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Gem & Leland
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Plagio & Brachy support thread

Jun 4th, 2008, 21:23 PM   #1
 
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 ?
 
 
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mary70
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Jun 4th, 2008, 21:35 PM   #2
 
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
 
 
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kazlin
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Jun 4th, 2008, 22:04 PM   #3
 
Quote:
Originally Posted by 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
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
 
 
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LaineyG
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Jun 4th, 2008, 22:17 PM   #4
 
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
 
 
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samandbump
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Jun 4th, 2008, 22:33 PM   #5
 
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
 
 
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Gem & Leland
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Jun 4th, 2008, 22:52 PM   #6
 
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 .
 
 
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LaineyG
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Jun 5th, 2008, 08:11 AM   #7
 
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
 
 
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DebbieM
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Jun 5th, 2008, 09:00 AM   #8
 
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?

 
 
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Gem & Leland
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Jun 5th, 2008, 09:11 AM   #9
 
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
 
 
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LaineyG
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Jun 5th, 2008, 09:29 AM   #10
 
We mainly did football cards and scrathcards - like these -

http://www.lakelandfundraising.co.uk...cket-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
 
 
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samandbump
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Jun 5th, 2008, 09:37 AM   #11
 
Quote:
Originally Posted by G3M
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
 
 
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Gem & Leland
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Jun 5th, 2008, 09:42 AM   #12
 
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
 
 
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Gem & Leland
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Jun 5th, 2008, 09:44 AM   #13
 
Quote:
Originally Posted by LaineyG
We mainly did football cards and scrathcards - like these -

http://www.lakelandfundraising.co.uk...cket-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
 
 
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KJ
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Jun 5th, 2008, 11:02 AM   #14
 
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
 
 
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Sage
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Jun 5th, 2008, 11:05 AM   #15
 
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?!?!
 
 
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