Our journey with Brachycephaly & Plagiocephaly- Treatment completed 20/10/20

[HLx]

Im using this thread now as a journal on our little journey for a nice round head! Plagiocephaly was suspected, then we had diagnosis along with brachycephaly from the NHS consultant, but just over the phone. We will be going ahead with private treatment for Enzo as it will be much quicker and treatment is more effective sooner rather than later.

I'm going to pop a little diary here for future reference.

Starting measurement - 19mm & 101%






practically since birth my son has had a misshapen head, flat on the back left, the forehead bulges ever so slightly looking at it from birds eye view and you can clearly see the odd shape and he also has two completely different ears! My HV has an inkling that he will need one of them special helmets to wear, and to get a doctors appointment to start the treatment process (this was a month ago) and obviously haven't yet gone to the doctors due to the virus.

So I just wanted advice off anyone that has been through this and also anyone who's babies has used a helmet.

You can see the odd ears from the picture however the mishapeness isn't obvious looking directly at the face, its mainly from the sides or birds eye view ill update another picture when he wakes from his nap

 

[HLx]

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[Bella1185]

He looks beautiful! To be honest - all of my friends babies’ have helmets! I thought DS might need one so took him in and he didn’t.....shaped right up on its own!

Either way your little guy will be FINE!!! Kids do great with helmets!

it’s like the teeth braces of 2020 - a lot of kids get them now just to ensure they have a perfect smile even if teeth are fine to begin with! Same with helmets! A lot of kids get helmets just to ensure a perfectly round head! Aesthetics—not always necessary

 

[HLx]

Ahh thanks for that hun, its definatly very caved in at the back, from the front he looks fine but from the back and birds eye view you can see it and its really bad, i feel so sorry for him when I see it, i think he would benefit from a helmet, even if his head isn't perfectly round at the end of it id still like an improvement to what it is now

 

[Babybump87]

I was coming on to post a simiair thread

I’m worried about my DSs head . It looks normal from the front and nowhere bulges out at the forehead or sides . Just the back is very flat , has been like your DS since birth and you have to look at my DS from the same view you describe to see it ! I did speak to a HV who felt his head and measured it a few weeks back and said it looked and felt fine . but it still looks the same . He’s started crawling lately .

Not much we can do Hlx with this virus going on but I am going to seek advice from my GP soon as I can just to get their opinion . I didn’t notice my girls having such flat heads?

Your DS is very cute too !

 

[HLx]

I was coming on to post a simiair thread

I’m worried about my DSs head . It looks normal from the front and nowhere bulges out at the forehead or sides . Just the back is very flat , has been like your DS since birth and you have to look at my DS from the same view you describe to see it ! I did speak to a HV who felt his head and measured it a few weeks back and said it looked and felt fine . but it still looks the same . He’s started crawling lately .

Not much we can do Hlx with this virus going on but I am going to seek advice from my GP soon as I can just to get their opinion . I didn’t notice my girls having such flat heads?

Your DS is very cute too !

Hi hun, I ended up speaking to the GP who asked for photographs of Enzos head, he then forwarded them to a paediatric consultant who got back to me in 4 days!

He definstly has it, even though it looks quite bad to me, he said it looked like a mild case and gave me a big information leaflet on ways to correct it at home. Fingers crossed

 

[Babybump87]

Aww fab ! Glad you managed to get something sorted for him . I always think things look bad to us mums ! Must be re assuring if he thinks it’s a mild case . It’s weird because in most pics my DSs head looks normal. His eyes , ears etc are all in the right place . Then when it’s wet you can see how flat looking it is !

I might email my GP some pics and get their opinion . I will go mental if they say there’s a issue and the HV said all was ok and it’s wasted time !

Do you mind sharing the leaflet ? Or the main do’s please lovely ?

DS sleeps with a pillow under his sheet anyway due to reflux so I’m hoping that would have helped somehow but no idea !

 

[Bevziibubble]

That's great that there are ways to correct it at home. Fingers crossed it helps

 

[HLx]

Aww fab ! Glad you managed to get something sorted for him . I always think things look bad to us mums ! Must be re assuring if he thinks it’s a mild case . It’s weird because in most pics my DSs head looks normal. His eyes , ears etc are all in the right place . Then when it’s wet you can see how flat looking it is !

I might email my GP some pics and get their opinion . I will go mental if they say there’s a issue and the HV said all was ok and it’s wasted time !

Do you mind sharing the leaflet ? Or the main do’s please lovely ?

DS sleeps with a pillow under his sheet anyway due to reflux so I’m hoping that would have helped somehow but no idea !

Hi hun if your child's head is just flat at the back, it shouldn't be an issue and it will pop back out by the time they are two, my first son had a really flat head and its not noticeable at all and hes almost 6 now but you may want to take a look at the picture I've just uploaded at the 3rd one.

Enzos is hard to explain I keep forgetting to upload a picture of it, but his is the second picture, but a bit more bulgy on the one side.

