What is Turner Syndrome
Turner syndrome encompasses a number of chromosomal abnormalities, of which monosomy X, is the most common. It occurs in 1 out of every 2,500 female births[1]. Instead of the norma...
Join Now
|
Im new! need advice
|
Watch this |
| View More Posts Ignore |
Hi!
My name is Casey! I am 22 years old and live in central Mississippi! The Delta. My daughter was born January 26, 2009 and was diagnosed to Turners Syndrome at birth. She had a vertical line across the palm of her hand, major swelling of the feet, and prominet ears, and also they said she has wide spread nipples. This was all a big shock to me! 2 days after she was born they come to me wanting to do a blood test to test her for this, which i agreed to, but i was in denial! I thought that the line across her hand she got from her daddy, and her feet being so big was due to her being caught in my ribs, and her daddys family has fat feet. When the results come back that she had it i was terrified. They called us in for a echocariogram, which come back normal all except for a small atraial septum deffect, and a sono of her kidneys which come back good. At 28 weeks in utero they noticed she was behind growing 2 weeks, but hey im only 5'2 and 100 pounds soaking wet. So there was no concern! We see Dr Omar at Blair E Batson for children in Jackson Mississippi. He is wonderful no doubt! We are scheduled to see him every three months and he has also referred us to a endo. to start monitoring her growth. the first thing i did was jump on the internet and read and i was terrified. after seeing her specialist he let us know not to read anything that was not put in by a Dr. He gave us pamplets to read. Even though i have all the information in a book i joined this support group to talk to people about what has really happened, how life was too them, and what i need to expect. The doctor told us they will start her on growth treatment about 2 or when she falls below the 5th percentile. he also told he they can give her hormone treatment now, but wasnt sure that it would affect her any better than just getting it when she hits adolescence. does anyone have and advice about this. I have read many things on here and im so glad i found this support group! maybe some of you can help me through my Journey! God Bless everyone! i got my screen name from my daughter- her name is Nataleigh (Natalie) and everyone calls her lu lu (long story) Casey 22 & Nataleigh 9 weeks Posted on 04/03/09, 02:04 pm |
| 8 Replies | Add Your Reply |
| View More Posts Ignore |
Hey there! I am new to this site as well. I have a 7mth old with TS. The only advice I can give is be demanding with the doctors and do your own research. I live close to St. Louis MO and have a hard time finding the medical care my daughter deserves. This I dont understand since St. louis Childrens Hospital was voted top 10 is kids hospitals. I am glad to hear you have found a specialist for your lulu. I have yet to find a doc who specializes in TS here is MO. If you ever want to chat feel free! oh, did I mention I lived in MS before. I lived everywhere from Vicksburg across to Meridian. Have a great Easter! 
|
|
|
|
||
| View More Posts Ignore |
Hey, girl. I know exactly what you are going through. I had NO idea when Taylor was born that her chubby feet were due to TS. Blood tests confirmed and she too had the EKG and everything turned out fine. Taylor is 45X and shows a few TS signs. She is 16 months old, the lymphadema is starting to subside simply because her feet are getting longer in my opinion. She has a moderately high arched palate and wide spaced nipples. Other than that she is an absolutely normal child. She is underweight and just had her first ear infection(which girls with TS are prone too). She is still average height but like you heard, around age 2 most fall off the growth chart of a normal female.
But really what i wanted to say is that I'm sure we see the same endo because Dr. Moll is the ONLY one around our area. I live basically in Natchez, MS but just across the river in to LA. If you ever have any questions just let me know. Its nice to have someone on here that is close! Pam
|
|
|
|
||
| View More Posts Ignore |
Hey Casey and Nataleigh :) welcome to the group! :) I hope you find friendship and good advice here, and that your worries lessen.....XX
|
|
|
|
||
| View More Posts Ignore | ||
|
|
||
| View More Posts Ignore |
Hi Casey!
I was diagnosed with Turner's at 3 years and I am now 13 years old. I think I can help you out! First of all, don't worry about a thing! Nataleigh will be just fine! I have a website (http://www.freewebs.com/colleenjoyce) if you want to check it out. I hope it helps you! Colleen
|
|
|
|
||
| View More Posts Ignore |
I was only diagnosed in june, im 27.
I have turner's 30%. What I have learned from speaking to others online, is that we are all great people weither we're 10% or full blown Turner's girls. There are a lot more people out there than we know about who have the syndrome, but the syndrome has none of us. She's going to be fine, she'll be a little different, but not that much more different than the variations found across the majority of humanity. The internet is a bastard of a place when you first hear of Turner's it's so negative and full of complete BS in many places. I'm about to start IVF, I'm happilly married to a wonderful man and life is great apart from the few bumps in the road, also known as reality. You'll be okay as long as you remain sensitive to your daughters needs and not the needs you are told she will have. A friend I had had a more severe disability in the form of MD, she's now an attorney despite her parents telling her just to go on welfare for life. Anything is possible as far as the outcome for your daughter. Transparencey is usually the best route with children, don't wait until she's 16 to discuss her condition, let her know she has to take slightly better care of her general health to sway the balance of the chances of things like diabeties, let her know it's okay to be cross at the world for a while and keep it real, don't over encourage or over praise her. I only found out when I was 27 and married. The only difference it makes to my life is the IVF I have to have to have a successful pregnancy. The only thing I regret about not knowing earlier is perhaps I could have done more sports to keep more healthy and not eaten so much ice-cream. So in reality no difference to anyone else, only I have an actual reason as to why I have IVF and I am spared that not knowing why me that so many bare.
|
|
|
|
||
| View More Posts Ignore |
All of you should push for Cario MRI,
I had the echo cardio gram and it was all fine, then some TS girlfriends pointed out that the echogram doesn't always show it all, so I had my MRI after a couple of months pushing the issue, and lo and behold, I do have a heart defect, it's not serious as it's only 46% as bad as it could be, so I won't need a simple fixer op, and IVF is not going to be too dangerous. But knowing which tests to push for is important, also some of the heart defects can alter with age. None of them are as far as I can see known to be fatal, but should be monitored none the less. Love to all your special babies, they're here for a reason, with a 2% chance of them being born you've got to admit, we TS girls are speical!
|
|
|
|
||
| View More Posts Ignore |
Hi!
Im Kerri and 23 years old and i found out about turner syndrome when i was 3. I have a mild case and the only side effects i got were a toe on my left foot is a little smaller than the others and the height (im 4'8 even with the growth hormones). I did get lucky i didnt have worse side effects and I got through school fine. I definatly would look into my own research about it for your kid and i can answerr any questions u might have... all you can do is just be postive for her.. i know it helped me!
|
|
|
|
||
| Add Your Reply |
