Tuesday 13 September 2011

accidental potty training

J happened to wee as I was changing his nappy on Sunday, so I slipped the potty underneath and made a bit of a fuss at how great it was that he was using the potty. I then showed him how to empty it into the toilet and flush it away. He was very interested, especially in the flushing, and very pleased with himself.

I read in something about potty training that there's no need to go over the top with praise. I think I was a wee bit enthusiastic (pardon the pun) with my high 5s. But he did know that it was a "good thing" by the end of the episode.

In case you're interested, I got a mega cheap potty a few weeks ago and so far it has been a hat (J loves it on my head...) and a seat for J and for teddy.


Now he knows the connection with wee.

We're not potty training per se, but I read somewhere about having a potty around and getting children interested in it before training.

PS - I know I've cleaned it thoroughly, but I'm now a bit less willing to wear it as a hat...   :-)

Cast number 6

J had cast number 6 today. As soon as we walked into the casting room and were greeted by Patrick the plasterer, J stopped smiling, turned round and ran out! He isn't daft and knows what's coming - but didn't mind too much with having it put on again. He was much more restless than last time though and it took 4 of us to keep him still. But he didn't protest, it was more just being wriggly.

Starting with the evening before- big smiles when the scissors come out:

 Peppa pig was far more interesting than mummy wanting to take photos
J keeps stroking his chest and belly when the cast comes off - must be nice to feel it when it's been covered up for 2 weeks. I have a lovely video clip of this, but it won't upload. 


His skin is fine - bit red in patches, but no problems at all.  
 We went out to water the flowers before J's bath. I love his new all in one kagoule and George pig boots (his choice of wellies - I put the whole range in front of him at the shop, and he definitely wanted these - I thought he'd go for the crocodiles, but was wrong! I love it when he makes choices and I see the real character of my son emerging :-)  ).
 J was fascinated by this tap at the Hospital - it has a sensor and he loved playing with it (and pre-casting I don't mind playing with water).

 As ever, J had his traditional sausage and beans afterwards. Nice to have a little ritual.

I must admit that even though all went well and we both know the ropes well now, I felt drained again afterwards... not helped by being woken up at least hourly overnight (J's incisors seem to be the problem at the moment). Hopefully we'll both get a good night's sleep tonight. Next cast on the 27th, then the consultant and more x-rays on 10th October. Fingers crossed for a clear improvement.

Monday 12 September 2011

effect of scoliosis in later life

I am trying to find out what effect a residual curve will have in later life.

It was suggested when J was last cast that we might expect him to have a curve in the 20*s even after casting. He will be fitted for a brace after the series of casts he's currently having, but that will be just to maintain whatever he's got rather than correct it. It was not a consultant who said this though - so it is another question for the 10th October when we do get to see a consultant and have more x-rays.

I need to know whether or not to push for a different treatment - eg EDF (the Mehta cast treatment with proper traction applied while the child is on a frame, not just a squeeze on the soft cast).

I had hoped to go to the Oxford conference last week to get answers (see earlier post from the end of July). I may post separately about them saying at the last minute (after me contacting them, not them contacting me) that it was "deemed inappropriate for members of the public" and that "this meeting involves discussion by highly trained specialists from around the world on a very complex and demanding field".

My feelings on all of that and the email exchange are long enough to be worthy of a separate post! If you don't have information, it's hard to know what questions to ask - yet it is my responsibility as a parent to be proactive in J's treatment and push for a second opinion or alternative treatment. I may not be a consultant, but Cambridge don't have a bad reputation. Enough.

Returning to the effect in later life, I started this post with the intention of saying that I have found a website about backpain today which had a relevant query and consultant's response: http://www.backcare.org.uk/779-1655/Scoliosis.html 

In short, the adult who submitted the query because of intense backpain had had scoliosis as a child (before he was 11) and had been told it was cured. The consultant replied wondering what kind of scoliosis it was (congenital or idiopathic) and went on to write:

Either way, if the curve is not too bad then she could lead a normal life with little if any restriction. However in late middle age, when wear and tear changes set in and the repair mechanisms in the body become less vigorous, then pain may develop and the curvature may increase a little perhaps unbalancing the spine.

