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.

What does correctivr surgery for older children/adults involve? It must be a fairly major procedure to alter the shape of the skull.
Jabberwocky, I have adopted virtually all of those repositioning techniques (in fact most of them are second nature now) and I would say that his head shape is certainly improving.

Roobie

Have you looked at this support group ? There's loads of info on there for you!

Also if you have an older baby/child with plagiocephaly, have a look here !!! It's another support group but for older children.

Also, there are 2 other helmet providers:

STARband

DOCband

Cranioband (Dr Belcher)

They all do similar jobs, but i think Dr Belcher does not treat babies over the age of 12 months, whereas the other two do!

I've browsed some of these groups when I first noticed ds's slightly irregular head shape ( I like to have all the answers first before being told them by a consultant!) but tbh his case is so mild that I'm not at all worried. I understand about the corrective helmets, it was just the talk of surgery that puzzled me.

Torgrosset, I think Dr Blecher doesn't treat babies over 12 mths, if that is the case, certainly no later than 18mths because the correction occurs due to fast head growth whiel wearing the band. The head grows its fastest from day 1 to 6mths, the growth slows down slightly from 6-12mths and then from 12mths it is much slower. You can look at the charts in the Red Book which show you this. Having monitored head growth in my own DS I can only say that the companies who do take parents' money in order to fit a head band to a toddler are not being honest. We went for three consultations in total and the first doctor we saw fitted a band to a 13mth old. It was a bad design (Perspex and not properly fitting) and not like the one you see on the websites you mentioned but also the child's growth was very slow and no difference has been noted after 2 mths. We saw a difference after 2 weeks slightly but quite alot after 6wks as the squareness at the back took on a round shape.

ChicPea - wow, you and Dr. Blecher are pratically mates

I've never actually met him, just spoke via email, but I was so grateful to him. I contacted everyone who was involved in the treatment of plagio and most didn't reply. A few did, just to say that they were sympathetic but had nothing to offer, but Dr. Blecher replied asking to see photos. I sent them and he replied with quite a long email explaining why a helmet wouldn't work at this stage and recommending surgery. It was very nice of him to give us his time as we are not potential clients for banding so he has nothing to gain.

Do you really think it would only cost £2k - £4K? I was expecting it to be at least 10 times that amount TBH. What with his fee's, aneasthetist (sp), possibly helmet therapy post operative care and hospital recovery time.

I'd be very interested to see those photos if your DH can sort it out. I delete every photo of DS where you can see the deformity. Luckily it is very hard to see in a 2D image, so we still have a lot of photos of him. There are a couple that I kept of him from when he was 8 months old that are very severe but I keep them just to remind myself that it has improved alot from what it was. I just wish that he had more time for cranial growth.

I do hope that Dr. Blecher is still practicing if/when we decide to go ahead with surgery as so far he's the only surgeon who understands why this is improtant to us.

Roobie - it is a major operation with quite a few risks. I don't know anything about surgery for teens/adults as I've not spoken to anyone of this age who's had it done. This surgery was developed to correct craniosynostosis and is normally performed before the child reaches 3 months. At this age one of the major risks is bleeding to death . AFAIK they cut the scalp from ear to ear across the top of the skull and then somehow reshape the bones. Brain damage and loss of sight are the main risks AFAIK.

It sounds like you're doing all the right things with your DS. If I was you I would look into getting him an orthotic helmet, but I am incredibly biased because I've my own experiences and wouldn't feel comfortable saying anything else. Having said that I've seen lots of babies with noticeable plagio at 7 months which has been compltely resolved by 14 - 15 months. I think I would just do it as an insurance policy IYSWIM. Hope you don't mind me saying that

Lillypond, yes we did get to know Chris Blecher very well but I must stress that it is from him helping our DS that I recommend him and not because we became friendly with him! In fact, since DS headband was removed we haven't called him nor has he called us. At that stage he was seeing patients every other weekend and packing in as many patients as physically possible as there is such a demand for the correction, so many babies need the correction in order to have a round head shape and he is a very committed doctor. When we saw him for the consultation, one Sunday evening at 7pm (!) we saw his previous appt and spoke with the parents. We were upset by the baby's head shape and realised that while we were distressed by DS's head shape, by comparison it was mild. The baby in question had been born at 31wks and had been in an incubator laid on one side and his face was twisted with the ears at different levels. The parents got their son to see Chris Blecher in time for correction. When we went to Kings College the next day to have the casting done, we saw his other patients who had been wearing the headband for some months and the parents were all delighted with the progress. We did ask because while we felt he was the right doctor, it is always a good idea to get other parents' opinions.
Re: the surgery, I don't know the risks involved.
I will dig out the before photos and his head shape now. DH is away for a few days so just need to pester him when he gets back!

