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*PLEASE READ THIS* - IT COULD HELP YOUR BABY!!!

153 replies

torgrosset · 16/11/2005 15:49

Hi! My 4½ month old daughter has plagiocephaly (pronounced play-gee-o-kef-a-lee) also known as flat head syndrome and I am wanting to raise awareness with other parents. My daughter has a severe case & her flat spot is assymetrical by 25mm. It is also affecting her ears, forehead and face.

Plagiocephaly is an increasingly common condition in babies in the UK, whereby the head has become flattened at the back. Great Ormond Street Hospital says that some reports estimate that it affects half of all babies under one. It can be caused in the womb before birth, after birth by stiff neck muscles (torticollis), or by excessively long periods of time spent with the head resting in one position on a firm flat surface.

More cases of plagiocephaly have been seen since the advent of the ?back to sleep? campaign, where parents are advised to place their baby to sleep on its back. This advice is good and is saving lives. However, the advice is not complete and should be supplemented with recommendations that would ensure that plagiocephaly is avoided in the first place ? or improved if it is already present. Simply recommending that babies be carried more, be given regular supervised ?tummy time? during the day, be taken off their backs and not placed against hard surfaces continually, would dramatically reduce the incidence of plagiocephaly in this country.

Where plagiocephaly is suspected or even diagnosed, many midwives, health visitors and GPs consistently advise parents that their babies? heads will round out on their own or that future hair growth will cover the deformity. This is simply not true in many cases and is advice that is unacceptable to the majority of parents.

If there is a plagiocephaly or deformity, and the baby is under six months old, an approach called ?repositioning? can be used. This is where the parents minimise the amount of time that the baby rests on the flat spot of the head.

If a baby is over six months old, or if repositioning has become impossible due to the baby?s increased mobility and strength, then cranial remoulding treatment should be considered. A custom-made helmet gently reshapes the baby?s head as it grows, giving it greater symmetry and a better shape. The baby wears the helmet for 23 hours a day, typically for around 12-16 weeks. The helmet is designed to create a pathway for the baby?s head to grow to a more symmetrical shape as it develops. It does not prevent normal growth from occurring, but simply redirects the growth to the places that need it. It fits snugly on all areas of the head except the flattened part, holding them steady and gently guiding the growth only to the flattened area. Treatment is currently not normally available on NHS & parents have to pay around £2000 for private treatment.

There is an on-line petition being run to try to get the NHS educated & to change their views of plagiocephaly. The link to the petition is www.ipetitions.com/campaigns/plagiocephaly/

If you are worried about your babies head shape, there is a UK support group groups.msn.com/PlagioUK/plagiouk.msnw that offer loads of help & advice.

Please help us to help other babies.

Thank you.

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Are your children’s vaccines up to date?
starlover · 16/11/2005 20:46

for the most part it is only an aesthetic thing though.

in severe cases there can be other problems... but if you had a severe case you would have seen a doctor about it

Kittypickle · 16/11/2005 21:28

Oh dear, DS has a flat side on the back of his head which you don't really notice now he's 2 under all his hair. I was completely unworried about it and wouldn't have put a helmet on him but hadn't thought about him going bald

ruty · 17/11/2005 08:48

yes, my 14 month ds has flat spot - i thought 25 mm difference sounded quite mild but maybe i'm wrong! You can't see it so much now unless his hair is wet, but i'm hoping it will round out before/if [if,like his dad] he goes a bit baldish! It used to worry me alot but we don;t have any option - can't afford 2000 quid and he would go nuts with a helmet on, i know - won't even where a hat in the cold weather!

ggglimpopo · 17/11/2005 08:56

Message withdrawn

ruty · 17/11/2005 09:01

just want to add that my ds spent most of his time on my front in a sling - hated the car seat and didn't sleep much in the day. And he still has a flat spot, tho i think less than 25 mmm difference. I started repositioning him at 4 months, and he still as a flat spot. So HVs really do need to raise this as an issue early, as if i had repositioned him at night from the beginning he may have been much better - he did always sleep on one side at night, and i wasn;t aware it was a problem.

ruty · 17/11/2005 09:01

more like 10 mm i think.

