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Help me, i have just had one of those phone calls you dread.

494 replies

largeginandtonic · 01/04/2008 13:28

DD has seen a consultant for tests recently, she is behind at school and seems emotionally immature. We had lots of academic tests done, took about 2 hours. She seemed to do ok.

We were then sent to the hospital for blood tests. I have no idea what for. The hospital just phoned me and said can the consultant come to the house one evening this week and speak to me about the results. They said they need my husband to be home too.

I am terrified. Has anyone else had a consultant come to the house? Am shaking and cant get hold of my husband or my mother.

She is coming tonight.

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ingles2 · 02/04/2008 09:55

morning LG&T..am feeling very sad for what you had to go through yesterday, but have to say I agree with your dh and FG...there's that saying, you don't miss what you never had and even though that's not entirely true your gorgeous dd will grow up and adapt to her condition. With obviously caring supportive parents I feel sure she will have a fulfilling, rewarding life.

largeginandtonic · 02/04/2008 09:56

I am glad that it seems ok to freeze my eggs for her, i guess part of what she would be sad about is the fact she would need donor eggs and they wouldnt carry her genetic line.

FG thank goodness i made some sort of sense.

She hates being poked and prodded, she has had recurrent ear infections (marker for Turners) since she was 2 and has had gromits in now. It was a nightmare. How on earth will she cope with daily injections

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shabster · 02/04/2008 09:57

Morning G&T - have been thinking about you. Ive just been looking at your profile photo's again - what a lovley family AND you know how much I lurve Hugs (its the blonde curls). I can understand what a massive impact last nights news has had with you.

My friends little lad has fanconi anemia - we raised almost a quarter of a million pounds to get him to America for treatment. His baby sister was born without the illness and a perfect match blood wise for Nathan. Her cord blood was stored and then he had the transplant. He seems to be doing well. What I am trying to say, in my clumsy way, is that your DD, thank God, is going to be just fine. She will not grieve for her infertility because you cant miss what you never had. Nathans mummy used to say to me, when things seemed as hopless as they could ever be, 'He dosen't know how ill he is because he has never felt well.'

Turn it around sweetheart - the news could have been so much worse - like you just said at least it has been discovered early. Dont mourn for what you think she has lost - Celebrate the amazing little girl that she is. This is a health problem that can be made better - it is manageable. Celebrate your lovley children and smile (Please!!)

Thus endeth the sermon from Shabster

NatalieJane · 02/04/2008 10:00

Oh LG&T, so much new info for you all to take in, it seems so unfair

I do hope there comes a time when it is just a part of her life for all of you.

Is DH at home today?

YouKnowNothingOfTheCrunch · 02/04/2008 10:01

LG&T have only just seen this. I am so sorry that your dd will have to go through this, but your dh is right, she won't miss what she never knew, and you are right that getting the diagnosis now and not later is so much better as something can be done about puberty.

Thinking about freezing your eggs is a really positive and generous thought; you're a lovely mum.

I echo everyone else who has said that your beautiful daughter is the same person today as she was yesterday - you just know something new about her.

My thoughts are with you today.

uptomyeyes · 02/04/2008 10:03

largegandt.

I posted last night...but from the number of posts on this thread I think everyone else on MN did too! Everyone is thinking about you today.

Things will get brighter. Re the daily injections - is it growth hormone? DS1 had to do this for about three years and will probably have to do it again. It isn't the end of the world...you and dd will get used to it. If possible try to get the medication that doesn't need to be stored in the fridge. I've left phials of growth hormone in fridges all over europe when we've been on holiday always forgetting to take them out at the last moment as we go home! DS1 will also have to have puberty induced in a couple of years and we don't know what the long term holds. But as I posted last night he is the most independent, positive child and any attempt to wrap him in cotton wool is briskly rebuffed. He is his own person not a condition and your DD looks like she is her own person too having to deal with all those brothers!

Sidge · 02/04/2008 10:05

LG&T - please CAT/email me if you want to, my DD2 (I mentioned her earlier, we see the same consultant you may well see) has daily injections of Growth Hormone.

I met a lady with TS last week, she is a staff nurse in theatres and was living a fine life

ImflightbutIcantlogintoday · 02/04/2008 10:06

Sweetheart, I am so sorry. If you can manage to think positively - the fact that 98% of babies with this syndrome don't make it to birth, means she was very determined to be here
The first time I was pregnant I was reading my notes and it said I'd had a previous pregnancy with TS, I think they must have mixed up my notes with someone else's! But I did a bit of research at the time.
It looks like there is a lot of positive stuff around TS, I mean she is not going to have to be very different to any other little girl/young woman.
Thinking of you and wishing you some rest today. We are all here for you. xx

ImflightbutIcantlogintoday · 02/04/2008 10:07

I think the egg freezing idea is fantastic btw!

snooks · 02/04/2008 10:09

LG&T what a horrendous 24 hours you have had. Am thinking of you and your lovely family, I wish I could offer more helpful positive support but you really are in my thoughts xxx

Pinkjenny · 02/04/2008 10:09

There's nothing I really want to add, except Lexie can't wait to meet her surrogate big sister as soon as possible. You are a truly wonderful mum and an amazing person, and with your strength to draw on, she will be just fine.

