Tomorrow my 13 month old son will be going into Birmingham Royal Orthopaedic Hospital to have a cast fitted.
I am starting a blog for several reasons:
1) As a record for J when he’s older (he won’t remember much of all of this, but it’s a huge part of our lives)
2) For me to vent when there are frustrations and (hopefully) celebrate when there is good news
3) For other parents going through the same or similar treatment to see what our experiences are. I will also include any information or links to other sites which I have found helpful.
4) For my family and friends, so that they can be updated easily on all of this (one major resource I lack is time and I hope that having access to this will mean people can find out where things are up to, even when I haven’t got time to let people know personally)
Our story so far:
February 2011
Until February I didn’t even know what scoliosis was!
J was just 8 months old when I noticed that there was an odd shadow at the base of his spine when he was having a bath. I mentioned this when we were at the hospital on 17 February about J’s weight (that had been an issue before Christmas, but has been fine ever since) and his persistent cough (his chest has “rattled” ever since October- we now think it might be an allergy to dust). The paediatrician sent us for an x-ray of his chest (the lungs were clear by the way, so at least the cough isn’t affecting the lungs). The x-ray was an adventure in itself! J loves machines and so to go into a room with lots of technical equipment was very interesting for him J. Keeping him still however was not easy, but I did manage to hold him down (wearing a lead apron).
When we got back to the Children’s Outpatient Department there were 3 doctors all lined up to give their verdict. That was a bit daunting – you immediately start thinking:”right, this must be serious”. The paediatrician had asked a consultant orthopaedic surgeon and his side-kick (I still don’t know what he was there for – just observing I guess) to take a look at the x-ray. They asked me to strip J off and then made him do all sorts of standing, sitting, bending and so on. J was so good – he was smiley and helpful throughout! That, I’m hoping, is how he’ll be during future treatments!
They asked questions about the pregnancy (normal) and birth (normal, if somewhat faster than anticipated!). They were interested in the fact that J had a “twisted” neck for several weeks after birth, with a tendency to keep his head facing to the right and therefore has a slightly flat head behind his right ear. I arranged a couple of sessions with a cranial osteopath* to manipulate his neck and it cleared up within about 8-10 weeks. They were interested in birthmarks too, but J’s little one on his right thigh was deemed irrelevant to what they were diagnosing. Plus they asked about his development (he is doing well both physically and mentally) and whether there was any family history of back problems (none relevant).
*I am now trying to get in contact with the osteopath, as I can’t remember quite what she said the problems actually were. There was tension in the neck and I think the back – but I’d like to know if her notes give more details (as will be discussed below, “Torticollis” (http://en.wikipedia.org/wiki/Torticollis ) as that a baby might have scoliosis. There is also a link with “plagiocephaly” (flat head/distorted skull)) (http://en.wikipedia.org/wiki/Plagiocephaly).
And the verdict?
“Your son has infantile scoliosis”.
A bent spine.
I was shown the x-rays and J’s back clearly had a curve.
I was told that it was mild and that most such cases resolve themselves, so not to worry and it was probably due to lack of room in the womb. I was told he’d be monitored on his 1st and 2nd birthday, but that it would probably resolve itself meantime. The paediatrician warned me about googling (always a danger with medical issues!) as there are other types of scoliosis, such as adolescent scoliosis, which have totally different problems and treatment.
So I foolishly left it at that, decided not to google and worry myself, and simply put the date in my diary for his May appointment. I should have started doing proper research immediately – but you know how life/return to work/not sleeping etc affects you… There seemed to be other priorities. And kicking myself now will achieve nothing!
5 May – appointment with Consultant Orthopaedic Surgeon
At the start of May I decided to prepare some questions to ask the consultant and contacted the Scoliosis Association (SAUK) http://www.sauk.org.uk/, a UK charity that aims to provide advice, support and information to people with scoliosis and to raise awareness among health professionals and the general public. They immediately said J needed to be referred to a specialist and to push for that if it wasn’t offered.
Apparently there are 12 specialist units, the nearest one is the Birmingham Royal Orthopaedic Hospital – other ones close by are Nottingham and Oxford. SAUK provided details of the 3 specialist consultants’ names to ask for. [I’ve just looked on the SAUK website and they say there are 30 units in the UK. The specialist I saw said 12, which I guess doesn’t include Ireland]
On 5 May we returned to the hospital to see the Consultant Orthopaedic Surgeon and J had a full x-ray of his spine (as opposed to the initial chest x-ray).
