes to me, whereas if I ‘force’ comfort it can escalate things.
- Talking about emotions in the calm periods allows then to recognise them and teaches them safe ways to express emotions. There are so many great books and tools available now to help young children recognise emotions.
Tobias gets angry a lot. Now he can talk he says “I’m Angry” and I always say that’s ok to feel angry. The anger may lead to hitting someone or throwing a toy. That behaviour is not ok. So you want to let them know the emotion is ok to feel but give them appropriate ways to let it out; for example Tobias has a cushion he can punch, but only that cushion. (This technique was recommended by our OT.) With his brother we do the stop and breath technique where he takes 5 deep breaths in and out to help bring him down.
- Children with reflux can become hyper sensitive because living with a degree of discomfort long term can mean you are in fight or fright mode long term. Hence the quickness to anger described above. This can also go the other way and they become quite anxious. Tobias can get quite easily ‘touched out’ which I think comes from his discomfort. As a result of this if another child touches him, or even a fly lands on him he will react very strongly, often with a genuine terror. We have found giving him a quiet space away from others helps him to regulate these feelings. When he is in a clam period we also use weighted blankets to apply deep pressure.
Finally, for you as a parent or caregiver of a reflux toddler or pre-schooler I would have the following advice based on my experiences:
- Don’t compare your parenting journey to others, not even other reflux families. Every reflux child is unique. These are all ideas which we found useful; they may or may not be helpful for your family and that’s ok. You know your child best and what works for your family.
- Don’t compare your child’s lunch box to others! I have found parenting can be quite competitive on the quiet. I have felt judged at playgroups for my boy’s lunch boxes. (Both have food challenges). Pack the lunch box that works for your child; ignore what others think!
- Pencil in commitments, never pen! I rarely commit to anything outside of specialist appointments and therapy. Everything else works around Tobias, if he had a terrible night we stay home, or we turn up late so he can nap first. If it’s a bad reflux day, we cancel. Non reflux parents may not understand but I guarantee reflux parents do.
- Try to do some self- care, I know it’s hard but if you don’t put the oxygen mask on yourself first you’re not going to be able to care for your little one(s). See my MORE THAN SURVIVAL MODE article.
- Connect with others on similar journeys. Our reflux families are my tribe; I love connecting with them online or during our coffee groups. They get it, all of it and it’s so refreshing and so comforting to know you are not alone in your experiences.
One day are gorgeous reflux toddlers / pre-schoolers will have grown into amazing adults. I hope despite the extra challenges you may face during this time you are also able to see the beautiful moments too.
Written by Jenny Overwater, National Coordinator for © Crying Over Spilt Milk Gastric Reflux Support Network New Zealand for Parents of Infants and Children Charitable Trust (GRSNNZ) March 2022.