flat head syndrome

[Bagpuss17]

has anybodys baby ever suffered with this and if so what did you do about it?

Isaac has a really flat left side as he has always slept on that side since birth. As he was a prem baby he did nothing but sleep for the first couple of months.

His head is so misshapen now and it's also affected his facial alignment, although I'm not sure many people would notice that.

There is so much ignorance to this problem in the NHS but it has much more impact on a child than just cosmetics. It can affect their jaw bone, teeth etc..

Anyway, we took Isaac back to the GP today and mentioned it again and they're referring us to a paed at the hospital but I know they'll just say it will sort itself out.

We're seriously looking into the cranio helmets now. I feel so upset about it all and just wish the NHS would advise Mums about repositioning your bab when sleeping. Prem babies are more likely to suffer from it because their skulls are softer and boys are 3 times as likely to suffer from it than girls.

 

[kellie80]

My 2 have had it but it was really mild. My neice has it quite bad and the gp and HV said it will sort its self out when shes older. What she did say though was that babies naturaly look in to the light if its electic , sunlight or just towards the door when there in there cot. She said to try moving the cot so baby will have to try and lie on the other side of thier head to look at the light. Don't know if it works or not, never heard about it before.

 

[Bagpuss17]

I think it's much more common than you realise. The GP and HVs have both said more and more parents are coming to see them about it but they aren't always very helpful.

That's right what you said about the light etc...we're trying all that at the moment.

It's easier to resolve whilst they're young but I'm so worried that it won't improve and he'll end up with a misshapen head and god knows how much bullying later on.

 

Kina's little girl had this but it was caused by smething else, can't quite remember what, she could be able to help before you resort to the helmets hun (which are very expensive!)
He has plenty of time to grow out of it when he rolls about a bit more if it's striaght forward flat head, I now it can't be nice to see, but it is common. Glad your GP has referred you to a paediatrition at last xx

 

[Rachel]

Nathan's head is flat on his left side aswell. He was also prem. When I spoke to the HV about it all she said was that it would correct itself when Nathan is sitting up on his own.

 

Damien's was a tiny bit flat, but he has slept on his tummy for as long as I can remember which reduces it (not why he slept on his front though, he slept on his front because of reflux).

 

[Bagpuss17]

HVs all say this but the problem is, in a lot of cases it doesn't correct itself by which time it's too late to correct. Cranio helmets are more effective if you get them fitted before they're 1 I've read, I think between 4-7 months is the best time.

Fortunately, we can afford to pay for one if we need to. Bloomin expensive but the results are amazing from what I've seen on the plagio support sites.

Isaac is really not good on his front because he hasn't got the strength to lift his head up at all. He'll tolerate it for a couple of minutes but then he gets very distressed.

I've ordered a sleepcurve insert for the cot. In the day times I'm trying to get him in his bumbo seat and prop him over the widgey breast feeding cushion I have. Anything to get him off his back.

I've spoken to Kina about it, her baby had a tightening of the neck muscles. The osteopath we spoke to (he has an appointment with her next week) says we'd know straight away if it was that, it doesn't sound as though he's suffering with it.

We'll see how long it takes to get this hospital appointment.

 

[Rosieroo]

I've spoken to Kina about it, her baby had a tightening of the neck muscles. The osteopath we spoke to (he has an appointment with her next week) says we'd know straight away if it was that, it doesn't sound as though he's suffering with it

We didn't hon, not until it was pointed out to us. We thought it was just a problem with her head until we saw the chiro and after a couple sessions she said that was something wrong with her neck. The condition you're looking out for is torticollis. When you reposition his head will he keep it on the non flat side at all? Ella wouldn't, it would roll straight back.

 

[Cat&Noah]

Personally I do not agree with the helmets at all, I that fact that they are not endorsed by Doctors at all speaks volumes. As much as its worrying to see anything that doesnt look completly 'normal' on your child, this IS something that will correct itself, unless its suffered by an older child, simple techniques can correct this problem

When asleep:
Always put baby to sleep on his back but alternate different ends of the cot to encourage him to look to a different side each night.
Move the light in the room as babies tend to follow the source of light.
Reposition your baby's head away from the flattened side once he has gone to sleep

When playing:
Encourage baby to play on his tummy to keep pressure off his head and also strengthen neck muscles When feeding:
Alternate the side you hold your baby when feeding him.

When travelling:
Reduce the time spent with his head on a firm flat surface such as car seats and buggies
Use front carriers rather than back


I think wearing a helmet is unfair on the child (and this coming from someone who had to wear a corrective back brace as a child) Just love them from how they are and let them develop normally, his skull is still so soft and the plates are still moving and there is plenty of time for this to correct itself, please dont give in to some cosmetic marketing gimic, cause that is all these helmets are its just companies casking in on parents paranoia and worrys.

