Wednesday 1 October 2014

how to contact C.A.S.T.

I've been asked how to contact the C.A.S.T group. They used to have a Yahoo group, but have now switched mainly to Facebook.

If you go to the infantile scoliosis website  there is a facebook link on their homepage to "join" them.

Best wishes to you and your family

Tuesday 20 May 2014

"we're not out of the woods yet"

Those were the doctor's words. "We're not out of the woods yet".

This is a critical period for lung development and the brace is controlling J's spine while he grows so the doctor said he must stay in brace. It is normally recommended that they stay in for 18 to 24 months. We've only had just over a year.

When I said what his colleague had said last time-that J wouldn't have to wear the brace after the next appointment- he dismissed it, saying that that person was just a fellow ie a trainee. That feels awful- like I was stupid to believe him. He didn't say that but even so. It doesn't feel right that we should be led to believe/hope something which if he (our "proper" doctor) had seen us would never have even been mentioned.

J said he hates the brace to the doctor in no uncertain terms today! At least he is verbalising and expressing what he feels. Silly brace!

I said how he complains that it feels tight and the doctor said he'll get us an appointment with the orthotics department and J can have a new one.

J and I sat in the cafe afterwards and I asked him for a hug because I was feeling sad. He said he felt sad too.

I was so hoping he could start school in September without it. It makes being independent hard for J. Getting dressed without it is bad enough but he simply can't bend to put on socks or shoes when he's wearing it and it makes other items harder too. And going to the toilet alone is not possible either.

J didn't cry or react too badly (I did have tears in my eyes as we left the hospital- I'd had so many hopes that we could close this chapter).

In the car I said a few sentences so J could hear using what I've learnt in tapping but without actually tapping as I was driving eg Even though I hate my brace, I accept it is helping my back. Even though my brace means I can't bend, the curves are being controlled so I don't have to wear a cast again.

We need to work on positive feelings towards it so J can accept it for another 6 to 12 months.

And actually it's ok. A new brace won't stink for a while. It'll fit better so J will be more comfortable.  He can choose a different design (the vehicles have elicited a great response from others though so we need something equally cool to start school). And the independence thing will come.

I am learning how to manage my feelings as other parents boast about their children's independence- and we will get there eventually.

And at least J is enjoying dance and sporty things now he's a bit more flexible. We'll keep working at that.

Thank you for all the good wishes. Next time we'll go without building up our hopes too much. At least - and really this is almost the most important thing- the curves have stayed stable while in brace. The doctor said they are always unpredictable and there's no knowing when they might get worse, so we need to protect J's lungs while he grows.
And staying the same (visible curve on the xrsy but not anywhere near as bad as when we started) is a victory of sorts.

I am tired and waffly. Time for bed.  Especially as M's molars are emerging (several at once poor sausage) and he screamed for 3 hours last night despite milk and calpol!

Monday 19 May 2014

hello again!

Such a lot has happened since the last post- new camera (hard to download photos!), new job, new baby (J has a baby brother!), moving house...

But I was determined to write before tomorrow's appointment.

We are hoping tomorrow will be the end of treatment. Just x-rays and monitoring from now on... we hope!!

J has become very aware of his brace over the last 6 or so months and is good at expressing his feelings ( he HATES it! He hates not being able to bend. He says he hated not having proper baths when he was in cast- yet up until recently he seemed v accepting of it all).

I hate the smell of the brace- the leather straps reek of urine and no matter how much febreze I use I can't disguise it. J's nappy often leaks at night and his vest and brace are soaked. We tried pullups and 2 nappies, but to no avail.

What gives me hope about tomorrow is that there seemed to be improvement in the curves at the last appt. We didn't even get seen by the consultant,  though I managed a quick chat with him in the corridor- he was delighted with progress. And we were told the next appt might be when we finish bracing.

I ought to write several blogs to cover everything I want to say.I hope to blog more soon and really must post photos :-)

One thing I wanted to mention was that J started physio October 2013.She said he was v v v stiff and did lots of work on that. She explained his hamstrings were so tight, it would hurt to stand on one leg and kick a ball. So that would explain his behaviour at football (used to use the skittles and hit the ball not kick).He is so flexible now that he did a forward roll at dance last week!!!!!

Why did no-one suggest physio from the word go? It was his preschool who suggested it after 2.5 years if treatment... My recommendation to any parent of a child with infantile scoliosis in cast is to get physio! I have seen queries raised by parents about wondering whether physio would help the curves. My view is different- it actually should be seen as a way to improve / maintain flexibility in the rest of the body.

Big day tomorrow,  so must get to bed.

I promise I'll let you know the outcome tomorrow!

Keep all your fingers crossed!!

Wednesday 16 January 2013

Going to brace

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...

Thursday 1 November 2012

Wonderful wonderful wonderful news

The consultant has said that J's spine is so much straighter that the current cast (his third, applied on 26 September) will be his last. Let me repeat that in case you missed it. HIS LAST CAST!!!!!!!

He can wear a brace in future.

The differences are:
1. a cast is applied under general anaesthetic and is made of plaster of paris
2. a cast cannot be removed day-to-day - just at the end of that cast's life (usually every 12 to 15 weeks)
3. a brace is just molded on with J still awake and is made of plastic with velcro strips to hold it on
4. a brace can be removed, so we will be able to have baths, go swimming, go in sand... all the things a 2.5year old wants to do :-)

I'm so happy!

We had been told probably 2 years in cast and then go to brace. He will have had less than a year in cast! His spine has responded really well.

