PDA

View Full Version : Update on Appointment



newgirl
8th August 2005, 02:50 PM
Hi,
Just to give an update on what happened today. Our consultant is on hols for the month of august so we got to see the registrar. They took an x-ray out of her brace and there does not seem to be any change of her curve at all. I think this is good :woe: . Our main concern while she was in the brace was that the curve would progress and this has not happened. He was very impressed with the "look" of her back, he expected from looking at her x-ray that her ribs would be a lot more prominant on bending. I personally feel that her ribs have improved from being in the cast/brace, although I didn't know if it was just wishful thinking on my part.
Anyway. due to the fact that she has had the chickenpox she can't have a GA for a while so we are booked in to see Mr. Mc MAnus in the first week of Sept and he will prob cast her that week or the following week.
Not too sure how I feel, am glad that her curve has remained stable, but I think a little bit of me wanted to see an improvement on her x-ray to verify my own feelings about the improvement of her ribs.
Fingers crossed the cast will bring about more improvements in Sept.
Nicola

andrea
8th August 2005, 04:23 PM
Hi Nicola

I think that's a very positive appointment - I think you should be pleased. I have always been told that a brace won't correct (not sure whether this is with infantile or adolescent or both), at best it will simply hold the curve and prevent it from getting worse. I have to admit, I'm not sure about this, but it's the professionals' view from what I've experienced. I'm sure there will always be exceptions to the rule.

How her back looks is very important. If you think it looks better, then it probably does, even if the xray says different. I said to the consultant the other day (yes, another one) that her back felt a lot straighter (ie when you run your finger down her spine) then the xray showed. Honestly, he looked at me as if I was NUTS!!! But what I'm trying to say is I know what you mean. I often think Erin's back looks a lot better, but I know the curve hasn't changed.

I imagine that as long as the curve is flexible, you will get some correction with the casting procedure.

Thanks for updating us. Enjoy the rest of August - make the most of swimming and baths.

Andrea

sins
8th August 2005, 05:14 PM
Hi Nicola
That's good news overall about the curve still holding.it's also positive that she's looking cosmetically good.A mother's instinct is often the more reliable guage of her progress(or lack of it).Hopefully the cast will make a big difference in September.
Sins

Sealy
8th August 2005, 10:56 PM
Nicola,

I know you would have preferred to see some improvement, but stability is good. September isn't too far off, enjoy the swimming and the hugs for now. :-)


Sealy

newgirl
5th September 2005, 02:54 PM
Well we saw Mr. Mc Manus this morning and to be honest I am more confused than ever.
He was pleased that there has been no deterioration of her condition and gave us a choice to remain in the brace and try to get Niamh swimming to strengthen her back muscles or to put her in a cast. I can see his point about the swimming, if Niamh is lying on her tummy and lifts her head up her spine straightens. Obviously swimming is a good way of achieving this position as she would have to lift her head out of the water to breathe. She is too busy to try and achieve that effect on a consistant basis, the child does not sit still for a minute during the day, not even to watch tv which was his other suggestion, i.e. to lie on her tummy on the floor forcing her to look up at the tv.
Anyway my gut instinct was to put her back in the cast and see if we could achieve correction that way, which Mr. Mc Manus is happy to do, she will get a date in the next couple of weeks. Now I am wondering if I was too hasty :woe:
I was reading on the main forum the thread on Physical Therapy from Gerbo and I can see the merits in that approach, but wonder if it is a lot to ask from an almost 2 year old? My other concern is if we were to remain in the brace there is no gaurantee that I would be able to get her swimming, I did have her in the pool a lot over the summer but that was for fun and no serious attempts were made to try and get to put her head in the water. :???: Obviously if she goes into the cast we will do our best to try and get her into the "swimming" position at home.

What do you think?????
What was good to hear is that he has had successes with casting before. Up to this point he has always been very conservative regarding the aim of the treatment, main aim is to maintain. if improvement is achieved it is a bonus. He seemed to be a lot more optimistic about trying to bring about correction with the casting.
We took a photo of her latest x ray I will try and post it later.
Like I said more confused than ever :woe:
Nicola

sins
5th September 2005, 03:44 PM
I think go with your gut instinct. Because of previous successes with casting, it's well worth continuing with it.It's also good to see you're being consulted and included in discussing Niamh's treatment.
She's a little young for structured exercises yet I think.Neither of mine at the age of two would sit still for 5 mins and there's a limit to the amount of swimming you can do in a day.Having said that if the next few castings go very well, like with Deirdre,then maybe opt for the brace to hold, once an acceptable correction has been reached.
I think overall it's very good news.
What was the degree curvature before treatment and now in the brace?
Sins

