AIBU to get a helmet fitted for my six month old

[WWYD00]

My beautiful baby boy has positional plagiocephaly. He is six months old. He is just coming to the end of the "perfect" age to get a helmet fitted. His flat spot has been assessed and it is Severe 1. So bad but not horrific.

Treatment is for six months roughly and he will need to wear a helmet for 22/23 hours a day for that period of time. It is a lot of work and a lot of money (£2.5k) but I have the finances to do this for him and the time to dedicate to it. He only has until he is 16 months to have it treated. It will not go away on it's own it will just be less noticeable with his hair and as his head gets bigger. His face shouldn't get any more deformed. It is marginally deformed now but without looking for it you probably wouldn't notice it.

As the back to sleep campaign is only from the 1990s it is hard to find adults with positional plagiocephaly but research seems to suggest whilst there is no brain growth issues there could be developmental issues. This concerns me as I worry he is a late developer anyway. I also worry about the mental aspect of looking different. I was bullied in school, I wouldn't say I am attractive and I would hate my little boy to be on the receiving end of this. Children and adults can be very cruel. Whilst I will get looks and questions about his helmet for six months I would hope my family will understand and most of my friends most likely will. Also during a pandemic who is he likely to see anyway there are no groups etc to go to so no one (strangers I mean) to question me.

So AIBU to get one? Would you/have you done the same. Or have you left it and regret it. To me the money and the timeframe is nothing to a lifetime of people being arseholes towards him.

@Idontbelieveit12 I will pm you.

@AnyFucker thank you anyway

Now, aged 6 there is no evidence at all as his hair is long enough to hide it. I probably wouldn't want him to have a shaved head as it still a lot flatter than it should be but as far as day to day goes, no one would know at all

My child who had the severe plagiocephaly as a baby had a genetic condition that made them lose their hair in childhood. It was very upsetting for them. Now, that's bad luck and not likely, but men losing their hair is extremely common in later life. You can't depend on hair to cover stuff. It's also a pain if you have glasses and uneven ears.

The NHS can't pay as there isn't a good evidence-base for the intervention, and it is primarily cosmetic. It's not really NHS territory and I wouldn't, on that evidence, expect them to stump up. It's a bit like braces for teeth, they don't pay for those except where there is severe need. The NHS do operate on very severe/cases which are not just cosmetic, obviously.

YANBU.

It is not a cosmetic issue. Such a shame people are banging on about hair covers it so it is fine. What if they go bald, what if they need glasses? People with no clue don't think about more than the aesthetics.

I always thought of it like braces. There are medical reasons for getting braces as well as cosmetic ones.

For what its worth my son's paediatrician told me my son's head was so bad he would never grow out of it. His physiotherapist was the one who recommended we get a helmet.

We didnt regret our choice and we found a company who's advice we trusted.

If you can afford it then do it. I would. It is a lot of money but I think you'll regret it if you dont.

Given that regular fit checkup appointments are needed, and you have said you can't get the appointments you need for physio etc, is there a danger that he will end up in an incorrectly sized helmet that could do harm?

@MinesAPintOfTea no they are different clinics. The specialist who fits the helmets are operating. The physios are not.

So the clinic will not also assist with physio etc? Literally just a place to fit helmets?

I'd be very wary of going down a route where you don't have comprehensive support. I know we are in a pandemic and the timing is just wrong for your DS, but when considering outcomes, they need to be for helmets alone, not helmets and physio etc.

@Lancrelady80 she sounds amazing, even though I'm usually sceptical too - whereabouts are you / is she based, can I ask?

We were in this position a few years ago. Fortunately, we were able to see a paediatric physio who didn’t recommend going down the helmet route as she was unconvinced that it had any proven benefits.

Now DC is a teenager, head shape is much, much better and you wouldn’t really know (it had been quite severe). Never had any issues over anyone commenting or even noticing.

