plagiocephaly (flat head syndrome)

[torgrosset]

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.

Message withdrawn

Thankyou for the info. I had absolutely no idea that it could be caused postnatally. There have been a couple of local cases where families have been appealing for help with fundraising to buy the helmets. It's madness IMHO that the NHS won't provide the help these babies need.

I just recently read a story in a mag about this and they used the helmet to reshape the baby boys head but they had to go private. I had been aware of flat head sydrome as a friends ds has it he is now 6 and although his head is still flat at the back its no where as noticable as when he was a baby, his curly hair covers his head just fine. But I do think the NHS need to recgonise the need for more treatmant to help babies with this condition.

please read!!!

I just signed the petition. We had a thread on here very recently about this, can't remember what it was called.....

My DS had a funny shaped head at 6wks which looked odd but at the 8wk check the Pead said it would sort itself out. He also said that at the jab stage saying by 18mths it would be rounder at the back. I kept on seeing other children's heads, notably boys, at 2, 3 and 4 who still had flat heads so we started looking for a doctor who could fit a customised headband to correct the shape. We found a doctor in Barcelona and another one in Germany and went with the German doc who works in Harley Steert every other week. DS had it fitted at 9mths and wore it until he was 15 or 16mths. It works by fitting the front and sides snugly (not tightly) and has space created where the head is flat, ie at the back so that the head cannot grow at the front and sides but can grow where the space is which is the area that needs correcting. The doctor's name is Chris Blecher who I believe is working more days over in the UK and Starband have now set up in Harley Street. The problem is that once plagiocephaly is diagnosed, time is of the essence as the head grows very fast in the first 6mths of a baby's life, slower in the second 6mths and much slower after one year. The headband needs to be fitted as a matter of urgency.

There was another thread started a while ago where I explained our experience of the whole thing and I think it was called "A mother knows flat heads are gorgeous" or something like that. It can be found by searching "flat head gorgeous".

I have tried to put before and after photos on MumsNet but have not been able to work out how to do it!! Please CAT me if you want any info.

Davros, it was me that started the recent thread about this 'Should I consider corrective surgery for my DS'.

DS is 3.10 years now and was born with plagio. It wasn't treated and is classed as a severe deformity.

H.V's, Paed's, etc. should be more aware of this and should be advising banding for babies with severe plagio and repositioning for mild/moderate cases.

Thanks for the petition link torgrosset. As well as the website you mention I've also found a website for parents with older children with plagio. OlderPlag

Has the website and the chance to talk it over with other parents helped you reach a decision or feel any better about things Lillypond?

Hi Saker, I was just thinking about you. How did pre-school go today?

I was actually really sad to see this message posted here. I know it's selfish but I don't like the idea of raising awareness for plagiocephaly, although I know that I should be pleased. I would never discourage anyone from getting treatment for their baby and I would even put myself out to suggest it to a parent in the right circumstances, but I hate the thought that we're going to be the only one's dealing with this. I hate thinking that I'll be seen as a stupid, lazy mother for not getting the treatment for him.

Sorry, I'm really miserable at the moment.

OlderPlag has been quite a good place for me to be lately. I'm trying not to get drawn into all the talk about sueing the NHS as unless it was the only way to get the money to pay for surgery, I wouldn't want it. There are other mums on that board who feel the same as I do and it's nice to be able to share our knowledge on hospitals, surgeons etc. I've found out there that are now 2 craniofacial surgeons on the NHS that support helmeting and do not subscribe to the theory that flat heads round out. I know one of there names but I don't have an email address so I might write to him at his hospital.

I'm not so certain that we would opt for surgery regardless of the consequences anymore, but I really want to be able to discuss it properly. Obviously with DS bing autistic we don't know whether he would be able to make a decision regarding surgery when he's older, but if he is capable, I would like to know where we would go, and who we would ask, how much it would cost etc..

Things are getting a bit clearer now and I'm facing up to it all. It's all just very painful at the moment.

Thanks for asking xx

By the way, hope what I wrote earlier doesn't offend or upset anyone. It's very selfish and not something that I would normally admit to, but feeling low at the moment. Torgrosset - good luck with the banding, assuming that's what you've opted for.

Socci AFAIK there is no prof that plagio causes any nerological impairments but there is a link between persistent plagio and developmental problems. My DS's consultant thinks that babies who already have SN are more likely to develop plagio as they are often less mobile than NT babies. BTW this doesn't mean that all babies that develop plagio aren't NT as like torgrosset says about half of all babies get it. It's when there is no spontaneous improvement and it persists into childhood that there may be a nerological problem.

