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Nervous about tomorrow's appointment!

43 replies

weegiemum · 26/08/2009 10:02

Dd2, who is 5 and a half, has had a hip condition known as Perthe's Disease since March last year - so about 18 months.

It means her right hip bone totally lost all its minerals - so pretty much went back to being soft cartilage, and has been re-growing for about a year.

This has meant her being off her feet as much as possible - no running, jumping, hopping, skipping, trampolines, PE at school, etc.... She can walk for 5 minutes at a time, but most places we go she is in her Major Buggy and has a wheelchair at school.

There have been benefits - mainly in swimming, as she can swim 20 lengths in one go and dive in - even off a springboard! - so I am proud of what the hip problem has forced her to achieve in other areas and want to keep that up!

Anyway .... tomorrow should be her final appointment. If all is well, then her hip bone should have regrown, and she will be allowed to do everything she hasn't been able to do.

If it hasn't (no reason why not, but it doesn't happen for 10% of kids) then we are looking at surgery, 6 weeks in plaster, early hip replacement, possibly in her 30's or 40's, possible trouble giving birth - it goes on and on!

1.40pm tomorrow! I am freaking a little - I want it all to be OK!

OP posts:
Are your children’s vaccines up to date?
weegiemum · 27/08/2009 14:47

Some good news, some bad news.

The hip is healing, but not as fast as some do.

So we have to go back in 6 months, and in the meantime: no running, jumping, hopping, skipping, trampolining, dancing etc ... She so wanted to go to ballet!

No scooter either!

But she can now walk around at school - not up and down stairs, but around the different floors.

I'm disappointed, but we'll just have to see how it goes. They were very pleased with her range of movement, lack of pain, swimming ability etc ....

But still - I'm disappointed that she can't just get out there and run like the wind!

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LilRedWG · 27/08/2009 16:41

Oh weegie - I so hoped that it'd be all good news for you and DD.

On the positive side though, DD must be made-up that she can walk about at school, even if not up and down stairs.

Is there a special gift she can have now in place of the scooter?

DrCosyTiger · 27/08/2009 17:18

Oh Weegie that must be disappointing. We had hoped things would go better for you too. Hope you are managing to focus on the positive - things are heading in the right direction and that's great. Just another 6 months to get through and it will pass. Hang on in there. We will keep thinking of you both. And hope you find something lovely to buy for your amazing DD. She sounds absolutely fantastic - a real credit to you.

DrCosyTiger · 27/08/2009 17:23

Oh and Pink Jenny - lovely to hear from you. I'll be the one posting nervously on here in 4 weeks. If we get good news I'm really looking forward to DD being able to wear trousers again. She's spent the whole summer wearing dresses to fit over the harness and the summer we've had in Glasgow her little legs have been a bit cold!

weegiemum · 27/08/2009 18:16

Thanks ladies!

Have calmed down now - dd2 was fairly well placated with a lolly!!!

if it is any comfort, tiger, dd2 has spent the whole Glasgow summer in a dress too, and she didn't have to!

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stleger · 27/08/2009 21:48

Good news, and hopefully a nice Springtime scooter. My dds did 'contemporary ballet' which seemed less athletic than the classical (bare feet, no points). Would she be able to do something like that, with a kind teacher?

PacificDogwood · 27/08/2009 21:52

Oh, weegie, I had no idea (no reason why I should, of course ).
What a rotten thing for your DD to have to deal with - and awful for you to.
Glad you had some good news, though. Hopefully progress will continue.

Pinkjenny · 28/08/2009 09:18

Weegie - glad it's all pointing in the right direction, it's so hard to get disappointing news though.

DrCosyTiger - dd's harness came off on 30th August 2007 (you remember these things!) and I remember I was so glad we could put her in trousers and babygros again. Although iirc, we still weren't able to for four weeks after the harness was removed.

Blardy hips!

weegiemum · 28/08/2009 09:43

We had a major tantrum this morning about going to school, involving her spitting toothpaste all down her only clean school top, so that she couldn't go etc ....

She doesn't want to be in a wheelchair any more, she wants to do gym, she wants to do dancing, she wants to run and bounce. And she just isn't allowed to. I think whta makes it worse is that she is physically capable, but has to be restrained.

I was able to call the school and speak to her teacher, and haven't had a "you have to come and get her" type call, so am assuming she has settled down.

Dh and I also had a huge fight about an unrelated issue last night, which I only realised as I was yelling at him was actually all my frustration about the situation with her hip.

Having a lazy day today, I'm just too tired to do anything much!

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LilRedWG · 28/08/2009 10:45

I'm not suprised that you are all fraught at the moment, you've had a horrendous time.

Can you have a nice chilled weekend together? Is there anything that DD can do that she considers a real treat? Can you and DH get some time out together?

Thinking of you. x

LilRedWG · 28/08/2009 10:48

Just had a nose at your profile - your DC look gorgeous.

franklymydear · 28/08/2009 10:49

oh good luck with that one

to me it sounds like there is no terrible news here:

either everything totally fine and amazing right now

or everything totally fixable which is more problematic and painful

keep positive

and best of luck

franklymydear · 28/08/2009 10:53

oh you've had good but frustrating news - that must be hard to adjust to

keep your chin up - she can do it

weegiemum · 28/08/2009 15:18

Thanks lilred - I think they are rather nice too!

I'm just frustrated with it all, so am thinking about what to do to cheer us all up.

Dd1 is going to friends house after school, and dd2 is bringing her friend home with her on the school bus to play and have tea, which is nice. These friends are also sisters, so when I take dd2's friend home later I can pick up dd1, and as I am also friends with their Mum, may well have a wee glass of something!

Dh working some odd shifts this weekend, from now till 11pm, then 8am-11pm tomorrow.

Frantically trying to think of some new sitting down activities - I feel totally burnt out on drawing/crafts/jigsaws etc ...She has said she will want to play with her Angelina Ballerinas when her friend is here, which is good.

Tomorrow we will go swimming - ds is going out for the day (their old nanny comes and takes them out on their own one every month - so they each get 4 nice days out with her in the year) so we'll swim and go for drinks and cakes afterwards etc!

Sorry, wittering on now. Off to start a thread on sitting-down activities!

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LilRedWG · 28/08/2009 16:43

Witter away. I am incredibly impressed with how well your DD seems to cope generally.

weegiemum · 28/08/2009 22:11

Another massive tantrum this evening cos I asked her to go and get ready for bed, adn suddenly her 'leg is too sore'.

Poor wee thing, how do you keep explaining this to them, how do small children cope with chronic illness?

Lots fo cuddles and promises of swimming tomorrow!

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stleger · 28/08/2009 22:17

God love her it must be so frustrating! It must be hard to explain it in a way that makes sense, too. One on one days out are great - if you manage to find a space in the right child's social life when you're free. My ds (who is 17) was annoyed that I was taking dd1 out for lunch without him...Hope the weekend is good for you. (I often end up with toothpaste down me too, when I rush my teethcleaning!)

LilRedWG · 28/08/2009 22:35

Poor little love. xx

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