Concerned about Weight & Size

Children and adults with cleft lip and/or palate issues

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Concerned about Weight & Size

Postby michellebeau » Thu May 29, 2008 2:17 pm

I was wondering if you all have tiny babies too? Kylie is a year old now and only weighs 16-1/4 lbs. I took her in to her pediatrician and her growth chart development was 40% height, 10% head circum, 2% WEIGHT!
She's always been teeny but I thought that after her soft palate was repaired that she would start to catch up. (She had it repaired 2-1/2 mths ago)
Is there anything anyone could recommend feeding her to gain weight? She's also pretty lactose intolerant so I'm not certain if Pediasure would be a good thing to try. I have her on soy milk & jar baby food still. She has a very difficult time eating anything that has consistency to it. Her jaw is a little recessed so her tongue pushes everything out.

The pediatrician is getting me a referral to a speech therapist but until then???? I feel like I should be doing more to help her along?
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Postby Heide » Thu May 29, 2008 4:59 pm

Hi there,

our little one finally made it onto the growth chart (.5% and .4%) shortly after her second birthday (about the same time we were able to put her in a forward facing baby seat). She has always had trouble eating and drinks small amounts. Last year we were referred to an Pediatric Endocrinologist who we see every 6 months, she is growing on a curve (her own) and her blood work for her growth hormones has been within normal ranges. We also have been lucky to see a speech/feeding therapist (through our insurance and the county funded b-3 program); these seem to help.

For extra calories and nutrition we use Pedisure, Just for Kids (355 calories for 8 oz) and a product called Skandi shake (which we mix with milk but which can be mixed in with all sorts of things). These really seem to have helped us. The Skandi shake is basically all fat while the Pedisure and Just for Kids has nutritents also.

Our little one pushed food out and the speech/feeding therapist thought it perhaps was an easier tongue movement for her to get food out instead of working it down to her tummy. She recommended all kinds of movements to try to help her swallow.

If possible in addition to a speech therapist, I recommend meeting with a nutritionist, ours really helped me with ideas for "fattening" up food, like adding butter, half and half and other supplements. I think the some of these products have lactose intolerant versions but do not know for sure.

I wish you the best. Heide
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Postby Linda S S » Thu May 29, 2008 6:10 pm

My niece who was born with a UCL is not tiny, never was. She was able to nurse from the start. Big babies run in our family, I was the smallest of 4 siblings at 8 lbs. 14 oz., so that might be part of it.
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Postby Babyk » Fri May 30, 2008 8:28 am

Avery was only 5 lbs 10 ozs at birth but at almost 10 months he weighs 19 lbs. But we have a feeding tube in our belly and have not had his palate repaired yet, that comes in July. Then I am afraid we may face the same challenges with the recessed jaw and eating. He has never taken anything by mouth.

Good luck and keep us updated with any tricks you learn that help.
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Postby max's mom » Fri May 30, 2008 9:36 am

I've always been concerned about Max's height and weight too, he has been in the 10-20% for height and weight. But since he turned 1 this month he has been eating like a horse! He has no problems with eating solid foods and I wonder if it's because we had the jaw distraction surgery when he as 3 weeks old. But I have noticed others the same age seem to be a lot bigger and heavier than him. I'm sure it's just because these little ones had a rough start with feeding issues. I think it will just take a little time for them to catch up.
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Postby heather » Fri May 30, 2008 10:22 am

Eyson has always been small as well. Not quite that small, but he's almost two years old and we've just almost cracked the 20 lb. mark and his 12 month clothes are still too big. He was born UCL and BCP. His pediatrician has watched him closely and made sure that his body proportions match up. She doesn't compare him to the normal range of every other baby. He has finally started getting the hang of feeding, though at the end of each meal I still find most of the food in his lap. My daughter was small as well and she was also lactose intolerant. We gave her Lactaid instead of soy milk. Lactaid had a higher fat content. I'm not saying it's cheap by any means, but it worked for her. Talk to your pediatrician. See if Lactaid will work for yours.
Image
Eyson Brentley Van Eycke
Born 11/8/06 UCL BCP
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Thanks for the info!

Postby michellebeau » Fri May 30, 2008 6:53 pm

Very Very good advice! Thanks everyone. I'm going shopping this weekend for the lactaid & foods suggested. I'm determined to fatten up my little peanut. Also, thanks for recommending seeing a nutritionist. I will look into it. Keep your good advice coming!
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Postby mrobida » Sun Jul 13, 2008 2:22 pm