Hi OP, @WWYD00
My son has sever brachycephaly (flattening across the whole back) we had him diagnosed on NHS but they won't treat it.
We sought a second opinion from an ortho who fits helmets, and she was so knowledgeable about the condition, why some babies get it etc and how to treat.
He was 8 months old and we decided to helmet him!

It's the best £2000 i have ever spent.
We saw changes from 10 days in the helmet. He is still in the helmet atm at 16 months, as his treatment is taking longer because 1, we left it until 8months to treat and 2, because his case is quite severe. We now have just 10mm to go and he will come out of the helmet.

Trust me when I say this...if you can afford the helmet then do it. Once his cranial sutures knit together and the soft spots harden on his head, there will be no going back or change of mind.

If you need any tips etc then Pm me and I'm happy to share my experience so far ❤️

Also...yes people ask us why he has a helmet and I just answer politely to fix the flattening. People are kind and I've never felt uncomfortable taking him out and about.

My worry was he would get bullied as his head was very flat, and very noticeable. Hence why for me it's the best thing I spent the money on.

My son is also behind on development, and our ortho explained all of this to us as it is connected! 2 weeks in the helmet and he sat unaided for the first time at 8 months!

If you have Facebook go on
Align clinic - plagiocephaly treatment
You will see for yourself the before and after pics, reviews etc

DS2 has a very flat back of head - at one stage we were referred to GOS as, combined with some other minor issues and being slow to talk, they wondered if he had a chromosomal disorder. He is 27 now and fine. The only problem it causes is getting a riding helmet to fit.

We're in Norfolk.

UPDATE!!!!!!!!

Sorry to resurrect this thread but I thought it might help other parents in the future if they come across this.

My DS is now 11 months old and has been wearing his helmet for four months. They have been tough going at times (heat wave and teething) but for the most part it has just fallen into the daily routine.

We got the best news today. His plagiocephaly has pretty much gone. The brachycephaly will hopefully be resolved by the new year.

Whilst I appreciate that not everyone would take the decision I did, I am so pleased that I went ahead. Once it is finished he will not remember this stage of his life and any impact it may have had on him except that his head will be considered 'normal'.

I can also recommend the work of an osteopath. The person we have seen has done incredible work for DS and whilst he doesn't like the treatment (it's not painful he just hates lying down) it has massively changed his range of movement in his neck and therefore helped the helmet work too.

Thank you everyone who took the time to reply in the first place and to one MNetter who also messaged me with additional information and support.

Thanks for coming back to update! I forgot I replied to this thread, under a different name, then saw my answers!

I also agree with you that getting a good range of movement, through physio or osteopathy is really key to tackling the cause as well as any helmet.

Oh wow, so very glad to hear such a good update!

It’s so helpful when posters come back and do an update. And that is a great update!
I’m so pleased your effort, money and his effort all paid off...

Can you try a pillow.. here’s the link...

www.amazon.co.uk/Plagiocephaly-Removable-Prevention-Syndrome-Anti-Suffocation/dp/B07287LFMS/ref=mp_s_a_1_4?dchild=1&keywords=flat+head+pillow&sprefix=flat+head+pillo&tag=mumsnetforu03-21&qid=1604604550&sr=8-4

Can use when napping supervised, in pram on jungle gym, play mats etc, not to sleep alone at night though. By 6 months mine were sleeping on tummy.

When their hair grows it’s less noticeable as well.

DS1 has a super flat head, and now looks ‘normal’ with D2 I went preventative and used that pillow all the time and didn’t happen.

Oh sorry, just read your update!!!

Glad it’s all worked out ☺️

I looked into this as DD had a very flat head. I could find NO proper evidence (as in randomised controlled trials) that the helmets have any effect. Normally when they “work” the kid would have grown out of it anyway.
(DD is now 15 months and her head is perfect.)

Wonderful news!

Yes!! If you can afford it then go for it - you will not regret it and your child will thank you for it.