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
Tuesday, 25 October 2011
Cast number 9
We had a very full and wonderful weekend (did LOADS and J was very smiley and happy). If I have time I have some nice photos and comments I'd like to write up.
However, nights have been a bit rough (we've been up a fair bit eg 3pm, 4pm, 5-5.30pm) and J was very tired yesterday (Monday) so the bathtime ended in tears. The main reasons he got upset were 1) he's v tired, 2) I wouldn't let him have the hairdryer in the bath (!!) and 3) I insisted on washing his hair (once every 2 weeks is not exactly frequent as it is). Felt a shame though - I look forward to our fortnightly bath so much and it ended with him wailing to get out...
Apart from that, nothing terribly different from other cast removals/castings.
He was very upset about 1am this morning for quite a while and I ended up taking him into bed with me (something I haven't done in a long time). Nice to get extra cuddles with a squishy baby. Such a different thing to hug a squishy baby from a hard cast. I don't notice it usually - I've got used to just stroking his head rather than rubbing his back when he's upset - but feeling the contrast when the cast comes off is... well, it's hard to put it into words. We've had nearly 6 months of casting now. A third of J's life. With a hard non-squishy baby...
All I can say is that I really really really miss hugging my squishy baby...
The sensible parent part of me knows that it's for the greater good. The rest of me misses it like mad.
He was very tired when we got up (about 6.45) and it made the casting quite difficult as he would NOT stay still.
He was offered the choice of purple or red cast (I showed him the packets) and he pointed to red. No idea whether he understood that he could have a purple one if he wanted it - but he's usually fairly good at making choices like that (eg with his wellies, he was adamant he wanted George pig ones even though at that stage he'd never seen the TV show) so you just have to accept that's what he's "chosen".
The plasterer said he had 3 other little boys coming that morning for similar castings! That number surprised me. We don't see anyone else like J when we're there. Plenty of older people with crutches, wheelchairs, bent over backs etc but no little boys.
The plasterer told us that our consultant had written to Oxford about getting a second opinion and he'd seen the letter but when I asked to see the letter I wasn't allowed. I just rang the consultant's secretary to ask for a copy and she said it wasn't Trust policy to let patients see correspondence but she said she would ask Mr M whether I could have a copy. I think Mr M said he'd send a copy to my GP when we last saw him - I need to check with her as well.
The plasterer was sympathising about the lack of progress and saying it's up to me if I choose to go elsewhere- but choose is a difficult word. Getting information about J's treatment or scoliosis is like pulling teeth! Actually, pulling teeth is quite easy in comparison. Painful but quick. I need a better analogy. What's painful and takes a LOOOONG time??
There are posters up at the hospital saying they'll be introducing car parking charges from November. Such a pain. It's currently costing at least £12 in petrol each time we go (60+ mile round trip - I think my maths is right?) and since it's fortnightly that soon adds up. I mentioned it to the kitchen staff and they rolled their eyes and groaned - apparently they will have to pay a flat staff rate (ie the same amount as the consultants). That sounds grossly unfair! I know that it's standard for hospitals to charge for parking these days- the local one is horrendously expensive - but with such frequent visits, some of them for very long afternoons (and I have no control over timings - we just sit and wait), it's going to be quite expensive.
After the casting J was keen to get to the cafe and very much enjoyed his breakfast of sausage, beans and mushrooms. He had a good nap on the way to the nursery too.
However, nights have been a bit rough (we've been up a fair bit eg 3pm, 4pm, 5-5.30pm) and J was very tired yesterday (Monday) so the bathtime ended in tears. The main reasons he got upset were 1) he's v tired, 2) I wouldn't let him have the hairdryer in the bath (!!) and 3) I insisted on washing his hair (once every 2 weeks is not exactly frequent as it is). Felt a shame though - I look forward to our fortnightly bath so much and it ended with him wailing to get out...
Apart from that, nothing terribly different from other cast removals/castings.
He was very upset about 1am this morning for quite a while and I ended up taking him into bed with me (something I haven't done in a long time). Nice to get extra cuddles with a squishy baby. Such a different thing to hug a squishy baby from a hard cast. I don't notice it usually - I've got used to just stroking his head rather than rubbing his back when he's upset - but feeling the contrast when the cast comes off is... well, it's hard to put it into words. We've had nearly 6 months of casting now. A third of J's life. With a hard non-squishy baby...
All I can say is that I really really really miss hugging my squishy baby...
The sensible parent part of me knows that it's for the greater good. The rest of me misses it like mad.
He was very tired when we got up (about 6.45) and it made the casting quite difficult as he would NOT stay still.
He was offered the choice of purple or red cast (I showed him the packets) and he pointed to red. No idea whether he understood that he could have a purple one if he wanted it - but he's usually fairly good at making choices like that (eg with his wellies, he was adamant he wanted George pig ones even though at that stage he'd never seen the TV show) so you just have to accept that's what he's "chosen".
The plasterer said he had 3 other little boys coming that morning for similar castings! That number surprised me. We don't see anyone else like J when we're there. Plenty of older people with crutches, wheelchairs, bent over backs etc but no little boys.
The plasterer told us that our consultant had written to Oxford about getting a second opinion and he'd seen the letter but when I asked to see the letter I wasn't allowed. I just rang the consultant's secretary to ask for a copy and she said it wasn't Trust policy to let patients see correspondence but she said she would ask Mr M whether I could have a copy. I think Mr M said he'd send a copy to my GP when we last saw him - I need to check with her as well.
