Plagio & Brachy support thread

[Zodiac]

Wow - another 2mm's off thats great stuff. Will you always go every 2 weeks for a check-up? I thought the bumpf I got from Ossur said their check-ups were monthly.

I've got my first check-up tomorrow after a week of wearing it. I'm definately getting better at putting helmet on, but poor little Oliver is still not his normal happy self.

How long did it take for Leland to start getting properly used to it. I can deal with the daytimes ok... it's still not nice that he's not as perky as usual, but he's soooo upset through the night, poor little thing probably only gets a few hours uninterupted sleep. I'm pretty shattered too

 

[Gem & Leland]

yeh we go every 2 weeks with the locband , i think it prob took a good 2 weeks for him to be happy and he still doesnt think much of it going back on !

 

[abbiesmummy]

It is funny when they have the helmet off they look so different. Tom looks older! My friend was saying it must be hard when you can't cuddle them in and stroke their head.

I bought tea tree shampoo from tesco, just the cheap one and its great. I make sure it doesn't go into Tom's eyes though! Tom isn't a sensitive baby and is 11 months now, so I would be careful if your baby is younger, might be best to stick to johnsons. Tom does scratch his head once the band comes off so think thats normal.

We did a lot of fundraising and got all the money. I would contact your local paper, and tv station. We recieved lots of help from our article in the newspaper some very kind donations. We also recieved calls from businesses offering services. My brother did a chest wax and raised £80 sponsors, my brother in law did a cycle and raised nearly £200. I go to Slimming World and they all donated and I think they almost have £100. I worked for starbucks for a while and they are very supportive of raising money and they offered help although we didn't need it in the end. I would think of people or groups you attend and ask them for help, or your local leisure centre for free use of a hall for a party to raise money or football pitch to play a 5 a side match. Just some ideas!

Going to Leeds on Monday now hoping he will have improved and we won't have long to go. Can't wait now until its off I miss cuddling him properly!

 

[Gem & Leland]

i really miss the cuddles , its what ive found hardest

weve been in the local paper this week , but they put wrong email address but someone did call them and get my number , she's donated a £100 sending some more letters out tomorrow hopefully get some more raffle prizes as not everyone replied ( even to say no ) to my first lot ! i go to my local starbucks everyweek after babygroup , wonder if they'll give a prize !

id throw a party but ive not many mates near me ive even had an offer of a free disco to so might have to do one near mums home , will see !


was great to meet lil oliver today , leland did exactly what i thought and go straight for his helmet , glad seeing his results has given u hope , he looks so good straight on altho still proper wonky from above lmao

 

[abbiesmummy]

Gem your doing really well with fundraising. We started slow and then it seems to just flood in! Ask Starbucks if they can do some fundraising for you... they help a worldwide charity and they also help a local charity... which could be you!

Keep persevering with the treatment its so brilliant to see the results. It does seem like 5 minutes seems Tom started and yet its 4 months!

Does Leland have torticollos? (SP?) I notice in the pictures his head is to the right? I hope you don't mind me saying but Tom's head fell to the left all the time. Some days he would just be completely stiff to the left and we just couldn't get him to look straight. At the Leeds clinic they said torticollos can start the flat head syndrome. Tom is fine now and its amazing to see the difference from the photo's when he was little.

A forum which is great is http://www.plagiocephaly.org/board/index

also, here is us in the paper, you can really see how wide Tom's head is!!!
http://www.sunderlandecho.com/news/Pare ... 4005863.jp

Keep up the good work and the fundraising! Will post Tom's progress on Monday!!!!
Sarah x

 

[Zodiac]

Yeah, was good to meet you & Leland too. I can't believe how good his head looks already, I'm so impressed.

We had a better nights sleep last night - he was still a bit restless & did have a feed at 4am, but did manage to settle back to sleep with is dummy & mobile in his cot. So for the first night since being in the helmet, didn't end up in my bed with me. Result!

