Plagio & Brachy support thread

[Gem & Leland]

he slept from 8 till 8 with a feed at 11 so good i recon lol tbh the only thing he struggles with is , rolling as once his on his front he gets stuck , but he would prob get stuck without helmet ! and it is harder to cuddle him just cos it gets in the way a bit and digs into your arms / chest lol but sure soon enough it wont nbother either of us !

had one comment today , oh the helmets a good idea , saves him banging his head i was like actually his got a deformed skull and the helmet is correcting it he honestly thought id put it on to stop him banging his

 

[purple13]

aw i'm glad he's doing ok in it - they're great results hopefully it'll be off before you know it!!

lol at that bloke's comment

 

[Sage]

lol i would of loved to of seen his face after you said that!

 

[Bagpuss17]

Brilliant results already

My son graduated at 86%, so your little one is going to graduate with fab results.

Expect a few more comments regarding wearing a helmet for head banging, it's not unheard of for little ones to have helmets for that reason but usually toddlers rather than babies.

The upside is, if people do ask, you're raising awareness of plagio

 

[Gem & Leland]

he was only ever mild brachy anyway , its really for the plagio and his head hasnt rounded out at 86% his got like this lump lol so the rest needs to catch up !

well today in asda a women come up to me ( grandma age) and asked why he had the helmet / how old ect , turns out her grandson has the same ( inc torticollis) but nhs have said nothing just it will right itself , his only 3 months tho but she asked for all lelands details of where i went and how etc

she was the first person to actually ask ! get got loads of people talking to him ( he was laying in one of them trolley things) and lots more attention then usual but i think noone had the guts to ask what it was for ! OH apart fromt he checkout guy ! who asked if it was for protection lol so yeh i can see a pattern arrising , lots of people are gonna think im an ecentric mum protecting her child

 

[daftscotslass]

Leland really suits his wee helmet, Gem! Sounds like he's doing so well.

Over the last few weeks we've noticed more and more a slight flatness to Becky's head off to one side (plagio). She's generally propped up when awake when not up and at ém with me (which is most of the time) and/or repositioned and repositioned when she's asleep. She detests tummy time but we're persevering with it. One HV wasn't interested when I mentioned it, saying it's only cosmetic. Another suggested Yorkhill hospital are doing some sort of study but I can't find anything out about it. I mentioned her preference for going off to one side but the HV wasn't bothered. She has her next jabs next week so I'm going to push for more help (physio maybe?) then. What to do, what to do.

It's been thrown to the forefront of my mind because we're at OH's parents in Holland just now (I'm having a wee break from everyone, lol). We've been round department stores here and saw one child with a helmet and today we were in a few baby shops and I saw two different kids with them! SIL says their health insurance over here covers it.

 

[Gem & Leland]

deffo push for physio , it can only help with the repostioning , lelands changed his sleeping postion all together now , wont go on his back , sleeps on his side like his mummy im getting much more use to the stares now , still miss the close cuddle tho as it does get in the way and hurts when he head buts u lol ) , routine has to be spot on too ! in an hour, he has to have his solids , clean the hat , bath him , dry him and hat back on ! it means his having his bath after solids tho ( cos he gets in such a mess eating he needs hat off for that and needs a bath before hat goes on ! ) hope thats ok !

 

[Gem & Leland]

we have the local paper coming on weds to take pictures for a story !!!

 

[Zodiac]

Well, Oliver saw the people at Ossur, Cardiff today and we are signed up for a STARband helmet.

They were so professional & nice, I felt much more confident with the info they gave us rather than our paediatrician. The measurements they took showed a 18mm difference between his Oblique diagonal readings which was the top end of the moderate plagio scales.

He said that as Oliver was 6 weeks preme this is good news in terms of treatment & he will be in the helmet probably between 3-5months.

Got our fitting in 2 weeks time - we went for the dark sky style

 

[Gem & Leland]

same as us 3-5 months

i thought 17mm was severe , its worse then leland but leland has brachy too so his head was more deformed all round then just a flat spot ! but , you'll be pleased to know , my friends lil boy has gone from 17mm to 14mm in just 2 weeks

did u get a pic of him in his laser hat ?

im hoping i can raise enough money to help you an sage too

 

[Zodiac]

im hoping i can raise enough money to help you an sage too

Bless You

Forgot to take my camera so didnt get a pic of him in his laser hat, he looked like a cute little pixie tho

How's Leland, when have you got you next progress checkup? Are you both getting used to getting the helmet on & off now?

