Flat head syndrome/cranial bands

[Taffy01]

My son has been diagnosed with Torticollis which is preventing him turning his head to one side, consequently he always sleeps on the same side so is developing a flat side of head - everyone says this will right itself, but it is beginning to show on his face, one side of his forehead seems to stick out a bit... anyway, I have read about these cranial helments to help correct head shape - has anyone experienced similar symptoms and Im keen to hear anyones views/experiences on these helmets.....

Each their own, your child your decision. There was a time when vaccinations were considered unnecessary.
Any new and costly treatment will always have opposers, that's given.
However, the Bristol hospital offers helmet therapy on NHS so somebody somewhere must think it's a valid treatment.
We went private and are very happy with the results, worth every penny.

Haven't had time to read the whole thread but imo you should get the helmet. You can do a search under my name and plagiocephaly and pull up several threads on this. With the torticollis you really can't do positioning therapy properly and the earlier you address the problem with a helmet the better the results will be.

With all due respect tigger and seeker you do not know whether this is a self correcting condition. I don't know this either.
I think most parents are clued up enough to research the subject and weigh up the pro's and cons before embarking on this.

I am generally a sceptical person but on balance I felt it was in my son's interests to go ahead with a helmet. No one twisted my arm or made me feel guilty.

Taffy, can I suggest a couple of things. Obviously the Tortcollis (sp) needs to be sorted out properly, but my DS developed quite a flat area on one side of his head at about the same age. Basically he was spending too much time on hardish surfaces. Place mat, mattress, car seat etc. So I invested in a sheepskin fleece. He had one in his carseat, and a larger one on the floor for playtime. I also later put it under his sheet (not recommended, just saying what I did) and it did improve. But the main thing that I did that made a huge difference was to carry him in a sling as much as possible and to encourage him to play on his front. Putting him on his front as often as possible during the day will be the best therapy for a misshapen head. I think that the "back to sleep, front to play" message is definately lost in the early days.

Good luck and if you think it's a bigger issue keep pushing the peads for a second opinion. A light at the end of the tunnel is that at 14 weeks it's fixable. FWIW I am not too sure that a helmet will help much at this stage. I presume that it would be heavy on his neck and might cause other problems, that's what I was told anyway.

Place mat should read play mat

www.ich.ucl.ac.uk/gosh_families/information_sheets/plagiocephaly/plagiocephaly_families.html

may be of interest?

staggerlee - I was speaking in a general sense. I wasnt commenting on any particular individual case.

no problem tigger. I think its an area where theres a lot of disagreement within the medical profession too-I think thats why its so difficult to know what to do

My ds would only look left for about 3 months which led to me stopping bf as he wouldn't feed the other way.

His head was mis-shapen and one of his ears was further back than the other. His consultant said this was nothing to worry about and would correct by age 5.

Ds is 5 in August and his head is no different. His hair is long and thick so it's disguised, but when he wears a wooly hat you can really tell also when he wears a sun hat the peak always goes to the side.

I really wish we had pushed for a helmet or something especially if he goes bald early like dh.

I have unfortunately heard this story many times. My personal belief is that it is much better to be proactive within the first year than to regret it later.

Ds was born with a very strange shaped head, medical staff said it would sort it's self out,just turn him whilst he slept, lay etc. So he had neither torticollis or plagiocephaly but because it was already 'flat' he always slept on that side. However, it didn't get better and our GP did refer us to a cranio-facial consultant. They ummed and ahhed (I appreciate that what they see on a daily basis is far worse than anything DS had) and they left the final decision to us.They were supportive. We choose to go ahead with the helmet. Time was moving on quickly and we didn't know if it would self-correct and having been given the option we took it. We didn't want DS to ask us aged 15 why didn't we do it? He wore it from 12-18 months.
He had it tightened/monitored every 4-6 weeks. There was a significant improvement but even the consultant couldn't categorically say that the helmet was the answer. (I have wondered if it should have happened earlier.)
However he still looks like he has been 'hit by a frying pan' when he steps out of the bath ! but the hairdresser does a good job of cutting some shape in to his hair, she says everyone has a very different shaped head. DS lives in blissfull unawareness of the shape of his head!
We were offered the service on the NHS. I feel that we made the correct decision to go down this route, who knows what would have happened

Was he breech? That was the cause of ds1's head problem. He had scaphocephaly. We corrected it almost fully with positional therapy. There's still a small flat spot and I kind of wish we had done banding.

our son also had plagiocephaly, as he always turned to the right in his sleep.
at 16 weeks, you ds is probably too young for cranial moulding anyway, but agree wholeheartedly with treating the tort and minimising time spent in car seats/baby bouncers ... anywhere where his head rests on the flat spot.
tummy time is crucial and he may hate it at first, but it is well worth perserving with as it will strengthen his neck muscles and there whilst he is in this position, there is no additional 'pressure' on any part of his head.
the plagiouk website is fab and loads of tips on there. but until your sons tort is treated, he will always favour turning to the right as it will be more comfortable for him.
i also found the helmet suppliers are very low pressure. we opted for locband, as we weren't prepared to take the risk that it wouldn't self-correct and then not be able to do anything. it worked for our son, but it can be a very intensive and stressful process, particularly in the beginning. but for us, it was well worth it. you've got to do what is right for you. good luck x

ps i think 6 months is recommended as the optimum time for shortest/best results with the banding. so it is probably worth trying other means for a month or so and then seeing whether you are seeing improvement through repositioning/treating tort. hopefully there will be enough of an improvement that you are happy with, but the option is there for banding if you want to seek further treatment.

