We have an appointment on Thursday at the Nuffield Orthopaedic Hospital in Oxford. It's a second opinion from a consultant who has interests in using Mehta casting (we were referred to him by the current consultant, but I'm not sure whether he actually does Mehta casting. I asked his secretary about his use of Mehta casting and she'd never heard of it. Maybe they call it something different?).
It's a very important meeting - so these are a first draft of questions. It depends on his approach how I phrase these, but these are the topics I want to have covered by the end:
1. We don't know whether J's scoliosis is progressive (it's currently static at approx 30-32 * - but we don't know whether that is because he's in soft casts). Is Mehta casting appropriate (what I've read is that it's for progressive scoliosis)?
2. Mehta casting involves risks. I am aware that general anaesthetic carries risks, but what exactly? How quantify? How do they weigh up against the benefits?
3. The current consultant talked about the risks to the lungs of Mehta casting - on the ISOP message board people talk about leaving gaps at the side to allow lungs to expand - does he use any method for this?
4. What exactly is the technique they use? How often is the cast applied? What kind of cast do they use? What is the recovery period? Do we stay overnight? When can I go back to work? What happens in the future - bracing?
5. What are the expectations if we go through Mehta casting? (outlook- best case? probable? worst case? how long continue?)
6. What would the aim be - full correction?
7. Are there other risks?
8. What is his view on life with a 30-32 degree curve if we don't do Mehta and just maintain the current curve?
9. [this just came to mind - if it gets worse and we are using the soft casting not Mehta, then the current consultant will use growth rods. But I know nothing about them. Do the growth rods correct a curve or just stop it deteriorating? - more a question for the current hospital not for Oxford]
10. What is the size of the casts? How far up? Down? Shape? What made of? Do people wear T-shirts underneath (I've read of this on websites)
11. What kind of table and equipment does he have? (websites say this is ***very*** important)
12. How much experience? How many children treated? What outcomes?
13. How long need to wait before starting if we do say yes to this new type?
Monday 28 November 2011
Tuesday 22 November 2011
photos :-)
I am v v behind on photos. Below is a selection from the past few weeks.
J has been enjoying rearranging the furniture (here, at the nursery, when we're out). Can be amusing. Can be a pain in the neck :-)
J doing a good job of pretending to have a cup of tea (with lip smacking)
Ice cream in Minehead
Pointing at the moon (he always spots it - very observant!)
Suddenly J started this thing of standing on his head without his hands! I turn it into a forward roll.
Pumpkin picking at Hatton
You have to choose your pumpkin very carefully ;-)
This is at a local charity shop - I ended up getting the ironing board for 99p. Not bad considering how much he loves it.
This was for Halloween - J was dressed as a spider. Of course a spider's work is never done (mopping, vacuuming - it's a busy life)
And once you've chosen your pumpkin, you have to carve it into a lantern. I would say a pretty good effort from mummy considering I've never tried it before :-)
This was at the Coventry Transport Museum - lots of cars, buses, bikes. J is looking in the hole where you fill up the bus
Froggy accompanies us on our trips to the hospital :-) (thank you D! the frogs are well loved)
This was the blue cast. Please refrain from linking it to any football teams. As Liverpool supporters, we get upset. It matches J's eyes is what I had to keep saying when people asked whether he supported Everton or Chelsea!
Thank you M. for the lovely plane - as you can see, J is really enjoying it.
Ok Ok, it's only a packet recipe - but we had a lovely time making chocolate fudge cakes even so (and eating them)
J made a house out of this box and I pretended ringing or knocking on its door. J sometimes let me in, sometimes didn't - he seemed to enjoy *not* letting me in too :-)
This is the only way to enjoy chocolate cake. Mmmmmmm....
J has been enjoying rearranging the furniture (here, at the nursery, when we're out). Can be amusing. Can be a pain in the neck :-)
Thank you M. for the lovely plane - as you can see, J is really enjoying it.
Our new routine - including fortnightly swimming :-)
One change we have made to the casting routine is that I now take it off on Sunday so that J can have a swim. We've done this twice now with varying success, but I think it'll get better as we get back into the habit of swimming.
A bit of background: from 6-12 months, J had swimming lessons every week (brilliant class called Little Splashers with Jo) and he used to particularly enjoy jumping in and being "swooshed" round quickly in circles in the water. However during the past 6 months he's only had one swim while on holiday, so he's now completely out of practice.
Admittedly, the fact that 2 weeks ago I had to wake him up from his afternoon nap to take him for his swim was never going to help matters (he just clung to me like a baby monkey the whole time and wouldn't let go).
This last Sunday, he had just woken up (the pool is only open at certain times which is a right pain) so it was better, although he was still a bit fragile. We managed to do some of the old things from our Little Splashers days: piggy back rides while I swam; "riding" a woggle like a horse and bobbing up and down to the song horsey horsey; lying on his back kicking with his head on my shoulder while I lay on my back and swam; singing "twinkle twinkle traffic light, on the corner burning bright, green for GO, amber for slow, red for stop and change direction" - to which he was swooshed in a circle at different speeds. He grins broadly at "GO" (I go as fast as I possibly can).
Swimming will help strengthen his back the plasterer said - that's good. Does that mean when he is in cast that his muscles don't develop to be as strong as they would be without the cast? He's very, very active with it, eg doing wheelbarrows where he walks with his hands while I hold his legs, so I would actually say he's very strong even with the cast!
Also, I really did *not* want him to get negative about going in the water (as a keen swimmer myself, I'd like him to enjoy it).
