Plagio & Brachy support thread

[Gem & Leland]

i think you'll be pleasently suprised , we saw huge improvemt in the last week , and like i said , 3mm ! just cant beleive its going so quickly , i actually think i might miss his helmet a bit when its off !!!

 

[swan1]

Well done leland what a clever boy. I told you it would be worth it didnt i

Alisonx

 

[sarafet]

i can't believe the difference gem, you must be ecstatic

i'm concerned about aidens head at the back, it's really flat. doctors have said the usual, it'll get rounder etc, hv said more tummy time etc. he has no problems looking to either side and he doesn't seem to prefer any side in particular.

i've taken some photos for opinions, but he has a lot of hair so they aren't great. you can see it best in the last photo.

 

[daftscotslass]

Sarah here's Becky's. The picture doesn't show it too well but I'm quite chuffed with how much better her head has got with repositioning alone.

To update everyone else... we saw the paed on Wednesday (though the focus wasn't her head) and I asked if it was OK to talk to him about something else. He immediately said "her head". I mentioned my worries about her favouring one side but he examined her and said that torticollis wasn't a concern - she can move her head perfectly in both directions, he said it's normal for anyone to feel more comfortable on one side than the other. He brought up the subject of helmets and said that two patients of his have severe plagio and have both gone down to STARband in Leeds. In comparison to Rebecca, he said, they are at the opposite end of the scale. So I suppose that's some comfort but I'm paranoid it was just to shut me up about it!

Repositioning seems to have helped a lot so we're keeping going with it. Any time she is on her back during the day (rare as she's wanting to sit up most of the time, so it's usually when I nip to the toilet) and I'm around she has a cushion under her head. I'm undecided if I want to invest in a mattress topper for when she goes into her cot.

I still can't help but feel a bit fobbed off, like you said in your PM Sarah (if you don't mind me saying) I'm sure it's because it's a cosmetic rather than medical condition.

 

[Zodiac]

Fab news - Oliver has just had his 4 week check-up and stats are:

Plagio down from 25mm to 16mm.... hope to get to 8mm by end of treatment.
Brachy down from 97% to 93%.... hope to get down to 83% by end of treatment.

I'm stoked with the results this far

 

[Gem & Leland]

he was so bad , poor lil might ! you'll be so happy with 8 mm ! lelands already under that now and looks sooo normal ! he just needs the top to catch up with the bottom ! but your results are just blooming great! do you feel its made all the hardwork and doubt just flyaway !!!

 

[Zodiac]

Most definitely I knew he'd had a good improvement as could see a big change just visually, but a 9mm decrease was such fab news to hear!

Yeah - those sleepless nights while he was getting used to it & the grumpy first few weeks, and feeling crap about putting him through the discomfort will be soooo worth it in the end....

Especially as whilst at the centre we saw a boy of 1yr who had just started treatment & the poor little things whole face looked distorted the Plagio was so severe. His parents were saying how they wished they'd started treatment earlier, but kept being fobbed off by their consultant!!!

 

[Sage]

sarafet your lo's head is exactly the same shape as my sons! Hes 8 months nearly and it has improved so much from sitting up and being off his head BUT its still not gone, you can tell its a bit bigger one one side when his hair is wet. we're waiting for a specialist to see him for repositioning, they're taking ages

 

[Gem & Leland]

They taking the mick sage dont they realise time is of the essense !

Well im pleases to announce we have a provision day for graduation ! 10TH OCTOBER !!!!!
his now down to normal range , just needs to fill out a bit so keeping the helmet on to give the head a chance to do this , he'll always be flat on top but his much rounder , still a lil bulge on one side but i think u can only notice if you look down on him which you wont do when his all grown up !

his hair has grown LOADS too !!!!! His looking fab and i cant wait to have myhelmet free baby back , but ill miss it too !

 

[fothers]

That is a brilliant difference Gem

 

[Bagpuss17]

Just wanted to say what fantastic results you guys are getting from the helmet treatment.

Sarafet, it looks like your LO has brachycephaly. Have you been to any of the helmet companies for an assessment? My sisters LO has this too, it's much harder to correct with repo than plagio.

 

[Gem & Leland]

zodiac whens your next appoinment ?

leland had no change this week for first time ever , there's this annoying bit of his skull that wont pop out lol

 

[Zodiac]

Hi Folks,

We've just got back from a weeks holiday in Weymouth. It didn't rain once Yay!

It was quite funny as some of the time I was carrying Oliver around in a backpack, down on the beach one day a couple were coming the other way with a baby in one too, as they got past me I heard the guy say "That helmet looks like a good idea".... he obviously thought it was in case Oliver fell out of the backpack !

Our next check-up is Wed 1st Oct... I think there is some improvement again, but not as dramatic as the initial rounding out for the Plagio bit. I think the Brachy dimensions look better though.

Gem - with no improvement this week does that push back the date for the helmet coming off, or are you just playing it by ear now?

 

[Gem & Leland]

by ear , it was only a provisonal appointment anyway , as it has to be longer to take another scan and photos ' brian saw someone else today (( i was too ill to go first time ever) and he said the bit thats left is always the last bit to go , it just wont budge ! its stubborn lmao but his hair has grown so much its amazing too ! next and poss last appointment is in 3 weeks

i still shocked u only go monthly ! doesnt it get really tights ? lelands never not need adjustment , always the day before he goes he starts to get red patches , his took some off his cheek peice today ,is he trying to say my babys got chubby cheeks lol

 

[sarafet]

Sarafet, it looks like your LO has brachycephaly. Have you been to any of the helmet companies for an assessment? My sisters LO has this too, it's much harder to correct with repo than plagio.

Hi! Going for a helmet assessment is realy last resort for us as we'd have to go down south for it, there's no where in scotland we can go for the initial assessment.. We have started laying him on diff sides of his head etc when lying down and we also got him a bumbo to sit in rather than his bouncy chair, he is still really young so we'll take more action if there's no change in a couple of months. I spoke to my HV about it again the other day and she just huffed and said - 'is there ACTUALLY anything physically wrong with him??'

 

[swan1]

Sarafet, it looks like your LO has brachycephaly. Have you been to any of the helmet companies for an assessment? My sisters LO has this too, it's much harder to correct with repo than plagio.

Hi! Going for a helmet assessment is realy last resort for us as we'd have to go down south for it, there's no where in scotland we can go for the initial assessment.. We have started laying him on diff sides of his head etc when lying down and we also got him a bumbo to sit in rather than his bouncy chair, he is still really young so we'll take more action if there's no change in a couple of months. I spoke to my HV about it again the other day and she just huffed and said - 'is there ACTUALLY anything physically wrong with him??'

Starband do a clinic in Glasgow, when we went they didnt have a scanner but there was talk of that happening. Regardless of that Sandie who does the clinic in glasgow could measure his head manually intially and give you a rough idea of how bad the situation is. If you phone the leeds clinic and ask to speak to her i am sure you could go to glasgow initially

 

[Gem & Leland]

quick pic updated , how cool is this ? !

 

[purple13]

 

[Zodiac]

Ahhhh - bless him his head looks great

 

[Zodiac]

We've been for our 8week check-up today. Stats still improving well....

At Start of Treatment:
Plagio = 25mm
Brachy = 97%

4 week check-up:
Plagio = 16mm
Brachy = 93%

8 week check-up (Today):
Plagio = 12mm
Brachy = 91%