I know this post was from a month ago, but I haven't been on here in awhile. My little girl was 6 lbs. 13 oz. at birth and always hovering around the 10% in weight. She had bad reflux, too, so we were seeing a GI doctor and he had us put oatmeal in her bottle as well as concentrate the formula to put on some weight. She really didn't start to gain well until after her surgery (at 7 months). At around 10 months she really took off and now she just turned a year and is over 20 lbs. She has become quite the butterball. She still doesn't want to eat baby food and we are struggling some with solids so we had an evaluation at the feeding clinic in our town. We are still waiting to go back for outpatient therapy but she will be seen by a OT/SLP, nutritionist, and behavioral psychologist. I did a similar thing for my other son who is also a poor eater, but had to stop because it was right around the time I delivered my little girl. Anyways, you should check into this type of program for your little one. Like someone else was saying, you can add high caloric things to food like butter and such, but I don't know about the lactose intolerance. My pediatrician also suggested adding some cereal/oatmeal to the baby food. They don't notice it too much. It just makes it a little thicker. You could probably add a little soy formula in there, too. I know even though my daughter is a year know and that she could start on whole milk soon, that the feeding clinic wants her to remain on formula a little longer for the calories/nutrients until she picks up her eating. Good luck!
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Postby mrobida » Sun Jul 13, 2008 2:23 pm

I know this post was from a month ago, but I haven't been on here in awhile. My little girl was 6 lbs. 13 oz. at birth and always hovering around the 10% in weight. She had bad reflux, too, so we were seeing a GI doctor and he had us put oatmeal in her bottle as well as concentrate the formula to put on some weight. She really didn't start to gain well until after her surgery (at 7 months). At around 10 months she really took off and now she just turned a year and is over 20 lbs. She has become quite the butterball. She still doesn't want to eat baby food and we are struggling some with solids so we had an evaluation at the feeding clinic in our town. We are still waiting to go back for outpatient therapy but she will be seen by a OT/SLP, nutritionist, and behavioral psychologist. I did a similar thing for my other son who is also a poor eater, but had to stop because it was right around the time I delivered my little girl. Anyways, you should check into this type of program for your little one. Like someone else was saying, you can add high caloric things to food like butter and such, but I don't know about the lactose intolerance. My pediatrician also suggested adding some cereal/oatmeal to the baby food. They don't notice it too much. It just makes it a little thicker. You could probably add a little soy formula in there, too. I know even though my daughter is a year know and that she could start on whole milk soon, that the feeding clinic wants her to remain on formula a little longer for the calories/nutrients until she picks up her eating. Good luck!
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Postby mrobida » Sun Jul 13, 2008 2:23 pm

I know this post was from a month ago, but I haven't been on here in awhile. My little girl was 6 lbs. 13 oz. at birth and always hovering around the 10% in weight. She had bad reflux, too, so we were seeing a GI doctor and he had us put oatmeal in her bottle as well as concentrate the formula to put on some weight. She really didn't start to gain well until after her surgery (at 7 months). At around 10 months she really took off and now she just turned a year and is over 20 lbs. She has become quite the butterball. She still doesn't want to eat baby food and we are struggling some with solids so we had an evaluation at the feeding clinic in our town. We are still waiting to go back for outpatient therapy but she will be seen by a OT/SLP, nutritionist, and behavioral psychologist. I did a similar thing for my other son who is also a poor eater, but had to stop because it was right around the time I delivered my little girl. Anyways, you should check into this type of program for your little one. Like someone else was saying, you can add high caloric things to food like butter and such, but I don't know about the lactose intolerance. My pediatrician also suggested adding some cereal/oatmeal to the baby food. They don't notice it too much. It just makes it a little thicker. You could probably add a little soy formula in there, too. I know even though my daughter is a year know and that she could start on whole milk soon, that the feeding clinic wants her to remain on formula a little longer for the calories/nutrients until she picks up her eating. Good luck!
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Postby mrobida » Sun Jul 13, 2008 2:23 pm

I know this post was from a month ago, but I haven't been on here in awhile. My little girl was 6 lbs. 13 oz. at birth and always hovering around the 10% in weight. She had bad reflux, too, so we were seeing a GI doctor and he had us put oatmeal in her bottle as well as concentrate the formula to put on some weight. She really didn't start to gain well until after her surgery (at 7 months). At around 10 months she really took off and now she just turned a year and is over 20 lbs. She has become quite the butterball. She still doesn't want to eat baby food and we are struggling some with solids so we had an evaluation at the feeding clinic in our town. We are still waiting to go back for outpatient therapy but she will be seen by a OT/SLP, nutritionist, and behavioral psychologist. I did a similar thing for my other son who is also a poor eater, but had to stop because it was right around the time I delivered my little girl. Anyways, you should check into this type of program for your little one. Like someone else was saying, you can add high caloric things to food like butter and such, but I don't know about the lactose intolerance. My pediatrician also suggested adding some cereal/oatmeal to the baby food. They don't notice it too much. It just makes it a little thicker. You could probably add a little soy formula in there, too. I know even though my daughter is a year know and that she could start on whole milk soon, that the feeding clinic wants her to remain on formula a little longer for the calories/nutrients until she picks up her eating. Good luck!
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