I'd just like to point out again that dds torticollis was corrected souly by me oding muscle streches with her. That has helped a great deal & her plagiocephaly continues to improve.

tigger and seeker - you are entitled to your opinion but unless you have been in the same situationyou can't imagine what it is like. To dismiss it as just a money making exercise isn't helpful really. We know we did the right thing as our daughter wouldn't have got better and it isn't a cosmetic thing, a mishapen head can have repercusions in the future.

FWIW Money is no object when it comes to the well being of my children and having had 2 outr of three of them having problems, I will do all I can to make things easier for them.

Thanks guys for all your comments - it really is a difficult thing to know what is best to do and as it is not NHS funded or approved the hardest thing is the decision really does rest with me - Im really torn to know what to do, but I guess just wait a couple more weeks - probably until he is four months... we have seen a cranial facial paed who took some photos and asked us to come back in six weeks, so we will see from there - I think the bottom line is for my son that I would hate him to turn round later in life and asked if we had the helment/band option and it might of helped, why didnt we do it... but it breaks my heard now to think of my tiny baby having to wear one - I worry if it will affect other areas of growth, as it will be extra weight etc..... so so torn.

I won't lie to you, getting the cast done for our DD was awful but partly that was because she was much older and could wriggle and complain more.

Once she got used to the helmet she loved it and when she had finished wearing it she would always insist on having a hat on. It did a great job in protecting her when she fell and it really weighs very little.

We took hers off at 6pm for the hour it was allowed off, cleaned it, and then it went back on for her to sleep.

You can't swim with it on but at that age it wasn't a problem missing swimming.

We still have the helmet, it is in the loft covered in all the stickers we put on it.

It is a hard decision especially when so many professionals aren't in agreement and when you hear stories of heads getting better on there own and then heads staying noticeable flat.

I made my decsion on the basis that as an adult I am extremely grateful that my parents took the decision for me to have my ears pinned back as a child and to undergo several operations to correct my squint. The difference being that I could have made these decisions for myself as an adult if they hadn't. With regards to a helmet there is, unfortunately a small window of opportunity.

With regards to the helmet itself they do not affect development and the younger the baby the less time they have to wear it.

The problem is there is very little/no research done by anyone without a finacial stake in the helmet/band business.

So AFAIK there are no side effects on development - but the reality as there seems to be so little information no-one really knows - except from personal experience.

So what is true for the other posters on here may or may not be true for the OP.

Go back to the paediatrician with all the info you gather and discuss it further. That might help you with decision making.

so that you know, not all helmet providers use the cast method to glean the shape of the head from which to build the helmet shape. some use infra-red light (similar to the beam on supermarket checkouts) and it is then imaged onto the computer. our ds wore a stocking over his head and sat on my lap whilst the beam was pointed over his head. this is obviously much gentler than the casting method and seems to be used more and more recently (our ds had his helmet last june - september) so there are alternatives to the casting too.

Yes, our daughter had her cast about 4 years ago and I am sure things have moved on.

It is a difficult decision to make as there is no way of knowing what is the right thing to do as you can't see into the future.

Our DD went from 1.7 to 0.3 so we are very happy and know that she is less likely to have other problems because we did use the helmet.

Our insurance paid out for hers later but that is rare and I am sure was due to her having other problems.

I'm with N and CT here. If we had to pay for it in the end we would have done.

DS wore his between 12 and 18 months, through a very hot summer but did not complain once.He was significantly older than many children that undergo the process. Taking that point in though I guess the professionals feel that the treatment is worthwhile.

Regarding pain, the moulding process did look quite traumatic (it's the same stuff they use when they take a dental impression)but Ds was fine. In terms of ongoing treatment, at each check up the lab technician would ask if we felt DS was coping and would point out areas of change and adjust for pressure +/-. The helmet was made of clear acrylic with large ventilation holes and covered the whole head. It was very light.
Hope this is helpful and good luck.

Can I ask why paediatricians don't recommend helmets if they are so important? Are there any case studies where parents say that they didn't get a helmet and they wish they had because their child's head is still asymmetrical?

I think it comes down to money Seeker. Also as someone has pointed out the only research into this and helmet treatment has been funded by the companies that produce the helmets so obviously is considered biased. But there has been NO idependant research to suggest that helmets don't work or indeed any research into how common plagio is, how often it self corrects, how often it remains and into the long term affects other than cosmetic issues.

So whilst paediatricians say they are unnecessary they can't actually base that on solid research any more so than someone saying helmets are necessary.

I do personally know a number of people with children who's head shape has remained significantly mis-shapen and I know one who's son has a number of issues due to the fact that his jaw is so misaligned due to the plagio.

It is one of those subjects where most of the information is anecdotal.

IME my sons head did not improve after 6 solid months of repositioning, cranial osteopathy etc, but did significantly improve with helmet treatment.

I know many others who found helmet treatment to be successfull.

Obviously my experience is anecdotal and I based my choices on mostly anecdotal evidence as that is all there was to go on. I don't regret it for a minute.

I'mm also happy to admit that I also know babies with plagio who's heads corrected themselves with time.