Thursday 26 April 2012
Diagnostic booklet - early detection of Infantile Scoliosis
This is a link to an exellent booklet produced by the Infantile Scoliosis Outreach Programme in the US with tips for paediatricians and parents for early detection of Infantile Scoliosis
Thursday 12 April 2012
Good news :-)
Today I received a letter from the consultant at Oxford in response to my questions about how the casting went (we didn't get to see him after the casting). It's good news about the angles.
In October the top angle was 36 degrees, the lower curve was 26 degrees and the RVAD (rib vertebrae angle difference) was 13%.
In February the top angle was 29/30 degrees and the lower curve was 32 degrees.
______________________________________________________
Good correction
It is good news that there is progress with the cast. Some children I've read about don't get much progress - for some children it takes several casts to see a significant change.
NB There was a change between October and February that I don't understand (at the February appointment the consultant said the x-rays looked the same, but in this letter he confirms that there was a change between October and February. My guess is that it was because he didn't have both in front of him in February - he was doing it from memory, but for the letter he compared them all).
He wrote that the fact that a good amount of correction was achieved would suggest that the spine is flexible - though he is not able to make any predictions with any degree of certainty regarding how the casting will go.
He felt that J's spine was responsive to manipulation and that the procedure went well from his perspective.
All good.
It would seem that J's s-shape is getting more even (top and bottom are now more or less equal). To begin with the upper curve was much bigger.
I have to say that when I was on the ISOP message board earlier, I read about some children with angles of 80 or so degrees (over 100 in one case). I realise that J is very, very lucky. That can lead to terrible consequences for the internal organs especially the lungs. No one has ever said that J's scoliosis is progressive (the consultants say they don't know) and I really hope that with this new casting his angles are now under control and if possible we'll see even more correction in future. Under 10 degrees is considered "normal" and not termed scoliosis.
______________________________________________________
X-rays
I also asked about the x-rays. I am worried about how much radiation J will be exposed to over the course of the treatment (remember the casting is for a couple of years and then braces for years and check-ups until he's fully grown). I had been led to believe that he'd have x-rays every 6 weeks, but in today's letter the consultant says they're only done before each change of cast (ie every 3 months). I could swear they said they'd do more at each check-up (ie every 6 weeks). I've just looked back at the blog from Feb and that's what I was told (I copied up my notes onto the blog). Strange. I don't remember who said every 6 weeks.
From the letter it would seem that they're only done before the cast change. I wonder what difference it makes whether he's in cast or out of cast. I hope to get the cast taken off 2 days before the new one is put on. Fortunately we have an appointment mid-May to check how J is and I can ask about all this then.
I asked in my letter about protecting J from the radiation eg not the neck or gonad area. He says: "For optimum interpretation the whole spine needs to be imaged. I am not able to comment on inadequate x-rays of the spine. In terms of gonad and neck/thyroid protection the radiology department would be in the best position to advise on this as this is outside my area of expertise. At the present time and under the circumstances there is no other way of assessing the status of J's spine."
That's actually quite frustrating as it was the radiology department who said I needed to speak to the consultant. They said that if we use any lead protection for the neck, for example, the consultant won't get a full view of the spine.
What effect will so much radiation have on J???????? Am I reducing back problems but increasing the risk of cancer, infertility etc etc etc????? How as a parent without medical training can I get the best solution? The radiologists, when I was insistent, came up with a means of protecting gonads with a special lead fig-leaf. Are there other things I could get them to do? It was hard to get the leaf to stay put under his trousers - so maybe I need to find a pair of underpants for him for x-rays. It was a battle to get him to stay put, never mind in the position they wanted - plus I was trying to keep the fig-leaf from slipping!
-----------------------------------------------------------------------
Shape of cast
I asked in my letter about the shape of the cast, especially at the top. It seems very high under his chin and J can't put his head down terribly well (though actually over the 3 weeks since casting it has become far less obvious because he just bends at the waist to look down). The consultant said that: "The plaster has been applied in such a manner as I have perceived to afford the greatest chances of controlling the curve."
Fair enough. You can't argue with that. I wondered about a small cut out under the chin (to my untrained eye, it didn't seem that a couple of centimetres just there would affect the spine) to give more scope for J to look down.
It's very obvious when J sits on the sofa because he can't use his bending at the waist technique- he just looks uncomfortable. I'll supply a photo if I remember.
___________________________________________________
Discharge arrangements
I wondered whether we might be able to leave the ward earlier (we'd been up since 4am, J was back on the ward having lunch about 12.30 but we left the ward after 6pm and got home after 9pm). He said to raise this with the ward manager at our next visit. I realised in writing it that it wasn't necessarily his remit, but I wasn't clear on the day exactly what it was we were waiting for. J had eaten, had a wee and had an x-ray and all those things I thought he needed to do to show recovery from general anaesthetics before leaving - perhaps next time I'll speak to the ward manager when we arrive and ask for help in getting away as early as possible so at least they might try and get us out earlier.
______________________________________________________
I hope to do another photos blog v soon - J is simply adorable at the moment. I will upload the video of him dancing though - sooooooooo cute :-)
On 21 March:
The upper curve now measures 19.3 degrees in cast standing up.
The lower curve now measures 19.7 degrees in cast standing up.
In October the top angle was 36 degrees, the lower curve was 26 degrees and the RVAD (rib vertebrae angle difference) was 13%.
In February the top angle was 29/30 degrees and the lower curve was 32 degrees.
______________________________________________________
Good correction
It is good news that there is progress with the cast. Some children I've read about don't get much progress - for some children it takes several casts to see a significant change.
NB There was a change between October and February that I don't understand (at the February appointment the consultant said the x-rays looked the same, but in this letter he confirms that there was a change between October and February. My guess is that it was because he didn't have both in front of him in February - he was doing it from memory, but for the letter he compared them all).