ruty · 17/11/2005 09:04

sorry, i;m wrong, don't have a tape measure to hand and spouting off the top of my head. of course 25mm is 2.5 cm, isn;t it, and thats quite severe. My ds is more like 0.5 cm, not 10mm! Sorry!

ruty · 17/11/2005 09:15

er, probably is almost 10mm, just had a look. Ok. Now i'm off!

oliveoil · 17/11/2005 09:32

They sell these in Jojomamambebe here .

ruty · 17/11/2005 11:19

oh that looks good olive oil! will get for next babe!

torgrosset · 18/11/2005 18:34

Hello

I just wanted to say sorry to anyone I've offended by using caps - I didn't know it meant I was shouting - sorry I'm new on here!

Secondly, I'm also sorry for causing anyone any undue concerns or worries about this condition - there is an ongoing battle with the healthcare professionals & like I said in my 1st post - there is a petition for everyone to sign to get Tony Blair to change the NHS views & basically educate them so that new parents get giving simple advice on how to prevent this happening. Until you have a baby of your own with this condition, you'll never fully understand. If left untreated it can cause eyesight, hearing & chewing problems not to mention phsycological problems due to bullying & teasing etc.

I don't want to scaremonger anyone but this is something that everyone should be made aware of.

the links are:

support group

petition

Thanks!
xx

OP posts:
torgrosset · 18/11/2005 18:34

Hello

I just wanted to say sorry to anyone I've offended by using caps - I didn't know it meant I was shouting - sorry I'm new on here!

Secondly, I'm also sorry for causing anyone any undue concerns or worries about this condition - there is an ongoing battle with the healthcare professionals & like I said in my 1st post - there is a petition for everyone to sign to get Tony Blair to change the NHS views & basically educate them so that new parents get giving simple advice on how to prevent this happening. Until you have a baby of your own with this condition, you'll never fully understand. If left untreated it can cause eyesight, hearing & chewing problems not to mention phsycological problems due to bullying & teasing etc.

I don't want to scaremonger anyone but this is something that everyone should be made aware of.

the links are:

support group

petition

Thanks!
xx

OP posts:
torgrosset · 18/11/2005 18:35

Oops - didn't mean to post last message twice - sorry!

OP posts:
chaliepud1 · 18/11/2005 19:11

Hi

This is definitely not scaremongering, it is something all parents should be made aware of when their babies are born, a simple leaflet in the info you get from the hospital/HV would be a start. My elder son, age 6, has unresolved Plagio AND it has NOT sorted itself out, it is exactly the same as it was when he was 8 months old, luckily he has thick hair, but that won't last for ever (family history dictates!) He has been seeing a cranial osteopath in the hope that she can help the shape a little and the associated problems he has because of it, nothing major, just things like poor concentration and balance due to the tight membranes at the back of his head - this could have been sorted as a baby by gentle stretching exercises, yet a Paed told me - at 8 months- that he would have no problems and it would round out on it's own - it rarely does!
My new baby was fitted with his helmet 3 days ago as his Plagio was not improving despite repositioning and cranial osteopathy, like Torgrossets little girl it is in the severe range and has caused his ears to be misaligned and his right forehead to be slightly more forward than the left
Yes, this is a cosmetic problem, BUT, it can have other implications incl. bullying. If your children have crooked teeth in their teen years will you say it is unnecessary to straighten them, I very much doubt it, the fact that it is currently paid for by the NHS makes it sound acceptable, the fact that helmets aren't (well, actually a couple of hospitals have funded a few cases, so some Paeds are more clued up) makes it seem unacceptable to the majority of people.
I am sure everyone on here would do anything they could to make their childrens lives happier and healthier, that is all us Mums are doing to.

Liz2da · 18/11/2005 20:27

Hi,

Just wanted to say WELL DONE to torgrosset for continually trying to raise awareness of this issue. Our son Adam is coming to the end of his treatment for plagiocephaly after having been in his helmet for 3 months and the results have been fantastic with his head having now virtually fully rounded out.

What has been the most frustrating part of this whole experience is the fact that in Adams case this condition was TOTALLY avoidable had we been given correct advice from the health professionals and also if more information were on baby and parenting web sites & magazines.