I saw a little boy with one on as I was leaving, he'd been wearing his for 6 weeks & his mum said his head shape was noticably improved too. Sounds like everyone you talk to recommends it.... why the hell doesn't the NHS DO something. Grrrrrr

 

[Gem & Leland]

getting much more use to it , not sure how ill get it on and off without the bumbo lol and his started to get stuck in it lol

hopefully going with the girl running the petition down to downing street in sept !!

 

[Gem & Leland]

we have progress 2mm off , but it needs to round out / smooth out as it grows eneven from bottom up so still flat at top .

 

[Zodiac]

Well done Leland

How long is that in the helmet full time?

Is Leland OK with it on now? Are you finding it easier getting it on and off? Has he suffered with any soreness at all?

How many mm's are they looking to correct the shape by in total?

 

[Gem & Leland]

thats 2 weeks in helmet full time ! i think you keep going till your happy , ive herd of people getting down to 2/3 mm !!!! he had soreness in first week , its rubbed skin away like a shoe would rub your heal but it cleared up in a day , sometimes get a bit of red but had nothing like that for the last week , and if it does it goes away within his hour off , it smells tho ! of stinky cheese but they put the helmet in ozone treatment yesterday , its something there trialng to help combat the bacteria and smell !!! it still hard to get on but only cos leland is being naughty at moment and arching his back and flipping backwards so thats what makes it difficult . im still missing close cuddles , get as many as i can in hour off , along with feeding and bathing that is !!!

when does your lil one get his , cant be long now ????

 

[swan1]

Well done Leland you are such a clever boy doing all that growing. Before long your head will be lovely and round. I really cant believe a year on and we dont even notice Charlie's head shape its so perfect. It is soooo worth all the hassle and smelly head smells!!

 

[Zodiac]

It's Wednesday that we go and get Olivers helmet fitted.

On Lelands day of fitting, how much was he in the helmet for? It'll be a 1.5 hr journey home in the car, so just wondering if he'll be wearing it home or not.

Did you have to wake Leland in the night to get helmet on and off the first few days or did he sleep with it off or on the entire night?

Has his temerature been ok with these few hot days?

 

[Gem & Leland]

u wont wear it the first day so dont worry about travel , u can play at night taking it on and off but the routine (day 1) starts the next day ! the first 2 nights they dont wear them at night . first day was 1 hr on 1 hr off ( nightmere lol ) and no napping in it ! 2d day was 2 hrs on 1 hr off , 3rd day was 4 hrs on 1 hr off and overnight ! then it went to 8 hours on 1 hr off and over night , then full time !!

its ment to be only hour off a day , but i do hr n half , mainly cos im weaning and i like cleaning it twice a day ! so he has 15 to 30 mins in morning , for brekkie and a clean up , then at night he has an hour where i have to give him his tea and then bath him ( i know u shouldnt bath after feeding but theres not much i can do about that ! he needs bathing after his dinner cos his sooo messy ! )

his barely got anything on , u might aswell bin vests and any nice outfits lol he lives in rompers most of time , altho today he has tshirt and shorts as his out in car seat if he gets hot tshirt can come off ! its soo sweaty underneth tho i thinkit itches abit , or he likes playing with his hair when it comes off lol

he had a treat yesterday , extra 20 mins off , we went in the paddling pool

 

[Zodiac]

Well, Oliver now has his brand spanking new STARband waiting to put on tomorrow morning. I had a go at putting it on him whilst at the clinic and seemed ok, will have to see how it goes tomorrow as I suspect after a few hours Oliver will twig what's going on and if he doesn't like it, it may be a VERY long day

The people being seen before us were taking helmet off for the last time. the little girl had been in it for 4months & parents were really pleased with results.

Everyone says the LO's get used to it really quickly, but I'm still nervous about how I'll cope tomorrow. Keep your fingers crossed for me.

 

[Gem & Leland]

you;ll vope just fine ! i was at the london meet on leland 2nd day ,and it was hard not having somewhere to sit him ( he cant sit unaided yet) and this si still the hardest but , ive no managed to wedge him in my legs to do it !

really hope today goes well , be confident and dont panic like i did , we both ended up in tears a few times ,now if i cant get it on first time ,i take it off , take a few deep breaths and try again !



i can honestly see a difference in leland already , he looks nearly normal ! all be it a bit bumpy in places lmao his had it on 28 days today ! might try and get pics tonight !

leland send oliver lots of hugs for his first band day !