Our Journey with Brachycephaly.

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missielibra said:
Hun, first of all, regardless of his head shape, he's a cutie pie, he's loved, he's healthy so - rounder head or not, the important things don't change.

Second, do not beat yourself up. This is not your fault. It already happens a lot especially with the sleeping on the back. The issue here is not you. I actually have this talk all the time with the physiotherapist and osteopathist... the doctors *always* say, it's gonna get better, it'll fix itself when they sit up. BUT that's not how it works. I've actually seen very few kids where it *corrects* itself on its own. Plagio doesn't because, if your kid had an issue of laying to one side, it doesn't magically go away when they sit up and then they'll still sleep 8+ hours on that side.

Brachy, same thing. By the time they sit up, they're 6-8 months. The bones are the most malleable before 4 months. By the time they sit up, the head doesn't grow as much as fast. So if they sleep on the back of their heads still... well! And some kids don't have a lot of growth spurs, and what if it happens in a bouts where they are more laying? I wish doctors would stop saying *it'll fix itself* and then parents feel guilty when it doesn't... Because hun, you love him, you care for him well, and you went above and beyond. So please, do not feel guilty.

Plus, we all have different head shapes! He doesn't look weird or funky. I see some kiddos with a head like WAY rounded and sticking out than my kids and yet they are NOWHERE near a yellow on brachy and newborn heads always stick out a little more ;) because nothing is fused.

SO PLEASE, no guilt! You're an awesome mama doing an awesome job!
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This made me fill up and I am so thankful for your reply it’s just what I needed to read !! He’s just got branchy. I wish the HV just told parents who are worried about these clinics it would cost them nothing to do this . It’s so annoying and quite a worry given it could affect a child’s life.

Prob just one of them days yesterday felt overwhelmed with a lot of things going on ! Your post has really helped so thank you so much. I will fore sure re read this when I am have one of those days !
 
missielibra said:
Hun, first of all, regardless of his head shape, he's a cutie pie, he's loved, he's healthy so - rounder head or not, the important things don't change.

Second, do not beat yourself up. This is not your fault. It already happens a lot especially with the sleeping on the back. The issue here is not you. I actually have this talk all the time with the physiotherapist and osteopathist... the doctors *always* say, it's gonna get better, it'll fix itself when they sit up. BUT that's not how it works. I've actually seen very few kids where it *corrects* itself on its own. Plagio doesn't because, if your kid had an issue of laying to one side, it doesn't magically go away when they sit up and then they'll still sleep 8+ hours on that side.

Brachy, same thing. By the time they sit up, they're 6-8 months. The bones are the most malleable before 4 months. By the time they sit up, the head doesn't grow as much as fast. So if they sleep on the back of their heads still... well! And some kids don't have a lot of growth spurs, and what if it happens in a bouts where they are more laying? I wish doctors would stop saying *it'll fix itself* and then parents feel guilty when it doesn't... Because hun, you love him, you care for him well, and you went above and beyond. So please, do not feel guilty.

Plus, we all have different head shapes! He doesn't look weird or funky. I see some kiddos with a head like WAY rounded and sticking out than my kids and yet they are NOWHERE near a yellow on brachy and newborn heads always stick out a little more ;) because nothing is fused.

SO PLEASE, no guilt! You're an awesome mama doing an awesome job!
Click to expand...

Absolutely hit the nail on the head <3

All my babies were probably strapped in a bit too much, I was always out and about and yet only 1 of them ended up with the condition, I think there's nothing we could have done, considering both of us knew nothing of these conditions until it was too late! But onwards and upwards now hun! Enzo graduated yesterday and your little man will be doing just that in a few short weeks! You should be proud of yourself! You've all done so so well<3
 
HLx said:
Absolutely hit the nail on the head <3

All my babies were probably strapped in a bit too much, I was always out and about and yet only 1 of them ended up with the condition, I think there's nothing we could have done, considering both of us knew nothing of these conditions until it was too late! But onwards and upwards now hun! Enzo graduated yesterday and your little man will be doing just that in a few short weeks! You should be proud of yourself! You've all done so so well<3
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Thanks lovely ! I think I was just down about a lot of things but your all totally right !

I’ve just seen your thread so happy for you all ! It’s amazing ! We will soon be joining you ! I am proud of us all ! I am so grateful for your help too .
 
Babybump87 said:
Thanks lovely ! I think I was just down about a lot of things but your all totally right !