I'll upload a picture of the leaflet in the morning, as it's upstairs and dont want to wake Enzo

Basically what's said on the leaflet is to just make sure they lie on the sticky out side of the head more than the flat side, this should push the skull flatter on the bulging side, and with feeding make sure you swap sides often, and to keep lying down to a minimum, so sat in a high backed chair like a highchair, or jumparoo that sort of thing, basically to keep as much pressure off the flat side and put as much pressure onto the side that sticks out

 

[missielibra]

Hey hun
My son had a torticolli, wry neck when he was born so he ended up with a 14mm difference between both sides at 2months. (Which is helmet territory). I saw a physio and only did at home stuff and within a month the difference was 4mm (norm is 2mm and under since a perfect head shape is rare) and two weeks later again the difference was 1mm.

A big thing that helped since by 2months he was sleeping 12hours straight at night was the tortle hat (recommended to me by the physiotherapist). Up to you how you feel with him sleeping with a hat. Worst case you can use it only for the naps when you're awake. We also did tummy time, sitting and naps with a pillow on the side so hed sleep completely on the side. Good luck hun!

 

[Babybump87]

Aww thanks hin for the info and reassurance that’s actually the page I was looking at last night !

It’s just the back of his head yeah . I know they get it anyway with lying down but I thought it would have started to round off now . DSs does look like the third one , it’s flat at the top and back . But his forehead is round and not flat. I also can only feel is soft spot very slightly , can you feel your child’s ? . He fits some of the criteria but not others ! So maybe he’s just got it slightly or maybe he’s just got a normal baby head I dunno . I will try upload a pic of the back of his head.

I know boys have different head shapes /sizes anyway so he’s my first boy too and my girls had loads of curly hair so we didn’t notice their flat heads after 6 months !

 

[Babybump87]

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[HLx]

Just an update on the plagiocephaly, the HV, doctor and the consultant have all agreed that Enzo has it, however its a mild case, there's no facial deformity the problem mainly lies at the back of the skull with should be able to rectify itself by doing all the things suggested on the letter, there will be no need for a helmet either. His two different shape/sized ears are nothing to do with plagiocephaly, so I guess thats just a cute little trait of his

I have to go to see my HV every month for skull measurements, I was a bit skeptical in going due to the virus, but she said it was completely up to me and she would be wearing full PPE while seeing Enzo and it will only be us in the room together, so that put my mind at ease.

 

[Babybump87]

Aww that’s amazing news! So happy for you all ! Such a relief !
I hope this eases any worries / anxiety you have Hlx !

 

[Bevziibubble]

That's great news

 

[HLx]

I think he will always have a mishapen skull, but as his hair grows thicker which it will, it should be not as noticable, its not affecting his development in any way

 

[Babybump87]

If he’s on track with his development that’s a great sign !

Hope it does improve over time . I read their skull doesn’t fully fuse together until around 18 months/ 2 years old . I thought that was pretty amazing as I thought it was much much sooner !

 

[HLx]

I wanted to re-update this thread as I've had a bit more news having speaking to a private consultant via facetime. Enzo does indeed have plagiocephaly which we already know, however after speaking to the specialist, and showing her Enzos head from all angles, she said he has plagiocephaly and brachycephaly which is actually more common to have the two together than just the one, but it doesn't mean its twice as bad, he is a child that would 100% need a helmet, but as the NHS won't see him at the moment due to covid19, there's a chance I'll have to pay private for one to get it sooner which is £1950 absolutly crazy money, but worth it.

Heres some more photos

One from birds eye view and one from the front, the right side of his head is wider than the other side which is the brachycephaly and the back has obvious plagiocephaly. Unsure of the route we will be needing to take as treatment is better sooner than later

 

[Babybump87]

Ahh hun I’m glad you’ve managed to see someone about it despite covid !

Oh gosh yeah that’s expensive but totally worth it for him and yourself . Did she say how long it would take to improve with a helmet and how you would go about it given covid ?

He’s absolutely adorable tho that smile !!

 

[HLx]

I know hun she went through all the safety procedures she takes during the virus and im 100% comfortable in going to see her, hopefully next week once she gets back to me with an appointment. She didn't say obviously when we get to see her face to face she will do all the measurements and scans and everything. It depends on the severity how long it will take, but im sure i read treatment is 6-20 something weeks (I think) and he needs to wear is for 23 hours a day, which is going to be a struggle and a bard few months, as he doesnt even like a hat on! Its also a 100% success rate but treatment can't be done after 18 months, so im going to get it sorted this year.
£1950 is expensive but thats the helmet, all scans, 6 weekly check ups and measurements and follow up appointments after its completed. I'm quite excited as I do want his head to be a better shape, not for me but for him, I wouldn't want him being bullied for it as it is very noticable, my poor little rugby ball head

He is a darling hun he melts my heart, such a happy funny little man, I wouldn't want him to lose them traits because he's so self conscious, I would pay £10,000 for him or any of the kids if that's what it takes