 

[Gem & Leland]

you lil boy looks so cute and cheeky tho louise ! his fab ! glad he slept better !


abbiesmum' did they make u look sad in them pics , they did us


and yes , he does have torticollis and has been having physio since 8 weeks old when it was first noticed i just didnt realise at all that he only looked one way , we had feeding trouble etc in the start and i concentrated on that i never took note of him always looking right !

 

[daftscotslass]

Tackled the GP about this today when I was in. Was totally useless. "I have a funny shaped head, it's just her natural head shape. We all have different shaped heads!". When I told him it had progressively become worse from about 6 weeks he was more interested and actually had a feel. I'm convinced it's torticollis. The repositioning has stopped her head getting any worse but she is still favouring the same side and now that she's holding her head up you can see that if she's tired, it always tilts to the "bad" side.

He told me he would refer me to paedeatrics at the hospital but I said I was going at the end of the month for something else anyway so he told me to bring it up with them then. Useless

 

[Zodiac]

Where are you taking her instead? to see one of the helmet specialists?

If you can get to see a paediatrician I'd go anyway - whilst they probably wont offer help re the head shape,if she does have torticullis, you could be referred for some physio.

Oliver has now been in his helmet for 2 weeks to assist with the shape of his head, but I'm still waiting for a physio appointment for the torticullis!

 

[Gem & Leland]

i cant believe your wating so long for physio ! leland was diagnosed at 8 weeks , physio at 10 !!!! he still favours one side too , you'll see it in pics of him , but with the amount of tummy time he has now i dont think it will matter once helmet is off !

btw with lelands torticollis , at 8 weeks you couldnt even force his head the other way , there was just no neck muscle there to do it


have u had your 2 week check up yet louise?

 

[daftscotslass]

I'm not going to see about the helmet yet - we'd have to travel to London or Leeds because the satellite clinic in Glasgow for starband is only for reviews and not initial assessments/scans. Going to keep going with the repositioning and we'll reassess what we're going to do once we've been to the hospital.

Was surprised (shocked in fact) about the number of people this is affecting - there were 3 babies at the HV clinic a few weeks ago, two of which had managed to get a referral to paediatrics (twins).

 

[Gem & Leland]

its because noone is aware of it , and tbh it sucks ! back to sleep compaign is brilliant of cause but people should be made aware of the side effects and how to prevent them , instead were just drummed into use to put babies on the back to sleep , and well if they dont like tummy time it doesnt matter ! BUT it does ! hugely ! leland only started liking his tummy at 5 months old for god sake !




sage how u and kyran doing ?

 

[daftscotslass]

What really pees me off is that NHS Scotland put together this leaflet here yet in my health authority they don't bother distributing it.

 

[Gem & Leland]

ive never seen a leaflet like that !!!!

but can i ask , how many babies are interested in playing at 2 months old ? especially if prem like leland it didnt matter if toys or lights where at the other side , he laid the side he wanted to and could and that was that !

 

[daftscotslass]

Definitely. Nothing could get Becky on her tummy until the last few weeks. No matter how much I tried on the floor, mats, comfy cushions, booster pillows, tummy time gyms, you name it, she would scream blue murder - HATED tummy time. It's only now she's starting to tolerate it and that's because most of the time I'm underneath her! I really do think that there are babies that just hate it - I know I'd be peed off if my neck didn't work yet and I had my face embedded in the floor!

I think what you said goes for most newborns. The fact is most babies DONT turn to face noises/patterns etc for some weeks after they're born so you have to be constantly repositioning. At the very least I think they should be making orthopaedic mattresses designed to prevent plagio and avoid the need for constant repositioning available on the NHS.

The helmet situation is doubly frustrating for us because every time we visit Timo's family in the Netherlands there are kids everywhere with helmets. We were at one of his friend's houses a couple of years ago and his son had a helmet - his head looked like there was nothing wrong with it after having it on a few months. Funnily enough though he had no concept whatsoever of hitting his head off things and was constantly crawling under tables, falling down and whacking his helmeted head on the floor without a care in the world

 

[abbiesmummy]

Hi Everyone!

