deformational plagiocephaly

[hearts81]

Anyone else have a baby or know a baby with deformational plagiocephaly (flat head syndrome)?

I've been talking to a specialist and we've decided that Reece will be best off wearing a band(helmet). It will turn out very expensive- nearly £2000 for band and then the many visits to Leeds i will have to make costing around £35 for the train . I'm lucky because a few of my friends have offered to lend me some money.

I'm just scared about how Reece will cope with wearing a helmet for near enough 24/7. At the moment he gets in a total pap if i put his sun hat or cap on!!! Also i know he will get a lot of stares. But i just keep reminding myself that its better for him in the long run.

So if anyone has experience in plagio it would be great to hear about it

 

[lauramumof2]

Im sorry I dont know anything about it.
Im sure you will get lots of replies in the morning though, I think Ive seen posts on this before.
Bless him.

 

[Urchin]

I looked after a little boy with one of these once, he didn't seem to mind it at all. It had all cars and bikes all over it

This has been in the news recently hasn't?
What does your GP say? I'd be wary that this specialist wants you to fork out 2 grand...have you had a second opinion? is it absolutley necessary?

 

[Sarah&Braydon]

there was a lil boy at the HV with this and i was tlking to his mum and she sed he didnt like it at first but he soon got used to it

i cant believe u have to pay all that money! i couldnt afford it! and many people couldnt either, do they not do it on NHS?

 

[Lucy]

Hi

There's an 18 wk old baby in my baby group with a very flat back of her head, her mum is really concerned about it but told me that her doctor says it will right itself as her baby grows?

She was wondering if it had anything to do with her daughter's mattress type or the amount of time she spends on the floor etc?

Olivia has a wee bit of a flat bit at the back of her head as well.

Lucy

 

[Cloughie]

Apparently car seats are one of the main contributors to this. Try not to leave them in there for too long, and make sure they spend lots of time playing on their fronts.

 

[petchy]

ruben has one of these http://www.goigoibabypillows.co.uk/. i got it for him when i noticed his head was getting really flat on one side, and already i see an improvement after only 4 weeks use!

i am from norway and was already used to the idea of baby pillows, as contrary to UK advice the health authorities in the scandinavian countries recommend using a baby pillow to prevent plagiocephaly following the "back to sleep" advice. the hospitals even use them for the newborns to encourage parents to use one! some hospitals in the UK (great ormond street and portland hospitals are just 2 examples) are among those now recommending our baby pillows to their patients and newborn!

the website above has translations of information given to parents in sweden by the swedish health authorities, which you can use to "disarm" your HV should they be concerned about your use of a pillow. after all sweden has the world's 3rd lowest rate of cot deaths - with figures nearly half that of the UK's - so it can't be as bad as they say!

Just remember to always put your baby down on its back with head and shoulders positioned on the pillow.

 

[Layla]

i have just orderd one of those, they look good!

how long did it take to get deliverd to you?

xx

 

[petchy]

it arrived in a couple of days, so fairly quickly. oh, and as a note - the children's pillowcases they sell in ikea are the correct size for these.

 

[amyknight88]

A friend of mines baby was born and he only used to lie on his left side which made that side of his head go flat, but im sure she was offered an operation on the NHS if it didnt fill out itself by the time he reached a certain age.. I cant be 100% but ill ask her. 2 grand + extra costs is a bit extra. id get a second opinion like someone else said.

Amy

 

[Rosieroo]

The problem with plagio is that it's seen as a cosmetic fault and not something that is going to cause health problems (only bullying!!!) so therefore the NHS does not fund the helmets nor really sees the reason for them

 

[hearts81]

The problem with plagio is that it's seen as a cosmetic fault and not something that is going to cause health problems (only bullying!!!) so therefore the NHS does not fund the helmets nor really sees the reason for them

I know its not fair is it?!! They can give away bloody boob jobs and sex changes but they cant help a little baby's to have a normal head!

Thanks for all these replies!!! Reece's flat head was caused by the way he was in the womb i've been told. He has never really slept on his flat side, he's always slept facing the other way.

Urchin i know what you mean about the specialist just wanting the money but i've been to see 5 different doctors and peadiatritions(sp?) and they've all said the same thing, basically that it will stay like that but his hair will cover it. (he has my big bushey curley hair so i can prob guess that he will never want it long lol)

So its not nessesary but i dont want Reece getting picked on when he's older and the way kids are turning now it's garrenteed(sp?). So i dont want him coming up to me later in life and asking "why didn't you sort my head out mammy?"

 

[beanie]

I haven't had any personal experience myself but from what I have read and heard the helmets don't bother them, in fact it'll bother the parents more. Whilst I am sorry that you are having to fork out for this yourself, I am pleased that yu are getting it sorted as I know you have been worrying about it for ages. When is he getting the helmet, I have seen some great designs and patterns including an England flag.

I use a sleepcurve mattress and think they are great. There is some info about them on this page (second article down)

http://www.healthnet.co.uk/pharmacy/pre ... elease.htm

Seren has had no probs with her head and has slept fine on the matress. We are getting the cot insert soon for her cotbed, you can get them at baby's r us.

 

[amyknight88]

NHS provde some cosmetic treatmemts free for under 16s.. My best mate had her ears put back and she didnt pay... they didnt hurt her so it was only to stop bullying..is it not the same situation?

the baby i was tlaking about before is 2 now and his head is still a little bit flat on one side but you would only be able to tell if you knew, he dont have much hair either.

 

[hearts81]

Beanie that mattress looks great. I wish that when MWs and docs tell you to lie babies on their backs they would warn you about possible flat heads it would be so helpful. But as i said before i dont think Reece's is because of sleeping because for as long as i've noticed he's slept on his other side.

Dont know when i'm going to get the helmet yet i'm still discussing money and payments with my friends, its all confusing because in a few weeks i wont be working so i'll have no money to pay them back When its sorted i just have to phone the specialist and he'll see us asap.

 

[Rosieroo]

Has Reece got torticollis? Ella has been referred to a paediatrician to see if she has got it. That would explain why he will and can only sleep on the one side.

 

[hearts81]

No Rosie he hasn't got torticollis. It just seems like he's uncomfortable sleeping on the narrow part of his head if you know what i mean.

 

[Rosieroo]

If Ella is really tired there is no hope of us getting her to sleep on her 'good' side (the non flat side), she just flumps it down on the bad. We go in to her 2-3 times a night before we go bed to move it back to the good side, but to no avail. Still waiting for a paeditrician appointment

 

[hearts81]

have you tried one of them special pillows Rosie?

 

[Rosieroo]

I have but it's too late for her - plus her neck muscle is tight on one side which makes her hold it like that. I've noticed an improvement since we saw the chiro, but still not a good enough one.