Sealy
6th September 2005, 11:49 AM
Nicola, Nicola, Nicola :-D Have you read the articles on casting by Min Mehta ? Don't waste your time, get her in a series of casts ASAP - there are no guarantees of course, but it's worth a try. If you want Niamh to assume the position you spoke of, adjust her when she's asleep :clap:

andrea
6th September 2005, 01:42 PM
Nicola

It's good to hear that the curve hasn't worsened in the brace. In my (limited) experience, braces are only to hold the curve and prevent it from progressing, rather than to actually correct the curve. I know what you mean about getting them to hold certain positions. I have a wriggler too, and I've more or less given up trying to get her to "swim". She won't - she wants to walk round the pool and just screams if I try and get her into the swim position. I can't wait until she's in a cast and I have a reason to give up! I've tried moving her in her sleep, but unless I stay up all night moving her, it's pointless as she just moves back into a position that she feels comfortable in.

I'd do a couple of rounds of casting to see if you can get a correction while she's still young. You can then go into a brace as Sins said once the correction has been achieved. Don't pin all your hopes on one thing, like casting. It doesn't always work and you end up having all your hopes dashed in one go if it doesn't.

Good luck with whatever you decide.
Andrea
x

gerbo
6th September 2005, 02:19 PM
Originally posted by Sealy@Sep 6 2005, 09:49 AM
Have you read the articles on casting by Min Mehta ?
Celia, can you tell me where to find a good overview on methods of and theory behind serial casting, would like to know more about it (just out of interest, not planning to use it)

gerbo

newgirl
6th September 2005, 02:40 PM
Hi all,
Thanks for your replies, we are going ahead with the casting, I suppose I just got into a flap yesterday because I just assumed that it was our only option and wasn't expecting any other options. My "gut" instinct is that she is just 2 and it will be easier for her to adjust to a cast now than when she is older, we can as you said look at the bracing option down the line if we feel that the casting is not giving us anything above the brace.
Andrea, I am doing my best not to pin all my hopes on the casts, but admittedly I will be so disappointed if it does not show some form of improvement.
Gerbo, Sealy had posted the articles on the yahoo juvenile discussion board she set up a while back, I don't have the URL here (am supposed to be working) but if nobody else points you in the right direction, I will send it on from home tonight.
Thanks again
Nicola

Sealy
6th September 2005, 02:43 PM
Gerbo,

I started a yahoo support group and in the FILES section are most of the articles written by Min Mehta. Another member by the name of Deshea has uploaded the PDF versions of these and many other articles.




Sealy

gerbo
6th September 2005, 02:50 PM
celia; how/where do I find those (so computer ignorant!)

gerbo

Sealy
6th September 2005, 02:54 PM
Gerbo,

I don't think I'm actually allowed to post the website here :???: If you go to the NSF under "Idiopathic Scoliosis - Infantile or Juvenile" you'll see one of my postings for a new support group.

titch
6th September 2005, 03:26 PM
We don't have a problem with other websites being listed :D If there was a problem, we wouldn't have the links section, with your site (http://health.groups.yahoo.com/group/Infan...nile_Scoliosis/ (http://health.groups.yahoo.com/group/Infantile_Juvenile_Scoliosis/)) listed in it :lol:

Sealy
6th September 2005, 03:44 PM
Oops I forgot !!! :badpc: I think I need another cup of coffee this morning or maybe I'll just go back to bed ??! :coffee:

tonibunny
6th September 2005, 04:03 PM
There's also the infantile scoliosis C.A.S.T. (Casts as an Alternative for Scoliosis Treatment) Yahoo Group, who strongly advocate the use of serial casting and are in touch with Miss Mehta. They have a lot of info in their "Files" section (though I guess Sealy probably has copies of most of these anyway).

http://health.groups.yahoo.com/group/infantile_scoliosis/

gerbo
6th September 2005, 04:03 PM
got there in the end, lots of reading again. Thanks a lot!! :D :D

gerbo

gerbo
6th September 2005, 04:21 PM
then you find out how many scoliosis related forums there are, and that is only through Yahoo......

