The paediatrician‘s face was imperturbable.”Was she supported by two people in her walking? One from behind, and one at the front holding her waist?” he queried, noting the affirmative reply – and then moved on.
Reviewing the progress of a child with CP has the curious tendency of being both encouraging and deflating. Without using Isobel as an example, it’s hard to explain, but I guess it’s reflective of the disability as a wide-ranging umbrella term.
It also highlights difference of professional opinion. Not only can this be debilitating (for reasons given below), but it reinforces how difficult it is to work with CP. Conflicting philosophies often mean inconclusive or contradictory outcomes, prolonging the debate. I believe it’s made worse by the refusal of medical professionals to note individual achievements, or carry out external recommendations by others, that might appear to undermine their practice – at the child’s expense.
That was certainly the case with Isobel. Following a physical examination last week, the paediatrician concluded that her gross motor development had progressed only a tiny bit, whereas there was far more improvement in her fine motor skills. This I found very bizarre. Didn’t Isobel take her first steps last month? Had she not shown consistent progress in that department since?
I tried drawing the doctor’s attention to this – hence the behaviour described above. He didn’t even ask what Isobel was doing with her legs.
“Maybe he’s seen it all before,” suggested my mother when I recounted the story. That could well be the case, but it’s never an excuse for complacency. After all, the paediatrician himself had spoken previously of cases where other children with CP had surpassed medical expectations. In light of this, his response this time was a trifle odd.
Instead, he focussed on what Isobel could do without support. It wasn’t that it was no longer a viable bridge to independence. Rather, he was being a NHS representative, exploring what his colleagues could do to address those areas for improvement. The merits of Conductive Education were of little concern to him.
I am not alone in disagreeing with the paediatrician’s conclusions. Several others have also remarked on Isobel’s astonishing progress, stressing that it is far more encompassing than he has implied. But what can you do? He’s her doctor. We need him to monitor her general wellbeing – and in the main, he does do an excellent job of it.
Back to the review, where a X-ray was mentioned. “A X-ray – what’s that about?” I asked with some trepidation. It transpired that Isobel’s habit of frogging her legs whilst supine – one that has thankfully waned since she increased her enthusiasm for kicking her legs – placed her at risk of weakening her hip muscles, potentially dislocating the hip bone from the femur in the long term. Some CP kids never walk as a result of this.
The paediatrician was keen to stress though that it was not a matter of urgency – so far, the physical examination had shown no evidence of this happening.
Spastic quadriplegia. That was the type of CP that Isobel had. In plainer English, her stiff joints – those spastic arms and legs, more so on the right than the left – were the cause of her quadriplegia, not any form of paralysis (which is what confuses people).
This does not necessarily signify that she will develop the jerky, involuntary movements that many associate with CP – that is in fact athetoid, not spastic CP, although some do have a combination of the two. I am hoping that the muscles in Isobel’s low-tone trunk can be built up easily, so she can co-ordinate the rest of her body from the centre more efficiently (a bit like one of those airport traffic control centres).
More promising news was to come. Isobel had been prescribed the same amount of medication since June 2010 – which, given that she was still growing, technically meant that she had less medication in her body than she used to. The paediatrician hazarded the possibility either that she had outgrown it, or her fits had subsided. Even so, as a precaution it was good practice to keep her on the same medication for a maximum of three years before weaning her off it. Waiting until June 2013 was recommended before we could consider a withdrawal programme – on proviso, of course, that Isobel remained seizure-free.
Doctors keep their emotions hidden for a reason. It enables them to impart bad news and assess patients objectively and without too much fuss. The upshot of a paediatric review like Isobel’s last week is the ample opportunity it gives us to choose how we want to take the news – literally, with a pinch of salt, or not at all.
