Sunday, 27 March 2016

Smiler's latest health kerfuffle

I've umm-ed and ahh-ed a bit about sharing this, but after a recent conversation with another special needs mum have decided to go ahead.  It's that old chestnut about balancing the privacy of your children when you blog, with the reality of life.  I know that I, as a parent, have learned all kinds of useful info from reading about decisions and difficulties that other parents have faced, and I'm the sharing kind I guess.  If you don't want to know, don't read on!  Subjects that will be covered include puberty and fertility in a young person with special needs, and medication related to these.

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I wrote back in November about the lack of physical changes evident in Smiler, and seeking medical advice about whether this was evidence of a problem on the horizon, or whether I was being an over-educated, looking-for-trouble type mum.  Although initially I'd asked the GP to refer Smiler to an endocrinologist, we ended up seeing a general paediatrician, who then had to refer us on to an endocrinologist.  In the NHS access to a specialist is tightly controlled, and while I understand the reasons this has to be the case, I'm frustrated when it means we used up the time of a general paediatrician whose only action really was to make the referral I had actually requested in the first place.  Surely listening to the (well researched and not overly cautious) parent who has years of experience of working with specialists would have been the sensible way to go?

Anyway, we went into the appointment with the endocrinologist aware that Smiler's blood tests had revealed his levels of testosterone and LH (luteinizing hormone, another one related to adolescence) were so low that they were technically classed as 'undetectable'.  Reassuringly - kind of - this matched with the lack of development of sexual characteristics we had reported - no body hair, no genital changes, no growth spurt.  These, in turn, tallied with Smiler's 'bone age' which, from measurements from a hand x-ray plugged into a complex algorithm told us his bones are eleven years old, which explains why he was such a floppy baby!  Though his dental age (oh yes, we all have a dental age too - who knew!) is 19, so doesn't fit with either his bone age of eleven or chronically age of fourteen, we're ignoring that right now.  For more info on signs of puberty, check out the NHS Choices / Live Well website.  At the hospital, after a complicated calculation for which they needed my exact height (apparently 'short' isn't marked on the chart) and Mr's (neither is 'tall'), it was determined that Smiler has not reached the height you would typically expect by his age (chronological), so things were not quite right.  While there can be a number of reasons for this, including Smiler simply being on the very late end of average, the endocrinologist, when asked for his best guess, taking into account the factors specific to Smiler, told us he doesn't think this is going to happen for Smiler naturally.

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To be honest, I find myself in two minds about this.  First, I wish Smiler (and the rest of us) didn't have to deal with this.  I wish Smiler's pituitary gland was working the way it's designed to.  However, bearing in mind that it isn't, I'd rather know, and feel that it is being dealt with, or at least that we are getting the necessary information to make an informed decision about dealing with it.  With the health issues that Smiler has faced over the years there is definitely a bit of my head that sometimes wonders if I'm imagining problems, but having medical tests that back up my thinking validates my instincts, which of course is completely my issue and nothing to do with Smiler.  Sorry kid.

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Our first question on being given the explanation for this convergence of results - that Smiler has a gonadotropin deficiency - was an easy one to ask, but tends to get a bit of an eye roll from medical professionals.  "If we opt not to treat this, what would that mean for Smiler?"

I should point out that our inclination is to leave things alone, unless we feel the outcome justifies the risk.  His hip surgery for example - if he had not had this major orthopaedic surgery, his joints would have deteriorated and he would have been in constant pain as well as being unable to walk, weight bear or even sit.  Our thinking includes the knowledge that so many medications come with bucket loads of potential side effects which might impact on something else, and with Smiler's level of communication and understanding we might be unaware of what is going on for him - headaches, dizziness, fatigue, double vision, nausea - all common side effects of lots of medications, and all things that could impact significantly on his quality of life.

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On top of these medication issues, we have another issue in mind.  Puberty equals growth spurt which equals pressure on Smiler's joints.  Sexual frustration, mood swings, hormone surges, wet dreams, acne, body odour - and for what?  What lies on the other side of the scales here, for Smiler?  There are news stories out there about parents seeking medical treatments to prevent their disabled daughters from menstruating or becoming pregnant, like this one in the UK.  Australian authorities have looked into the issue of forced sterilisation, and this well known US case involved a young disabled child undergoing significant medical intervention to avoid issues directly related to menstruation and puberty.  But what about boys, who - stating the obvious here I know - cannot become pregnant?  The ethics related to growth attenuation therapy - dosing children with hormones to inhibit their growth - is examined here, by the New York Times.  This treatment has been doled out to boys, but the situation with regards to Smiler is slightly different - both practically and ethically.  Our decision lies not in whether to medicate to prevent puberty, but instead whether to medicate to cause puberty in the knowledge that without our intervention it will most likely not happen.

Myriad issues to try and consider here, ranging from 'should our severely disabled son undergo medical treatment in order to potentially become fertile' to 'how much pain and/or discomfort will such treatment cause him', along with 'if he could make this choice, what do we think he would choose'; 'his becoming physically bigger and more mature will make some aspects of his care more difficult'; 'growth spurts could potentially destabilise his curved spine, necessitating surgery, body braces, and bring him lifelong pain' - it's  a lot to try and balance.