At that stage a good therapist is often helpful with massage, deep heat, specific exercises, manipulation, shoe raise, spinal support etc as appropriate. If still bad then a spinal or pain specialist may help. The first essential is to define as clearly as possible the source of the pain, which may be muscle, ligament, facet joint, disc or nerve root and treat accordingly with injections, radio-frequency etc.

Occasionally if all else fails, life is intolerable and the pain source can be determined with some confidence, then well directed surgery with stabilisation or relief of nerve pressure can be valuable.

Chronic pain management will help you to understand the nature of the pain and to live with it with some compromises but a minimum of disability. If you can become more active then the repair processes might be stimulated sufficiently to ease the pain."


The key sentence for me is: However in late middle age, when wear and tear changes set in and the repair mechanisms in the body become less vigorous, then pain may develop and the curvature may increase a little perhaps unbalancing the spine.

However "small" the residual curve, the unbalancing may produce pain in later life. They say that below 10* is normal and not deemed to be scoliosis. Ok. But 20*+? Even if it's not progressive at this stage (and they have indicated that they think it is of the resolving type, not the progressive type), it may not resolve to less than 10*. Would Mehta casting with EDF produce a better angle? Is it, in any case, worth getting the opinion of someone trained in the alternative method? (there is a consultant in Oxford who does this type of casting I have found out, plus the ones I knew about in Liverpool and Middlesex).

I would like to know what effect the growth spurt during puberty has on a residual curve too - if there's a weakness, then won't it exaggerate that? (that seems logical and is what other parents have been told by doctors on the message boards I'm on, but their children have progressive scoliosis that is being treated by Mehta (down to less than 10* in quite a few cases!), so I don't know whether it applies in J's case).  

I will be building up my questions for 10th October.

Thursday 8 September 2011

happy holidays - 1

We had a lovely time near Woolacombe, North Devon. I relished every moment of not having the cast :-)

J played on the beach, paddled in the sea, went swimming in a funky swimming pool (with rapids, slides, underwater geysers etc), had baths every day... wonderful.

I haven't time to finish this blog in one go - but here are some beach photos. I love the video at the end - J found great delight in destroying any sandcastle that we built :-)






 Playing ball (or rather running away from mummy carrying the ball!)


 Spinning round - J LOVES doing this




 Removal of the cast (our first trip to the beach was made with the cast, knowing we could take it off later) - always a moment I love. And J is always so patient - he knows what is happening and waits very still.


 Bathtime. Wonderful to play with all those toys again :-)
 Back to the beach



 J consumed a lot of sand while eating snacks. Didn't seem in the slightest bit bothered!






 My favourite photo out of all of these. One happy little boy :-)

 This is great - DESTROY!!!

long time no see!

Before you ask, no we haven't been on holiday all this time!

We had a lovely time at the seaside - more of that anon - and J had his 6th cast fitted the Tuesday after we got back.

I must admit that the re-casting really affected me this time. I felt quite down knowing that this will go on and on for years yet. I've picked myself up and given myself a talking-to since then. Severe lack of sleep while on holiday had taken its toll. One night I got just 2 hours and other nights were not much better. I hate sharing a room with J as he makes a lot of noise at night even when he's asleep and doesn't need me at all. Sleep has been better for the past few days - however, if I wake up after 3am or so (now it's often not J's fault) I don't get back to sleep and that's a problem.

J was fine about getting the cast again. He protested a little about the towelling jersey, but then stood as good as gold throughout (with his legs crossed- don't know why!) and looked at the pictures on the walls. The plasterer was going to offer a lollipop at the end, but I took J for our traditional post-casting sausage instead (this time with a bowl of baked beans). He had started to be reluctant about walking down the corridor out of the casting room, but a mention of the sausage spurred him on.

The pictures below are the only ones from the casting - what a cheeky face, eh? He's recently learnt to stick out his tongue, and keeps on and on doing it :-) No sign of the tongue tie he had at birth (it was only slight anyway). And obviously not in the least bit bothered by the new cast!