Feeding Issues

Another one of the issues that has been asked several times by new parents of kids with Rhombencephalosynapsis is whether or not RS kids have feeding issues. The short answer here is usually but the longer answer is that RS kids have feeding issues that run the full spectrum. There are kids with RS who require feeding tubes long term. I can speak to our experiences but know that ours is a more mild case of feeding issues.

Abby started life with an NG tube. She was 4lbs 14oz at birth and lost weight immediately. Within two days they put in the tube. She would attempt her feeds by mouth and get the rest through her tube. We weren't thrilled about it but the docs wouldn't let her go home until she was 5 pounds and took a certain amount of high cal formula at each feed.

Once she came home she remained on the high cal formula supplemented with breast milk. She was never able to nurse because her suck, swallow, breath reflex was so immature. Over the next few months she would take a bottle but it would take her up to an hour to drink just a couple of ounces. We had her assessed by a feeding specialist but they couldn't come up with anything conclusive. They called it a weak suck reflex, gave us some strategies (we were already employing) and sent us on our way.

When we started to introduce solids we learned quickly that she had a very severe allergy to milk, eggs & blueberries. She can neither eat OR touch them. (She is still severely allergic.) Food allergies are not a very common issue with RS so we're guessing it was just an Abby thing.

She did learn to eat solids but has always had an extreme tendency to stuff her mouth very full. She also flaps and head rolls quite a bit during meals. She is an EXTREMELY messy eater which is something we had to learn to deal with. She still gets OT for her feeding but they have made only fair progress. She eats with little assistance but it is a messy endeavor.

I think it's more of a frustration for me though. I don't know that she has any issue with how she eats. We're just hoping to get her a *little* neater and more efficient before she begins to notice.