 

[Bagpuss17]

Kina, the osteopath we spoke to said it would be clear if Isaac had torticollis because he wouldn't be able to move his neck at all on the affected side. Isaac can move his neck freely so she's certain it's not that.

She asked us lots of questions, we're going to see her next week. Though the GP doesn't give cranio osteopaths much respect, I think alternative therapies have their place personally and a consultation won't do us any harm.

I hear what your saying Cat but I have to disagree. There are so many parents out there with children 12/18/24 months whose flat head conditions never corrected themselves and now they have had to resort to cranio helmet treatments. Believe me, if you saw the extreme deformaties of the skull that some babies have you can understand why parents choose to go down that route.

We put our trust in HVs and GPs and believe them when they say it will correct itself but that doesn't happen for a lot of babies. We're doing all the things that you've listed. We've done our research and we'll stick with these techniques until we get our referral to the paed consultant.

They are endorsed by some doctors as people have had treatment on the NHS for it but only in a few cases. Some reckon that it's not more widely available because it's considered a cosmetic issue. Then why have orthodontic treatment available on the NHS?

The clinicians in these clinics are experts in the field of orthotics, they're not just people of the street. They don't recommend cranio helmet treatment unless they believe it will be of benefit. Parents have come away and been advised to follow repositioning because their babies only have mild cases of it.

The results speak for themselves with regard to the helmets from what I've seen and spoken to other parents about it. Isaac is young enough that he would probably only need 2/3 months of wearing one for his condition to be corrected. What's 2/3 months of wearing a helmet versus a possibility of a lifetime of bullying? Plus other complications from having an irregular shaped head?

For us it's an option that we are still open to, it's not something we'll rush into but I want to be able to look into my sons eyes and know in my heart of hearts that I did everything I could to help improve his condition.

 

[Cat&Noah]

Fair enough if you have done your research and looked at all options, and I hope your appointment with the speccialist goes well. Its just I know lot of parents freek out and go the the extreme option of a helmet when its not nesissary, and the poor kid has a little dent that they stick them in a helmet for a year when it would have sorted on its own. Most people if you shaved their hair off had odd flat/pointy/uneven bits to their heads, but I think it just gets noticed on babies more cause they have a lot less and finer hair covering it.

 

[Rosieroo]

Bagpuss, we went for a free consult here http://www.plagiocephalyuk.co.uk/ at their cardiff office. The woman was extremely helpful, scanned Ella's head and told us what severity the misalignment was. She also noticed that Ella had a problem with her neck and said that repositioning may help the flattening after the torticollis had been treated (which is what happened). We were in no way under any pressure at all to continue with treatment and I can highly recommend them going on the basis of the time we spent there.

Does your DS have full movement on both side of his neck. When you dangle a toy to the side opposite the flatness how does he react? Can he turn his head to touch his shoulder with his chin both sides and to the same height?

 

[Bagpuss17]

Cat, I know where you're coming from. From what other parents have said the companies they've used wouldn't recommend the helmets unless it's necessary. I certainly would only go down that route as a last resort after trying everything else first.

Kina - That's the company we're thinking of using too. We'll go to the clinic in Leeds as it's nearer for us. What did they say about Ella's severity? Did they recommend a helmet? It's great that they offer free consultations and don't pressure you.

I'm curious to know the measurements so that we can get them checked after sticking with repositioning for a bit. We know he's young enough to respond to repositioning but it's how much time you give it before going for the helmet that's the tricky bit at the moment.

I'm not sure I can answer your questions about touching his shoulder on both sides and to the same height. The cranio osteopath will be able to assess that next week and tell us for sure but she thought it wasn't torticollis, guess we won't know for sure until next Wednesday. He can defo turn to both sides OK. I thought he couldn't for a long time but he can.


Our GP didn't give any credibility to us visiting the osteopath. They seem to be able to offer a lot more help than the GPs though and give the condition the seriousness that it deserves.

So, have you noticed much improvement with Ella and how much treatment did she need with her osteopath?

 

[Rosieroo]

We found the HV absolutely CRAP when it came to Ella's problem. It was only because the chiro was recommended by another mum whose baby was having problems that we found out about Ella's torticollis. You wont find any HV that will tell you the helmets are a good idea, they all seem dead against them. I think some people think that parents are putting their children through the helmet treatment when their heads are only slightly bumpy, as you've probably seen the deformation can be really really bad and look like they've been completely flattened.
When we did get to see a paediatrician and torticollis was diagnosed after an ultrasound, x-ray and examination we were then referred to a physio who was wonderful. The treatment we received from them was akin to private, our sessions were lengthy, informative and we were just very very impressed. After a couple sessions we noticed an improvement in the way she held her neck and the flatness started to get a lot better. The treatment coincided with when she finally started rolling (a day before she turned 6 months), so I also think that helped with the flatness.