He wrote that the fact that a good amount of correction was achieved would suggest that the spine is flexible - though he is not able to make any predictions with any degree of certainty regarding how the casting will go.
He felt that J's spine was responsive to manipulation and that the procedure went well from his perspective.
All good.
It would seem that J's s-shape is getting more even (top and bottom are now more or less equal). To begin with the upper curve was much bigger.
I have to say that when I was on the ISOP message board earlier, I read about some children with angles of 80 or so degrees (over 100 in one case). I realise that J is very, very lucky. That can lead to terrible consequences for the internal organs especially the lungs. No one has ever said that J's scoliosis is progressive (the consultants say they don't know) and I really hope that with this new casting his angles are now under control and if possible we'll see even more correction in future. Under 10 degrees is considered "normal" and not termed scoliosis.
______________________________________________________
X-rays
I also asked about the x-rays. I am worried about how much radiation J will be exposed to over the course of the treatment (remember the casting is for a couple of years and then braces for years and check-ups until he's fully grown). I had been led to believe that he'd have x-rays every 6 weeks, but in today's letter the consultant says they're only done before each change of cast (ie every 3 months). I could swear they said they'd do more at each check-up (ie every 6 weeks). I've just looked back at the blog from Feb and that's what I was told (I copied up my notes onto the blog). Strange. I don't remember who said every 6 weeks.
From the letter it would seem that they're only done before the cast change. I wonder what difference it makes whether he's in cast or out of cast. I hope to get the cast taken off 2 days before the new one is put on. Fortunately we have an appointment mid-May to check how J is and I can ask about all this then.
I asked in my letter about protecting J from the radiation eg not the neck or gonad area. He says: "For optimum interpretation the whole spine needs to be imaged. I am not able to comment on inadequate x-rays of the spine. In terms of gonad and neck/thyroid protection the radiology department would be in the best position to advise on this as this is outside my area of expertise. At the present time and under the circumstances there is no other way of assessing the status of J's spine."
That's actually quite frustrating as it was the radiology department who said I needed to speak to the consultant. They said that if we use any lead protection for the neck, for example, the consultant won't get a full view of the spine.
What effect will so much radiation have on J???????? Am I reducing back problems but increasing the risk of cancer, infertility etc etc etc????? How as a parent without medical training can I get the best solution? The radiologists, when I was insistent, came up with a means of protecting gonads with a special lead fig-leaf. Are there other things I could get them to do? It was hard to get the leaf to stay put under his trousers - so maybe I need to find a pair of underpants for him for x-rays. It was a battle to get him to stay put, never mind in the position they wanted - plus I was trying to keep the fig-leaf from slipping!
-----------------------------------------------------------------------
Shape of cast
I asked in my letter about the shape of the cast, especially at the top. It seems very high under his chin and J can't put his head down terribly well (though actually over the 3 weeks since casting it has become far less obvious because he just bends at the waist to look down). The consultant said that: "The plaster has been applied in such a manner as I have perceived to afford the greatest chances of controlling the curve."
Fair enough. You can't argue with that. I wondered about a small cut out under the chin (to my untrained eye, it didn't seem that a couple of centimetres just there would affect the spine) to give more scope for J to look down.
It's very obvious when J sits on the sofa because he can't use his bending at the waist technique- he just looks uncomfortable. I'll supply a photo if I remember.
___________________________________________________
Discharge arrangements
I wondered whether we might be able to leave the ward earlier (we'd been up since 4am, J was back on the ward having lunch about 12.30 but we left the ward after 6pm and got home after 9pm). He said to raise this with the ward manager at our next visit. I realised in writing it that it wasn't necessarily his remit, but I wasn't clear on the day exactly what it was we were waiting for. J had eaten, had a wee and had an x-ray and all those things I thought he needed to do to show recovery from general anaesthetics before leaving - perhaps next time I'll speak to the ward manager when we arrive and ask for help in getting away as early as possible so at least they might try and get us out earlier.
______________________________________________________
I hope to do another photos blog v soon - J is simply adorable at the moment. I will upload the video of him dancing though - sooooooooo cute :-)
Monday 2 April 2012
Don't sweat the small stuff
Sleeping: J has been happy to sleep on a mattress with pillows round it on the floor. So that has been no problem whatsoever. No need to buy a new bed or anything (I want to postpone that because a big bed would take up lots of room). I do find him in odd positions round his bedroom fast asleep by the cupboard or whatever, but so long as he doesn't wake up I don't care!
Washing: J is very willing to sit with his feet in a tub of water - so at least part of him gets a good wash regularly. He doesn't like me wiping his arms/legs/neck etc, but gets over it fairly quickly.
Hairwashing: We tackled hairwashing last night. I decided that as his hair is so fine, I'd just wipe it with a wet flannel and see how we went. J was NOT happy. I'm glad I didn't use shampoo as I'd not have been able to rinse it out. Anyway, it looks fine today even though it only had a wipe - so I don't need to worry about this. Once I'd finished wiping, he was right as rain - I just need the courage (and physical strength) to hold and wipe.
Washing: J is very willing to sit with his feet in a tub of water - so at least part of him gets a good wash regularly. He doesn't like me wiping his arms/legs/neck etc, but gets over it fairly quickly.
Hairwashing: We tackled hairwashing last night. I decided that as his hair is so fine, I'd just wipe it with a wet flannel and see how we went. J was NOT happy. I'm glad I didn't use shampoo as I'd not have been able to rinse it out. Anyway, it looks fine today even though it only had a wipe - so I don't need to worry about this. Once I'd finished wiping, he was right as rain - I just need the courage (and physical strength) to hold and wipe.
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