hello

Stephani - posted on 06/07/2009

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I wasn't aware that there were different types of Turners syndrome can you enlighten me?

Marin - posted on 05/02/2009

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Wow, all of that is great to hear! Good news on Leonies shot. Leonie got sick and started to snore really bad (ok that part isn't good news, but the following is) When we took her to her reg doctor to see about it she had lost a few ounces. He told us to speak with her ENT doctor when we see him at the end of the week. Just as I had expected she needed her tonsils and adnoids removed. A month later, we go back to the doctor for the pre op exam and she jumped 2 pounds and 2 inches!! The shot is actually working! She went through surgery just fine and is completely healed now. We have also since spoken with her endocrine doctor and he was ok with us using the back of her arms instead of her stomach. Leonie hates that spot most of all tho, because we have to restrain her more. She only cries while we give her shot and starts giggling and playing seconds after it is done. I think she is just toying with us.

Michelle, are your two girls on the growth hormone? How are they taking it?

Holly, welcome, and did you have to go through special fertility treatments to have your child(ren)?? Just curious?!!

~Marin

Michelle - posted on 04/18/2009

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Quoting Sheila:

Hi Holly,

Wow! You are a mom????? That is the best thing I have heard! To me the saddest part about the diagnosis for my daughter Emma was to think she won't have children........so to hear from you is fabulous!

Sheila

I agree! That is exciting... that's been my biggest worry. Both of my girls (and my only children) have Turners so I've tried to come to terms that I will never have any grandchildren. It's good to know there is hope.

Sheila - posted on 04/02/2009

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Hi Marin,

My daughter Emma is 10, but super thin and no body fat. She is also a gymnast so very muscular. The home nurse said to not even worry about the tummy when there is no tummy there!! So we rotate, arm, butt, thigh and she does ok but is obviously older and more rational to deal with! I too have given the shot while she slept and that works too!

Best of luck!

Sheila

Sheila - posted on 04/02/2009

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Hi Holly,

Wow! You are a mom????? That is the best thing I have heard! To me the saddest part about the diagnosis for my daughter Emma was to think she won't have children........so to hear from you is fabulous!

Sheila

Lori - posted on 03/13/2009

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Welcome Holly, I'm happy that you have joined us and am looking forward to hearing you're first hand experiences and advice in the future.

Holly - posted on 02/25/2009

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Hi, I'm Holly. I'm a mom who HAS TS. I like to join these groups to see what people are learning about TS these days, and because I find that parents find it interesting to hear from an adult with TS.

Marin - posted on 02/17/2009

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Thank you that does make me feel better! I will definately be talking to her doc when we see him in April.

Lori - posted on 02/13/2009

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Malique has been very skinny/muscular since she was born; due to the lack of fatty tissue we opted to not give shots in her stomach. After discussing it with her doctor, it was decided that the shots would be given in the back of her arm (tricep area) and thigh with a daily site rotation. She has always preferred doing it in her arms over any other spot. Also, I found that if you let the growth hormone sit out for a short period of time (10 - 15 minutes) prior to giving the injection it seems to help as well; at least that's what my daughter has said. We also would give her the injection once she has fallen asleep when she was younger. I hope that this gives you some ideas/options to discuss with Leonie's endocronologist.

Marin - posted on 02/12/2009

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I am assuming your daughter was very tiny/skinny as well? How did you do the tummy shots? Leonie just doesn't have enough tummy to grab, and when she is struggling, she sucks her stomache in. We have resorted to just doing her thigh and bottom for now, any further suggestions?

Lori - posted on 02/12/2009

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Hello, my name is Lori and my oldest daughter was dx with TS Monosomy, or classic turners when she was two months old due to repeated hospital admissions for failure to thrive and my persistance that there was an underlying issue with my child. She is now 11 years old and is doing great! We began growth hormone replacement when she was three as well and it is very scary to inject your child on almost a daily basis, but hang in there, it gets easier with time and the benefits that your daughter will see in the end will make every shot worth it.

Lori - posted on 02/12/2009

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Hello, my name is Lori and my oldest daughter was dx with TS Monosomy, or classic turners when she was two months old due to repeated hospital admissions for failure to thrive and my persistance that there was an underlying issue with my child. She is now 11 years old and is doing great! We began growth hormone replacement when she was three as well and it is very scary to inject your child on almost a daily basis, but hang in there, it gets easier with time and the benefits that your daughter will see in the end will make every shot worth it.