Despite my last post where I saw going to brace as a wonderful thing, that's not how I feel now.
We met with the consultant last week and the x-rays then showed his back is now 16 degrees at the top of the S and 12 degrees at the bottom of the S. I'd hoped they'd be better than that. Under 10 is "normal". You might say "well, it's no where near 40" (when they say about surgery) and that's true. His top curve has gone from 37 or so down to 16. But I'd hoped for more correction.
It wasn't until after our consultation that I started to doubt the sense of going to brace. He's only 2 years 8 months and is growing A LOT. His shoe size has gone up 2 sizes within the last few weeks!!! I posted on the C.A.S.T. website (a support network of parents who have scoli* children with Mehta casts) and there was an almost unanimous response supporting carrying on casting. This is our window of opportunity. Growth is a corrective force - he'll slow down over the next year or 2 and then casting won't be as effective.
*that's how some of the parents refer to their kids - scoli kids. Less medicalised than mentioning the condition itself - scoliosis.
So I contacted the consultant again and have just come off the phone.
In his view, the curves improved through casting and responded really well, but have been more or less static since the first cast. The big thing he kept repeating was about the risk with each general anaesthetic (GA) when J is pumped full of drugs (as he put it). There is evidence, he said, that repeated GAs are neurotoxic for small children. It has not been substantiated yet, but GA may not necessarily be a good thing.
He said 16 degrees is very mild in scoliosis terms. I said that I just feel that there's an opportunity to make it less than that through the casting. He said that he's not sure there is a benefit in casting now - the braces are not off-the-shelf and can help the curves - we are harnessing the growth even in brace. A mold is taken to make the brace and so it can provide proper truncal support, or even help correct it. I was under the impression it wouldn't correct it, but he said it can. And actually another parent on the C.A.S.T. support network did find her son's back improved while in a brace - but some do resolve spontaneously, so you never know if that's the brace or would it do it anyway.
I said about growth as a corrective force (the title of Mehta's original paper dating from the 70's) and using this opportunity. He said yes yes he recognises that term from Mehta's work and actually he is in contact with Mehta about every 2 weeks. I didn't realise that - that's very encouraging that he IS using Mehta's ideas/advice.
Of course, it may deteriorate even in cast or brace. But the top curve has halved since starting casting and that is good.
We have to weigh the risk and benefits. We may get the same result in brace. He seemed much more flexible about options today - last Thursday it sounded as though J would stay in the same brace for a year with check-ups every 4 to 6 months. But today he was saying that it can be replaced if necessary and adjusted according to requirements. He will be monitoring it every 4 months and will keep a close eye on it.
Last week he said that if it got worse it would be straight to magnetic growth rods, he was more willing today to consider reverting to casting (though the closer kids get to 5 years old, the less likely it is to work he said). The problem with casting in older kids is that they have more body fat and you get less "grip" so casting is less effective (my word, I can't remember his term). Also, there's less growth to harness.
I'm glad I did go back to him about this. It's been preying on my mind. I'm not sure even now that I'm 100% happy with not carrying on. I would have been happy if he'd said yes, let's try one more and see what we can get from that. Some (most) of the kids have quite a few more casts than just 3 (J has only had 3). J is used to them and having another one would just be accepted. Going to brace and then reverting to cast would be harder - the loss of freedom would be more keenly felt and he'd be older and more aware of it (I think).
Of course I don't want to subject J to unnecessary risks. I HATE HATE HATE all the x-rays. It's only when I insist that they provide the lead fig leaf for his nether regions. Otherwise they'd be happy to just x-ray him from head to legs every 3 or 4 months willy-nilly (if you pardon the pun).
So there you have it. We are going for a brace fitting tomorrow. J has already seen the choice of outer shells and got it into his mind that he wants the design with cute little bunnies. I hope he likes it in a few months! It's hard to explain to a 2.5 year old that he might change his mind over time.
At least he can have a bath tomorrow night. He has been in this cast since 26 September. That's 16 weeks without a proper bath (just dipping feet in a tub). FOUR MONTHS. The first day he vomited down the inside. The next day he pooed up the back inside it. It has daily soakings in urine. It STINKS to high heaven. He has been waking up complaining about his back and tummy during the night and wanting lots of wet wipes pushed through the holes (I can more or less floss him with wet wipes - but he's so ticklish that my neighbours must wonder what the heck we are doing at 3am!!). He has scratched his skin raw at times. Goodness only knows what's down there. In the summer it was sand and he had open wounds where it had rubbed. It's probably glitter (all the xmas stuff) and food now.
I did try and get the cast removed last week, both in Oxford (it was too late after we'd waited round for hours during the afternoon for the various x-rays, nurse appointments and the doctor so by the time we got to Orthotics they just said no) and in Coventry. I was beside myself at the end of a morning in the plaster room in Coventry. Let's just say that despite having gone there on 2 occasions before with just a photocopy of the original letter from our consultant, they weren't happy to treat him without more specific and recent advice. Even when I got an Oxford consultant on the phone (not our one as he was in surgery) they didn't accept it. They wanted paperwork. The welfare of a child who has been waking up several times a night complaining about his skin/back is not the priority. The door, so to speak, was forcefully slammed in my face. They said about contacting my consultant. Well it has in the past taken 8 weeks to get a written reply from him. How about his secretary? She was out on Friday. Plus I'd already spent £5 on my mobile phone trying to get someone who could help. So J has had to spend an extra week in a horrible, smelly cast and I have an an extra week with broken nights.
The plan tomorrow is to cut it off in such a way that it can have velcro attached to the sides and put back on as a removeable cast. The brace may not be ready for 2 or 3 weeks and the consultant would like him to have some support. If the inside is truly disgusting (it feels slimy to me because of repeated applications of E45 or other creams) then we will add padding. Someone said to me about using Febreze to help with the smell - might be worth a try if it's not actually on the skin.
I wonder how his back will respond now? Will there be correction or deterioration in brace? Will it remain static??? Time will tell...
