View Full Version : Appointment update
21st June 2005, 05:59 PM
Just a quick update for you guys.... The appointment today went better than last time in that things moved a lot quicker from the moment we arrived. It's probably because only 2 beds were occupied on Coxen today and the nurses were doing some serious thumb twiddling. I've never seen it so empty!
Once we had the cast taken off, we had a chat to the anaesthetist (seems to be more productive than talking to the registrars!) and she suggested that Erin move to a brace for the summer, seeing as it's going to be a hot one. Seemed like a good idea to us, and they agreed to monitor her every 6 weeks to see if the curve is holding at the same degree as the cast is holding it now (34*). If it shows to be progressing again, we'll put her straight back into a cast, but I think it's worth a go. It'll give her skin a chance to recover from the casting, and enable her to do some swimming and build up muscles which have quite clearly suffered from not being used. I'll also be able to give her nice back rubs and massages. I don't know what type of brace it will be yet, but it will have pink bunnies on it to make it a bit nicer, and they are rushing it through to be ready in 2 weeks. They put her old cast back on to give her some support until then, although I don't know if it's applying that much pressure. She'll go back to casting in the autumn.
I'm a little bit dubious about whether this will put her back at all, but i'm willing to give it a go. Recent castings haven't reduced the curve below 34* for a while, so if we can hold it at that and give her some fun over the summer then I'll be happy.
I'll post some pics of the brace when we get it.
21st June 2005, 06:02 PM
That's great Andrea, It's so encouraging that the curve is holding so well.
it'll be nice for her to be able to swim for the summer and feel the air on her skin.Looking forward to seeing the brace pics.Nicola has a pic of Niamh's little butterfly brace in the gallery, I take it that it'll be something similar.
21st June 2005, 06:57 PM
Wow Andrea !
I'm really excited, apprehensive AND jealous at the same time - gosh, I get so involved don't I ? I know Erin will have a wonderful time swimming and bathing and doing all the summer stuff without being restricted in a cast. I wish I had the guts to do the same with Deirdre - the day will come soon though. So it was the anesthesiologist who suggested going into a brace ? That's kind of unusual, didn't you have a chance to speak to the ortho ? Oh well, I guess things are done differently in your neck of the woods.
21st June 2005, 10:23 PM
I think that having casts in the winter/braces in the summer is the standard practice for treating kids at Stanmore. I always had casts/braces alternately like this, and loads of the kids I met on the Coxen Ward also did - I used to meet the same kids every time I went back for a cast change as they were being cast every two months, the same as me :D By June we'd all be like, "I'm getting my brace now, see you in October!"
21st June 2005, 10:24 PM
That is so great that Erin will have the summer out of the cast. You and she will really enjoy the freedom that the brace allows in the hot weather, Niamh has been in the pool most days recently because it is so warm here at the moment and the tummy tickles and back rubs are so precious as well :kiss:
We also have the freedom to go to the beach and make sandcastles, which is something we may not get to do again for a long time :cry:
I know it is a bit of a worry whether the brace will hold the cast as well as the cast, but to be honest, Niamh's brace is not the most sophisticated and we definitely feel that she is holding if not improving in it :rofl: I guess her next x -ray will tell all!
In terms of her skin, she does get what I would say are heat rashes with the brace as well, but I have found a lovely cream here that seems to heal it up in a few hours. It is called Calendula Baby cream by Weleda, if you would like I can post some onto you to try if you PM me with your address. It might be a good idea to get some close fitting 100% cotton vests with no seams for under the brace, there is another post on sourcing liners from Jonny, although what works best for us is the baby vests that button underneath, there is no danger of them sliding up and wrinkling under the brace. Erin is probably a bit old for these though.
Hope you enjoyed your holidays,
21st June 2005, 10:57 PM
Butterfly braces and pink bunnies!! Man no fair, my braces use to be soooo ugly. :)
22nd June 2005, 12:55 AM
Andrea....I'm am so glad that Erin's appt. went well today, and that Erin's curve is holding also!
Great news that Erin can have a brace for summer....at least she'll be able to feel a little more free....and can get out and enjoy lots of summer activities like swimming! Brilliant! and the pink bunnies is also and added bonus! :-)
22nd June 2005, 07:16 PM
I forgot to ask...did they just measure Erin for the brace or cast her ? They didn't put her under anesthesia did they ?
Anywho.... I consider this website a "second home" and I plan to continue posting here, but I just want to say that I've started a new support group ( as if we need ANOTHER one ?! ) for parents to children with infantile or juvenile scoliosis and ANY and ALL OF YOU are welcome to join. I just want you to know what's going on in my life right now. If you want the link, just let me know "K" :-D
22nd June 2005, 08:19 PM
Well done Celia,if you like you can submit your link to us, just go to our links section on the main menu and add your details.
Good luck with it and I know it'll be a great source for parents.
22nd June 2005, 08:39 PM
Thanks everyone for all your kind words.
Sealy - they casted her for it under anaesthesia. They cast the top of her body and then turn her over and cast the bottom (without traction). They they put the two together and fill the space with something like plaster of paris and then they have a mould of her body. They then shave off parts (like a rib hump) that need to be pushed in and mould the brace around that. Theoretically the brace then pushes in the bits it should, thus maintaining the curve. Hope that makes sense.
I'm sure if we had had the success that you and Deirdre have had, I'd be reluctant to do it, but seeing as we are still very much at the beginning of the process, I don't feel we have as much to lose.
I'd be interested in joining your group. I've been thinking about being a regional secretary for SAUK specially for infantile scoli, although haven't volunteered myself yet! If I do, i'll be sure to point people in your direction :D
22nd June 2005, 08:46 PM
Okay, maybe a silly question here but its all very new to me,
but why would they need to use traction whilst casting a child?
22nd June 2005, 09:55 PM
Because you want to apply the cast while the patient is as straight as possible. However you cast them is how they will be held for the duration of that cast. The cast is fixed and "permanent" (as opposed to a brace which can be removed and reapplied), and there are no straps to tighten to increase correction. So they use traction to make as dramatic a correction as they can achieve, and then hold it that way for months.
22nd June 2005, 11:08 PM
I like silly questions that I can answer! Doesn't happen very often :D .
Kim pretty much said it all!
23rd June 2005, 04:27 PM
Thank - You Sins !
I've come to the realization that there just aren't enough support groups to *contain* me. I really have this need to talk and share information ( I really find it therapeutic ). Well... it sure beats going to a shrink, huh ?! :-D Anywho... I've added the link.
Thanks for the great description. It's VERY interesting to know how these things are done.
27th June 2005, 01:29 PM
Do you think Erin might be getting a Milwaukee ? Did they say anything ?
28th June 2005, 08:57 PM
No, I don't think it will be a Milwaukee although I previously would have thought so. It was a really odd one because everything was agreed in theatre, and my head was spinning with whether I was making the right decision or not. I did ask about a milwaukee but I honestly can't remember what he said. I just have a feeling that he didn't agree.
Sorry I couldn't be of more help. Still waiting for appt for the fitting - hopefully next week. We've already got the appt through for the checking and follow up, but not the brace fitting.
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