Plagio & Brachy support thread

[purple13]

good luck oliver

xxx

 

[Zodiac]

Thanks Guys it's good to have this 'e' support

We did OK today. A few tears (from Oliver - not me!) about the 3rd time I put it on him & he had really sweaty hair everytime I took it off. The only place there was a red patch was on the left sideburn bit of the helmet, on his cheek really, but it did disapear within the hour he had the helmet off - which the consultant said was ok.

Here's a couple of pics:

 

[Gem & Leland]

your gonna see results so quickly i can tell !!! leland did rub , and even took some skin off on his forehead where he bulges but it wasnt sore and sudacream cleared it up in a day ! strip him down to just his nappy ( take 1 layer off he'd normaly be in) and leave all socks etc off ! ( gutted he has so many shoes lol ) will be easier tomorrow , 2 hours on 1 off but just give him plenty of water and keep him naked if need be !

dont suppose your going to birmgham meet ? would be fantastic to meet you and oliver

 

[Gem & Leland]

have edited title , mayvbe mods could sticky it so other mums can be made aware ? we;ll have to add kyran to the list when he gets his !!!

 

[Zodiac]

Well - Oliver did cry everytime he's had it put on today, but thats probably cos I was making a right hash of it so had to keep taking it off and re-adjusting bt hopefully I'll get better at it quickly.

That said once, he was in it he was ok, and didn't seem as sweaty when I took it off - so thats good.

Where do you find out about these meets then? I'll take a look at when it's happening.

 

[Gem & Leland]

viewtopic.php?f=51&t=69795&start=0

leland still cries if i make a hash up of putting it on , but looking at him otnight he looks so much better that i think if people saw his heade now they'd think nothing was wrong !

 

[Urchin]

I have NO IDEA how I missed this thread before, but after meeting him today I hunted for it and now I'm all caught up

Hey do you wanna add one of my fingerprint pendants to the raffle prizes?

 

[Gem & Leland]

urchin your a busy lady ! those 3 boys of yours are fab !!!! and one of your pendants would be loverly , thank you so much


is oliver in his helmet over night tonight ?

 

[Zodiac]

Hi there,

Yeah, tonight is first overnight. He's been in it for 2 x 4hr stretches today. I was better at putting helmet on & he didn't cry - but he was a bit upset at times during the day which made me feel bad

It's taken 45mins to settle him into his cot, whereas he's normally asleep within 10-15mins. Did Leland sleep thru the first night in helmet - or should I be expecting him to be a bit unsettled thru the night?

I've had a look at the meet details & it's the day after his 1 week check-up, so should be fine to make it. It'll be good to meet you & Leland.

I'm gonna go add my name to the list now

 

[Zodiac]

What a hideous night. I feel like a really crap mum.

Oliver was so unsettled all night, we probably only managed a few hours sleep in total & come 4am this morning I couldn't do it anymore & took his helmet off, so I knew he could get some sleep, he was sooo tired & miserable.

He would fall asleep on my shoulder, but the minute I laid him back in his cot he'd wake up & cry again - and it was quite a shrill cry, not like normal In the end I tried just laying him down beside me, in my bed & he did manage an hour before waking again. But I know this is not ideal as he's never slept in my bed with me before & I don't wanna get into this as a habit, but didn't know what else to try without resorting to taking off the helmet.... which I did inthe end anyway.

He's back in helmet this morning, but still not his happy normal self. He's just gone to sleep - he's probably still knackered - I know I am! I'll see if I can get a little snooze too otherwise not sure how I'll cope tonight.

Please tell me this will get better.

 

[Gem & Leland]

im sorry ive been out and not sen your post it really does get better , and he'll get to the stage where as he wont even know its on , or he'll play with the strap ! leland does now stroke his head on his hour off tho ! dont feel bad for taking it off , i still sometime give leland a lil bit of extra time off , for instance 15 mins ever morning so i can clean it and he can have a roll around without it . and i too in the first week or so took it off if he was major upset , if anything to stop him over heating .

can wait to meet you friday ( im really sorry i dont know u real name )

 

[Zodiac]

No worries My real name is Louise

We had a slightly better night last night, Oliver was still really unsettled, but still had his eyes closed when crying, so mostly I managed to slip in a dummy & set his mobile going and he settled back down again. He kept waking up once it stopped though (it stops after 15mins), so ended up taking a CD player in there & putting on a chillout CD for him to listen to which had 16tracks on it so lasted a lot longer, & gave us both a good 1.5hrs before he woke again.

