He Can’t Join The Army

Agriculture starts with an A: so let’s start there. The BIL/SIL farm didn’t quite make the reserve they had set. They were attempting to sell a farm which has suffered mortally from floods and bovine TB, complete with a cottage and huge moneypit 18thC manor house in a state of moderate disrepair, in order to hopefully buy something larger, better situated, with a modern farmhouse that doesn’t burn such swingeing holes in the balance sheet. John and I felt anti-climatic afterwards; we were vaguely hoping they might buy somewhere nice near the coast where we could leave our battered caravan, reducing the linear mileage of our Towing Shame.

B is for Bar – which is where we ended up after the sale. We had arranged parental babysitters (C is for Cloud, which is what appears to be sitting over everyone’s marriages currently) for the evening, but in retrospect we should have made an early escape from the auction room to the pub. D is for diarrhoea, which I what I was obliged to scurry away from the bar to attend to an attack of, my son having kindly passed on his affliction of unknown origin.

E is for total fucking Eejit, which is an undeservedly kind label for the man that designed Warwick Hospital carpark. F is for Fit, which is what Harry promptly threw when we infringed his civil liberties by attempting to measure his height – when we finally arrived, breathless and carpark-stressed, at his appointment. G is for little Git, which is what I hissed at him under my breath, before realising the children’s clinic nurse could totally hear me.

Which brings us to H, for Harry.

Harry’s Paed appointment was… hard work. He simply didn’t seem to fully comprehend the nature of what I was describing. He clearly doesn’t see what we see (Harry walked beautifully in the clumsiest sandals I could find to put on him, damn him!) and we could discern his politely concealed scepticism. He looked less than delighted when I produced my list, but he’s essentially a cheerful chap and dutifully noted everything down. It was quite apparent to him that we were not accepting a brush-off, and the fact that Harry’s SALT had already referred him elsewhere for mobility assessment helped give our standpoint a little more gravitas. He then gave the little lad a thorough going-over.

The upshot: Harry has some hypermobility in his joints, which would clearly account for some of his wobbles and clumsiness. I can feel Shannon wincing from here, but he is thankfully unlikely to be suffering a very acute form of this condition – the Paed gave Harry’s joints a pretty intensive mauling about, and any extreme double-jointedness would hopefully have been rather more apparent.

John and I realised afterwards that we often feel his wrists and ankles click when we are rough-and-tumbling. However, I have today discovered that I can easily bend my own thumb back far enough to touch my forearm – and remembered that my pregnancy physiotherapist (obtained when my pelvic ligaments went ffffflllhhhhueeeurrrrppp [yes, it sounded just like that] at 20 weeks) called me ‘ever so bendy‘ (‘for a knocked-up total fatty’, was the end of her sentence that I heard being left unspoken) but, flexi-mother (and John was sorely disappointed to have an Officially Bendy wife who was far too complicatedly pregnant to DO BENDY STUFF with) genetics notwithstanding, there’s something more than some wobbly joints amiss here.

The Paed ordered a hip x-ray which we attended straight away – with a now-tired and uber-screamy toddler who thought being held down under the Big Scary Device was Not Nice, and signally failed to share his Mother’s amusement at seeing Daddy wear a tabard – but there was no-one around to interpret the results on the spot (hhhrumph!) so we’ll have to wait and see. We’re not expecting dreadful news; I hope we’re right. He also referred Harry for physiotherapy in order to try and work on his balance, which is the outcome I am most pleased about.

He lay flat on the floor to have a close squint and declared Harry’s feet to be flat as pancakes – I assume he meant even by the toddler-species usual flatfoot standard – and he thought some arch supports may be useful in correcting his gait. Which was missing the whole unsteadiness point by about a million miles – but we’ll give them a trial anyway.

He briskly dismissed our concerns about Harry’s height – 78.5cm – out of hand, as he is following his percentile. The 0.4th percentile. He noted his complete lack of clear speech, but didn’t linger on the topic.

I told him straightforwardly that I was absolutely convinced Harry had taken a neurological knock during pregnancy. He told me that he could see no subtle markers to suggest such a thing, although he did ask me again about Harry’s assortment of strange tic-like repetitive movements I had earlier described to him.

I can’t agree with him. I just can’t. But neither am I particularly wound up about it, because I think the question is currently of academic – and parental – interest only. We got our x-ray. We’ve obtained some physio input, which will surely identify that Harry has Issues, and help to overcome them. We have a comprehensive home assessment due this month, which will presumably be done by people who can spot Wobbles when they see them (and have Clever Solutions up their sleeves, probably called More Physiotherapy). We’re not discharged. I’m happy with those results for the time being.

