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DD is 13 and has ovarian failure, brittle bones, and is growth hormone deficient. Help??

26 replies

fernzmal · 04/04/2017 06:19

I can't remember if I have posted this before. DD is 13 and has ovarian failure. Also has growth hormone deficiencies and is not growing as tall as she should. She is probably the height of a 9yo. Also has osteopenia (brittle bones). All of these is due to chemotherapy as she had two types of cancers previously.

Anyway. Wanted to know if anyone has undergone this before, the ovarian failure in particular. What treatment was given, were there any side effects. DD's endocrinologist wants to put her on estrogen to kickstart puberty. But it will fuse her bones and she will stop growing. So I am thinking of asking to delay it for a year. But she will need it to boost her bone strength, besides puberty. Also, her endocrinologist does not want to give her growth hormones as they may cause malignancies, and she is at high risk.

I feel like am running out of time, as she is already 13....also if anyone has any ideas on how I could possibly push her height even one inch, I would be grateful. She is currently on Calcium and Vit D3 for her bones, although she doesn't like the taste of the calcium so doesn't take it most of the time. Her doctors have told her to take more dairy and exercise at least 3x a week. She isn't naturally very fit, as she has been in a hospital bed for most of her childhood, so we are slowly trying to get there...I have been trying to get her to swim at least once a week but even once or twice a month is not easy. Plus she is prone to pneumonia and has it a couple of times. We try to go for walks in the park but she gets fatigued, and has leg pains, especially after school. We have started doing yoga which I read is good for bones, I just hope we can continue, and am also looking for other ideas. I read dancing is good, but she has never gone for classes and is worried about looking silly. Even the yoga, she was moaning and groaning the whole time before the class, saying it was embarassing, and she will embarass herself. Teenagers!!!! Although in the end, she seemed ok with the class, so hopefully we will go again a second time. Anyway, just need some advice, or even hand-holding, anyone?? I really don't know what to do.

OP posts:
Are your children’s vaccines up to date?
Keepkondoing · 07/04/2017 11:58

I can't offer any advice on the other stuff but in terms of exercise, it should be fun, her fitness and endurance will build up so don't put her off by doing stuff she hates. There are hundreds of you tube videos you could do at home, just dancing round the kitchen to music, long walks (building up the distance as you go along), swimming for fun with friends, couch to 5k may be an option to do together? Is there much she enjoys during PE lessons?
It must be really hard for you and her, but it sounds like you are doing great.

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