Dexter versus food – Dawn
Before I start I just want to clarify not all refluxers will have food aversions. Just like not all children with food aversions will have reflux. This is just our experience with Dexter and the 2 issues combined. For him they are linked. This is his food aversion story.
When Dexter was 4 months old we were advised to start weaning. He had poor weight gain due to a heart condition which he was waiting to have surgery for. In hindsight he just wasn’t ready for food and even though he took to purées OK his reflux didn’t. At this point he still wasn’t formally diagnosed with reflux so his vomiting was put down to other issues (poor swallow, low muscle tone due to Down’s syndrome, even his heart condition). As a result of this he wasn’t given anything to treat reflux until he was about 15 months old. By this point he had awful food aversions. To him food was something that made him sick, caused lots of pain and discomfort and most of all wasn’t a very nice experience.
Fast forward to today and Dexter is 3 years and 9 months old. He still only manages baby food but this is down to his anxiety around food and his fear of being sick all the time. Even though his reflux is well managed (most of the time), he clearly still has issues surrounding food. Some days he won’t even tolerate it on his hands.
It triggers what speech therapists call his ‘disgust reflex’. We all have this but the level which it kicks in varies. It’s the reflex responsible for that skin crawling feeling you get when you see insects, or someone scrapes their nails down a blackboard, or you see blood or needles. His disgust reflex is so sensitive it kicks in when he touches food or he sees other children eating. This has made weaning incredibly difficult.
We do however have a fantastic support network. I have to give a special shout out to his nursery who are doing ‘fun food therapy’. They take him and a couple of other children to a quiet area and play with food with no pressure to take part or eat anything. If they touch and play with it, fab. If he eats any, even better! This week it was fruit. Normally something that is a challenge because of the cold slippy textures. I picked him up to find he’d sucked some pineapple, mango, papaya, and orange! Last week it was toast and while he bit bits off and spat them out he actually let his teeth pull it apart! His keyworker was even convinced he’d eaten some as she couldn’t see how the bits that were left made up what she gave him!
It’s an incredibly long road. One that is so slow going with very little progress sometimes but every so often we look back 12 months and can see just how far he’s come. This is especially evident with apps such as timehop. A post came up the other day where I had posted in shock because he’d been sucking a chocolate button! Now he will actually eat one. It takes him a long time to eat but eventually we find the chocolate is gone and not just smeared all over his face.
We are lucky in that he doesn’t seem to have very many trigger foods for his reflux. Some children can’t eat certain things without it triggering their symptoms. This is outside of actual allergies and intolerances. For example acidic foods like tomatoes can be a nightmare for refluxers just because it increases acid production. Dexter has a cows milk protein intolerance so has to drink soya milk but aside from that he can have normal yogurts, cheese, butter etc without any ill effects. This certainly makes it easier when trying to get him eating as we don’t also have to worry about him having something that reinforces his perception that all food will make him poorly.
I always say ‘this year I’d love it if he ate Christmas dinner, or even a slice of cake for his birthday in January’. Last year he had a suck of a few bits of dinner and licked some cake. This year I’m not expecting miracles but I know he will give it his best shot and who knows. One year he’ll actually do it! It’s a nice little goal to have every year because even though he’s not there yet we can always see just how much progress he’s made in the previous year.
I will probably post about his progress over time as it is his main reflux related hurdle now the rest of the symptoms are finally under control. And when the time comes when I can safely say he’s done it, it will be cake all round!