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View Full Version : How did Erin's casting go Andrea?


Abbi
28th September 2005, 05:01 PM
I was just wondering, cos I know u said it was a different surgeon....did they measure her curves at all?
Hope it went ok :-)

Sealy
28th September 2005, 05:14 PM
Oh, was it today ??? I hope everything went well.

mark
28th September 2005, 11:15 PM
So do iAndrea i hope you and Erin are ok and every went to plan

newgirl
29th September 2005, 12:05 AM
Hope all went ok for you both
Nicola :squeeze:

Abbi
29th September 2005, 12:15 AM
I think it was y'day....but I havent seen any posts about it...hope it went well! And Erin wasnt too upset to lose her bunny rabbit brace!

BeckyH
29th September 2005, 01:00 AM
i know andrea's been really busy with moving house and erin's new casting so we may just have to be patient with getting an update :-)

mark
30th September 2005, 01:08 PM
Yes moving house can be really stressful at the best of times. We moved house the day our little Erin was born the removal vans were pulling up just as she was being born.

I hope the moves as smooth and stress free as it can be Andrea

andrea
2nd October 2005, 10:41 AM
Thanks for asking guys. I've been busy with the move and also not been on as much as I felt I needed a break from scoli-world. Not good news i'm afraid. They're not managing to hold the curve and it's getting worse. He didn't even measure it - even i could see it was worse and i'm not an expert.

He wants to do it again in 8 weeks, but i suspect we'll be moving on to looking at other options before long. I can't face the prospect of the next 10 years in casts and braces, even if it means surgery. She hates being back in the cast too and it's breaking my heart.

Sorry it wasn't better news.

titch
2nd October 2005, 10:54 AM
I'm so sorry that the news hasn't been good this time. I guess the best to hope is that Erin settles to wearing the cast again, and gets to be comfortable with it again, and that it reduces it back somewhat - I understand your thinking that other options could well come in to play, and when it comes down to it, the other options are pretty decent these days - growth rods are a wonderful invention, and if used will allow her to develop a pretty normal torso length before the final fusion becomes necessary. Even so, if she gets comfortable in her cast again and that allows it to buy more time before doing anything else, that's a good thing too. I'm really sorry you've had such a blow though :squeeze:

BeckyH
2nd October 2005, 12:40 PM
i can only second what titch said, andrea. there's a boy in the village where i live (he's 13 now, i was in the same primary school class as his older brother) and he has mr tucker too. he's had growing rods in for a while...i don't really know where i'm going with this so i'll just :squeeze:

Thaleias spirit
2nd October 2005, 02:13 PM
Andrea, i'm so sorry you didn't get the news you were hoping for.
I can't begin to imagine how both you and Erin are feeling right now.
Hopefully when you go back in 8 weeks you'll have some better news and plan of actions as to where you go next on all this.

:squeeze:

chele

Sealy
2nd October 2005, 03:30 PM
Andrea,

:squeeze: I'm sure you don't need people asking questions, but I wanted to know the degree of progression in the brace - this is why I'm so mistrustful of TLSO's, they really don't work very well for most young children. I'm sure the cast will bring her back down to the low 30's. I also can't say the prospect of surgery is any better, this is such a difficult decision and it's one that's never taken lightly by a parent. We all worry about quality of life for our children - all of this makes me so sad for you and little Erin :(

sins
2nd October 2005, 04:59 PM
Sorry to hear this Andrea,
I don't suppose there's much we can say at his point.
:squeeze:

Abbi
2nd October 2005, 06:32 PM
Andrea...I am so sorry to hear that the news wasn't good this time!

**HUGS**

jfkimberly
2nd October 2005, 11:55 PM
Oh, Andrea... I'm so sorry it wasn't better news. Was the progression very severe, or is it just that you're (understandably) disappointed that it didn't hold her steady?

Has she at least gained some spine length in this time? Every bit she grows is a better prognosis for the future.

Erin is quite the little lady, already... does she have some idea that it wasn't good news at the appointment? How is she doing?

gerbo
3rd October 2005, 09:12 AM
and remember, as a rule, it is mostly the parents who suffer more than the children, they can be upset at times and may be protesting, but they are wondefully resilient and adjust to any, and i mean any, given situation very rapidly,

still, can so understand your feelings.

gerbo

newgirl
3rd October 2005, 02:17 PM
Andrea,
I am so sorry you did not get good news. Did they discuss the possibility that the cast may bring her back to where you were before the bracing?