Having just looked at one of the links for Plagio, I am reminded that DS had Brachycephaly.

ChicPea - sorry, didn't mean to imply that you were recommending Dr. Blecher for any reason other than his work.

The other baby you saw sounds a lot like DS as a baby. He was born with 'chronic asymmetry'. The right side of his head was completely flat from ear to crown and there was compensatory bossing on the left side. Looking back at photos he had very asymmetric features with one eye dragged round the side of his face, completely different to the other one. Amazlingly I never noticed this at the time and thankfully the facial asymmetry has improved alot. It's still there but I don't think it's noticeble at all unless you were looking for it. His ears are still uneven but you can only see this from a birds eye view anyway. The main reason that I want him to have surgery is because his forehead realy bosses outwards. From a sideview it comes out further than his nose and from the front you can see that it affects his eyebrows. He frowns all the time and I wonder if he feels a lot of pressure or if he see's things a lot darker. I really hope he never has to wear glasses as I don't know how they would sit because of his ears being uneven.

I'm considering contacting Dr. Blecher in the new year with some new photos of DS. He doesn't know that DS now has an autism DX and I'm hoping it may change his opinion on when would be a good time to operate. At least it will keep DS fresh in Dr. Blecher's mind anyway.

BTW DS has a DX of severe PWS (plagiocephaly without synostosis) but his head is very brachy as well. I think that the brachy is what has caused his forehead to boss and that's the bit that bothers me the most.

Hi Lillypond, no I wasn't implying that at all it's just that some people can get caught up in the niceness of somebody they get to know, ie a doctor and can lose sight of whether the doctor is good or not. I just want to say I am not one of them and firmly believe he is a fantastic and dedicated individual and would only recommend him on that basis.

I would contact him now as I know when we were seeing him he had a hectic schedule and we would hear from him on the day by phone rather 2 weeks before by email. I would be interested to hear what he advises you for your DS.

Torgrosset, if you are under the care of a Neurosurgeon at Jimmys, what is your next step? This is the ideal time to have a head band fitted. I presume you live in or near Leeds so not in London with easy access to Chris Blecher. I think Star Band have a practice in Manchester. This is the optimum time for the headband to be fitted!!!!

Hi ChickPea - I agree with you regarding confusing a good Dr. with a nice person. FWIW I do believe that Dr. Blecher has his finger on the pulse WRT plagio, and that he is looking at the problem from a realistic POV rather than a purely medical one. It's all very well to say that plagio doesn't affect a child WRT development but what about the effects from bullying? My DS's consultant couldn't see why my son would be anymore at risk from bullying than any other child!!! FFS kids get bullied for having the wrong trainers, let alone having a deformed head

I just don't know what to beleive at the moment. My DS's consultant is a brilliant man who has changed the lives of many families affected by craniosynostosis. I do trust him but I don't believe him IYSWIM. The first thing he said after he examined DS at his first appt. was 'It should round out but it might not'. I quizzed him about what he expected to happen but he would not tell me anything more than that a head continues to grow until a child reaches 18 years old. The pshychologist and craniofacial nurse told me that he has to speak like this so he cannot be sued for giving misleading information. This leaves me in even more doubt about how sure he is. Why would he think he would get sued if he knew what he was saying was correct? The psychologist has said to me that she's sure that DS's head would round out and the craniofacial nurse said that it won't be an issue once he starts school. I want to believe them so much as it would be the perfect ending but it's very hard when they aren't particularly convincing and there is such a lot of information that suggests that they are wrong.

I was hoping that I could make an appt. with Dr. Blecher in the new year, so I would be able to ask him questions without feeling fuilty about not paying for his time and expertise, but I'm not sure if he would agree to this seeing as he is in such high demand. Do you happen to know how much he charges for an initial consultation? If he won't see me I'll try to make a private appt. with one of the NHS Dr.s that is pro banding.

I'm quite surprised that Dr. Blecher has operated on balding men as I would have thought that the scaring from the surgery would have been more unsightly than the deformity.