By the way, the repeated x-rays are one source of concern to me as having lots of x-rays is linked to cancer in the long term, especially in one so young as an infant’s cells are multiplying very rapidly at this age.
The full x-ray showed that his spine is in fact an S-shape with a larger curve at the top [32*] and a smaller curve at the bottom [24*].
NB The angles he gave us were changed by the specialist when he saw the same x-ray and were increased to 36-38* in the thoracic area and 24-36* in the thoracolumbar area. He thought one of the vertebrae looked damaged, but said the specialist would be able to tell better.
Without me requesting a referral, the Consultant said he would refer him to Birmingham. That also signalled to me that it was more serious than I’d been led to believe initially.
(By the way I gave him the names of the 3 specialists I’d found out about and he laughed and said that was all of them and he would write to the unit. When the referral letter came through though, it was addressed to someone different and when I queried this with Birmingham, it turned out that person left the hospital several years ago… I don’t know how much that would delay matters, but it isn’t right that what I said was ignored and then what they put instead was very out of date!)
This blog seems to have a lot of “by the ways”. Since I am currently functioning on 3-5 hours broken sleep, it’s surprising that I can write at all, never mind coherently, so apologies for the style. You might notice an improvement (or possibly a deterioration) in future blogs depending on how much sleep I get J
Private Appointment with spinal specialist
((I want to add a section about: asking about the waiting list, finding out how long it was, being v upset, doing lots of research, finally deciding to go private, not knowing how to find the best person, how I did decide, making the appt, what happened there, my questions and his responses, how J was (v upset and fidgety as it was not good timing coz v hungry and tired!), and the decision to put on a cast within 10 days!)) - will post more on this
Notes from consultation with Mr Marks about J’ scoliosis Friday 3 June 2011
J has infantile idiopathic scoliosis (infantile because under 3 years of age; idiopathic because the cause is unknown).
His spine is an “S” shape – the top angle is 36-38 degrees, the bottom one in the thorocolumbar region is 26 degrees. The Rib/vertebrae angle is 10-12 degrees.
There is no family history of scoliosis on either side.
He had a twisted neck (torticollis) when born (and received osteopathic care for this) and still has a misshapen skull/head (plagiacephaly). This can be caused by “moulding” issues (ie from before he was born eg if not enough room in the womb).
There are 2 groups of infantile scoliosis:
The “good” type (resolving): 80-85% of cases of infantile scoliosis go away on their own (resolve) or the infant is in plaster for a period up to 4 years and this corrects the curves.
The family history, torticollis and plagiacephaly would suggest that J’s scoliosis fits into the above category.
The bad type (progressive): If he is in the 10-15 % group then his spine will deteriorate and this will compromise his lung and heart development.
The consultant will therefore assume he is in the 10-15% group because at this stage we don’t know. Both groups need similar treatment to start off with, but if he’s in the 10-15% group then there will be difficulty in maintaining even the current curvature (it will get worse) and therefore he would need surgery in the long run.
In a boy having a left-sided curve (as J’s main curve is) there is more chance that it will deteriorate. (??? Not sure I’ve noted this correctly – which way is J’s main curve???)
If it’s bad, the surgery would be at 4 – 5 years of age. They use techniques to keep him growing (eg growth rods) and it is not one-off surgery. However, the latest techniques use magnets and these can be adjusted from outside the body without the need for so much opening up to adjust them.
J will need an MRI scan. This will cover the base of his brain too. If he is in the progressive group then these things need treatment. An MRI scan gives prior notification of what might be a problem when he is 12-13 years of age. There is a correlation with growth – as he grows these things (ie whatever might be revealed by the scan) would show and cause problems.
The MRI scan will be of the length of the spine including the brain. He will need to be under general anaesthetic. This will take place at Birmingham Children’s Hospital.
If it’s good news and the scan is normal then the curve is resolving and there would be a brace to start off with, then observation. This is the best case scenario. He may need a brace until he’s 4 years of age – depending on how he reacts. We don’t know how long it’ll take but it could be up to 4 years of age. He would then be monitored every 2 years until he’s finished growing.
If it’s bad news, it will show an abnormality in the nerves or spinal cord. There are lots of things to look for – and the results will determines what happens. For example it could be congenital eg a cyst (“syrinx” – from the Greek for snake); or a chiari malformation at the base of the brain; or a split spinal cord. These are all things that can drive scoliosis.
