Plagio & Brachy support thread

[Gem & Leland]

has got worse his ears are now really out of alignment ( one in much further forward then the other ) his face is also changing so it looks like his got a bump on the left side front and a bump on the right side back

im so worried about it but its only cosmetic and i know there could be fair much more wrong considering he was prem etc im very lucy , his physio for his head movement / neck strength is going so well im just so worried about his head shape

she basically said she prob wont get it right and not to expect it to and we could look into having the helmet fitted maybe from 6 /8 months to give him a chance once his off his head for longer . im just worried about it getting so bad it will be beyong repair

not to mention the helmet isnt available on NHS and costs about 2k

am i badfor worrying so much about something thats purely cosmetic ? i just know how cruel kids are and want my babe to be perfect cos his soooo gorgeous


if u were me , would u look into trying to get the helmet fitted sooner ? so maybe he didnt have to wear it for so long ?

 

[mary70]

My own opinion is i wouldnt hun because i think alot of it will aline once he is up and about i ahve known a few little ones with plat heads kieron been one but once they start moving about they have all gone right but at the end of the day its your decision

 

[kazlin]

My own opinion is i wouldnt hun because i think alot of it will aline once he is up and about i ahve known a few little ones with plat heads kieron been one but once they start moving about they have all gone right but at the end of the day its your decision

I agree with Mary. I once knew a girl whose baby had this. As he got older it really didn't notice anymore!

Try not to worry too much hun

 

[LaineyG]

It's a difficult one Gem, on one hand, it could fix itself and no one would notice anything, on the other, it might not fix itself fully and by that time it would be too late for the helmet.

I've got pals who have had babies with this, and they all went for the helmet in the end (not saying you should, just personal experience!). We did fund raisers to get the money together and we always managed it.

Because I've seen it happen I've often wondered what I'd have done if Mhairi had developed it. The truth is I just don't know!



xxx

 

[samandbump]

hi gem
jack also has a flat head on one side, i have often thought about when he goes too school, nne of the health professionals have ever said anything about it too me though apart from it will get better in time, try too lie him on the other side of his head, im sure his is getting worse also, im wondering if i should take him too the docs, but he isnt ill so i dont know

 

[Gem & Leland]

the best time for the helmet to be fitted is 4-7 months so we have a lil while but not ages

its the fact that he doesnt just have a flat spot but his eyes and ears are also out , and because im hoping he will ride (ponies) in the future im worried about a hat fitting properly too .


sam , does he have stiffness in turning or anything ? this is whats caused leland in the first place and why his having physio because he wouldnt turn right .


lainey , could u maybe ask your friends what helmet they went for ? so far ive seen the LOC and starband , both same prices .

 

[LaineyG]

It was the starband Gem, they had to travel to Leeds (I think) for an initial fitting, and then there was a clinic ran in Glasgow to check their progress.

xxx

 

[DebbieM]

Aww Gem. I don't really have any advice for you either because it's not something that I know anything about. I only knew about it from your previous posts. I've seen kids with the helmets on but never really knew exactly what they were for.

I'm sure Leland will be fine. You need to just go with what you think it right. But OMG.... 2K for a helmet?

 

[Gem & Leland]

hoping i have a better day too , think ysterday i was really emotional about it all and it even kept me up till gone 2 am which was annoying as boy slept from 9 till 6

i think i might try and get in to see his consultant , she said she wanted to see him at 4 months but as usualy silly nhs ive seen no appointment come through

thanks for all your advice ladies , just scared it will be one of those things that people keep saying it will get better and by then it will be too late , 2k and a few months in a helmet whats that in comparrasion with a normal life later on ? as it does warn u about trouble having headgear fitted , like bike helmet / riding / hard hat even getting glasses to fit ( his ears are that far out noway would normal glasses fit at mo )

anyone got fund rasing ideas

 

[LaineyG]

We mainly did football cards and scrathcards - like these -

http://www.lakelandfundraising.co.uk/gold-21-20p-break-open-ticket-207-p.asp

Then one of the dads offered to have his legs waxed, so we did sponsorship and made a night of it at the local pub.

For one of my friends it was all done through the scratchcards and football cards. We got over £2000 and she used the extra to help her with travel costs to and from fittings.

xxx

 

[samandbump]

the best time for the helmet to be fitted is 4-7 months so we have a lil while but not ages

its the fact that he doesnt just have a flat spot but his eyes and ears are also out , and because im hoping he will ride (ponies) in the future im worried about a hat fitting properly too .


sam , does he have stiffness in turning or anything ? this is whats caused leland in the first place and why his having physio because he wouldnt turn right .


lainey , could u maybe ask your friends what helmet they went for ? so far ive seen the LOC and starband , both same prices .

no they checked his neck and it turns ok, but i notice he would rather turn his head too the side that is flat, im going too mention it too my hv next time i see her

 

[Gem & Leland]

i can give u some tips if u like from my physio , but there's no harm is telling the hv .

we have to pick leland up from the side and not support his head so he has to , rock him from side to side on my knee sitting up , carrying him outwards and tilted so he has to hold his head up , tummy time of cause , and when his asleep its horrid as i have to literally move his head over to the other side and it looks so cruel when i do it

 

[Gem & Leland]

We mainly did football cards and scrathcards - like these -

http://www.lakelandfundraising.co.uk/gold-21-20p-break-open-ticket-207-p.asp

Then one of the dads offered to have his legs waxed, so we did sponsorship and made a night of it at the local pub.

For one of my friends it was all done through the scratchcards and football cards. We got over £2000 and she used the extra to help her with travel costs to and from fittings.

xxx

ill look into those cards ! i did think about a raffle and try and get some people to offer prizes etc i can always get paint for someone lmao

 

[KJ]

If his head is really as bad as you say I would think that it won't correct itself fully when he's more mobile.

