Tuesday, May 7, 2013

PWS Awareness Day #7: Feeding Difficulties

As mentioned the other day, most babies with PWS present with significant feeding difficulties. Some, like Dean, are not able to or are too weak to suck, and many require NG or G-tubes to get enough milk/formula to grow. Many babies need concentrated calories or formula to gain enough weight as babies. Speech pathologists or occupational therapists who are trained in feeding techniques can be useful for helping parents feed their babies and to train babies how to eat. As babies get older and stronger, they are also able to finish feeds and eat more. Some babies and toddlers need thickened liquids to prevent aspiration, likely because of a weak epiglottis (remember that hypotonia thing? Applies here, too...) and tone in their throats to control liquids. Ironically, all these feeding difficulties at a young age are present in the same individuals who one day will want to eat everything in sight... but more on that later.

Dean started off with an NG tube but couldn't tolerate it due to gagging and reflux issues. We reluctantly ended up getting a G-tube when he was 7 weeks old and he had it until he was 9 months old. We worked tirelessly day and night to get him to feed on his own with a bottle, and then we would put anything that he couldn't finish in his tube. When you're a mom, you have an instinct to feed your baby and it was so upsetting and frustrating not to be able to feed him like I did with Cole (or later with Emmett). This weighed on me greatly.

Dean did well learning to suck on a bottle up until he was 4 months old, and then he lost his sucking reflex and still does not have it at 4 years old. :/ Like most kids with PWS, he did much better with solids and so we were able to get enough liquid into him to complement the solids that we could get his G-tube taken out at 12 months (they wanted to wait a few months just to make sure that he didn't need it).

1 comment:

Mary said...

I love that you are doing this! These posts are awesome!!