JamInMyWellies · 02/04/2008 10:13

Just remember sweetheart that N is right P will never know any different.
Try to keep looking at the positives firstly she is still the same amazing daughter I PMSL yesterday at her muppets comment, secondly she is a strong girl already to live in a house full of boys and be able to stand her own shows she is a fiesty young thing who knows her mind.Thirdly, you have found out at a good stage her treatment can begin asap rather than waiting until she hits teenager yrs. Fourth, fab idea about your eggs.
FINALLY you have an amazing family who are all fantastic you have one of the best support networks ever with mumsnet behind you.

As ever much much love to you and yours.

Squirdle · 02/04/2008 10:14

Hi LG&T, just checking in on you this morning.

Your daughter will cope just fine with this, you are a fantastic mummy and with your support and love she will learn to live with this condition. I can understand your feelings about her infertility, especially as your children obviously bring you so much joy, but there is nothing to say she won't have children in the future. I wouldn't say freezing your eggs would be odd and that she would be giving birth to her sibling. They are just eggs at that stage, not embryos.

You just be in so much shock, we all dread something being wrong with our children, but I know that once the shock dies down a little you will be able to think more clearly. It actually sounds to me as though you are being very level headed already.

And as for Psycho, she is a great example of how to deal with medical problems with her children. She takes it in her stride and her children are happy and healthy despite all the things they have to cope with. Mind you the woman never sits down She actually isn't that far from you either. She is also a very good friend and a fabulous listener.

Anyway, LG&T, I am sending you many hugs and hugs for your lovely daughter.

Twinkie1 · 02/04/2008 10:15

Don't know anything about this condition LG&T just wanted you to know that I am thinking of you.

{{T}}

Squirdle · 02/04/2008 10:15

Ooh and I was going to say the same as Jam, she must be and incredibly strong girl with all of those brothers to contend with!!

ajandjjmum · 02/04/2008 10:16

She will cope with the injections, and so will you, but it will take time to get your head around it all.

I'm glad you are able to freeze some eggs - my SIL wanted to do the same, but was too old.

bellavita · 02/04/2008 10:23

Sorry about your news LG&T.

cadelaide · 02/04/2008 10:24

Good Morning LG&T, just wanted to say that I think freezing your eggs for her is a great idea, not odd at all.

Or indeed any other close(ish) family member's eggs.

Oh, looked at your pics and Good Heavens!, you're all a bit beautiful aren't you?

SorenLorensen · 02/04/2008 10:29

lg&t, I have only just seen this thread so have read it from top to bottom. I am so sorry - you must be reeling. I agree with all those who have said that now you know what it is, you can begin to get your head round it all...give yourself time, and accept that you do have a grieving process to go through...it's still so new and raw now.

CarGirl · 02/04/2008 10:32

Hi not read all the threads. My CM (and now friend) has a teenager with Turners who is at the far end of the spectrum with how she is affected. There is some sort of support group with an annual conference and my CM has met many very successful women (head teachers etc), many who have adopted etc. There are a few health implications but AFAIK the specialist are very well aware of what to do etc, there is a higher increase of sufferers developing scolliosis but again it's known about so they look for it etc etc.

Sadly many couple are told that there baby has turners when the Mum is pregnant and are recommended to terminate when as your dd has shown you already it's not the hugely scarey syndrome it can be made out to be.

Wishing you all the best in coming to terms with it and getting the help and support you need. In a wierd way you get to control when your dd goes through puberty!

snorkle · 02/04/2008 10:32

So sorry the news was crap LG&T. Your dd sounds fab & you sound like an ideal parent to help her through her challenges. I hope they prove to be not as huge as you fear.

Issy · 02/04/2008 10:44

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This has been withdrawn by MNHQ at OP's request

Issy · 02/04/2008 10:56

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largeginandtonic · 02/04/2008 11:07

Thank you, i am still fielding phone calls from my mum and ex p (her dad) who i had to tell this morming. I seem to say it out loud like a robot.

My head is killing me and i feel very sick, i think my body is rebelling a bit.

I am much more positive than i was yesterday and am still so grateful it was nothing more serious.

Psychomum does sound fab and i hope we get to meet one day. Squirdle i will email you when i get my head round this.

I feel terrible I keep picturing her gorgeous little face. DH is back to work, he is home this week away next

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largeginandtonic · 02/04/2008 11:07

Issy the girls are gorgeous

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