Our next-door neighbour, R, dropped by today to enquire how it had gone. She is a darling neighbour, a senior anaesthetist, and her daughter is Harry’s Godmother. Hubby is a GP, which is awfully reassuring when it’s a bank holiday weekend and you have a tiny, tiny, tiny baby who coughs, coughs, coughs. As we stood in the doorway and watched Harry slowly topple forwards into a plummeting nose-dive off the caravan step – a nose-dive which we agreed any normal toddler would at least have attempted to correct – she told me that she is convinced that low muscle tone is actually where Harry’s balance problems stem from, and, having read around the subject this evening, and given myself neck-ache from nodding furiously, I am certain that she is right. Mild trunk hypotonia with a judicious sprinkling of hypermobility and a soupcon of toddler-judgement FAIL would be a diagnosis I could totally get on board with. Perhaps a small prize would be appropriate for the first medical professional to formally give it?

Harry, of course, thinks his falls are absolutely all par for the course, and has IN NO WAY (and oh, dear God, how I wish that I had more emphasis available to me here than coloured bold capital italics) learnt to exercise more care, take things slower, look where he is going, or avoid blatantly unstable surfaces. He blunders straight into, over, under and through everything in his path with blinkered, Light Brigade determination. He is not one of those children who, injured, retire cautiously into immobility. He is, it seems, his own best physician as he ceaselessly patrols his little world, searching vigilantly for virgin ascent routes to the bookcase / worktop / fridge / dining table / woodburner / desk / windowsill summits. The only direction he wants to travel in is Up, and he lets nothing short of plummeting, blood-letting disaster hold him back.

And sometimes not even then.

Toddler bloody lip

However all these issues work out, he will plough on, utterly regardless, following an agenda that is entirely his own.

I like my son.

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14 Responses

  1. I like your son too.

  2. http://www.ednf.org

    It’s what’s wrong with all of us over here, and doesn’t explain everything, but is worth asking a geneticist about. Also causes preterm labor even in people without uterus didelphys. I dislocated my hip while pregnant once and OWWW. The thumb-to-forearm thing is diagnostic.

  3. What Iota said. Glad you finally got some answers.

  4. Frustrating as it is, often many things are firmly diagnosed via the retrospectoscope. You see your son every day, so you will pick up on things that others do not. Ongoing referral and assessment is a good start,

    xx

    g

  5. I like your son too. He’s my second favorite toddler born on August 3/07.

    If Harry wants to join the army one day send him to Canada. Sgt has flat feet and they took him anyway.

  6. Your son is the cutest little charmer with a fat lip that I know. And I like him a lot as well. (Bit stalky that, I know). Glad to hear things went some of the way to investigating and taking action on some issues. Here’s hoping to continuing improvement.

  7. Some kids have the internal danger alarm. Some kids (like mine) have neurotic parents who are constantly telling them to be careful. Some kids forge ahead to adventure no matter what.

    My girl and her (boy) cousin (who’s a year older) were at the park together for the first time the other day. She was climbing on every surface she could get her fat little hands on (as long as I was available to catch/help her), mumbling to herself to be careful all the way up. Her cousin was barely willing to climb up the stairs to the tall slide. He wouldn’t even try some of the various ladders – even with my or grandma’s help. I don’t know if it’s exposure or temperment, but differences were certainly clear. Some kids like danger. Some kids don’t. Looks like you got one who likes danger.

    In a way, though, that’s good. It will be hard to teach him about the healthy fear. But if he does have the challenges ahead that you suspect, his brave nature will help him to overcome.

    Also, he’s pretty cute even with a fat lip!

  8. Harry will be spending his 25th birthday at Everest Base Camp, won’t he?

    Hurrah for being taken seriously, but my heart aches that there’s stuff that NEEDS to be taken seriously. Fingers crossed the physiotherapy gets him somewhat less wobbly, as clearly nothing at all is going to stop him scarmbling along narrow ledges and climbing great big tall things. Bless the lad.

    Also, why is it, whenever the Appointment is Made, and the Specialist Summoned, the Symptom Evaporates? It’s a Law of Nature. Nature is such a sarcastic cow.

  9. “Mild trunk hypotonia with a judicious sprinkling of hypermobility and a soupcon of toddler-judgement FAIL would be a diagnosis I could totally get on board with.”

