Plagio & Brachy support thread

[Gem & Leland]

thanks everyone , be prepared for picture overdose , gonna get as many as i can pre helmet

 

[chellieboo]

oh wow debs , thank you hun , i need to post your booties too but i thought id keep em here till u get that bfp ?

thanks honey, keep a hold of them for now

 

[Rosieroo]

You've made the right decision hon, good luck with it all.

 

[Babylicious]

Bless him he's a little star G3M you must be so proud

 

[lauramumof2]

The time he has to wear it will fly in and by the time he is going to nursery and stuff it will be corrected and he wont even remember wearing it.

There is no doubt in my mind that you have done the right thing, that scan pic showed how out of alignment the skull plates are.

 

[littleem]

AW he is adorable, i do think you've made the right decision, it has made me start to question our daughters head shape, i think hers is slightly flat do you think these pillows will work anyone??

http://www.urbanshops.co.uk/babypillows.asp

 

[Bagpuss17]

Not heard of those pillows before, they're a good price so worth trying.

We used the goi goi pillows with our son as he had plagio but they're quite pricey by comparison.

 

[Gem & Leland]

i think the only reccomended one ive seen is the goi goi . My god ive just seen the price of those , thats a really good price if there any good !

if your worried , look up repostioning and you'll get some tips on what to do ,m earlier the better .

 

[littleem]

But i thought babies werent allowed pillows, the goi goi pillows are like proper pillows arent they ??

 

[Zodiac]

Hi G3M,

Glad to hear you are going ahead with the helmet - sounds like the best decision was made for you and little Leland. Like you, I can't bear the thought of Oliver growing up with a wonky head & possibly being bullied for it, and me not having done anything about it when I could.

It's still 2 weeks til Olivers appointment with the Paediatrian - but in all honesty I think if he doesn't suggest the helmet is needed I think I'll be booking us an appointment regardless as Olivers head looks just like the Plagio digaram on the LOC website.

http://www.londonorthotics.co.uk/plagio ... ional.html

I'm already resigned to the fact that he'll need one

Will post back on here once we've seen the Dr on 4 July.

 

[Bagpuss17]

We only used the goi goi pillows whilst he was in the pram or moses basket during the day whilst we were around to keep a close eye on him. Not during the night when he was sleeping. Also for nappy changes so he had something soft to put his head on.

Others on the plagio forum used to put them under the sheet in the cot.

Babies can use pillows from 1 years +

Zodiac - good luck with your appointment with the paed, however, I think its very unlikely that he/she will recommend a helmet. The NHSs stance is that it is cosmetic and will correct itself. Sorry don't mean to sound negative.

 

[fothers]

Just saaw this- good luck Gem, hope the helmet sorts things out quick for him. You've done the right thing, just awful you need to pay for it yourself

 

[clarey]

Aaaw bless lil Leland what a sweetie, and he looks so big!! He has done so well after such an early appearance, he's gorgeous

Good luck with the helmet, it all sounds very positive that it will do the trick, you are absolutely doing the right thing,

 

[Gem & Leland]

Hi G3M,

Glad to hear you are going ahead with the helmet - sounds like the best decision was made for you and little Leland. Like you, I can't bear the thought of Oliver growing up with a wonky head & possibly being bullied for it, and me not having done anything about it when I could.

It's still 2 weeks til Olivers appointment with the Paediatrian - but in all honesty I think if he doesn't suggest the helmet is needed I think I'll be booking us an appointment regardless as Olivers head looks just like the Plagio digaram on the LOC website.

http://www.londonorthotics.co.uk/plagio ... ional.html

I'm already resigned to the fact that he'll need one

Will post back on here once we've seen the Dr on 4 July.

IT loc who were going with , they were great and very honest and not pushing , just explaning that i should have seen a difference with reposition within 4 weeks but of cause were 11 weeks down the road now and nothing but it getting worse , i dread to think if we left it another 4 months !

i feel like ive started a trend hehe , just shows that there is no awarenness at all about this , especially us zodiac we should have been warned with prems that the condition is likely .


I hope i can continueing raising awareness of this cruel condition.

dont hold hop at docs , id book your free consultation with LOC anyway , they will tell u if they think u should leave it longer or start straight away , it also depends on your babies neck strength , they wont do it till they have good head control xx

 

[Gem & Leland]

Aaaw bless lil Leland what a sweetie, and he looks so big!! He has done so well after such an early appearance, he's gorgeous

Good luck with the helmet, it all sounds very positive that it will do the trick, you are absolutely doing the right thing,

he is big lol 16lb and 26 inches !!


thanks for all your kind comments on my gorg lil man !

 

[Gem & Leland]

rah at doctors , she's usually so nice ! gone today to sort out meds for excema and reflux and asked about how we go about appealing with the PCT , well , i dont think she got the point that were going ahead with the helmet , she said he doesnt look to bad and she'd leave it and that we should see how ped and how nhs and alot of ped donts agree with the band and complications ???? ive researched and researched and not herd of complications ( side effects like sores / smelly etc not complications)

im so angry , well more upset , i really thought she'd be on our side

and we all know leland looks pretty dam good from the front , but it doesnt stop that fact there's a 13 mm difference ! and his ears are all squiffy does it !

 

[beanie]

rah at doctors , she's usually so nice ! gone today to sort out meds for excema and reflux and asked about how we go about appealing with the PCT , well , i dont think she got the point that were going ahead with the helmet , she said he doesnt look to bad and she'd leave it and that we should see how ped and how nhs and alot of ped donts agree with the band and complications ???? ive researched and researched and not herd of complications ( side effects like sores / smelly etc not complications)

im so angry , well more upset , i really thought she'd be on our side

and we all know leland looks pretty dam good from the front , but it doesnt stop that fact there's a 13 mm difference ! and his ears are all squiffy does it !

Its not her child who has to grow up with it, and to dismiss it as cosmetic is wrong. So many "cosmetic" problems can cause all sorts of emotional distress, such as sticking out ears, different shaped boobs etc. My OH has scars on his face from surgery to remove three brain tumours and he had surgery to put an cheek implant under his eye, that was cosmetic but without it he would have lost self confidence. It's only for a short period of his life but will benefit him in the long run.

Just wantedto say though, how bloody adorable is he in his laser hat, he should be an ad for the company.

 

[Gem & Leland]

thanks ! i hope that pic pulls some heart strings , im sending it on the poster type letter im sending out for raffle prizes

 

[Zodiac]

Yeah - must admit I've got a few Q's for the Peadiatrician when I see them about how it can be termed "cosmetic".

My q's will be....

What about any psychological damage if he's bullied when older becuase it hasn't corrected itself?

Spectatcles won't fit if needed - cos his ears aren't symetrical, one arm will be way too long. What happens?

Will safety helmets (cycle hemlenst for instance) provide him with the correct amount of cushioning/protection, given that his head won't fit snuggly into them if still mis-shaped?

 

[Gem & Leland]

leland will ahve his helmet before we see our ped ! im actually scared how she will react and might even take it off before we go in