Williams Syndrome Support Group

Hey there. I am not of much help, but does she get colicky really bad too? What kind of doc is she seeing? I might be able to research if there is any way. You are welcome to ask for help with that any time. Does she have other illness along with the Williams diagnosis? I am sure you have been through the ringer washer. Has she had her electrolytes checked? Does she have too high of calcium levels and is this making her sicker? Any information you can give me, and maybe I can at least try to help you go in the right direction. God bless, from Big Michelle to you and little Michelle :)

Hi there. How old is your little one? We had trouble with our WS angel, and she is 17 months. We have an OT to help us with that, but she hasn't been much help. We have her on PediaSure, which is geared for toddlers, and she is gaining weight slowly. Also, we just present her with whatever food everyone else is eating, and sometimes she eats real well, sometimes not. Talk to your pediatrician or nutritionist about a different formula.

I'm not sure if it's the 'norm' for WS kids to be on the thin side, but my Son has had feeding difficulties all his life, he is now 21. When he was 14 he was given a feeding tube, I only wished it had been done years back, it would of saved so much worry, stress, hospital visits, it had been a complete nightmare up until he had his feeding tube put in. I'm not saying this is the route for your child, but a G Tube isn't the end of the world, and at the end of the day, what matters is what's best for the individual. We struggled for fourteen years with feeding difficulties, vomiting, choking, being admitted to hospital numerous times to have his foodpipe stretched, food issues were a constant worry, to the point of dreading every meal-time.

My son, Evan ended up getting a g-tube at 3 months old. It has been the best thing we could have done for him. He is gaining weight and developing better since he is receiving the right amount of nutrition from his formula. It's really not that bad once you get use to it and it has really been a blessing since he is on so much medication. I just give it through his tube. If the docs do suggest a g-tube, just know it will be a good thing for her. She will grow and gain weight.

Sorry you're having to deal with this. My nephew is 12 months and has ALWAYS have severe problems with feeding. He just turned 12 months last week and weighs 15lbs and is 29 inches. He went into the hospital last month for vomiting and they did every test imaginable. Ended up "only" being (I say only because they knew when he went it, it was high but did a ton of other test thinking something else was going on too) high calcium. They ended up giving him a g-tube which really seemed to help. He went home after 10 days. He is back in the hospital again for not eatting, it's his calcium again. Plus this time he got the added treat of a staph infection from a blown vein. Actually the poor kid blew every vein in his body and they wanted to put an Iv in his jugular but decided to give him another gtube and oral antibiotics. We personally thing the G tube is awesome. They are actually sending him home with it. My sister is to take a class first. Good luck with your little one. Have you had her calcium checked?

Aunt tt

HI!

How old is your LO? My daughter is 4 months and we were having horrible eating issues. She was breast fed up until last week and is doing soooo much better. We put her on hyperallergetic formula-Similac Aliamentum. She is finally gaining weight after staying 12lbs for the last 2 months. Turns out she might have a milk and/or protein allergy. What formula do you have daughter on?

Hello, my daughter is 10 weeks old and was just diagnosed with WS at 5 weeks. She was born 6 weeks early and weighed 4lbs 2oz and was in the NICU for 4 weeks. She had horrible eating difficulties, from dropping her heart rate, apnea,choking, sucking/swallowing, and vomitting. She was discharged from the hospital with a apnea monitor, but she is now off that since she was rarely setting it off. I tried her on the breastflow bottle since the nipple is so much shorter and it did wonders for her, but she still eats slow (about 1 hr per feeding). She is on Similac Neosure formula that has extra calories for preemies, but she is not gaining weight like she should be. She eats 4 ounces 5-6 times a day (usually 20 oz or more per day). She is gaining weight but very slowly, she is still only 5lbs 12oz. Does anyone have a similar circumstance with their WS child?

My son had problems with feeding also. I had to get the nipples on the bottles for the older babies, and even then made the hole a bit larger so that he could get the milk easier. Also, my pediatrician had me add strawberry flavoring (like nestles) to his milk. That was the only way I could get him to drink it. He still only drank about 24 oz. on a good day, but that was enough. The doctor said I could use the chocolate too, but my son didn't like choc. and he did like the strawberry.

I just went to the store earlier and got the medium flow nipple and it seems to have done the trick. I have only fed her one time thus far with the new nipple, but she ate 4 oz in 15 minutes when before it would take an hour or more. I'm hoping that now she will start putting on weight, I was thinking maybe she has been using so many calories sucking so hard that it wore her out. I'm hoping that this does it. After this past feeding she smiled and she just looked so content.