    This describes my youngest’s issues to a T (except with somewhat more of a soupcon, but still). With a little physical therapy, growth, practice and time she is nearly past it now at age 4. Glad that you are starting to be heard and on the way toward getting answers and help for your darling boy.

  10. Entirely unhelpful to offer you more ideas here, I fear, but something in the bendiness rang a bell, so I checked and found this here: http://hedra.typepad.com/hands_full_of_rocks/2008/11/off-to-the-spec.html

    and also followed the link to this here:
    http://en.wikipedia.org/wiki/Ehlers_Danlos

    and thought well, maybe this isn’t on the radar but should be. Would also like to point out that blogger Hedra seems to be a very nice and helpful person, and might be a pleasant reference for you in the “looks normal, has something slightly wonky” parenting peer-to-peer chatting department.

    Finally, of course, I very much like your kid, too. And you’re not fat.

  11. He is adorable even with blood pouring down his face. I am glad the dr’s visit was not a complete bust. Not being discharged in this instance is a good thing. There will be an appt I’m sure when what you see will be obvious to the dr too.

  12. Hey, hedra here – saw the click-through on the link…

    And, uh, yeah, welcome to my life. Hypermobile mom, check! Child with serious crash-and-burns and no fear, check! (He’s much better at almost 8 yrs than he was at 2-3, by the way, but he still has compression scars/adhesions on his forehead strong enough that if he frowns you can see exactly where he slammed his head into some corner or other.) Growth issue (followed by tracking along on his new curve ‘just fine’ but also five standard deviations below his genetic-expected curve, hello, and three is considered a Red Alert), check! Doctors giving patiently skeptical looks, check! (ARGH, but check!)

    Hypermobility clinic (pediatric) said ‘not EDS, not ‘clinical hypermobility’ but definitely something wrong with his collagen structure’ (yay, you don’t qualify as having something ‘named’ but there is something ‘wrong’ – now go explain that to his teachers for school…), and oh, by the way, he should have lifelong physical therapy – I’ll note that in the letter I send out to your other doctors, so it is in his file and you can qualify for services. Oh, and get PT yourself, you should have it for life if you have hypermobility at all.

    Great.

    On the plus side – trunk, hip, hand strength, and coordination all massively improved with the current PT program (‘horseback riding lessons’). Balance, gait, caution, sensory processing (including ‘approaching activities with an eye to safety – sometimes’) all vastly improved once riding lessons started (he started at 4 years old). Other forms of PT also work, but the clinic said that riding was perfect for PT (pricey, but perfect). He could qualify for the therapeutic riding program as well, but he is right on the margin, and he’s really looking forward to group lessons – so… off to the regular lessons he goes, knowing that it takes a LOT of work on his part to develop muscle tone (two to three times as long as other kids), but once he develops it, he is as strong as anyone (and stronger than many) – and it sticks, and it for some reason improves the function of the collagen as well. So most kids in his lessons will move out to the next level before he does, but he’s aware that is a physical thing that he cannot change, only work on – and he’s remarkably mellow about it. (My most bendy sister is a) a professional dancer in addition to being an IT contractor, and b) rehabilitates adopted draft horses, oh, and c) does dressage riding which requires intense strength – so it is definitely doable to get those muscles going.)

    Anyway, I feel for you. I’ve got three kids who are bendy out of four, though various levels. One with very low hand strength (at almost 5, she still struggles to flush the toilet one-handed), one with fairly low hand strength, all with sensory processing issues (can be related due to the neurological impact of collagen failures – nerve sheath is collagen, messy nerve sheaths mean spotty transmissions).

    At this point, our family doc is on board with the whole deal – yeah, you’re outside the clinical boundary for X, you’re inside it for Y, we’ll count it, and any time you want to add more PT, I’ll write the referral. (More important once they’re out of preschool for the twins, since they get a lot of physical work in preschool.)

    Hang in there and good luck. I know the frustration. Seriously, totally, absolutely. But damn, the kids are cool.

  13. Oh, and do you know that there’s a hypermobility clinic in Leeds? They’re basically the top in the world. Not sure where you are (haven’t had time to read through on your blog, but the pounds sign is suggestive, 😉 ), but it might be worth a trip… we’ve considered it even though we’re in the US.

    Feel free to ping me by email – contact is on my blog.

  14. […] He listened. He’s always been a damn good listener, even when he wasn’t concerned because he just couldn’t see in Harry what I saw. (Neither could many people, to begin with, […]

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