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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