I've also heard that it can cuase TMJ problems, but I don't really know what that is.

Oh Lillypond, I'm sorry you are still feeling so low. I'm glad you are finding the right people to talk to and I hope you can get some answers. You need to be clear what all the options are and then at least you can make an informed decision. I understand how you feel about the message - it's not surprising in your situation. I can't imagine the anger and resentment you must feel when you know your son has a condition that could be avoided, although I still don't think you are to blame in any way.

Thanks for asking about preschool. It wasn't too bad. Ds2 wasn't particularly co-operative and at the beginning of the session I nearly burst into tears a few times. But I managed to just about keep it together. The worst thing is when the other children say things about Ds2 to me - like "look he's doing it all wrong" or "I can't understand what he says." Got to do it again next week and the week after also as it's my turn to help on rota .

Grrrr innocent things that children say can hurt so much sometimes. You can protect your kids from adults to a certain extent but it's a whole new ball game when it comes to their peers.

There's a little girl in DS's SALT group who keeps saying 'Who's Liam?', but she calls the other 2 kids by their names. It's so petty but really gets to me.

Hope the next 2 weeks go well for you both. Not a nice situation to be put in at all

My 7mo ds has a mild case - he has a flattened area on the leftside rear of his head due to favouring lying on this side from an early age. We have seen a paed who has assured me that his head should round out as he gets older and will become less noticable as his hair grows. It is not even that noticeable now unless you are looking at his head from above in which case it is slightly asymetrical/square. The paed was rather scathing about the helmets though, writing them off as not even being proven to work and not necessary anyway as it is only a cosmetic thing. Who knows? I could understand the desire for a corrective procedure in a severe highly noticeable case ..... but maybe in a mild case it would be kinder to the child to leave it and not obsess about such a minor 'imperfection'.

Roobie - In some ways I agree with your Paed, but there is a big difference between a mild imperfection and a severe deformity. What really psses me off is the scathing attitude thing. Why don't orthodentists do this when a parent asks for braces to correct imperfect teeth? IMHO having a noraml* looking head is much more important than straight teeth.

The NHS need to start addressing parents concerns about plagio with an appropriate attitude. I've seen many babies develop plagio which then resolves around 12 - 18 months, so for most babies the NHS advice is correct, but for some like my DS the deformity will continue to be severe.

I have been told so many different things by the NHS WRT plagio that I don't know what to beleive anymore. I was first told that it would correct naturally by 18 months, then 5 years, then 18 years, then that it would not improve at all but would be less noticeable and now I'm bieng told that it will continue to improve very slowly but will never be perfect. If I was a parent with a young baby I would rather listen to Cranial Tech/Dr Blecher etc. who treat with helmets, as at least their advice is consistent.

I'm sure you have made the right decision with your DS as he only has mild asymmetry/flatness and is still so young.

Hi! My older daughter has plagio too - mild case - which we left unresolved & it's not really noticable now she has plenty of hair. However, my baby daughter (who I posted about originally) has a very severe case & is now under the care of a craniofacial neurosurgeon at Jimmy's in Leeds. She also has a curved spine - which caused her plagio but that's a different matter. I wanted to let people know that ther IS treatment available & that the healthcare professionals need educating & give out advice to new parents. They tell you about backsleeping for SIDS, but not about the consequences - ie plagiocephaly. Most cases ARE mild, but this is besides the point - they still need to advice new parents & then the number of severe cases will be dramatically reduced. Thanks for looking!!!

message for Lillypond - Maisie is being banded. Because her case is severe, the craniofacial neurosurgeon at Leeds is doing it on NHS - yes i know we are VERY lucky! We've just got to wait for the cast etc...

Sorry, meant to put in links again:

Petition\link{http://www.ipetitions.com/campaigns/plagiocephaly/}

Support Group/More Info{http://groups.msn.com/PlagioUK/plagiouk.msnw}

Cheers!

torgrosset - very best of luck with the casting Things have certainly moved on if banding is becoming available on the NHS - even if it is still a lottery based on who your consultant is.

Thanks for starting this thread. It's a painful subject for me but I do agree that awareness needs to be raised. If I had read this thread 3 years ago things could have been different for me and DS and it's hard to accept that I can't change that now.

The NHS starting to carry out treatment for plagio puts parents like me in a much stronger position. It proves that expert opinion is divided and that at least some cranio doctors understand why parents view plagio as more than just a beauty issue.

Sorry to hear about Maisie's spine. Sounds like you've had a lot to deal with, but hopefully plagio will be one less thing to worry about very soon.