The positives for J are:
- He’s a boy (scoliosis is commoner in girls except the resolving type)
- His curve is left-sided
- He had plagiacephaly and torticollis
- There’s no known family history.
The x-rays show he is otherwise normal apart from the scoliosis i.e. all the vertebrae are there, there is no fusion, and the ribs are normal and there is the correct number of them.
J will have the scan at Birmingham Children’s Hospital on the NHS in 8-12 weeks time (ie August/September). Before then he will be given a soft cast plaster jacket (similar to the “Mehta” type). This will correct him into a good position. It won’t be removable and he will have to wear it all the time. He will not be allowed to get it wet (ie no baths or swimming) but he can have a sponge-bath.
This soft-cast plaster jacket will have to be changed every couple of weeks until he’s in the best position when he’ll be put into a removable brace. It’ll probably take a couple of soft ones (ie one month).
Mr Mark’s private clinic secretary will contact his NHS secretary and make arrangements for the soft cast plaster jacket. It’ll probably be fitted on Tuesday 14 June (the plasterer is called Patrick and only comes down from Liverpool on Tuesdays or Thursdays). The casting will take place at the Royal Orthopaedic Hospital in Birmingham.
J would be the first cast of the day (ie 7.30am) and we would have to stay there all day so that they can check it when it’s dried. It is as thick as a banana skin and is as soft/flexible as soft Tupperware. It has foam on the bottom to stop it rubbing. It has a T-shirt like material on the inside against the skin.
Meanwhile an MRI scan will be arranged. It is ok to go to that wearing a cast (it goes straight through the jacket).
Unfortunately the plaster jacket will mean he will be very sweaty in the summer. When we get to the removable ones, he will be damp after a couple of hours and may need the t-shirt he’ll wear underneath to be changed then.
If he gets wee on the plaster one, he’ll need to go back to hospital (it’ll need changing).
There is support for the parents – there are 2 specialist nurses at Birmingham Royal Orthopaedic Hospital (Chrissy and Katie). There are also useful groups:
- SAUK (Scoliosis Association of the UK – a charity)
- Scoliosis Research Society (SRS.org) – though that’s more geared towards adolescents (it’s American and they have less infantile scoliosis than Europe does)
- Also, the info produced by the Shriners hospitals (under Dr Jim Saunders) may be useful (US)
In terms of things that may help that I can do:
Diet? – no
Physiotherapy? – not really (nothing specific, but when he has time out of the cast then it’s good to use it for things like swimming)
Is there anything he shouldn’t be doing eg trampolining (he was given a small trampoline for his first birthday)? Mr Marks sees at least a couple of spinal injury cases each year caused by trampolines and does not think anyone should use them.
No more x-rays are needed at the moment.
There are 12 specialist units for scoliosis in the UK. The nearest to Coventry is Birmingham (the other local ones are Nottingham and Oxford).
How common is the condition? Infantile is rarer than for adolescents – about 1 in 10,000 for infantile scoliosis (though it may be more common, but where people don’t do anything and it resolves on its own, it won’t count in the numbers).
Miss Mehta (consultant) said that the angle of theribs corresponding to the spine indicates whether it’s progressive. What is his angle? That theory has fallen somewhat out of medical belief – it’s not as robust a theory as she thought it was. She said it if was more than 20 degrees, it showed progressive. In fact, it’s a trend but it’s not gospel. J’s angle is 10 degrees.
Mr Marks’ experience? Been consultant in this field since 1993. He only treats spines and his cases since 93 have been about 85% children. His special interest is scoliosis in small children. There’s more info on the Midland Scoliosis Clinic website.
How do I feel today – the day before treatment starts?
I am grateful that we are starting now, without a great long wait.
I am concerned about how J will react to:
· The early start
· The new place
· The putting on of the cast
· The restriction
Will it affect his sleep?
I need to learn lots about how to change nappies, give washes etc without getting the cast wet. And how to keep J cool (I was told they can sweat a lot in them).
The logistics of getting to Birmingham for 7.30am, keeping J distracted (what to take with us?), happy, fed, watered, changed, still during treatment etc all remain as issues to be tackled.
But I am very grateful that after all the worry that it wouldn’t be treated for a LONG time, he is starting with a cast at 13 months (even though I wish he'd started earlier...).
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