I’ve just seen your thread so happy for you all ! It’s amazing ! We will soon be joining you ! I am proud of us all ! I am so grateful for your help too .
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You're most welcome hun! I don't think I helped that much though, you done the right thing all on your own <3 any idea when your little man will be helmet free? Xx
 
HLx said:
You're most welcome hun! I don't think I helped that much though, you done the right thing all on your own <3 any idea when your little man will be helmet free? Xx
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You pointed me in the right direction when others didn’t . Looking at around the 19th December in time for Christmas ! We have another appointment in 2 weeks so will know more then! X
 
So today getting my shopping and a lady said ohhh a helmet not seen one of those for ages he must have Plagio I said no . She then proceeded to tell me why I was wrong and in fact he does have Plagio. Yes I was wrong :rofl:. I then told her again , before any more words came out of her mouth , I just said oh excuse me and walked away I could not even be arsed hahaha !
 
Babybump87 said:
So today getting my shopping and a lady said ohhh a helmet not seen one of those for ages he must have Plagio I said no . She then proceeded to tell me why I was wrong and in fact he does have Plagio. Yes I was wrong :rofl:. I then told her again , before any more words came out of her mouth , I just said oh excuse me and walked away I could not even be arsed hahaha !
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Hahaha I love how uncorrect she was :haha: she was close, but not close enough, plagio is a completely different way of growth to brachy, I would have stood there and educated her until she got the picture :haha: x
 
HLx said:
Hahaha I love how uncorrect she was :haha: she was close, but not close enough, plagio is a completely different way of growth to brachy, I would have stood there and educated her until she got the picture :haha: x
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Hahah I know any other time I would give her a good education on it , but she annoyed me too much haha for my own sake and hers I had to walk away hahaha would have snapped at her otherwise ha
 
So we are back from our appointment . He’s changed from 92% to 91% . We have had to change some of the pads because it was too tight and leaving marks on his face .

She said she’s waiting for that growth spurt but we don’t know when it will come ! Hopefully soon!

We have another appointment in 6 weeks . If he’s made any changes then we will discuss carrying on . If not treatment might end. She’s happy to carry on treatment if there’s progress and said she’s had Baby/toddlers in helmet for a total on 9 months we are 5 months in .

So we will have to wait until our next appointment. I’m of the opinion if there’s changes still we carry on until he fully outgrows the helmet or he doesn’t progress .

But we will have to see ! I’m just happy it’s made a difference but really wanna be in that yellow zone ! We are 3/4% away from being there
 
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Hopefully the growth spurt will happen soon :)

That's great the helmet has made a difference :)
 
Oh Bev it’s made such a difference . I still cannot believe the HV and well the NHS overall don’t see it as an issue when there’s is a possible solution for our kids. .

I hope somewhere in the future they look at this policy and change it and more awareness is brought towards both plagio and branchy and where to seek treatment. . Totally ridiculous they don’t even mention these places where you could seek a free consultation ! Annoys me so much will only take 2 mins to inform parents of them ! Change a child’s life forever !
 
Amazing news! No matter how big or small the difference is its still progress! :)<3
 
Defiantly ! It’s a step closer to his head being a more “normal” shape .
 
Arghhh I am so annoyed with myself !

He’s been teething badly last few days and very unsettled add to that a cold and well we all know how that goes anyway ....

Roll on bedtime his face is bright red so I took his helmet off . give him his milk and laid him on his pillow . (He’s got a cleva mama memory foam pillow ). Next min I must have dropped off myself and woke up an hour later looked in his cot and he’s flat out asleep on his back with no helmet on . So annoyed with myself .

Even though I know it probably won’t make much of a difference because his bones are not that soft anymore right ? DH thinks I am being silly as usual.

Just wanted to vent my frustration at myself !
 
Don't beat yourself up hun. It's only a one off and not going to make a difference for one night. It's not easy when they're teething and have a cold too :hugs:
 
Aww hun it really won't make a difference itnwasnt for long! Enzo had many full nights without the helmet when he wasn't well or when it was hot, just think now his head won't get worse, only better, so by sleeping without the helmet isn't going to make his head worse xx
 
Thanks ladies !

I think it was just the shock at waking up groggy and seeing him without it ! I know an hour won’t make any difference like you say it’s not gonna make it worse anyway !!

I hope your enjoying lots of snuggle time with Enzo !!! Did he have a nice 1st Birthday ?!
 
Babybump87 said:
Thanks ladies !

I think it was just the shock at waking up groggy and seeing him without it ! I know an hour won’t make any difference like you say it’s not gonna make it worse anyway !!

I hope your enjoying lots of snuggle time with Enzo !!! Did he have a nice 1st Birthday ?!
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Yeah hun! Youre keeping it together so well! It is a strange time being in a helmet, I've found Enzos hair line is really weird after having the helmet, I think it must have rubbed a few of the hairs off at the back :haha:

Thank you hun! Yes he had a lovely day! Luckily our lockdown here in Wales ended on the 9th November, and his birthday was the 12th so we managed to have a nice family party for him which was lovely we never thought it would happen! X
 
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