Good luck xx

Roobie, please read my post. I disagree with your Pead and would suggest he is ignorant about the helmets or he has seen the clear perspex type as fitted by one doctor we saw which was ineffective. I know this because I saw his previous appointment whose child was wearing this helmet and I got her tel number so that I could speak with her frankly. We saw a Neurosurgeon at Gt Ormond St who we paid £290 before we even saw him and his opening words were "I don't really know much about how to correct this...". Also, we had our DS's band fitted at 9mths and his head was very odd looking. Now there is still a degree of flatness but nothing like the square conical shaped head he had.

Lillypond, I am not surprised you are feeling so low but you are not a lazy mother, how are you supposed to know about this condition when GP's and other types of doctors are ignorant about it??
We saw Chris Blecher who was fantastic and who is a dentist and a maxifacial (sp?) surgeon and he could give you very good advice. He defintely knows his stuff. I think he said that he has operated in Switzerland on male adults who when they have lost their hair, they then require correction as with little or no hair there is no disguise. I do feel for you because I felt alot of guilt that my DS had this odd shaped head and it took us a while to seek alternative advice to our Pead. Please CAT me if you wish to.

Hi ChicPea

I contacted Dr Blecher last year to see if he would consider banding DS. It was a silly request as I know at this stage it would probably mean him wearing a helmet until he's a fully grown adult. I had to ask though as I'd been talking to a lady in Australia who managed to convince a Dr. to band her son at 4.6 years. Obviously Dr. Blecher refused (with good reason) but he asked me to forward some photos of DS with wet hair. He recommended surgery because of the severity but said that it would be inappropriate to operate without DS's consent, and advised us to wait until DS's teanage years.

I'm very grateful to Dr. Blecher as DS's own consultant wouldn't entertain a discussion about surgery. It's good to know that there is a procedure that can correct DS's head shape but I would like to know more about the risks, scaring and post operative care etc... Our biggest problem is that I still don't really see how we could access surgery. Dr. Blecher is not part of the NHS so I assume we would have to fund everything. I've no idea how much this would cost but it's probably a staggering amount when you consider all that's involved. If we could definetly access surgery then I would come up with the money somehow, but we're talking about something that is at least 10 years away. Who knows whether Dr. Blecher would still be willing to operate or whether he'll even still be practising then.

The NHS do seem to be moving forward with their attitudes and it seems as if a few Dr.s have now broken rank and are disagreeing with the traditional 'wait and see' approach, and this is good news for us, but it does leave me with a bitter taste in my mouth. I'm hoping that if more and more NHS Dr's start recommending/treating with bands then I will be listened to. The NHS can't really say that banding is now appropriate because heads don't round out and because it's cruel to leave a child with a deformity when it could be easily corrected, but then say that I'm being a perfectionist and that my son's head will round out. Sorry, waffling away here and probably not making any sense.

How old is your DS now and are you happy with the improvement from the helmet?

Roobie, you are at an excellent time to do positioning therapy. I used some of these techniques when dealing with ds's scaphiocephaly and it did help quite a bit.

Lilypond, have thought about you often since we chatted on the other thread. I know it's a terribly difficult decision and I so feel for you.

Thanks JW

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Hi Lillypond, I am glad you have seen Chris Blecher because we thought that he was somebody who knew what he was talking about and was very committed. Your comment about whether or not he will still be operating / practising in this field in 10 years time is a thought but we got to know him very well over the 5 or 6mths that he saw DS and I can't think of anything else he can practice when he has been correcting head shapes for the last 10+years plus doing a lot of research and papers on the subject. He is very high in his field. He used to visit us at home every 2-4wks as my DH (who has a medical business) was interested in helping Chris become more established over in the UK as the market for this is very large.
I would think an op of the kind you mention is going to cost £2-£4k. It may be that it would be available on the NHS as thinking does change albeit very slowly.
DS is now 2yrs and 1mth and people who don't know about his head shape problems wouldn't guess that he has had plagio. I did promise on another thread to post before and after photos but don't know how to do it. I will ask DH to work it out so that I can show other mothers what can be done.
Again, I am sorry that you find yourself in this position and I do understand how heartbreaking it is. Having said that, I do see alot of children with flat heads and the Consultant Neurosurgeon that we saw at GOS said he was in the process of writing to the Royal College of Peadiatricians about the growing problem of flat heads (actually, he called it an epidemic) and, you never know, in 10 years time, the NHS may be willing to correct its mistake by offering surgery to teenagers/adults who are bothered by their head shape?