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andrea
22nd September 2004, 10:05 PM
Hi all

We're just back from our second casting, which has kind of left me feeling rather pessimistic about the procedure working. Erin was an absolute star, yet again, and various people fell in love with her and wanted to take her home. For the first time, i felt a bit disappointed with the treatment at Stanmore. Not with the doctors themselves, just with the administration side of things. They lost her notes, and they were still missing on the morning of the casting. Trying to keep a 2 year old from drinking or eating for 5 hours is nigh on impossible, but we had to do it while they tried to find the notes as they wouldn't treat her without them. They then discovered they were there all the time, they just didn't see them, and then we had to wait for theatre to be ready. So, by the time we went down she was hungry, thirsty, tired and distressed. Consequently, she woke up from the GA very distressed and screamed for Britain, but then slept again and woke up fine.

In terms of the success of the casting, we didn't get much of a correction this time. Having gone from 62 degrees to 38 degrees, I guess I was hoping for a similar correction, but we only went to 36 degrees, although this was taken lying down whereas the others were taken standing up (another cock-up) so perhaps we can't compare like for like. The x-ray taken out of the cast looked appalling to me - just like the original one, and her rib hump was upsettingly significant too, making me wonder if the removal of the cast would would ever be a possibility without this happening. I got quite upset this time, made worse by the nurse going off on one because we were glancing through her notes while she was asleep and she said we weren't allowed to see what the consultant had written about her.

I know this is only her second cast, and we have a long journey ahead of us, I'm just feeling really disappointed by it all. The doctor is remaining positive, but the pessimist inside of me wonders if he would tell us if he wasnt. We have a check-up in 6 weeks time, when she will be x-rayed again to see if the curve is getting worse or holding, so I guess it's fingers crossed until then.

Thanks for the ongoing support all of you - I'll try and catch up with your posts in the next couple of days.

Andrea and Erin
x

tonibunny
23rd September 2004, 12:09 AM
Hi Andrea,

Please try not to worry too much. The fact that Erin's curve was reduced to 38 degrees through casting is wonderful - and remember, there's always a 5 degree margin of error when measuring curves. Her curve could well have held, or even improved slightly!

Plaster casts and bracing held my curves really well until I was ten years old.....and these weren't even aimed at correcting the curves in any way, just holding them. You can see how brilliantly successful my treatment has been, and that was all a long time ago now! Scoliosis treatment has improved amazingly, and Erin is in the very best hands. Please, please don't be upset :hug:

jfkimberly
23rd September 2004, 05:54 AM
Try not to be discouraged, Andrea. The goals of casting are to keep the curvature from progressing and hopefully correct the curve somewhat. With the first cast, you saw remarkable correction, and the second cast has held it stable. That's an excellent result!

Now tell me more about the nurse getting on to you for looking at Erin's chart... do you not have the right to see what it says?

ivanleg
23rd September 2004, 01:57 PM
Don't spend a second worrying about that nurse, you're probably entitled to see your notes under freedom of information if you try hard enough. I once glanced at my notes and found out I had been diagnosed with Marfans syndrome; they never actually told me the b*&tards. So sod the nurse.

As for the curves I think that is an excellent result so far. If Erin can hold them around that figure until she's older then that will be a great result, perhaps she could have different treatment then.

All the best to you and Erin. :niceone:

andrea
23rd September 2004, 02:09 PM
Thanks all. I know you're right, and she's doing well. By my own admission I'm probably the most impatient person I know, and keep expecting her to be sorted in a matter of months, whereas in my head I'll know it'll be years.

Under the Data Protection Act we are allowed to see anything that is written about us by anyone, but apparently we have to apply to the consultant to see our notes (as if they haven't got enough to do!). The nurse told us we were welcome to view her bed notes (hmm, not very interested in what her temperature was, thanks anyway) but couldn't see her hospital notes without the consultant's knowledge. She admitted that she wouldn't let us as she would get into trouble. The reason we wanted to look was for exactly that reason - to make sure they weren't hiding anything from us, and of course when she stopped us looking I immediately thought that confirmed it. It's amazing how suspicious you become in hospitals.