The plasterer was sympathising about the lack of progress and saying it's up to me if I choose to go elsewhere- but choose is a difficult word. Getting information about J's treatment or scoliosis is like pulling teeth! Actually, pulling teeth is quite easy in comparison. Painful but quick. I need a better analogy. What's painful and takes a LOOOONG time??
There are posters up at the hospital saying they'll be introducing car parking charges from November. Such a pain. It's currently costing at least £12 in petrol each time we go (60+ mile round trip - I think my maths is right?) and since it's fortnightly that soon adds up. I mentioned it to the kitchen staff and they rolled their eyes and groaned - apparently they will have to pay a flat staff rate (ie the same amount as the consultants). That sounds grossly unfair! I know that it's standard for hospitals to charge for parking these days- the local one is horrendously expensive - but with such frequent visits, some of them for very long afternoons (and I have no control over timings - we just sit and wait), it's going to be quite expensive.
After the casting J was keen to get to the cafe and very much enjoyed his breakfast of sausage, beans and mushrooms. He had a good nap on the way to the nursery too.
Thursday, 20 October 2011
Mulling things over
I haven't posted about our not so good news since the blog on the day we were in hospital. It's "there" all the time at the back of my mind, but until we know more about when the 2nd opinion appointment will be, it feels quite remote.
We'll be back at the hospital next week for the cast - J is already asking about it and wanting a shower :-)
No real news to blog about on the scoliosis front.
The latest SAUK (Scoliosis Association UK) magazine (called Backbone) arrived yesterday. Very little in this edition about infantile scoliosis - lots about the adult and adolescent forms. Quite a bit about pain management (and 2 complimentary tickets to the Back Pain show at the Olympia next February). Lots about fundraising too.
I've been wondering about doing some fundraising - there's scope where I work for harnessing the energy of others (certainly with the students). I'm certainly not going to start running marathons or skydiving - but with a bit of imagination I'm sure we could raise something for the Scoliosis Campaign Fund* and maybe Ward 11 at the Birmingham Royal Orthopaedic Hospital too (the children's ward where J goes).
*(the Scoliosis Campaign Fund raises funds for the British Scoliosis Research Foundation and the Scoliosis Association UK)
The thing about fundraising is that it raises awareness too (I've seen Scoliosis Campaign Fund T Shirts which have "Scoliosis - have you heard of it?" written on them). That'd be useful.
We'll be back at the hospital next week for the cast - J is already asking about it and wanting a shower :-)
No real news to blog about on the scoliosis front.
The latest SAUK (Scoliosis Association UK) magazine (called Backbone) arrived yesterday. Very little in this edition about infantile scoliosis - lots about the adult and adolescent forms. Quite a bit about pain management (and 2 complimentary tickets to the Back Pain show at the Olympia next February). Lots about fundraising too.
I've been wondering about doing some fundraising - there's scope where I work for harnessing the energy of others (certainly with the students). I'm certainly not going to start running marathons or skydiving - but with a bit of imagination I'm sure we could raise something for the Scoliosis Campaign Fund* and maybe Ward 11 at the Birmingham Royal Orthopaedic Hospital too (the children's ward where J goes).
*(the Scoliosis Campaign Fund raises funds for the British Scoliosis Research Foundation and the Scoliosis Association UK)
The thing about fundraising is that it raises awareness too (I've seen Scoliosis Campaign Fund T Shirts which have "Scoliosis - have you heard of it?" written on them). That'd be useful.
Wednesday, 12 October 2011
photos
I would like to have more photos on here, but have got behind, so as a first tranche, here are photos relating to Monday this week (removing cast, x-ray, casting).
We went to Hatton Country World on Sunday - we have annual membership, so go a lot, but J is never usually allowed in the sand. Since I knew he'd have the cast removed later, we took full advantage of the sand and diggers.
Can you see the lump in the middle of J's back below? The consultant said it didn't show up on the x-ray, so wasn't bothered- but there is now a lump where the cast was rubbing a couple of casts ago :-(
In the ward 11 waiting room. J spent ages putting the people and turkey in the trailer in different combinations, clearly working out what fitted best.
Oh dear - not a happy bunny.
J LOVES my hair and finds it very comforting. Not always the most comfortable for me - but given the circumstances, it was good to find something that soothed him.
The cafe was closed so no sausage :-( but the plasterer did give J a lolly (never seen one before so was happy to choose it and hold it, but didn't know what it was!)
Home again. Back to the important matter of the electric whisk. J ADORES the electric whisk - so omelette has become a regular meal (he can also crack open an egg and cut up butter to put in the frying pan). He is very happy to sit with it on the tray for the whole meal and protests vehemently if I suggest putting it elsewhere.
I chose a red cast this time. J can now say red (well, "-ed"). He's good at spotting red things too, such as red cars. I think he's quite pleased with it being red- I've made a fuss of it eg "what a smart RED cast". My attitude is that since this will be such a big part of our lives, we're not trying to hide it or anything - I want him to be proud of it and feel it's ok to wear it. Maybe we'll choose a different colour next time - there's a whole spectrum of them :-)
We went to Hatton Country World on Sunday - we have annual membership, so go a lot, but J is never usually allowed in the sand. Since I knew he'd have the cast removed later, we took full advantage of the sand and diggers.
"No I'm not wearing that silly hat - you wear it mummy" (he was quite happy for me to put it on...)
Monday - and we started off in x-ray. No photos of the actual x-ray (with J standing) but these are ones with us looking at the equipment. To a small boy who loves wires, tubes and machines, it's great :-)
Late afternoon, time for the casting - despite J being very, very tired.
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