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What do you think?  Are you passionately for intervention, or do you think it's unnecessary?  Do you think we're selfish for considering not going ahead with treatment, or does the hands off, let nature take its course argument swing it for you?

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Monday, 14 March 2016

The Problem of The Stairs, and (fingers crossed) the solution.

So, after getting the DFG approval last week I decided I had to get on with the getting on, and make a start.

The builder, however, disagrees.

Well, not exactly disagrees, just isn't able to start right away.

Apparently, four hours notice is not sufficient.

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I'm fighting urges to choose his bedroom furniture and take up Smiler's curtains and start painting, but we are nowhere near that stage yet (as Mr keeps reminding me), and as patience is not my strong suit I began looking through the schedule to see if there was anything I could be getting on with.

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What I came up with was, disappointingly, not an awful lot.  But, you have to start somewhere, every journey begins with a single step, and all that jazz.

Our first step was placing an order which will - hopefully - sort The Problem of The Stairs.

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The Problem of The Stairs

When we moved into the bungalow Smiler was two, Noah was one and I was (very) pregnant with Petal, so none of them have ever known stairs.  In fact, I remember taking Noah and Petal to places where there were steps so they would get the hang of them, after Noah started nursery and I watched him struggling to climb the few steps to get in.  It sounds daft, but they had just never encountered them, thanks to always having Smiler along with his wheelchair which meant (as usually it was just me with the three of them when Mr was working) that we had to take the lift in shopping centres and if there wasn't a lift - well, we just didn't go there.  

Though they have developed in confidence since then (obviously), stairs are still something of a novelty - here's Petal the day we bought the house, very very wary of the plastic the previous owners had put down... 

The original idea to solve The Problem of The Stairs, courtesy of the OT, was to put a bloody great safety gate at the bottom, but Mr and I nixed that idea pretty sharpish.  We want Smiler to learn not to try and climb the stairs without supervision and support, but to physically block them impacts everyone - me running up and down with washing, Noah flying his radio controlled helicopter around, Petal encouraging Eli up the stairs to brush his teeth.  I hate distributing everyone's clean washing at the best of times (housekeeper of the year I am decidedly not), but the idea of trying to juggle a couple of armfuls of laundry while undoing a fiddly baby gate (that probably takes at least two hands to open at the best of times) and then trying to get through it (without tripping over) and then closing it behind me - well, I was looking for an alternative, put it that way.

I was told about 'break beam' alarms that are sometimes used as a safety aid with individuals with dementia.  An alert that is triggered when - for example - an individual leaves a safe area of the house.  A bit more general googling and another chat with the OT, and I had a few suppliers to check out, the stand out front runner of which was EasyLink UK.

EasyLink are able to put together customised sets of call buttons, break beam alarms, movement sensors and all manner of other cleverness, and were hugely knowledgeable when I spoke to them on the phone several months back.  They recommended movement sensors rather than break beam alarms, and also provided advice about help buttons, which was something else we'd considered but didn't know where to begin looking.  I got back in touch last week and placed the order for Smiler's set-up, which all link to a pager - when it goes off, a message comes up telling us the trigger, so we know whether he's left his bedroom, or gone into his bathroom, or pressed his bedroom or bathroom alarm button.  This lets us know whether we have time to pull on a dressing gown and feel around for slippers, or whether we both need to tear downstairs sans modesty because he needs us right this second.

Well, that's the plan at least.  When it all arrives in a few weeks and we get to try and set it up I'll let you know how it goes!

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Tuesday, 8 March 2016

Mother's Day clarity

My daughter made me cry yesterday, on mothers day.  She didn't mean to, and it wasn't because of some thoughtless comment - well, I guess it kind of was...

We were talking about pets, of all the mundane conversations, and she was asking whether we'll get another cat when Meg dies, and if we did, whether it could be hers.  I pointed out she already has her own pet (Misty the Rat) and most kids don't get their own pets anyway, and I would have loved to have even a rat of my own growing up but that just wasn't an option in my family, and she said the loveliest thing :

"They weren't family, they were just people who lived in the same house as you.  We're a family."

With all the soul searching and reasoning and logic, all the hundreds of times that I've revisited aspects of my childhood and teenage years, this comment suddenly brought new focus and gave everything sharp edges.  

She's right, of course, and while I'm aware her knowledge of my childhood entirely consists of what I've shared, and is shaped by the language I've used and body language I couldn't conceal if I tried, that clarity - that absolute simplicity - reminded me that for her, and for Noah and Smiler too, family is all about safety and security and warmth and love.  

That's what my family - our family - is to us.

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Sunday, 6 March 2016

{our Disabled Facilities Grant} finally

I had spent so long anticipating the official final approval of the DFG that it had become almost mythical - one of those things that wouldn't actually ever happen.  But, last week, I got an email from the surveyor saying this :

"Please see attached grant approval letter sent out in the post today"

The Disabled Facilities Grant that we applied for in May has been approved, and we can finally start turning this house of ours into a home that we can all live in.

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