Thanks again for your support. We'll hang on in there.
A&Ex

sins
23rd September 2004, 06:28 PM
Hi Andrea,
I would have been livid over that experience this morning.Sometimes admin and nursing staff find themselves under so much pressure that sometimes they forget that they're dealing with small hypersensitive children and concerned parents......not that it's any excuse.Hopefully as the exhaustion wears off you'll start to feel a bit better.I know what it's like to worry about a child, even sitting with them during a minor illness and wishing with all your heart you could just do something make it better.Don't be too disheartened by the small correction acheived.I'll bet as she grows you'll see a significant improvement.yes it will take years....something so simple as a brace on someone's teeth will take 2 years so if you consider straightening a spine and all the complexities involved, you'll be in it for the long haul.
I can't understand why your consultant's notes are not available for you to read.I guess all you can do is ask him for as much information as possible.
Just remember we're all here for you.
Sins

andrea
24th September 2004, 02:55 PM
Thanks Sins. I've never really thought of it those terms (like brace on teeth). My niece has a brace and has had it for years already. Perhaps they'll both be straight together. I'll try and be more patient, promise.

newgirl
27th September 2004, 03:13 PM
Hi Andrea,
Sorry to see that you were disappointed with the 2nd cast and that you had a miserable time in the hospital. I can really understand your impatience, as a parent you want everything to be fixed NOW.
Like the others have said, the improvement from the 1st cast was amazing so it would be unlikely to have that degree of success again so soon. The important thing is that the curve is still improving.

I can only imagine your frustration at the delays and fuss in the hospital, and that thing about the doctor's notes is infuriating. Would you consider getting the consultant to sign for the permission before your next appointment? Personally I cannot understand why there should be such restrictions on your daughter's notes, after all under the freedom of information act you are entitled to view the information anyway. Is there a Freedom of Information officer attached to the hospital and could you contact them regarding access to the notes?
I have to say we have no difficulies in that area here, they are more than happy to show me her x-rays and reports etc, although having a hospital background does help.
Best of luck
N

Abbi
5th November 2004, 01:53 AM
Hi Andrea (and Erin), try not to get discouraged...it may seem like you have to wait forever, but it'll work out in the long run!
I'm glad Erin is co operating, and responding well to treatment, the correction seemed good! I don't really understand a lot about casting! Does Erin get a new one every six months?

andrea
5th November 2004, 04:25 PM
Hi Abbi, thanks for your note. She has the cast replaced every 3 months, or thereabouts, depending on how much she grows. She doesn't seem to be growing much at the moment, so it may be longer next time.

Abbi
5th November 2004, 10:34 PM
so...will this totally fix her curve or just keep it at a low degree until she is old enough for bracing?

andrea
7th November 2004, 11:29 AM
Fixing her curve is the best result we can hope for, and maintaining it until she can have bracing/surgery is our second best hope. Not holding it and it actually continuing to curve is the worse case scenario, but we don't like to think about that. Every time she is casted, they do it on a traction table that stretches her spine so they can manipulate it into a straighter position before plastering her up and putting pressure points on the right areas so it keeps it in that position. We've got a check up this week and more xrays to see if she's growing in the right direction. Fingers crossed!

sins
7th November 2004, 01:00 PM
Good Luck Andrea,
We'll be willing that spine to straighten.Hopefully this appointment will be less traumatic than the casting experience last time.Do you have your list of questions ready for the consultant and ask him for her notes if you can......just for your own peace of mind,I must say though he really seems to be doing good things for her and I'd have every confidence in her treatment so far.
Sins

andrea
7th November 2004, 07:52 PM
Thanks Sins. I'm not sure we're seeing the consultant this time, it'll probably be the senior registrar that discharged us from Stanmore last time. I always write the same questions down, and each time no one we see will give us a direct answer. I know they just don't want to commit, but it would be so nice if we just had a time-frame or a light at the end of the tunnel. I completely understand why though - they simply don't know - but i don't seem to have any questions other than the ones they can't answer!

Absolutely everything crossed for good x-rays!

jfkimberly
7th November 2004, 09:58 PM
Originally posted by andrea@Nov 7 2004, 01:52 PM
... but i don't seem to have any questions other than the ones they can't answer!
Maybe SSO answered all the general questions for you. ;-)

You're lucky, I think. My mother kept getting predictions from the time I was born until I was about seven years old, but they were not pleasant predictions. They all proved to be wrong, too!

