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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.

OP posts:
carolyn1941 · 02/04/2008 16:59

LG&T I have read the whole thread and just felt I had to send a hug and a kind word. Your daughter is beautiful and your whole family looks just lovely. You WILL get through this and yes, no doubt become an expert. Remenber, children can adapt to just about anything, with the love and support of their family (which is blindingly clear). I will be thinking of you all in the weeks to come xx

Elibean · 02/04/2008 17:02

LG&T, I can tell you a bit about donating eggs (the process) and egg donation in general, if you want to CAT me.

TheConstantIroner · 02/04/2008 17:56

LG&T. Not sure if this has already been mentioned, but on the Jeremy Vine show this morning, there was a lady talking about her daughter who has the same medical condition. She has her own website here
I hope this might be some use to you in the future.
Meanwhile I'd just like to add to all the hugs you've been sent and I hope you start to feel better over the next few days.

dejags · 02/04/2008 18:13

Your DD is absolutely and utterly gorgeous LG&T. You must be so proud of her!

trulymadlydeeply · 02/04/2008 19:12

Beautiful children, LG&T.

xxx

fairylights · 02/04/2008 20:02

thinking of you Lg&t, your daughter (and all your children!) is so beautiful, what a precious girl

LaDiDaDi · 02/04/2008 20:27

LGandT please do not panic about growth hormpne injections.

The needle is really very very tiny and children get used to having them and giving them to themselves very quickly. If necessary you can apply topical anaesthetic cream to numb the skin beforehand.
Your dd's final height will still be related to the heights of you and her dad ie if she was going to be a small or tall person without Turners then she will be a tall or small person in relation to other girls with Turners. She is not growth hormone deficient as such it is just that her bones do not respond as well to the normal levels of GH that she will be producing.

Puberty will be hormonally induced at a time that is felt to be appropriate taking into account her growth pattern and when she might be likely to have reached puberty based upon her family history, ie when you started your periods. There is a balance between starting to give oestrogens to allow for better development of her uterus and making sure that her final height is not limited as girls tend to stop growing when they reach menarche, ie first period.

Another question for you is do you know if she is felt to be "full Turners" or have a mosaic pattern? A mosaic pattern is when some cells in the body are XX and some are XO. Girls who have a mosiac pattern tend to be less affected than girls who are XO.

I will try to answer any other questions as well as possible without knowing your dd.
Hope this post is helpful .

Psychomum5 · 02/04/2008 21:21

am back to send evening cyber hugs

busy day here today for us. took mine to poole park....t'was a lovely day...and yes, I am quite close to you. live in bournemouth in fact, so squirdle is right about meeting up in the future.

I have been thinking about you all day today, as several others have I see!!! you have touched a lot of hearts here these past few days, a testement to you and your caring personality......it shows so well here.

I am so glad to see that you are sounding a wee bit more positive this evening going on your last few posts.......and I am sure you must be heartened to read all the positive stories that people have posted.

please take care of yourself tho......you will be grieving in a sense right now for the daughter and the future you thought you would have.....but please believe, you still have that same daughter, and quite possibly that exact same future, especially the one where you see yourself holding her hand as she gives birth. Medical advances change rapidly, and just becuase she has turners, it does not make certain that she will not be a mother. it will just be that she will need a little help in that regard, as she may have done anyway.....you will never know that.

her future is different to the one you envisioned for sure, but in no way is she going to be different.....this is not a life limiting condition, just a life long one.

her personality and lovingness (and bossyness) are still as intact as they ever were, and your love for her is just as sound.....she will just no doubt get more hugs now!!!!

xxxxx

Blu · 02/04/2008 21:39

LG&T - I can almost see the great swirls of thoughts going round and round and round your head - but as everyone says, give yourself time.

I know you feel heartbroken, she is your gorgeous little girl - an more importantly, she is her own self. She was always going to follow dreams of her own, not yours, and you would always have been happy for her to do that. It is her self-esteem, and the love of her Mum and dad and wonderful family that will be the foundation of her happiness, and will take her forward into her own ways of being happy in the world.