Went to Leeds on Monday and Tom improved just slightly. He not severe now, the percentages are still the same although his head has grown in length so he is now 9mm plagio and 92% brachy. Was bit dissapointed when Steve said he can continue to wear the helmet until he grows out of it which will be another 4-5 months. Thought he might be finished soon, but it is worth it in the long term.

Gem & Leland - yes they did say we had to look sad, my hubby was really trying not to laugh and I think you can tell. Our friends thought we looked funny!!!

A woman came up to me whilst out shopping on Wednesday at the metro centre and she asked about Thomas Starband. She has twin daughters 4 months old and one of her girls has plagio and I think she also had bracychephaly, but its very interesting that her other daughter didn't suffer at all. Just think this puts my mind at rest that I may not have done anything wrong and that its perhaps a condition that some babies are prone to more than others.

I would also suggest taking photo's of the progress your lo makes, I take piccies of tom head when his hair is wet and from above so I get a good outline of his head shape.

 

[Zodiac]

Glad there's still improvement with Toms head. shame he's still got so long to wear it! BUT - in the long scheme of things it's not long really.

Gem - at Ossur, the check-ups are every 4 weeks, so next appointment isn't til 3 Sept. I think I can see a difference already though, lower down the back of his head seems a bit more rounded, although the higher section still looks pretty flat.

Oliver is sleeping a lot better now, still stirs through the night & needs his dummy & mobile, but loads better & not needing to pick him up to settle anymore. He's happier in the day as well now. Still have the odd screaming fit, but generally back to his old self. Phew!

 

[shadow]

well I am really concerned about LO now, OH has been mentioning it for weeks, and I just brushed it off saying he'll grow out of it, now I feel sick for not taking him more seriously. Going to make an app for Monday to see the GP, from the pics do u think its serious? Is there any way of measuring at home to get a rough guide?

 

[Gem & Leland]

hi shadow, tbh it does look quite bad ,not far from the shape leland was , and leland wasnt hurrendous but as i saw it he coulda been if id left it .

GP will do nothing , sorry but he wont , your best to see a helemt provider for a free consultation , they will measure him , you cant do it at home as they take the measyrement diagnoly and computer works out the rest .

does he have any issues with his neck ? or is just comfy to lay liek that , prob is once the head is flat they have to work harder to lay the other way becuase the bump gets in the way . another reason why the helmet is brilliant , cos they can lie the other way ( helping the neck) without having toi work hard at balancing on an uneven head!

 

[shadow]

hi shadow, tbh it does look quite bad ,not far from the shape leland was , and leland wasnt hurrendous but as i saw it he coulda been if id left it .

GP will do nothing , sorry but he wont , your best to see a helemt provider for a free consultation , they will measure him , you cant do it at home as they take the measyrement diagnoly and computer works out the rest .

does he have any issues with his neck ? or is just comfy to lay liek that , prob is once the head is flat they have to work harder to lay the other way becuase the bump gets in the way . another reason why the helmet is brilliant , cos they can lie the other way ( helping the neck) without having toi work hard at balancing on an uneven head!

I've not noticed any problams with his neck. He turns to the left more often as thats where I usually am; if he's in his bouncy chair I'll put him in it facing the TV as thats the way all the furniture points, and I'll often go out the kitchen which means he'll have to turn his head that way to see me. And in his cot/crib his mobile is on the left. Didn't even realise this could cause a problrm til I read about it online! I've just been looking at a bumbo seat. Are they any good?

At the moment he'll spend most of his time either in his crib on his back, or in his bouncy chair, both presssing against the back of his skull. He does have tummy time, but not that much as after a few minutes he starts to cry. And he spends time on my lap, but most of the day I'm trying to do things aroung the house, cooking, cleaning, washing, sorting the dogs, and I cant carry him around so he ends up in the bouncy chair. Will def have to start using my sling more.

Am really rather concerned now, I'm frighten OH is going to go mental as he's been banging on about it for weeks and I've done nothing. Its only because everyone has always told me it just sorts itself, now I know thats not the case.