Rather than saying she is scaremongering and chastising her for using capital letters we should all be thanking her for taking the time and effort to try and avoid this happening to any other babies. The last three months have been very tough for us and Adam and the fact that we are in debt to the tune of £1,850 doesn`t help much either. Keep at it torgrosset, you're doing a great job, you've got NOTHING to apologise about.

Emiliasmum · 18/11/2005 20:40

Hi all, I would just like to say that the problem with flat heads in babies is increasing and that awareness needs to be raised. My daughter who is now 11 months and is waiting for a consultaion for a helmet was born with torticollis and all the repositioning and physio that we went through did not stop her having a very flat head which I think is quite severe. In other words if it was me and my parents had not at least sought advice from professionals who work in this area then I would be very unhappy.

We were told by a paediatrician when she was 6 months and all along since then from health care professionals that it will 'grow back' and that she can 'grow her hair' well to me that is ridiculous as sometimes growing your hair isn't possible and nothing has changed. If people have squint eyes or uneven teeth they can have it corrected when young and at no expense but a deformed head is classed as cosmetic and not something that should be treated. Well excuse my language but that is B*ocks!!

If you have not come across a severe case of plagiocephaly then you cannot possibly have any idea what some parents go through to get any help, it is a very distressing subject which needs to be addressed by GPs and Health Visitors properly instead of shrugging and saying it will be fine when it quite clearly won't.

Well done torgrosset for trying to educate people on this site, good luck with it as I think you will need it.

Sam

myermay · 18/11/2005 22:07

Message withdrawn

torgrosset · 23/11/2005 23:19

bump!!!

OP posts:
NewBethlehemGirlwithsparkles · 23/11/2005 23:28

I'm really glad you've posted this.

A friend of mine who has just joined MN is having this problem atm with her dd.

She had an appt at the hospital to find out why her dd still had a flat head.
They did brain scans while they were there and it really scared my friend, she was so upset, which any parent would be and to add to that they have to wait 3 weeks for results.

Your right torgrosset, there should be more awareness and advice given on this.
Thank you for posting, I will let her know about this.

anniebear · 24/11/2005 09:43

Thanks for taking the time to post that

Don't worry about being told off for scaring other parents or shouting by mistake!!!

Conditions in Babies/children should be talked about, who cares if a few new parents may worry too much? It's life, these things can happen to some of our children and do and one day something you read on here may be of help to you

nelliec · 24/11/2005 23:14

thanks for posting message. ds2 has plagio at 4mo am about to go to gp about it but half expecting to be fobbed off. am hoping that by placing him on unaffected side this will help to even out his skull. has anyone else tried this and did it work? definitely think car seat makes it worse so try not leave him in it for too long but so does baby chair and its no less padded than others around. wish id known about this when he was born especially as he was a bit early. apparently its more common in prem babies.

jabberwocky · 24/11/2005 23:44

DS had a very noticeable scaphiocephaly (a form of plagio) at birth from being breech. We have rectified a lot of it from positioning therapy, however I would have put a helmet on him if dh had been agreeable. As someone else posted, I pointed out to dh that male pattern baldness runs in my family and I didn't want ds to be embarrassed about his head when/if that happened. The thing about positioning therapy is that you have to make sure everyone (nanny, grandparents, etc.) are on board because you have to be really vigilant about it.

soapbox · 24/11/2005 23:52

I think that it is also worth pointing out that this is nit just a cosmetic problem. If the plates fuse too soon and the skull becomes rigid then the brain is constrained from growing properly. This can lead to developmental problems.

Because of this, in severe cases then a surgical procedure to split the plates might be necessary.

Premature babies are particularly at risk from this because of the long time that they spend in the prone position. I was intersted to see further down the thread that premature babies in NZ are placed on their sides.

MollFlanders · 27/11/2005 06:36

Soapbox - hope you don't mind me pointing out that skull fusion is caused by craniosynostosis and is different to the type of plagio that's being discussed here. Premature suture fusion usually looks different and as you say can cause intra cranial pressure leading to brain damage. Where there is suture fusion it's normally picked up in the first few months of life and should be operated on quickly. Helmets will not work.

torgrosset · 15/01/2006 11:02

bump

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