Sealy
6th September 2005, 04:28 PM
Originally posted by tonibunny@Sep 6 2005, 08:03 AM
There's also the infantile scoliosis C.A.S.T. (Casts as an Alternative for Scoliosis Treatment) Yahoo Group, who strongly advocate the use of serial casting and are in touch with Miss Mehta. They have a lot of info in their "Files" section (though I guess Sealy probably has copies of most of these anyway).

http://health.groups.yahoo.com/group/infantile_scoliosis/
Actually I used to be an active member of that group, :( Deshea and I hunted down those articles and posted them to the CAST group.




Sealy

gerbo
6th September 2005, 04:35 PM
so you are kind of a breakaway group then? Factional infighting? Bit like Judean front for the liberation of Palestine etc., etc (See Monthy Python's "Life Of Brian", funniest film ever produced, well, maybe second after "The Holy Grail")

Sealy
6th September 2005, 04:40 PM
Gerbo that is too funny !!!! Things can get pretty tense in these forums :-D You have NO IDEA :rofl: :hammer: : I felt disconnected from a lot of the people I knew, so I started my own support group - I'm able to keep in touch with them this way. The group is not only for infantile curves but also juvenile.



Sealy

tonibunny
6th September 2005, 05:12 PM
It seems to me that your group is concerned with other approaches to Infantile and Juvenile Scoliosis, whereas the other one is simply devoted to promoting serial casting for infants, so I'm sure there is room for both groups Sealy :-)

gerbo
6th September 2005, 07:12 PM
I was (very remotely) considering setting up a yahoo forum for "UK parents (and patients) with ideopatic scoliosis being treated by non surgical methods" or something like it, as on a site like this (however excellent it is) it is mainly people with surgical experiences contributing. (but you are very helpful and nice and supportive, honestly) It isn't that i am feeling lonely, but somewhere outthere there must be more parents like me struggling with similar questions and coming with their own creative solutions, worth sharing. How to acces that? Anyway, the multitude of existing scoliosis groups (73) put me off that one, and it is really about, how do we get this side better known to that group of parents/patients

I did promise to contact SAUK to ask them to add this forum to their links, that might help a bit, but still haven't done that yet (send them some emails, no reply) Will try to phone them, hopefully this week.

Anybody else with good contacts within SAUK in this forum?? Any other suggestions or thoughts?

gerbo

Sealy
6th September 2005, 07:58 PM
Gerbo,

Thanks to your input on the Vert Mooney studies, this is one of the things I'm looking into for Deirdre. I've found a physio place nearby that carries the machinery and believe it or not Deirdre may be able to use the machines !!! Apparently, these torso rotation machines have 1 pound increments, so it won't be a problem ! I think there is an age restriction though, I can't see infants using it :-D Anyhoo, I've added that Vert Mooney pdf article to the yahoo group as well.

andrea
7th September 2005, 01:22 PM
I was (very remotely) considering setting up a yahoo forum for "UK parents (and patients) with ideopatic scoliosis being treated by non surgical methods" or something like it, as on a site like this (however excellent it is) it is mainly people with surgical experiences contributing. (but you are very helpful and nice and supportive, honestly) It isn't that i am feeling lonely, but somewhere outthere there must be more parents like me

Gerbo

I had the same thoughts about infantile scoliosis, as most forums and groups are set up for adolescents and I was initially desperate to talk to some UK mums and dads going through the same thoughts and fears that we were. In the end I figured that if I couldn't find one specifically for infantile, then there weren't enough people out there needing one (if that makes sense - i'm at work typing quickly). A year down the line, I still have yet to meet a single patient in the UK with infantile ideopathic scoliosis (ie currently, I don't mean now grown up :D ).

Not sure what I'm trying to say, but i read your post and it struck a chord, so i thought i'd say you're not alone in your thoughts.

Sealy
7th September 2005, 07:34 PM
Nicola,

I think we've hijacked your thread :-D Getting back to Niamh, ahem....
what are your plans ?

newgirl
7th September 2005, 07:54 PM
Don't worry, it is always interesting for me to read the way these topics raise more and more questions and get us all thinking.
Well our plans are to go into the cast and give it a go for a while. If there is no change after a reasonable amount of time (1 year, 2 years???) we will review the situation again and look at bracing to maintain the curve and exercise if possible.
We have our appointment for Thursday week :-(
Andrea and Gerbo, funnily enough this is something that has been on my mind the last few days, our consultant mentioned that he currently has 2 kids who have growth rods and that he also has some cast successes. I would love to get in contact with some of these parents . My plan is to print off a couple of posters and give them to the orhto nurse specialist who we will be meeting on te e15th. I am sure she also meets all the other parents too and can maybe point them to this site.I will let you know how I get on
Nicola