And I promise you she will cope with the parphanalia of any treatments you decide on. My experience of travelling alongside a child negotiating difference is admittedly tiny and very limited but children are far more resilient than we ever imagine they will be, while we adults are wrought inside with pain on their behalf. I'm not saying she won't have things that she will find hard - but most parents who have seen thier children adapy=t to medical procedures and routines would say that the pain is all thiers - the parents. I would certainly say that about DS's 4 operations, constant casting fr splints, MRI scans etc. I have been very surprised by his mature attitude to forthcoming huge surgery and restriction to mobility - and your dd will amaze and inspire you with her strength and just the sheer ability to be who she is despite everything she faces.

I don't want to sound as if I am making light of what you have discovered. I'm not - I'm sending hugs for your heartbreak.

charleymouse · 02/04/2008 23:32

LG&T your profile pics of P look great she is a beautiful girl and you must be very proud.
It is the dreams you have of her future you have lost. You need to dream a new dream encompassing what you now know and help her to fulfill it. That way your dreams are not lost they are amended and revised. I think your egg idea is great as a backup for her future if she should want children. My dads cousin used donated eggs as she had an early menopause aged 25/26 and ended up with twin boys and we both know they are wonderful don't we. .
Sending you big hugs and strong tea with 6 sugars in for the shock. (plus a gin in there for morale)

WendyWeber · 02/04/2008 23:57

Hi, lg&t - I missed this thread yesterday, and haven't read it all today either, but I just wanted to say that I have often looked at the pics on your profile before (not in a stalkerish way, honest ) and always thought what a lovely family you are and how very precious DD must be, in amongst all those boys!

She is a beautiful girl and still has all the potential she ever had to be a light in all your lives. It sounds as if you are already coming to terms with the change in direction ahead of her (and you) and I'm sure you will cope magnificently with whatever the future holds.

XXX

Mrsjaffabiffa · 03/04/2008 08:39

xxx this morning for you.

EffiePerine · 03/04/2008 09:31

LG&T, have been off MN for a day or so but have been thinking about you - so sorry that it was bad news but that you've had so much help from here already. You must be running round dealing with everyone at the moment - please take a little time to look after yourself as well.

kayzisbroody · 03/04/2008 09:44

She is gorgeous LG&T, just like her mummy.

I hope you are feeling a little better.

largeginandtonic · 03/04/2008 11:07

Thank you Blu, i am trying to be positive. It could be worse, i am grateful it is not. I hope your ds#4 is ok? Operations, hospital visits with children are the worst part of parenting. It is so hard to stand by and watch it all happening to them.

Ladida thank you so much for all the inside info, i have no idea what to expect and it is great to hear it will not be so intrusive and easily managed. She is a tough cookie and i am sure she will get to grips with it all.

Wendy stalkers are allowed

Charley yes we do know how gorgeous twins can be, i am very glad she managed to have them. She must be so pleased The pain you have gone through i cannot imagine. I feel a fraud to even be upset when people like you, Trips and Shabshave gone through so much. You are a lovely strong lady and i will sap a little of your strenght for now if thats ok? xxx

Psych thanks for checking on me I am starting to get my head round it. I just keep getting stuck

Elibean i will CAT you if that is ok, it wuold be good to hear about it. I feel this is something positive i can do for her, at the moment i just feel like i am standing by watching as it all gathers around me.

I am not great to be honest, i am not very good at talking about things, MN has helped me enourmously because i dont have faces looking at me iykwim. I have been very sick and have a constant headache over my right eye. It wont leave me for a second, pain killers along with food come straight back up. I am normally very calm and not phased by anything. I am quite worried that i have reached my match, it drove me to the Doctor this morning and the tears fell. I explained a little how i was feeling and said i couldnt cope with the headache and sickness. He has given me anti depressants I have never been so low in my life. I have taken on stress before and managed to ride it out.

I spoke to my mom and she just said before the stress was short lived and you had no time to dwell. Life with the twins was hellish for a year (they were poorly, had a psycho ex dragging me through court) of course i was younger then I feel about a hundred today.

I am so comforted by the thoughts and well wishes of everyone on here though, they really are making me smile through this black cloud i am under. I hope i can shake it off.

DD said to me this morning 'why am i so tiny? I hate being the smallest in my class.' I said well perhaps we could see a Doctor about it and see what they they, she seemed happy about that and i feel i have started the process with her lead. What do you think?

