I still find it hard to believe that Frog only started walking a little over a year ago, aged two years old. When I look at her now, I realise just how far she has come.

Moving to a new area has meant joining a completely new hospital system. Frog still has ongoing issues with her hypermobile joints – issues that may never go away completely. For example, she needs hospital-issue insoles in her shoes to correct her lack of instep and relieve the pressure on her knees and hips. In the future, she may need more physiotherapy treatment and – if she still suffers from hyper lax joints when she’s older – she may experience added discomfort during pregnancy. People with hypermobility are also sometimes prone to early arthritis, which is a bit of a bummer. (There’s more information about hypermobility and some of the symptoms on the NHS Choices website.)

The thing is, every day my 3 year old diva gets a little stronger and her past battles with those bendy joints are almost forgotten. This week we’ve ditched the buggy on the way home from pre-school, opting for a mixture of walking and mum piggy-backs instead. That wasn’t even a choice we could have considered back in September.

And then, the other day on our walk, Frog found a huge hill (Dartmoor is good at hills) and ran towards it like a bee to a hive. That’s when this happened:

At the bottom, she turned around and ran right back up it again. And again. And Again. I even got the opportunity to film it:

You might watch that video and think, “So what’s the big deal? It’s just a kid running down a hill.” But it isn’t. It’s a kid who, this time last year, could barely walk. It’s a kid who, 18 months ago, we feared would never run – let alone run down hills.

On the umpteenth hill run, Frog asked if I’d join her. I’m not a fan of running, but there’s something kind of tempting about watching a child belt it down a hill with such wild abandon.

Of course we both ended up falling over and half rolling into a muddy, squelchy bog at the bottom. But we laughed, and then laughed some more.  My guffaws turned to wimpy sniffles when my formerly non-walking tot turned to me and said, “Mummy, I like running down hills.”

And that made me happy.

***

A side note: I get quite a lot of emails, tweets and Facebook messages from parents who are at the beginning of their journey with hypermobility. I’m not an expert, but I’ve picked up a few things in the 18 months since Frog was diagnosed. There is a difference between having hypermobile joints and having hypermobility syndrome. Lots of people have hypermobile joints and it causes them no problems at all. Hypermobility syndrome is often diagnosed when pain is added to the equation. Some sufferers also experience dislocation. We are still unclear to the degree of Frog’s hypermobility and, indeed, it may be something she grows out of. If you are looking for more information about hypermobility then The Hypermobility Syndrome Association is a good place to start. And, of course, speak to your doctor. 

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My daughter climbed a hill today. Not just any old hill, but a really long, really steep one.

This is a big deal because, just over a year ago, she couldn’t walk.

In May last year we found out my toddler had hypermobile joints. Put simply, we were told her joints were too flexible to support her weight. Imagine a pipe cleaner or elastic band trying to hold up a marble, and you get the picture. 

At nearly two years old my daughter still couldn’t walk and would be left sitting on the floor watching on helplessly as other children played around her, running and jumping. It was painful to watch the side effects of her delayed walking: withdrawal from play, intense shyness in new surroundings and an obvious hesitance to use her very chatty vocabulary the more she became aware of her difference to other kids.

Once physio treatment started we noticed a marked improvement. Her little feet – with no in-step and turned out at right angles to her body – started to move inwards. She was given special Piedro boots to do the job of her bendy ankles and to help strengthen her knees and hips.

Once she was up on her feet and walking, these were replaced with hospital-issue insoles which slotted into normal shoes. She still has these and, we’re told, probably always will. High heels and wedges look unlikely in the future, although our doctor won’t rule out the possibility that her feet will correct themselves at some point.

Just over a year on and I often forget the battles we went through to get Frog up on her feet. The nights where I would worry myself to sleep, afraid to imagine what could be wrong with her, are a distant memory.

I can barely remember the lump in my throat as I watched my baby be held down, screaming, under an X-Ray machine, as doctors worked to rule out hip dysplasia. I have brushed aside the image of my girl clinging to me terrified while a needle was jabbed into her soft skin and blood was drawn, as consultants checked her intense fatigue wasn’t caused by anaemia – or anything more sinister.

The truth is, just over a year on and Frog is OK. She can walk and run and jump with the best of them. Her hypermobility is only really evident when she gets excited – especially if she’s sitting down. That’s because her little body tenses with glee and her legs bend the wrong way towards the ceiling, like a double-jointed picture of happiness. (Incidentally, she also flaps her arms about as if she’d take off, but that’s nothing to do with her hypermobility.)

When I look back on where we were in April and May 2012, I can barely believe what my three year old is now capable of. Although she still often needs a buggy and asks to be carried after a while, she is a determined little person – and strong willed to boot. Today she decided she was going to walk up the huge hill to our house all by herself, and she did.

Who knows, tomorrow she might run up it.

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It wasn’t huge on the scale of things, but it’s been niggling in the pit of my stomach for a week now.

After being told back in February that Frog’s walking delay was NOT due to hip dysplasia, we had a letter telling us otherwise. After the countless appointments we’ve been to and the blood tests and the physio sessions, this was a setback. And a confusing one at that.

The letter was written by a pediatrician we have yet to see, after he thought that we had failed to turn up to an appointment (we hadn’t, but that’s another story). It was a very pleasant letter, forwarded by our GP, but the sentence at the top of the letter had me in tears.

Problem: Mild hip dysplasia, joint hyper-laxity, mild developmental delay

Lack of sleep combined with confusion just opened the flood gates. And then the tears turned to anger. I went through all the possibilities in my mind, constantly coming back to the one that I most feared. There’s been a mistake. I misunderstood. My two year old does, actually, have a dislocated hip.

The thing is, we have never actually been sat down and told what she is constantly being referred for. The GP originally referred her for suspected hip dysplasia. Given that she was 19 months at the time and still not walking, it seemed like the most obvious answer.

But she was x-rayed and examined and – although a bit clicky – the hip was given the all clear.

So then she was referred to a physio for the flexibility (or hyper-laxity, hypermobility, bendiness – whatever you want to call it). But the specialist nurse requested to see us again, to check progress. By this time (I lose track amongst all the appointments) Frog was actually up on her feet. She’d just turned two and was a wonky walker, but a walker all the same.

But she was sleeping lots. Some nights, there would be up to 17 hours of deep sleep. This concerned the nurse and she ordered blood tests.

Blood tests came back negative of anything scary and again we heaved a sigh of relief. But still the nurse was concerned. And because she’s thorough and wanted to erase all questions, we were referred to a pediatrician.

Or so we thought.

It was then that we received this letter out of the blue. And I started to wonder if the initial x-ray had been re-examined and a problem had been found. I asked my buddies Jane and Emma if they knew what “mild” hip dysplasia meant. I vented steam by writing cryptic, angry posts on Facebook.

I made lots of phone calls, was put through to various different people and was kept on the line waiting a fair few times.

And then, after a week, I got the call I’d been waiting for.

“She doesn’t have hip dysplasia. It was a mistake. You shouldn’t have had that letter. We got our wires crossed. Really sorry.”

I’m too relieved to be cross at the admin error – or whatever it was.

My bendy girl has jumped through yet another hoop. Which is quite fitting really, considering she’s recently learned how to jump and actually take off from the ground, even if it is only a millimetre.

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