Infantile Scoliosis - J's diary: February 2012

While exploring his garden Cole finds a crooked flower. Determined to help the flower grow straight, Cole tries everything he can think of, including milk to make it grow stronger, massage to work out its kinks, even a hair iron. Finally, with a little bit of help, he finds a gentle cure, and soon his flower is the tallest, straightest in the garden.

To buy copies:
http://shop.earthycrunchymama.com/products/cole-the-crooked-flower

From the website:

Scoliosis is the curvature and rotation of the spine. Progressive Infantile Scoliosis is a rare form of scoliosis affecting approximately 1 in 10,000 children from birth to age 3 years. Unlike the more commonly known form of adolescent scoliosis, infantile scoliosis is a very serious condition that requires immediate treatment. Children under 3 still have lots of growing to do, and without treatment their spines will continue to curve and rotate as they grow. This unfortunately can result in rapid progression of the condition potentially leading to physical deformity, discomfort, respiratory and heart problems. The good news is that in the majority of cases this rapid growth can also be the CURE.

For more information visit the Infantile Scoliosis Outreach Program

From the back cover:

In 2008, our son Cole, was born with Progressive Infantile Scoliosis. He was diagnosed at 15 months old and by 17 months old started treatment, using serial body casting with the hope of avoiding surgery. My husband wrote this book to help explain the condition and the treatment to our young son, in a fun, simple way. We are happy to share that in 2010 his treatment successfully cured his scoliosis. Today Cole is 4 years old and has a 2 degree curve. He is expected to continue to grow straight.

Don't have a kid with scoliosis? - Don't worry it is a great story for any child, and would make a fantastic donation to a library, or doctors office.

All proceeds from this book go to the Infantile Scoliosis Outreach Program. The Infantile Scoliosis Outreach Program helps train doctors in and connect parents to this life saving treatment (serial body casting).

I wrote some of this just after the trip to Oxford, but never finished the post. I just felt heartily sick of the whole scoliosis business and simply got on with day-to-day living. Probably a self-preservation mechanism.

So if the post below feels a bit odd it's because it was written at different times. I was v tired after the appointment and it felt like there were a lot of practicalities we had to change/deal with. But now, after nearly 2 weeks, I can see that whatever the adjustments we'll need to make will simply be dealt with and, just like the first casting all those months ago, we'll get into a certain routine and it'll be our new way of life. Our new normality.

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Good news: J's curves haven't changed (though the angles the consultant gave me were different... so it's illogical, but I expect that now!). Roughly equal angles at the top and bottom of the S shape (approx 29/30 upper curve and 32 lower curve). It's a funny kind of good news, as it hasn't got any better, but curves can change very quickly so it's good that his haven't.

I had been v worried in case it had progressed (and ready to move heaven and earth to try and expedite treatment). So it was a big relief that it hadn't got worse.

Right at the end of the day, the consultant mused aloud about J's RVAD (rib vertebrae angle difference) as he looked at the x-ray. He said that as the RVAD is less than 20 degrees, it means J's curves are more likely to resolve. This is based on Mehta's study of outcomes with 130 children. I didn't know what to say. Is that reason to be hopeful? I asked. He didn't really say anything.

I don't understand - if the curves haven't changed, then the RVAD was the same when we saw the same consultant on 1 December and he looked at x-rays from October. At that meeting he said the top curve was 36 degrees and if J got 5 degrees worse he'd need growth rods.

I don't know how accurate the RVAD is - I said that I'd read that using the RVAD to predict outcome was for C shaped not S shaped curves - he sort of shook his head as if I was wrong. He did say something along the lines that 130 isn't a big cohort, but it seems to be ok as a general rule with what they see.

Photos from the day:

They have a fab dolls house in the waiting room. I wonder about getting something for J's second birthday (hopefully cheap at an NCT sale! He has a small plastic version already, but the scope for imaginative play with a big dolls house is great). We'll see!

If all else fails, the tap/sink is an excellent distraction and entertainment.

J's turn to be a doctor :-) Did you know the real stethoscopes cost about £150 (at least)?! I have now bought a doctors set for J - the whole kit and caboodle was about £10 :-)

What I want to blog about:
1. The long day
2. The medical side
3. The practicalities of the treatment on 21 March,

The long day
We had an incredibly long day on Thursday and it felt very unfair on J (who dealt with it very well, mind you). I couldn't sleep, so was up at 5am anyway. J was up at 6.30 and we were out of the house by 7.30. We didn't get home until gone 5pm. There was a lot of screaming in the car on the way there (20 minutes in fits and starts and then 15 minutes non-stop. I wanted to push on because the traffic in Oxford is horrendous, but we did stop briefly at a service station). Not sure why he was so upset. He's changing a lot (coming up to 2 now...) and his behaviour is very different. He'd refused most of his breakfast so hunger might have been an element.