OP posts:
largeginandtonic · 03/04/2008 11:10

I also pointed out that i am short, so is my sister and her Grandmother. I said great things come in small packages

OP posts:
EffiePerine · 03/04/2008 11:15

I'm glad you have a supportive GO - keep talking on here as well . I hate talking about personal or traumatic stuff in RL as well, that's where MN can be hugely helpful. I don;t think it's bad to be reticent either, just do whatever you feel comfortable with.

shabster · 03/04/2008 11:19

G&T Please tell your DD that I am only 4ft 11ins (high and wide ....in my 51 years I have

Snogged the face off boys over 6ft.
Worked behind a bar where the glasses were about 6ft off the ground (with the aid of a small crate!!).
Played basketball at high school with great success!
Played on the fact that I am so short to get attention as in 'aw shabba you are so tiny come here and let me give you a love.'

Being tiny is ace! Keep smiling and give DD a hug from me xx

kayzisbroody · 03/04/2008 11:20

I'm glad you are getting help for yourself too.

I think with your dd wanting to see a doctor about her height will set her up for any doctors/hospital appoitments she'll need to have.

I really really hope you start to feel better soon.

Still thinking of you sweetie. We're all her if you need us.

Blu · 03/04/2008 11:23

Oh, LG&T, this is very, very hard for you - you do have a hell of a lot on your plate. Don't worry if everything is on top of you - I mean don't add worrying about that to your worries, of course it is all too much at the moment.

I think your dd talking about beng small is an excellent starter - maybe posters on specialist supoprt sites will have experience of explaining TS to thier children? She may well be quite intrigued by it all. Mostly children seem to respond best to 'matter of fact' info, don't they? I try to avoid 're-assuring' talk with DS - if he thinks I am trying to re-assure him, he thinks there must be something horrible that he needs re-assuring about, iyswim.

Also - matter-of-fact somehow enables them to own and process the info for themselves, and they feel stronger for that. I tell DS 'well you WILL always have a small foot and a stiff ankle, but your leg will be a bit longer / they will give you pain killers, but sometimes it will feel very sore' (he is having bone surgery). He is surprisingly fine about that.

Anyway, you don't need to rush this, do you?

You are a wonderful parent, G&T - that really is the best she could have.

XXXXXXXX

twocutedarlings · 03/04/2008 11:31

Hi L G&T, I hope you dont mind my posting ive been following your thread over the last couple of days, but i dont think weve met .

I dont know anything about Turners (other that what ive read hear), but i do know exactly how it feels to be told that your child is not the 100% perfect. My DD1 (5) has Aspergers.

She is just starting to notice that she is differant from her classmates and this is something that we are just starting to explain to her. I agree with you 100% that you need to follow her lead, but give yourself time to get your head around it all. It gets much easier.... I promise .

Elibean · 03/04/2008 11:37

I think you said exactly the right thing.

And I like what Shab said about being small, too - my sister is under 5', I'm not much over, and we've had a blast in our (joint!) 102 years

I'm happy to chat via CAT/email, just wanted to let you know I'm away from tomorrow morning till Monday afternoon, but will get back to you asap.

So many wise things said, I can't add much other than hugs....and the knowledge that sometimes its really, really important to hit the low spots before finding the strength/positivity. Sort of like planting very deep roots for the journey, IYSWIM.

Glad you saw your doc too....my dh took ADs for a while, after a major bereavement, and he said it was like wearing a plaster cast on a broken leg while it healed....just a bit of support. Hope they help, and that the head is better soon.

largeginandtonic · 03/04/2008 11:42

Thank you guys, i feel a bit better having said it all. Blu wise words and twocute lovely to 'meet' you and thank you so much. I really dont know what i would do without you all.

OP posts:
moonmother · 03/04/2008 11:46

Have been following this thread and think you all seem to be coping brilliantly.

I cannot begin to imagine how you've felt since you got that dreaded phonecall...I like many others sat watching the clock that day and evening waiting with you too.

I'm afraid I have no experience of Turners.

The only experience I have in regards to your Darling Daughter is that I am 4'11 and as Shabba said being small is great.
I have never regretted being the height I am and in time she will come to realise it makes her even more special than she is already.

If she's anything like my DD (just 8) she'll already be into pop music and have a love of Kylie...being 4' 11 has never stopped her

Thinking of you all

Christie · 03/04/2008 11:50

This reply has been deleted

Message withdrawn at poster's request.