Saturday, December 4, 2010

You Can Lead a Dean to a Sippy Cup, But You Can't Make Him Drink

When Dean was born, he had no sucking reflex. And he couldn't swallow. Through the days and weeks, he gained both and was able to suck on our fingers or a pacifier, as well as begin to take a bottle (after he was cleared by a swallow study to do so). He got better at sucking on his bottle until he hit about 4 months old, and then he just... almost stopped. You remember my endless groanings about Dean's feeding progress, or lack thereof. Dean did continue to suck a bit on the bottle, but mostly he stopped. He pushed the bottle away, wanted nothing to do with it, and we couldn't seem to convince him that liquids were his friend. Eventually, we got away with him doing minimal sucking and us just cutting a huge hole in the bottle nipple basically to dump the formula into his mouth. He never was crazy about the whole drinking process, but we got it done and, especially after starting and liking solids, we were able to wean him off the G-tube and get that taken out.

When we switched to cow's milk at 12 months, I hoped that starting "over" with a new kind of milk would kick in some desire for Dean to drink - drink ANYTHING. He still hated his milk and often would clamp his mouth shut or bat the milk away. We switched away from a bottle to a cup with recessed lid at 13 months. Dean figured out pretty quickly how to operate the cup, and was excited about that for maybe a whopping four days, and then the cup just was thrown. Much to our chagrin, we tried flavoring the milk, not flavoring the milk, changing the milk, changing the temperature of the milk, whatever it would take. Dean still HATES his milk. He's now 19 months old and we feed him milk by letting him play and then chasing him around with the sippy cup. We basically (nicely!) shove it in his mouth and pour the milk in (we leave out the spill-proof valve) his mouth so he swallows here and there. If we leave him with the sippy cup, he *might* take a drink or two, but mostly he enjoys turning it upside-down and spilling the milk everywhere or just throwing it around. He will not drink on his own. Some have suggested a straw cup, but it doesn't make him any more interested in drinking, just gives him another kind of cup to throw around.

We're at a loss. I imagine Dean being older and us still chasing him around to get him to drink everything. Even Dr. Miller and Christy (her dietitian) was surprised to see just how much Dean really hates drinking anything. Dr. Miller said she'd never seen anything like it..... greeeeeeeeat. If *she's* surprised, that's not good. She said that most people with PWS don't like water (which we knew) and that that is related to a lack of a hormone that regulates thirst, but usually they like liquids with taste, like milk. Not Dean. We've tried all sorts of flavorings and kinds, and he treats each with the same degree of disdain. It's getting old. Ask others who have tried to feed him - my mom, Bob's mom, our babysitter - and they'll tell you how deep his liquid-hatred runs.

So how do we get him to drink *on his own* when he just hates it? If given the choice, I know Dean would take all his calories in solid form. I know that lots of foods have fluids in them, but he still needs to drink *something.* Bob and I both believe that somehow, sometime, Dean will want to drink liquids and just do it, but what if he doesn't? His lack of thirst already seems to be an outlier, so I guess it's possible that we could find ourselves another 19 months down the line and things will be the same? I don't know.


Janet Gulley said...

Maybe Dean will get a great case of jealousy over you feeding the baby and decide it is worth drinking out of the sippy cup if it means he gets your lap for a minute!

Bretagne said...

Hi Ali,

Aaron doesn't like to drink liquids either...water and juice are out of the question, he just turns his head away. We have had to rely on a bottle (the shame) to get his mix of half goat, half cow milk into him. That's how he gets his creatine, carnitine, B12 and CoQ10. Cups, forget it. He throws them. He turned 2 last Saturday. I'd be more worried but his 4 year old brother had a bottle til three and seems to suffer no ill effects :)