I have a friemd whose little boy had wquite a flat head. He started moving independently very early and I must admit, it's looking slightly better now.

I don't think the helmet is cruel. Expecially since they have it when they're so young. He'll just adapt and won't notice it after a while. I'd definitely look into it if Ashers head was out of shape.

People say it's purely cosmetic, but it's not really. Children can be really cruel and it could cause a lot of psycological problems later on.

I would worry that if I left it and it didn't correct, he might have to have operations later in life, which would be much more stressful than wearing a helmet for a few months when he's little.

It's completely your decision hun. Only you know how serious you think it is. If you are able to raise the money then the helmet is not going to hurt him. I guess it's just the financial aspect really.

Let us know how you get on.

K.xx

 

[Sage]

The back of kyrans head is totally flat. I was told is was just from him sleeping on his back and that when he can sit up it will go youve scared me now!!! whats this about a helmet?!?!

 

[Rosieroo]

The back of kyrans head is totally flat. I was told is was just from him sleeping on his back and that when he can sit up it will go youve scared me now!!! whats this about a helmet?!?!

It may improve but it wont go. The head doesn't just pop out, even when he's up and about he'll still be lying on it. The helmets you can get mould their head so they're rounder again.

G3M it sounds like your LO has torticollis, which DD had. She had stiffness on one side and would only sleep on one side of her head. This caused plagiocephaly, which is the flattening on one side of the head (at the back is called brachy something or other).
We didn't realise she had torticollis until we took her to a chiropracter (Ella would scream everytime she went near her) and when we took her to a clinic to see about getting a helmet fitted and they noticed she was quite limited with her neck movement. I'd been so caught up with noticing the flat head and misshapen face (you can see from the pic that one side of her face is bigger than the other) that I hadn't realised her neck was the cause and I felt awful!
We were referred to a paeditrician and Ella had an ultrasound and xray on her neck and then we started physio. This involved stretching her neck by placing one hand on her shoulder and the other on the top of her head and pushing her head over towards the other shoulder (if that makes sense). There were loads of exercises we had to do with her and had to reposition her at night religiously. It was really stressful and she hated the excercises and would scream and tense up, I hated hurting her.
She was about 6 months when we started with this so quite set in her ways with a lot of neck strength so I'd urge you to see someone and start the exercises ASAP, it's really important.

Although her plagio was quite bad I did notice an improvement after starting the exercises and when she was up and about but her head is still flat underneath all her hair. I'm lucky she's got lots of thick curly hair as nobody can see what it's like, however I have friends who have little boys who can't have their hair cut short because of the flatness.

Although it's not a nice thought having your LO wearing a helmet 23 hours a day it's for the good in the long term. There is a forum with parents that LOs wear helmets so they can give you lots of advice etc.

My only advice would be to not hang around and if you think it's something that needs sorting you need to be proactive and do it. Our HV missed the fact that Ella had torticollis and if we hadn't chosen to pay and take her to a chiropracter (£20 a session!) and up to Cardiff we wouldn't have known the underlying cause.

 

[Sage]

God im glad you brought this topic up then G3M. I was worried about it when ky was 2 months so told my HV and she made me feel stupid and just brushed it under the table saying "it will go when he's older dont worry" and that was it! Do you think i should seek further medical advice? Im really cross with her if it is going to stay like that, yes it might only be cosmetic but its not her baby that will come home from school crying from being bullied

 

[Gem & Leland]

if his it just the back of his head and its not distorting his face or ears i wouldnt panic yet hun but i would give him loads of time off his head , get him a bumbo / baby walker / sit him on your knee loads etc and if u worried there;s no harm in asking a docs advice , leland got diagnosed at only 8 weeks old and cos his prem his still under consultant and she sorted physio , his physio was more for his neck movement tho and there's not much she can do his head .


thank you kina for replying , your lucky to have a lil girl with lots of hair ! i dont think leland will ever have thick hair to cover this up , his still a baldy now ! he is having physio at the hospital and she is happy with his progress in moving his neck , his still doesnt choose to actually lay that side tho the li monkey

i really appreciate everyones reply , and i really think this will be a case of not seeing 'what if' i was bulled for normal things at school i cant imagine being bulled because of my head shape too


ill try and get some pics but his not happy at mo , just had his 3rd jabs so i dont think his in a photogenic mood

and kj thanks alot for your reply

 

[swan1]

My son Charlie wore a helmet to correct his flat head from the age of 6 months until he was a year, its the best thing i ever did, his head would never have corrected itself and he wasnt bothered by the helmet at all.

I couldnt bear the thought of him getting bullied at school because of his funny shaped head, and i dont regret a single minute of his treatment.

I was lucky, my parents paid for his helmet. If you have any questions pm me and i will happily have a chat with you.

It wont disappear once they sit up, despite the Nhs party line telling you it will. The helmet suppliers will give you a free consultation to see if your little needs one. I feel really strongly that people need to know this condition will not sort itself. My friends little boy is 5 and hishead is still totally flat accross the back.

Alisonx

 

[Gem & Leland]

thank you alison , i think were gonna look to getting in for a free consultation ,i really dont think i could let myself wait for a what if senserio

here's some pics , it doesnt really show it very well , its hard to get the angle right and his neck isnt tht strong yet so he wobbles a but in his bumbo bless him

i cant get a pic of how far out his ears are because his head bulges and covers up his ears


so u can see its not severe but because his prem the chances are he wont be as mobile as quick , so weve still go a while before he'll be sitting etc , he wont even roll yet altho he loves to stand up so im sure its gonna get worse , i think it has done so quick already even with repostioning since 8 weeks old .