On the helmet

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Oh the helmet. What a mission that was – trying to keep Mikaere cool in the helmet was such an ongoing effort. We’d pull it off at the first sign of sweat (because we know an increased temp causes an increase in seizures). We’d spend forever positioning fans and taking off or putting on clothes as he got too cool or too hot. And every time I’d tell myself it’s worth it. The helmet is worth it.

You wouldn’t know it for looking at him, though. He still has a flat spot, and a bit of a ridge. But you guys – my eyes aren’t very good a telling apart a shape with millimetres difference from week to week, but numbers don’t lie. Every few weeks we’d go back and while Kaikai’s head was still growing, there was be a millimetre or two difference. Like I said in that initial post it’s going in the right direction.

Going in the right direction for us is huge. It’s HUGE.

And it’s huge because before Mikaere wasn’t able to turn his head past the ridge he had. But now? Now he can. Now the ridge has been reduced slightly, enough that he doesn’t need as much effort to turn his head. Do you know what this means? It means his muscles were building up evenly on both sides of his neck. It means he figured out he *could* turn the other way, and did, frequently. It meant that he was no longer restricted!

How huge was that?

Even better is this week Mikaere’s fontelle closed. With the closed fontelle the helmet couldn’t do it’s job anymore and we were done. DONE! We went for the final scan and after that – NO MORE HELMET! I’m delighted. No more stinky helmet hair or worrying about an increased temp or sweat or sterilised wipes for cleaning it down. Don’t get me wrong, the helmet was absolutely the right choice for us. For sure. I’m glad we did it. So so glad.

Even better when we got the final report back, the results were staggering. The Cranial Vault Asymmetry measures the left and right diagonals (meaning, front left to back right, and front right to back left) 30 degrees from the centre point. They take the two measurements, and minus one from the other. That difference is the Cranial Vault Asymmetry.

When we went in, the difference was 24mm. When we left, the difference was 14mm. 14mm!!! That’s huge, and there is so clearly an improvement.

I’m still annoyed the NHS told us it was cosmetic only and they don’t treat it – that was not true for us, the cosmetic only part. I wish I’d gotten a second outside-the-NHS opinion earlier. It could have been solved much earlier and maybe Mikaere would have made gains earlier… but if I’m wishing things, I’d also like to wish for a cure for NKH.

Hey ho. We got it in time, we had a good seven month run of helmeting. And now Mikaere has a slightly more rounded head with a smaller ridge that he can turn.

The helmet was excellent for us, I’m glad we did it. But also – high five!! Helmet treatment finished!!

On the helmet

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Last year, when Mikaere was in his end-of-life seizure coma and it was all doom and gloom, he spent a lot of time on his back. As in, 24/7 on his back.

Because he was terminal, no one saw the need to reposition his head. This meant Mikaere developed an epic flat spot. Like the flat spots of all flat spots.

The NHS told us it was cosmetic, nothing to worry about it. Except that because his flat spot was so epic there was a RIDGE. And Mikaere didn’t have the tone to push his head over that ridge, so he never looked left. Ever. Which meant all his muscles on one side developed, but not the other.

Cosmetic my behind. This is one of those lessons that hit me in the face: as much as you want to trust your doctors and therapists, always make the point to ask if an answer is NHS policy or evidence based. Because there is PLENTY of evidence that an epic flat spot like this is not just cosmetic (I’m fuming, can you tell?)

Here’s the thing, I asked initially when Mikaere was six months about the epic flat spot. I didn’t think to question it until Mikaere was a year. Fail. This is a fail because treatment is only applicable while Mikaere’s skull is still soft enough to mould, meaning only until his fontanelle closes, which typically happens around 18 months.

That extra six months could have been everything (which is why I’m so annoyed with myself).

But hey ho. Breeeeeeath out. Be calm. Wooosaaaaaaaa.

We went and saw a private craniologist who scanned Mikaere’s head and confirmed the presence a flat spot. A severe severe flat spot. You can tell just by looking, so this was no surprise.

So we got Mikaere measured up and now he has a fancy helmet. We were very very lucky to get it funded by The Boparan Charity (so very generous!!!) which we’re grateful for, because the cost of a helmet is almost two months rent.

He tolerates it quite well, which is handy because he wears it for approximately 23 hours a day.

We take it off for physio, swimming and bath time. That’s it. Mikaere even sleeps in it.

It’s not so bad, it’s slotted into the routine no problem. It’s been a wee while now and we’re already seeing gains.

Well, not ‘seeing’ because he’s got a full head of hair, but we go back every two weeks and the measurements are going in the right direction. It’s a millimetre by millimetre change, so we’re patient, but forever optimistic. As long as his fontanelle is open and the measurements are going the right way I’m happy.

Even better is that since we’ve started the helmet treatment Mikaere has started looking left as his ridge gets less severe. How good is that?!

So yes. I know so many people are on the fence with plagiocephaly helmets, but it’s been good for us. Stay tuned for a million more helmet selfies!