He's been in it full time today & I haven't felt the need to resort to taking it off so I can see that maybe a week down the line from here both Oliver & I will be a lot happier with the whole situ.

Looking forward to a proper natter with you & Leland on Fri

 

[abbiesmummy]

Hi there! Hope you don't mind me joining in your conversation. I read a few posts when I noticed the thread and I am so pleased you have both gone for treatment! Tom had a Starband fitted 4 months ago. He has plagio 19mm and brachy 102. At his last appointment a month ago he was 9mm and 92!!! He has a beautiful head already!! Tom was really unwell yesterday and ended up in hospital last night but he is fine! But... the paediatrian was giving us a speech about the helmet and how its silly, she said his head looks fine (which is does NOW!) and just grow his hair a bit. Anyway, learnt to ignore those comments. We managed to raise all the money and more for traveling so if you want any advice regarding fundraising or helmets just ask!

Sarah

 

[abbiesmummy]

Few tips

when putting the helmet on & off don't be afraid to open it wide and this makes it easier

they stop sweating so much from their head and would suggest leaving a vest off

wash hair with tea tree shampoo and this helps with the smell (I got one from tesco)

wipe the helmet over with a smelly baby wipe after the alcohol solution and it smells cleaner and leave it to air dry outside if you can

KEEP GOING! the results are fantastic!!!

 

[Zodiac]

Hi Sarah,

Good to hear from you. And yay! for Toms head shape I'm so glad the helmet is getting such good results for him.

It makes me feel so much stronger, to hear from people like you and G3M whos LO's are a bit further along the treatment, to give me the encouragement to continue through this first difficult patch.

Thanks so much girls

 

[Gem & Leland]

Hi , thanks for jumping in !!!! your lil one sounded very severe and im so glad uve got massive improvement ! im glad i got leland fitted at under 5 months cos i think if we'd have waited another 2 or more he would have been even worse too

we got stopped by someone at whipsnade the other day , her babe had a starband too !!

louise , glad u getting more comfy with it ,he will too looking forward to the chat on fri , leland loves his helmet ( always reaches for it when im cleaning ) i wonder how he'll react to seeing oliver !!!

 

[abbiesmummy]

Your all doing so well with your bands! I was reading through the thread from the beginning until I ran out of time (2 kids!) and when you both expressed flat head problems I was thinking... get a band!! We struggled at the beginning because we just didn't know if it was the right thing to do and the health visitors/paeds all give you negative feedback on them but they are really excellent.

When we first heard about the starband/helmet I had never seen one but now I have seen a few babies around the area with one on. We were stopped at center parcs in the summer by a family who went through the treament last year and her son had a lovely head(!). We also met another family with a little boy from scotland and they had just started treament. Think its getting more common.

Tom loves his helmet now. He has had it off for 2 days because he was in hopsital with a temp and I am sure he missed it, especially for sleeping as he was up alot last night and just wouldn't settle. But, back to normal today and he is happy being able to bang his head and it not hurt . We were meant to go to Leeds yesterday for a check up but couldn't so will fill you in on his improvements when we do go.

 

[Gem & Leland]

can you reccommend a shampoo ? im using either johnsons with camolile or boots sensitive for excema at mo , but he seems to itch his head on his hour off , doesnt while its on tho but i wondered if there was a better shampoo to use ? is tea tree ok for lil ones ?


was it weird to have him with no helmet on , i think lelands look funny without it now but when its off i cant stop starring at the difference and then cuddling him to death !

 

[Gem & Leland]

and what was your fundraising tips lol

 

[Gem & Leland]

another 2 mm off

we saw a lil boy starting treatment today , 24mm out poor lil might , got my fingers crossed for him it works !