Please or to access all these features

Add post

Watch this thread

Save thread

Start a new thread

Flip thread

Hide thread

My feed

Active Unanswered threads

Getting started FAQ's

Unanswered threads Acronyms Talk guidelines

Hide shortcut buttons

Talk

Children's health

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Flip

Original poster

Anyone with a DD with Turners Syndrome?

20 replies

NorthernNell · 14/04/2009 18:33

We have been asked if we want our DD (9yrs) to be tested for TS as they have discovered she has a horseshoe kidney. We aren't too sure wether to put her through the upset of a blood test (she hates them) or just wait and see.

Other than the horseshoe kidney and being a bit dinky for her age she has no other 'obvious' signs and the doctors have pretty much left the ball in our court - any advice gratefully recieved!

OP posts:

CompareTheMeerkat · 14/04/2009 18:35

I think there is a poster called largeginandtonic (although she may have a different name now) has a DD with Turner's Syndrome.

greenelephant · 14/04/2009 18:36

This reply has been deleted

Message withdrawn at poster's request.

CompareTheMeerkat · 14/04/2009 18:37

Have searched and largeginandtonic does have a DD with Turners Syndrome and that is still her posting name.

MadameCastafiore · 14/04/2009 18:40

There are other things that it would be good to know about if she has Turners - high blood pressure and heart defects being two of them so I would make sure she is tested.

Otherwise it could be that she gets to puberty and you have to do it then.

Original poster

NorthernNell · 14/04/2009 18:41

Thanks comparethemeerkat.

I know its just one bloodtest, but if they were really concerned they would have insisted wouln't they - replaces head in convenient bucket of sand!

OP posts:

Watchtheworldcomealivetonight · 14/04/2009 18:44

This reply has been deleted

Message withdrawn at poster's request.

bronze · 14/04/2009 18:48

I would test. When my dd was born they tested her as she was puffy as well as several other symptons. We we lucky that she was clear.
I think the fact that its not obvious if she has it is a good thing as it won't seemingly effect her life from an outside point of view but it would be good to know for her health and also the possibility of knowing if she was infertile.

WhoGotThaFunk · 14/04/2009 19:02

My 21 month old DD has Turner Syndrome. I think your DD would benefit from the blood test tbh as they are able to give hormone injections to promote growth etc. It would also give you piece of mind.

Please get in touch if you would like to chat - I would be more than happy to share our story so far

CarGirl · 14/04/2009 19:05

My friend whose dd has TS developed spine curvature as a teenager (can't remember the name - spondalitus?!) also they need hormone treatment to immitate puberty etc to protect their womb in case they want to try for IVF as an adult and to prevent conditions such as osteoporasis.

So I'd say better to know, they have their own support network with an annual conference so worth a look at that.

Original poster

NorthernNell · 14/04/2009 20:51

I have had a look at the TS support site. Certainly put my mind at rest as to what the problem could be.

Like I said she has very few characteristics only the horseshoe kidney (found when they were looking for something else!)and she is on the 9th centile for height and weight, I may go back to our GP to discuss it - we are lucky and he is a sensible parent himself!

OP posts:

WhoGotThaFunk · 14/04/2009 21:19

The decision has to be totally up to you (and I don't mean to be ) but what is the worst that could happen? You may just rule it out.

Just by looking at my DD you would never be able to tell she was any different to any other DD. My DD has very few characteristics of TS.

Please don't think that I am being negative. It is a topic that is very close to my heart. I just want to help/advise

Original poster

NorthernNell · 14/04/2009 21:28

Why did they test your DD WhoGotThatFunk?

I don't think your being negative and I think we are going to have to bite the bullet - just so we know one way or another! I suppose I am just gearing upto talking myself into it! I think if the peadiatrician had said she thought the test needed doing we have done it straight away, but at the time she wasn't too bothered and left it up to us so we did our ostrich impersonation .

I think because at the time DD was being tested for allsorts and ended up with a diagnosis of stomach migraines we were just relieved to escape the whole hospital carousel and disappeared skipping into the sunset!

OP posts:

WhoGotThaFunk · 14/04/2009 21:55

I went for a routine scan at 20 weeks and there were 'abnormalities' on the ultrasound and they advised us to think of termination. We decided against this (thank god). At 32 weeks I had an amnio to determine the cause. We had the results a week later and she was born at 37 weeks - a perfect bundle of joy

Myself and my DH wanted to go into the situation fully aware of everything. I want to help my DD learn about herself as soon as she was able.

We have been on the hospital carousel since DD was born but I look at her and it's all more than worth it.

WhoGotThaFunk · 14/04/2009 21:55

Myself and my DH wanted to go into the situation fully aware of everything. I want to help my DD learn about herself as soon as she was able.

We have been on the hospital carousel since DD was born but I look at her and it's all more than worth it.

CarGirl · 14/04/2009 22:01

I am always really shocked that they always advise termination for TS.

WhoGotThaFunk · 14/04/2009 22:17

CG they advised termination before they even thought of tests to reach a diagnosis. At 20 weeks they let us walk away from the hospital thinking this was the 'best' option. Makes me so they are allowed to do this.

MitchyInge · 14/04/2009 22:20

I didn't know termination would be advised for TS

my (what do you call a man you have been sleeping with on and off for a few years but have no desire to live with?) has an adult daughter with Turners, she is happily married and exploring options for becoming a mum

WhoGotThaFunk · 14/04/2009 22:35

Only 5% of girls with TS are actually born. 95% pass away before birth. I think that the majority of the medical profession unfortunately expect the worst .

MI I hope your (on and off) bloke's daughter becomes a mum lol

CarGirl · 15/04/2009 12:24

My friends dd is very severely affected with TS (has all the indicators) it is amazing that she made it to birth but I am very very angry that they recommend termination for it because those girls with TS who make it are usually those who are the least affected. So in effect they are recommending termination because a girl will be born infertile and not a lot else!

CarGirl · 15/04/2009 13:01

spine condition is called scoliosis (sp) TS more likely than average to get it.

Flip