Turner Syndrome Support Group

Intersting....I have full TS, and grew out of eating very little due to feeling really sick and stomach achey when I would eat....I wonder if I grew out of acid reflux? Anyways, all the best to you and your daughter, HUGS and prayers! I am here if you need anything-Jasmine.

I'm don't always read my daily strength emails, but it's funny I read this one today. Your situation is all too familia. I have a daughter who just turned 3 with Mosaic Turners as well. We struggled to find out her diagnosis so I'd love to find out how your daughter was diagnosed at birth? Did she have lymphodema? Our daughter did not.
She did have relux from birth until 12 months. It was like the week of her birthday she just stopped. We did have her on the relux meds for a few months but it didn't help. The meds DO NOT stop the reflux from occuring, however they can help reduce the damage from the relux. However, my research indicasted that those drugs do more damage than good, and can cause more problems with your daughter absorbing nutrients. We had a gastro test where the child drinks this liquid and they determine if everything inside is in place. That came back all fine. However, our daughter was not gaining weight. We knew she wasn't growing, but they sent us to Failure to Thrive instead. We noticed from birth that our daugther had a bone deformity in her arm, near elbows but the Ped kept telling us she was fine. Finally at 12 months she said if it made us feel better we could consult with an Orthopedic. So we did, and an exray confirmed bone deformity, which directed us to Genetic Doctor finally. It has been a long road for sure... we were actually happy with the diagnosis so we could finally treat our daughter better. I would love to connect with you further on all the nutrition stuff I've learned. We were recommended Juice Plus by Dr. William Sears one of the Peds we consulted with. I think it has helped tremedously and also learning more about nutrition has helped me stick with giving our daughter healthy foods and help her be "less picky". Since she was so picky, I would open the capsules of Juice Plus and put the powdered fruits/veggies in apple sauce or yogurt and felt so good knowing my daughter was getting the nutrients of kale, parlsey, beets, papaya. She is not 25th percentile on the growth charts. Grow food are just as important as Growth Hormones. Please feel free to email me and I will be glad to share more. I became a distributor for Juice Plus because I knew there were other families out there like ours that needed help getting more nutrition everyday. You can also check out my website, www.mj4juiceplus.com. Click on the video to learn more.
Email me at maryjof@mac.com.
I wish you the best of luck... Mary Jo

Hey there :-) I just wanted to offer my experience. My daughter is 8months old and was diagnosed prenatally with mosiac TS. She has been on prevacid to assist with reflux and she has a milk allergy. I have been trying to feed her baby food/cereal since 4 months old. Just yesterday she finally ate 1/2 jar of cereal with applesauce! I have heard of TS being tied with "oral aversion". This is where they have no intrest in solid foods. My suggestion is to not stress but continue to offer food every other day. I am hoping with my daughter this was not a one time deal and we will continue to eat well. If she does not I am going to find a therapist who can help. Dont give up and try to breathe easy. If want to email feel free :-) take care.

My daughter is 16 months old and she has mosiac TS and she had a problem with eating when she left the hospital. At about 5 moths old she got pneamionia and the doctors treated her and then a month later she got it again, so they sent her to the children's hospital where the figured out she needed a feeding tube because she kept asperating on her food. So at 7 months old she got a feeding tube and that was the best thing for her. It is just now been about 2 months and she has been eating on her own but she has never had a big appetite.

Hi there- when I was a baby the high palate in the mouth associated with TS made me not feed well.

I have read that some Turner's girls don't like certain textures.
My neighbour has a similar problem with her 2 year old daughter, although that little girl has not got turner's, she is very small and her parents are both tall, however perhaps she will just be little like her grandmothers.

I have mosaic 30% and never had any problems eating, infact quite the opposite.

could it be that regardless of turner's some kids just don't feel the need to eat as much?

I'm 17 and I can still barely eat. My mom told me that I wouldn't eat anything. Now I no why - because it hurt. I also have Mosaic Turners and Acid Reflux. Some foods that you have to really chew (like steak), I can barely eat. It's hard to chew and even harder to swallow. I also have trouble taking pills. I can only take them one at a time and slowly. Like almost building up courage to take an advil. But I rather take pills then liquid medican. Is that just me or is anyone else like that?
Anyways. I found out that if it's liquid food then I eat a lot more then I will a solid meal. Soup and fraps (milkshakes) are good but I don't know what to really do for an infant. I guess if you see a couple of different doctors and get their opinon then it would be best. I wish you and your daughter the best of luck.