Feeding

Feeding problems plague the life of the PWS child and family. During the first year it is important to do everything possible to ensure that the child has adequate calories to ensure growth and especially brain growth. After that, the whole family must follow a healthy eating plan that promotes physical and mental health for all involved. A pediatric nutritionist can be incredibly helpful in designing such a plan.

Growth Charts

Some parents have had good success keeping their own growth charts for their PWS children. You can download the exact ones your doctor uses from the [http://www.cdc.gov/nchs/about/major/nhanes/growthcharts/charts.htm

Centers for Disease Control.]

There are different charts for boys and girls; so make sure you get the right one. You'll want weight-for-age, length-for-age, and weight-for-length. You can also get head circumference-for-age.

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NG Tubes

Question: Should I keep using the NG tube (which seems like I am rewarding his behavior) or should I push the bottle and keep going for 1 hour (risking that he starts really hating feeding time)?

Answer: The biggest thing that I would say is that you are not rewarding or punishing behavior with the NG tube. You are helping him to survive. I don't think that you can modify a baby's behavior at this age with rewards and punishment. I think that they are just figuring out what living out of the womb is all about and for these little folks it is a tough lesson.

Can you cut the nipple? If your son is ok at coordinating swallowing, you may be able to cut the nipple and that will help the flow so that he doesn't have to suck as hard.

One thing that we did is monkey around with changing the ng tube. The next time that you have to change the ng tube, take it out right after feeding him. Then let him try to go the next couple of feedings just by mouth. The killer feedings are the ones at night, but still it may be worth a try. Our baby seemed to do much better at eating when he didn't have to work around the ng tube. He spent a couple of days off of it during a one week period and then he seemed to be doing well enough that we decided to commit the hours to helping him make it through the night without the ng tube. He did it and we kept going knowing that at any point we could put it back in if he (or we) needed the extra help.

I believe that our baby has very little sense of his tummy. He doesn't really know when he is hungry and he doesn't really know when he is full and he doesn't really know how to suck and so he gets no pleasure from sucking. Consequently, there is very little reward in eating for him. If this is the case for most PWS babies, then no wonder they don't spend their precious energy eating. That said, more recently, he has shown some indication that he knows a little hunger; however once that hunger is cut with say, 2 ozs of formula, then he loses interest rapidly...

Our speech therapist told us that we do need to be concerned about oral aversion. It didn't happen with us, but it is probably good that you are aware of the potential.

Aspiration

On the issue of drinking out of a cup do to aspiration, my son had to use Thick-it until almost 2 years old. It is great because you can mix it as thick or thin as you like and it supposedly doesn't change the taste. We were able to get rid of the feeding tube at one year by using this. It is a powder you just mix into any liquid or food to get the desired consistency. It comes in a can about the size of a can of formula for about 8 dollars I believe, or they have huge cans for 20 dollars. You can get it at any drug store, insurance wouldn't cover it for us because it's not a prescription but it is worth it. You have to use a cup with a slit, not holes because it won't come out of the holes. We used the First Years cups with the clear plastic covers, they are not very expensive. I would definitely check with your doctor first, but it worked for us and relieved my anxiety.