Good luck with the results. I hope you get some indication of what you can expect in the future. I'll be thinking about Erin this week. Please let us know what you find out.

andrea
7th November 2004, 10:29 PM
Thanks Kimberly. I'll certainly let you know how it goes, even if it's not good news *tries not to think about that*

SSO has certainly answered a lot of my questions, so you're definitely right there. I just wish I could plan the future a bit better with stuff like whether she'll still be in the cast at school and the difficulties she'll face etc. I'm one for forward planning I'm afraid, and it's very difficult. On the flip side though, I'll know she'll cope with whatever is thrown at her and for that I'm grateful.

Appointment is Thursday morning, so I'll update you after that.

Abbi
11th November 2004, 08:52 PM
im sorry to hear that erins curve has gone up! I hope you get a better result next time. Im still quite interested in plaster casting....i dnt really understand it though!
What age if they needed to, would Erin get a brace?

andrea
12th November 2004, 10:59 AM
Now that's an interesting question Abbi. Unfortunately one without an answer. At the moment, we don't know any details in terms of whether it will work, how long she will be in a cast, what will happen when she is too old for casting or whether surgery is inevitable. It really is a case of taking it cast by cast and seeing what happens.

Abbi
12th November 2004, 03:31 PM
I did see on the extreme surgery cd that i got from kim, that a little girl of six got growing rods put it!
Personally I wouldn't but a little kid through surgery as extreme as that!
Well I hope that the casting works and that she wont require any major treatment

jfkimberly
13th November 2004, 06:34 AM
Abbi, sometimes when the scoliosis is really severe, surgery is the only choice. I had surgery when I was 11 months old, and again when I was 18 months old. I probably didn't like it much at the time, but I don't remember a bit of it today. I wish they'd had the growing rods available when I was an infant... My health as an adult would be much better if I'd been born a decade or two later.

tonibunny
13th November 2004, 02:32 PM
Ditto what Kim said - they don't do surgery on little children unless it is utterly necessary. I think Kim's surgery was done at the youngest age out of all of us SSO "regulars", whilst Vicki had surgery at five and I had my first operation at 10.

Luckily, children are very resilient and cope with surgery very well! They just bounce through it, much better than adults :D

Jonny
14th November 2004, 12:50 AM
I wouldn't say young children are resilient, just that they don't remember the bad bits as well as adults...

tonibunny
14th November 2004, 01:12 AM
Nope, I don't agree....if you grow up with a condition then you get totally used to it, it's "normal" for you and you just deal with it because you've never known any different. Maybe Kim and Vicki think differently though - this is just what I believe, from my own experience :-)

Abbi
14th November 2004, 01:50 AM
Kim.....do you have rods and stuff in? Does that mean you arent tall now? im confussed?

Rowena
14th November 2004, 02:51 AM
I'm sorry, I have to agree with Toni Bunny Here. Go and look in your local children's hospital, you will see a bunch of kids who are able to smile,even though they might not have any hair, be confined to a wheelchair etc whilst many adults in their situation would be complaining and whinging.

And from my own personal experience, I saw wearing a backbrace as the most normal thing in the world. When I was little I believed that everyone wore a backbrace as well, and if they didn't well they were just strange lol. The brace never stopped me doing what I wanted to do (imagine a five year old hanging upside down on the monkey bars, brace, dress and all, oblivious to the stares and looks). And I thought it was pretty cool getting to cover my body in stickers and get balloons to cover my feet to make my AFO's.

And I do remember it all, my scoliosis journey that is, I have memories from about the age of three onwards (and being diagnosed at 15 months of age thats pretty much all of it), and I remember the good as well as the bad.

When you come out of the brace, after wearing it from so young, you actually find it quite strange (well i did), cause your muscles now have to work and basically cause you don't have to wear a brace anymore. YOu simply don't know what its like to be braceless

Row

jfkimberly
14th November 2004, 07:19 AM
Originally posted by Abbi@Nov 13 2004, 07:50 PM
Kim.....do you have rods and stuff in? Does that mean you arent tall now? im confussed?
No, Abbi. When I was born, I was lacking in vertebrae and/or several were fused together. It was part of what has recently been diagnosed as Klippel-Feil Syndrome (I was born with just one kidney, and I have two heart valve problems as well). My spine was already curved at birth, and progressed rapidly as I grew that first year. So at eleven months, they fused my spine without instrumentation to stop it from growing and stop the progression. They got some correction, it would seem, because I'm fused at around 60-ish degrees.