It's funny how my attitude has completely changed. Someone asked me at another child's birthday party what J was wearing and in front of J I explained about his spine, his scoliosis and how brilliant the cast was. I said how pleased the doctors were and I'm sure J must pick up the complete pride and happiness I feel when I'm saying how much good it is doing.

He stood in front of the mirror the other day in just cast and nappy and said he was wearing a cast. Yes I said - a blue one this time. He pointed to the gap between his shoulder and the top of the cast and said that there was a lot of room this time. Such a sophisticated comment - it amazed me. Yes there is, I replied. He accepts it so easily and just gets on with life :-)

So sometime in the early New Year, he will go into a brace. Yippee!!

I haven't blogged in a while, so you don't know about the little incidents we've had. A couple spring immediately to mind:
About 2 hours after the last casting in September, J was watching television. He'd just eaten a weetabix and we were pretty much ready to go home. Then he vomited the entire weetabix back into his cast (I'd stupidly let him be in a more recumbent position in the bed than is wise after eating). A new cast full of vomit. He STANK!!!!! I felt incredibly guilty (shouldn't let him lie down, should have turned him quicker to his side) but that doesn't change a thing. You can't get stuff out that's down the back between his skin and the cast. Fortunately the smell subsided the next day and now you can't tell. Just as well when you think he's in the cast for weeks and weeks.

Each time we go for casting they put J in a different ward to recover afterwards. For his second cast, he was put in the children's cancer ward. It is unbelievably sobering and has left a big impression on me to be surrounded by very small babies and children who have all sorts of tumours and conditions and are facing regular doses of chemo etc. I'd like to write more, but find expressing it hard. Someone said to me that I must have felt glad that my child's condition is relatively "easy" (not her exact word - but basically "not life threatening"). No. How could I feel glad facing all the pain that was on that ward, sitting with other parents for hours and hours???? It was more the incredible vulnerability of all of us, the fact that "it could be any of us". Our health feels so random. That's only a little bit of what I could write. But I will leave it there and actually post (I've got umpteen unfinished posts from the last few months!).  

Tuesday 12 June 2012

Cast number 2!

Can you believe it - it's 3 months already and J will get his second cast in Oxford tomorrow!

We've spent the last 5 days trying to pack in as many things that take advantage of being cast free as possible (swimming, soft play (where J could climb easily for a change), baths...). There have also been a plethora of vehicle-related activities. Since Friday J has sat on: a fire engine, a fork lift truck, a landrover, a go-cart, various trains and shuttle trains. Most of those it was in the driver's seat! We've seen all manner of diggers, dump trucks and cranes (they are replacing all street lights locally and so there are lots and lots of vehicles literally outside our door!).

I have lots to write. It's been such a long time since I've blogged - caused at first by a desire to forget the whole cast thing and just get on with "living". Then I did have blog entries to write, and several were started, but none were finished...

I need to get to bed now. It's such an early start tomorrow (and a long day).

J is now so aware of what's going on. He ran out of the plaster room on Friday shouting "GO AWAY" at the plaster technician who was about to remove his cast. Yet he had been excited about the saw and found the removal tickled at times (though it did seem to cause him discomfort at other times when it was nearer his lower back/tummy).

I don't know how much the fact he's 2 (and says "no" to just about everything at times) will influence proceedings tomorrow.

You have no idea how special the hugs were this weekend. Soft, squishy hugs. Totally totally different from holding a huge cast.

One blog entry I want to write is about the huge palette of emotions about the casting. Knowing (of course) that it's meant to be for the best and (we hope) will reduce the likelihood of problems from the scoliosis later. Yet being sad when I know we can't do the activities we would do (eg swim) if he didn't have it. I find it infuriating when people try to tell me that I "shouldn't" feel X or Y. I can feel what I damn well like. Indeed it's healthier to express the emotion than bottle it up or negate it. I think it has shocked a couple of people how deeply I feel the pain of knowing (and J not being fully aware yet) what impact this is having on our lives. They seem to feel the need to remind me of the good the cast is doing. That's not what I need. I chose to pursue this different kind of casting (and it took a lot of pushing!). What I really want is "yes, I understand [your pain]" and for someone to accept that I can feel lots of things at once. The negativity is only part of what I feel. Of course it is. For so much of the time I delight in J 100% and how he's enjoying his life and all he CAN do. I don't know how much this makes sense to you? It's hard to explain and it's very late at night. I'll write it again some other time.

Fingers crossed that when I write tomorrow, we will be home safe and sound and J will be back in cast without too much trauma.

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.

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.


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.

Thursday 29 March 2012

Deep breath - hairwashing (help!)


Deep breath.

Sometime very soon I need to tackle hairwashing.

I have deliberately avoided this until now, but the weather has been very hot (well, for March it has) and J is sweating in his heavy-weight cast.

I've investigated the trays that the occupational therapist mentioned:

I can't see how J is going to cope with any of those. It's like wrestling an alligator (a very strong one at that!) to clean teeth and he loathes lying on his back now (he finds it hard to get up with the new cast, though he's getting better).

He was never keen even in the bath because of the risk of water getting in his eyes. And yes, we do have a special jug that means that when he holds still it's unlikely to go in his eyes. Sometimes it was just easier to get it over and done with quickly with lots of water (including in his face) and then dry off the hair and tears at the same time.

If he co-operates then any of the above might work. But if not ("NOOOOOOOOOO"!!!!) then I may as well hold him upside down and dunk him in the bath. Yes I am kidding, before you start getting worried!

I guess the key is distraction, distraction, distraction...

Wish me luck! (I'll report back!)