About Dawn – reflux journey
I’m a 30 something mum and carer to Dexter who is 3. We live with my husband David (also known as dada) and our cat Zeus.
Dexter was born with Down’s syndrome as well as a heart condition and it’s the complications from his heart condition and his downs that a lot of his reflux symptoms were linked to in the start. When he was around 18 months old we saw a different cardiologist who said the symptoms were not related to his other conditions and that he had GORD. He was started on various reflux meds and it has taken a long time to get the drug and dosages right. For a long time he was on domperidone despite the cardiac concerns but with careful monitoring it was decided the benefit far outweighed the minor risk. It was only when it stopped being effective that we have started weaning him off it and concentrating on his main issue which is acid. He is currently only taking omeprazole to control this and touch wood it’s doing it’s job! He also has CMPI so after putting him on a soya diet we’ve also noticed an improvement.
Because of his constant pain and vomiting he now has extreme food aversions. He won’t touch food or tolerate eating anything other than purées. Now his reflux is managed we are working with speech and language therapy and using skills I have learnt on a recent portage workshop to try help him overcome this. In the last few months he has gone from refusing to even handle food to sucking certain foods – pizza crusts are the flavour of the moment. We are still a long way off beating the aversions but it just shows how much of an impact reflux has had on his whole outlook of food.
The hardest part during the whole journey is mostly the lack of sleep. Because Dex has an issue with acid he tends to suffer most at night. Regular night time wakings are the norm in our house as is laying with him so he can sleep sat up. His food issues are also difficult but we know that they are something he will only resolve in his own time with the right help and support.
The most stressful times were without a doubt when he was younger and it was so poorly controlled. It was the norm that we always had back up meals for when he threw it all back up and he would literally be sick a minimum of 3-4 times a day. We felt everything – like we were doing something wrong, useless, like we were failing him. It’s only when I found reflux support pages on Facebook and spoke to families via our local Down’s syndrome support group that we realised we were doing nothing wrong. It’s just one more string in Dexter’s bow.
One more obstacle that he needs to overcome. Once we accepted that then we were fully able to help him. Now, I can honestly say even though he has flare ups when he’s ill or teething and still only sleeps for a few hours at a time, I can’t remember the last time he was sick. He is starting nursery in April and there we’re many times I didn’t take him out because I knew I’d get the pity stares when he threw up, but now even though I’m realistic and know he will have shaky days, for the main part he is ready! You can get all the advice from doctors and specialists but the best advice I’ve found is from people who have been there. Holding the sick bowls, constantly washing and never sleeping.
GORD will always be part of his life and in accepting that I feel ready for it. Each day as it comes and every day the beast stays tamed is a win. I’m sure he’ll have bad days but if I can make the good days outnumber them then we’ve won.
Apologies for the essay. It’s a long journey and as I’m sure you’ll know, get a reflux mum talking about it and there’s a lot under the surface.
Thanks for taking the time to read. If you need any other information please feel free to get in touch.