Since it stopped the growth, my thoracic spine is the size of an 11-month-old's. Everything below the fusion grew, but I didn't grow much above the fusion. So my torso and neck are both relatively short. Problem is, because this was all in my thoracic spine, I've got "Thoracic Insufficiency Syndrome" as a result of both the scoliosis and the fusion (without the operation, I'd have even less lung capacity because the curve was that bad and getting worse... in fact, I probably wouldn't be alive). That means that my chest cavity is too small for my lungs to expand enough to provide oxygen to my body. I get winded just walking around the grocery store, and if I get sick it's a real struggle for me just to get up and get dressed.

Based on armspan I would have been about 5' 5", but I'm actually around 4' 11"-ish. So I'm missing about six inches, all from my thoracic spine.

jfkimberly
14th November 2004, 07:35 AM
Originally posted by tonibunny@Nov 13 2004, 07:12 PM
Nope, I don't agree....if you grow up with a condition then you get totally used to it, it's "normal" for you and you just deal with it because you've never known any different. Maybe Kim and Vicki think differently though - this is just what I believe, from my own experience :-)
I absolutely agree with you, Toni. This is all I've ever known, and there are no "good ol' days" for me to mourn. Actually, I was almost oblivious to it all as a kid. Going to the scoli checkups were a routine that I did. I knew my older sister didn't have to do it, and I knew it was because there was something "wrong" with me that wasn't wrong with her, but outside of the hospitals and clinics, I did everything she did.

...well, she could run faster, and would sometimes run off with her big friends to play without me, but I even attributed that to her being older and bigger... not because of my scoliosis.

It's like this stupid story.... I don't know if you've ever heard the "brain sucker" joke, but it goes like this: You put your hand on the child's head with fingers sprawled out like a starfish, and you move your palm up and down like a suction cup... then you ask the child, "Do you know what this is?" When they say "no," you tell them, "It's a brain sucker. Do you know what it's doing?" They'll again say "no," and then you say, "It's starving to death!" Now, the implication is that the kid has no brain, and the joke's on them. It's a very simple concept. But I grew up hearing that joke (my dad thinks he's so funny!) since before I was old enoug to talk... I knew the punchline, and I'd always say it to him, but I never really thought about it. So I was 20 before I understood the joke.

The same way, it wasn't until I got much older and started to notice that I looked different from other kids that I really started to understand what was "wrong" with me. But it was a slow and gradual realization that allowed me to absorb it slowly over time... I never had that shock of diagnosis that the older kids get. And when other kids asked me what was wrong with me, I learned very early on to tell them that I had scoliosis. And when they asked what that was, I would say "It's a curvature of the spine." And when that wasn't enough, I would hold my finger up straight and say "Your backbone looks like this, but my backbone looks like this" and I'd bend my finger. I saw my xrays, and I knew the words to say, but it didn't really mean anything to me until I was in my early teens.

Amazed Jean
14th November 2004, 09:10 AM
Kimberly, You said a lot in you last to responses here. Children do just learn to live with what gets handed to them. I used to think when I was young -oh, if only I didn't have to wear dorky glasses and then it was if I could gain some weight and then if i didn't have a totally screwed spine. But none of those things ever really changed and there wasn't a choice but to move on. I was very shy until later when I went to college and the jerky idiots I went to high school weren't around and I made friends playing poker with the guys in the lounge. I found out that I was just me to them. I laughed and partied and went to classes and generally made myself fit in. Anyone who gave me a hard time - I just ignored. It was so much easier to be my own person. By the way, I still wear dorky glasses and have skinny arms and legs and have a hunch back and I'm really short. So I live with it. Sometimes it makes me an emotional disaster -sometimes I handle it fairly well but it's always going to be there.

Abbi
14th November 2004, 02:04 PM
aw right got ya now.....so you have a shorttop half and a sorta long bottom half! right.....