During the day they kept saying that we'd be seeing the next person shortly, so we couldn't disappear to get lunch (my snacks helped, but it's not the same as a meal) - nurse, then consultant, then occupational therapist, then x-ray (bit of a saga there as they wanted him to stand without moving in a certain position!), then junior doctor, then consultant again. It meant J didn't have lunch until very late and didn't nap till we got back in the car. His eyes were shut before I'd even done up the seat belt for him!!!!

The waiting area does have a lot of good toys and that helped. Though 6 hours of waiting (interspersed with meetings) is a loooong time.

The medical side

1. Will they achieve any correction? The consultant was unable to say anything definite. "It depends".

2. J will be x-rayed before he goes home and will then have x-rays every 6-8 weeks (ie we go to Oxford every 6 or so weeks, every other time is for x-ray/check-up and the next time is for re-casting. Plus we go to Oxford 2 days before the re-casting to have the old one taken off. I'll know the M40 quite well by the end of this...)

[it's an awful lot of x-raying, isn't it? every 6 weeks for a couple of years, plus all the ones in the future... And although I really didn't want his neck and gonads x-rayed yet again, they insisted in a full spine x-ray at the pre-op. They had a useless lead figleaf thing for his gonads, but that didn't help for the side view! They say they always take full spine shots with new patients. But my objection is that this is our third hospital and they do have access to previous x-rays (the radiographer said "they're not on the system"... yet the consultant had them... v frustrating). In the end, I asked for the consultant to give his view - I didn't want it just to be "because we always do this". He wasn't around, and the registrar said it needed to be full spine - so they did full spine (incl neck and gonads) yet again. What effect will all this have?????]

3. The aim of the treatment is to control and maintain the curve - not actual correction (though that may happen)

4. I asked at what point do they stop casting and start bracing. He said they will monitor the curve and his development before they switch (I didn't write down a time frame given - but I think he mentioned a couple of years).

5. They will use the "3 point fixation" while J is on the risser-frame. That is: apex of curve, the other side of the apex and the rotation. (I don't understand this)

6. I need to take our overnight things just in case.

7. I need to bring the car seat and buggy to the ward (not necessarily first thing, but I can nip out later on to fetch them) to check how he fits in them

8. He mentioned something about pressure sores (he dictated a letter which included this) but I didn't write down what the advice was. I'll check on 21 March.

The practicalities of treatment
Don't get me wrong - I am glad that J will be treated using this new method, but there are a lot of practical matters that we'll need to deal with (see below). I need to frame them as something other than "problems or issues" in my mind - they're just things we need to sort out using imagination/creativity. We'll build up a new routine and it'll be ok.

For example:

Weight: J will gain several kilos because of the plaster of paris. The occupational therapist said the "hip" cast (for dealing with hip problems) adds 1/3 of a child's body weight (J is currently 15 kg so that would be 5 kg extra and he'd be just over 3 stone). J is getting a jacket that goes from above his shoulders (his shoulders are uneven) to quite low down (so the bottom of his spine is held too) - so it will weigh less than the hip one but still add a fair bit of weight. I need to reduce how much I carry him!!
Stairs: J will have a session with the physiotherapist on the afternoon of 21 March once he's in cast to re-learn how to manage stairs. The weight plus the fact the bottom edge of it is v low down might mean it's harder for him.
Clothes size: He will go up a size in clothes (2-3 years at the mo - so possibly 3-4 in cast). Bother. I'll get one or two cheap things in the new size and see what difference it really does make.
Car seat: We may need a new car seat. Grrrr. Expensive! The occupational therapist said there's an in-car safety centre in Milton Keynes where we could seek advice. On the day of the op, I'll take our spare car seat because it can convert to the next level up. It's not as safe as the Britax (it was only £25 from Asda as opposed to over £200 for the Britax!) but it'll do to get home if he's too big for the old one.
Cot / bed: I probably need to see about moving him out of his current cot because I have to lift him above my waist as the rails are fixed. I had hoped we could put off getting a bed for a while yet - but if he's going to be so much heavier it makes sense to move him now. However, he's deliberately pushing boundaries now and so I can only imagine what he'd do given free range of his bedroom at night (fortunately there is a stair gate on the door, so he can't "escape").
Travel: We have to be at the John Radcliffe at 7.30am. Traffic is horrendous there at that time. We left home at 7.30am to get to the Nuffield by 9.30 (although that did include a short service station stop because of his screaming, but that might be true on 21 March!). I am loathe to stay overnight in Oxford because of the expense and also the fact he makes too much noise and keeps me awake if I'm in the same room! But that might mean a 5.30am departure and getting up at 4/4.30am. Oh joy :-) The car park for the John Radcliffe Children's Hospital is underneath the building, which sounds like it'll make life easier (trekking outside in all weathers would be more difficult).
Frequency: We have to go back for x-rays every 6 weeks and re-cast every 12. I'm wondering about getting one of those "in car dvd systems" for J to watch. He would be delighted at being able to watch a dvd for that long. Up until now, we've managed with a selection of toys, etchasketch, books, singing (with mummy or cd), and watching and commenting on traffic. The trouble is that things fall down out of reach and I need to concentrate on traffic and can't keep helping him. This is a longer journey and he's older - and did I mention that he gets very frustrated very easily these days :-)
Cutting off the cast: Normally their practice is that they cut off the cast with a saw on the day of treatment. They didn't want me to remove it (and were very surprised that I wanted to!). They said there are never any problems with the saw (I've heard differently on the web message boards - ie that it's scary - but that's elsewhere so it might be ok in Oxford). They are willing to let it be removed 48 hours before the next cast is applied - but that means an extra trip to Oxford. I've seen youtube videos about cast removal using tin snips by parents from the ISOP web board (Infantile Scoliosis Outreach Programme). I can't find the link right now, but will add if I can. We'll see how it goes the first time, but I'm v prepared to do it myself after that so we can have baths and squidginess before the next cast and not have to keep driving to Oxford.
Baths and nappies: Since he'll be in the cast for 12 weeks at a time, I need to get to grips with bathing in cast (I've avoided it so far because I've found you can get away with two weeks without a bath - just wiping face, hands and bottom!). Getting a toddler to co-operate with having his hair washed in a sink will be interesting. The nurse said to use non-absorbent cotton wool round the edges of the cast to help, plus it will help at night to avoid his nappy leaking onto it.
Wheeze: J uses an inhaler for his "wheeze" (very occasional wheezy breathing - not diagnosed as asthma at this stage, and may clear up with age). I asked whether it makes any difference for the GA, and was told to speak to the anaesthetist. We were meant to see him that day but he was away. I must remember to mention it on 21 March.

Advice for 21 March:

Be there 7.30am. The consultant and anaesthetist do their rounds before going into theatre at 8.30 and once they're in theatre they don't come out again. J will probably be the first case of the day.
Feed normally the day before with a late snack before bed. He's not allowed to eat on 21 March and can only drink water or v v weak squash until 6.30am (not orange juice, no matter how dilute it is, as it's a carbohydrate)
I am allowed to take him for the anaesthetic. They'll put a numbing cream on his hand (they put the cannula in a vein in the hand). He will then fall asleep in my lap. It'll be much quicker than the sedation he had for the MRI scan - so I need to prepare myself for the suddenness.
I am allowed to go to the recovery room - they will tell me when he's stirring. I didn't write it down but I think they said the op would last about 30-45 minutes.
He would then go back to the ward and stay for at least 2 hours (they need him to eat and drink and wee before he's allowed home). I need to reckon on being there the whole day. They might need to keep him in overnight, depending on how things go, but they haven't booked a bed because it's very unlikely (and I said I'd prefer to go home if at all possible!).
He can wear his own clothes until the GA and then will wear a gown.
I need to bring his favourite toy (it will be labelled). He doesn't really have one (not in the same way some children have lovies) but froggy has accompanied us before and J likes hugging him.
I asked about the after-effects of the GA and was told children recover very quickly. He'll probably have a laryngeal mask rather than be intubated. Link to wikipedia for laryngeal mask. That's good. I'd feared him having a sore throat.
He shouldn't go to nursery the next day.
They (or is it me that needs to do it?) put on "sleek tape" round the edges so it's watertight.

The occupational therapist offered to talk to the nursery about how they can deal with the changes/cast. They already find it hard to change his nappy on their standard changing table because he's so heavy. I would have thought the floor would be better.

Since the trip, I've got a couple of "children going in to hospital" preparation books. One with Maisy and her broken leg after trampolining, and the other is Topsy and Tim, where Tim breaks his leg (or is it his arm?). I've also bought a doctors set. My aim is to give J the language about what's happening, and the opportunity to deal with feelings. So far he's been very curious and co-operative (except for the x-rays and casting - but that's because he's held in funny positions and anyone would find that uncomfortable). If nothing else, we can have fun "treating" all his soft toys.