Eating, Swallowing & Reflux Issues in Rett Syndrome – Sunday 15th September 2024
Eating, Swallowing & Reflux Issues in Rett Syndrome – Sunday 15th September 2024
Having a variant form of Rett Syndrome, my son and I experienced some of these issues and despite the differences, the root cause is the same, so our experience may be helpful or provide some insight to others.
I had awful reflux as a youngster and it tapered off some in my late teens. Sean, (my son) had the same ‘returns’ as a small child as well. But reflux was rare for him. Sean’s returns were so profound, it was all day, every day. The pediatrician was at the point of surgery and just as he turned a year old, it greatly improved.
To me, this was delay, but in the physical department. Then in his fourth year, regression struck, Sean couldn’t remember how to drink, and next came the problem of not being able to eat.
We had a diagnosis of Autism but these weren’t issues I could find anything about, so we had to deal with them, without assistance. I recalled being force-fed when quite small myself, and into early teens still mulching the same mouthful of food in my mouth and holding it there for easily an hour and so. When told I could spit it out, it was a relief.
I was very thin as a child, but in retrospect, for me, it was helpful to be so.
I couldn’t use the approach that had been used with me, with Sean and having tried to get him to eat for days without success I was trying to think of anything that might get him to eat and decided to see if he would tolerate a McDonalds burger. He ate it, the whole burger. The relief was enormous.
There followed a period of time where I had something that I knew he could eat. This wasn’t a fast food issue though, he wasn’t interested in other types of bought foods but something about McDonald’s helped him to overcome the difficulty he was having with food. Texture perhaps, the sauce, something about them got his eating skill to activate when nothing else could.
For the following years the use of a straw for all fluids, kept his drinking skill activated and McDonalds saved his eating ability. Sean would have certainly required a feeding tube had we not discovered McDonalds. It might sound funny, but I’m not exaggerating at all. So we got through these issues in this way. We don’t mind having the same food, I realize that people generally prefer variety, but for us and possibly some other people with a Rett Syndrome, eating challenges sometimes are less challenging when for a period of time, the same food assists, when variety will challenge.
I had reflux that could hurtle up so fast, before I knew it, it was coming out my nose. And the pain of that is still a vivid memory. But this went untreated, and I never knew that other people didn’t experience it. I couldn’t speak about it so I couldn’t ask. But for two decades I just drank milk. That’s how I treated it. And noticed certain things made it worse and didn’t eat those things.
That’s not the ideal I know, but the delayed and immature system is struggling with age appropriate foods.
But, to my mind, you have to gently try to nudge a thing along.
For an example, long ago, some eye problems were treated by covering the good eye to nudge the lazy eye. I would think that behind that, for that specific eye problem, instead of just giving that eye a magnified lens where it didn’t have to improve, the method, was to make the brain work the eye to achieve some improvement and then see if a lens was needed. And that tends to be the approach for me because medicines can sometimes be problematic when used for a long time. And often, you read on the medication packet that it isn’t recommended to do so. So, if the problem is going to exist for an extensive period, I like to use the ‘nudge along’ approach where it’s possible.
Decades of milk and for me, having no knowledge of Rett Syndrome, I self treated essentially. But I will say, had I known my condition, and been able to articulate it, for those particularly bad episodes of reflux I would have certainly taken a medicine than tolerated what I did.
Fiona MacLeod (C)