I can understand you been completely disillusioned at this stage, but as the others have said there are other options these days and if you do have to go down the route of growth rods, there is a lot of literature out there supporting their use.
What is the story with regard to the consultant, have you been permanently reassigned to a new consultant or are you watiing for your old one to come back from sabbatical?
Hope the house move went ok for you. What a week :woe:
:squeeze:
Nicola

andrea
3rd October 2005, 02:59 PM
Thanks for all your kind words. To try and answer your questions:

Sealy - it's very easy for us to point our fingers at the brace and say we shouldn't have done it, but i'm not entirely convinced that would be fair. When she was last measured in the brace it was holding her at 34*, which is exactly the same as the cast was holding her. It may have simply been a growth spurt that has caused the progression - the same thing happened when she was in a cast, so things may not have been different if she was still in a cast (if that makes sense).

Kim - I don't know how severe the progression was as it wasn't measured. It was enough for him to decide to cast again in 8 weeks, and I guess he didn't need to know more than that. For those who know Stanmore, you know that you barely get 5 mins with the consultant. Questions and measurements are usually dealt with at clinic at Bolsover St. Erin has no idea it was bad news. All she knows is that she's back in the cast. She tells me daily that she doesn't want it on and told me this morning that she had a lovely dream about not being in the cast last night. Not much I can say to that!

Nicola - we are still under Mr Taylor, but are currently seeing whoever is available (basically) until Mr Taylor comes back in March. At the moment we are under Mr Lehovsky, who does seem to be very good. She's just a difficult case.

Fingers crossed for the next appointment.
Thanks again.

Sealy
3rd October 2005, 03:42 PM
Andrea,


There is no "ideal" situation when it comes to scoliosis in very young children. I wish I could wave a magic wand and make things right for Deirdre and countless other children but I can't - there is no easy way around this. Deirdre complained a lot this past summer about being in a cast, she wanted to be able to go swimming etc., She has also asked me quite a few times why she has to wear a cast and I just explain to her the best way I can that she has a crooked back and we're trying to get her straight. I also know that being in a rigid brace is not much better, so no big deal. I don't know if our case is very much different than yours, I know that Deirdre is pretty straight in the cast and there are cases where children have been "cured", I know this may be a possibility for Deirdre but I also know that she may have to wear braces until she finishes growing.

Many children who undergo surgery at a very young age face countless surgeries until they finish growing i.e., the veptr or growth rods. I don't know if you can say that these children live or lead "normal" lives. They have to be very careful not to get pushed from behind by other children and sooner or later many of them face complications from surgery - many of these children live with pain and are on constant pain medication. Basically what I'm trying to say is that I don't know what the right answer is, if there is such a thing. :-(

Oh, I was wondering how close are you to Spain ? If you have the money or time, try to arrange an appointment to see Manuel Rigo and see if he can come up with anything for Erin ? It's worth a shot !

mark
4th October 2005, 01:18 AM
Hello Andrea i am so sorry to read that Erins progress has'nt been as you, and everyone else on SSO would have hoped for. It breaks my heart reading some of the posts in this forum and i admire the strength and resilience you mums have for your families.

Like Sealy, i wish i had a big magic wond i could wave and make things right for you all but i have'nt. Sorry there's nothing more i can do other than offer you some hopefully comforting words, my heart goes out to you and all your family

Sarahs Mum aka Chrissy
6th October 2005, 06:10 PM
I've just read this post Andrea, and I'm so sorry that Erin's progress hasn't been the news you wanted to hear.
Being a parent is difficult enough, but when you have this to cope with as well it's so very very hard. and me heart goes out to you.
But having said that, children are very resilient and bounce back, my own experience with Sarah has prooved this time and time again.
Please keep positive and try to see the light at the end of the tunnel.
With :squeeze: :squeeze: Take care,
Chrissy. XXX

Nicki
10th October 2005, 12:32 PM
Hi Andrea

Just wanted to send you a hug :squeeze: you must be feeling very low.

I hope that the next casting has better results for you both.

I am thinking of you and send you my love.

Nicki