We tried getting his appointments to be on Mondays, but that doesn't fit in with the plaster room's timetable (they have the serious operations on a Monday morning and the consultants don't want to be kept waiting when they're ready for the patients to be cast after operating). I put in a query to the consultant about leaving J without a cast for about 48 hours and was told it's ok and won't have a negative effect on the curve. I have a niggling doubt about that - but I have to take his word for it. The plasterer also said that some children have lots of problems with breathing as well as scoliosis and their casts need to be removed for long periods if they get chest infections etc- but it's considered fine for them and makes 48 hours pale into insignificance.
From a personal point of view, it's BRILLIANT news - we get two baths and a swim and lots and lots of squishy hugs every two weeks...
A bit of background: from 6-12 months, J had swimming lessons every week (brilliant class called Little Splashers with Jo) and he used to particularly enjoy jumping in and being "swooshed" round quickly in circles in the water. However during the past 6 months he's only had one swim while on holiday, so he's now completely out of practice.
Admittedly, the fact that 2 weeks ago I had to wake him up from his afternoon nap to take him for his swim was never going to help matters (he just clung to me like a baby monkey the whole time and wouldn't let go).
This last Sunday, he had just woken up (the pool is only open at certain times which is a right pain) so it was better, although he was still a bit fragile. We managed to do some of the old things from our Little Splashers days: piggy back rides while I swam; "riding" a woggle like a horse and bobbing up and down to the song horsey horsey; lying on his back kicking with his head on my shoulder while I lay on my back and swam; singing "twinkle twinkle traffic light, on the corner burning bright, green for GO, amber for slow, red for stop and change direction" - to which he was swooshed in a circle at different speeds. He grins broadly at "GO" (I go as fast as I possibly can).
Swimming will help strengthen his back the plasterer said - that's good. Does that mean when he is in cast that his muscles don't develop to be as strong as they would be without the cast? He's very, very active with it, eg doing wheelbarrows where he walks with his hands while I hold his legs, so I would actually say he's very strong even with the cast!
Also, I really did *not* want him to get negative about going in the water (as a keen swimmer myself, I'd like him to enjoy it).
We tried getting his appointments to be on Mondays, but that doesn't fit in with the plaster room's timetable (they have the serious operations on a Monday morning and the consultants don't want to be kept waiting when they're ready for the patients to be cast after operating). I put in a query to the consultant about leaving J without a cast for about 48 hours and was told it's ok and won't have a negative effect on the curve. I have a niggling doubt about that - but I have to take his word for it. The plasterer also said that some children have lots of problems with breathing as well as scoliosis and their casts need to be removed for long periods if they get chest infections etc- but it's considered fine for them and makes 48 hours pale into insignificance.
From a personal point of view, it's BRILLIANT news - we get two baths and a swim and lots and lots of squishy hugs every two weeks...
Telling J why
Since we first started casting, I have jollied J along making the trip to the hospital a big adventure: we look at lorries from the car, sing to the radio, greet everyone with smiles, take "froggy" in the pushchair to watch, have a sausage afterwards and look at the pictures of animals in the foyer - it's all part of our trip. J is very used to it all now and anticipates the different things we do. Today he got hold of the broom in the cafe and swept the whole place (under the tables, everywhere) much to the amusement of the other diners and staff.
What I haven't done is to tell J *why* he needs the cast in the first place. So I've started telling him in very simple terms.
Both last night and this morning, he listened intently with a serious face (it may be that my face was more serious as I was concentrating and his reflected that - but I also think he was really listening).
Not quite sure of my exact words but I said his back is a little bent and needs help. Just as mummy wears glasses to drive to help me see and Roy needs a stick sometimes to help him walk, his back needs a little help and that's why he wears a cast - to help his back.
Until his language it at a stage where he can tell me what he thinks and ask questions, we won't know what he actually understands from what I say, but we'll keep revisiting the "why" about casting.
His scoliosis is a significant element of our lives and will be for a long while yet (maybe (probably?) with lifetime implications) and I'd like him to start to understand more about it.
The adoption websites talk about not making telling kids a big deal (different issue, but useful approach I think). So I want to keep it matter of fact.
I like the fact that choosing the colour of the cast, for example, gives him a little power over what's happening (he chose the red again today - blue last time - he's never chosen the purple or neon pink). Having a cast is nothing to hide or be ashamed of and I like the lovely bold colours.
Wear your cast with pride :-)
What I haven't done is to tell J *why* he needs the cast in the first place. So I've started telling him in very simple terms.
Both last night and this morning, he listened intently with a serious face (it may be that my face was more serious as I was concentrating and his reflected that - but I also think he was really listening).
Not quite sure of my exact words but I said his back is a little bent and needs help. Just as mummy wears glasses to drive to help me see and Roy needs a stick sometimes to help him walk, his back needs a little help and that's why he wears a cast - to help his back.
Until his language it at a stage where he can tell me what he thinks and ask questions, we won't know what he actually understands from what I say, but we'll keep revisiting the "why" about casting.
His scoliosis is a significant element of our lives and will be for a long while yet (maybe (probably?) with lifetime implications) and I'd like him to start to understand more about it.
The adoption websites talk about not making telling kids a big deal (different issue, but useful approach I think). So I want to keep it matter of fact.
I like the fact that choosing the colour of the cast, for example, gives him a little power over what's happening (he chose the red again today - blue last time - he's never chosen the purple or neon pink). Having a cast is nothing to hide or be ashamed of and I like the lovely bold colours.
Wear your cast with pride :-)
Thursday 17 November 2011
Even whales need some special bracing sometimes!
I thought you may enjoy the story below
"Veterinarians and animal experts from SeaWorld Orlando are trying to help a whale with severe scoliosis by using a custom-fitted brace"
http://www.orlandosentinel.com/travel/attractions/os-seaworld-whale-scoliosis-20111114,0,688803.story
http://www.orlandos
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