The clinic suggested we tried repositioning after treatment for the tort first of all for a month to see if there was any improvement and if not and we wanted to go ahead with a helmet then we could make another appointment to see how things were going. We didn't need the next appointment as we noticed a great improvement once her tort was sorted out. I can't vouch for Leeds but Cardiff were great

Her face is still slightly lopsided and some days looks worse than others, but it's definately not as bad as it was.

The physical problems for children with plagio or brachy are there it's not just a cosmetic problem which I don't think some people realise either.

Whatever you choose noone can say you're not doing it for the best of your bub and it will only be a maximum of 6 months of his life if you go ahead with it over the next few months. There are some good support groups out there with people that are going through the same thing and can really help you. A cranio was recommended to me immediately upon posting pics of Ella And a lot of these people have had problems with their GP and HVs.

BTW they said that Ella's severity was moderate bodering on severe based on the misalignment which I think was 12mm

I was worried that we were going to be bullied into getting a helmet by a pushy salesperson but it wasn't like that at all.

We were anxious about the time frame for getting Ella a helmet, but they'll be able to advise you at your appointment.

Good luck hon, I know it's stressful

 

[Bagpuss17]

Thanks for your reply, you've been such a help and it's useful to speak to somebody whose been through the path we're about to take.

I'll keep your post handy so I know what to push for once we've seen the paedeatrician (can never spell it).

I've heard really good things about the Leeds clinic too, Steve Mottram is the clinician most people seem to have dealt with and they all speak very highly of him. I've emailed him photos of Isaacs head for assessment, not sure if he'll get back to us.

Did you have to wait long to get an appointment with them?

You're so right, flat head syndrome is often misunderstood. I only wish it was just a bump and not a flattened side and misaligned ear. I would never put my precious baby through anything so major without a good reason to. It's all for his benefit at the end of the day.

I feel so much more encouraged now though after speaking to you and having a more understanding and knowledgeable GP visit today. She has young children herself so perhaps that's why she's more in the know.

I've spent the last couple of days in tears, feeling so guilty about it all. It makes you feel like it's all your fault when I know deep down that it's not.

I'm going to make sure I write to my MP about the lack of information about this from the NHS, if only they could make people aware of how they can prevent it there wouldn't be so many distressed families around.

We're going to be so much more prepared when we have baby no.2!

One more question, how long did it take you to get your paediatrician appointment? I hope we can get one sharpish, very much doubt it though, it would be great if our outcome was as good as yours and we get physio on the NHS. That said I'll pay anything to get this resolved/improved.

Others on the plagio support site have recommended sticking with repo at the moment as he's so young. It's hard work but we must be strict with it and give it a chance to work.

 

[beanie]

Bagpuss just wanted to say that at the sing and sign I go to there is a little boy with a helmet on and it doesn't seem to bother him in the slightest. He plays around fine and is always smiling. Plus there are some funky designs out there. I hope whichever decision you make works for you all

 

[Rosieroo]

Did you have to wait long to get an appointment with them?

With the clinic I think I got an appointment within a fortnight, but the paediatrician appointment was about 6-8 weeks which when you're dealing with something so time sensitive seemed like a very long time. In the end we pushed and pushed and got in on an emergency clinic, but that only shaved a couple weeks off. Then we had to wait for her scans etc and to get in with the physio.

I do think you'll notice an improvement when he starts rolling, though that may seem like a little while away. Ella's face looked a lot worse when she was the same age as your bub.

 

[hearts81]

has anybodys baby ever suffered with this and if so what did you do about it?

they're referring us to a paed at the hospital but I know they'll just say it will sort itself out.

My little boy has a very flat head. He's 14 months now and it is still as bad as its always been although his hair hides it a bit. That wont help at all when he goes swimming etc so I think he will still get picked on

We got referred to a paed too but all they did was check he could move his neck and measure his head every 6 months. As his head is growing (no matter which direction) they said there is nothing they can do and it MIGHT go back to normal before he's 18. (doesn't help at all that our paed is foreign and we cant understand a word he says)

If I had the money I would've got a helmet. I know Reece is gonna grow up hating me for doing nothing about it.

 

[Bagpuss17]

Thanks girls. The feedback from other Mums with children with helmets is positive, it doesn't bother them at all.

I'd just be self conscious to start with but I'd get over it. It'd be worth it to sort the problem out.

It's true, 6-8 weeks makes a big difference with this condition, in that time we could have Isaac in a helmet if we choose to go for it.

I know this paed is going to be useless too. It's a kop out to say that it will correct itself.

I'll be relieved once we've made a decision one way or the other. It's really stressing me out at the moment. There's no getting away from the fact that his head is misshapen.

He seems to be behind with his development when I compare him to babies of the same age at baby group. Probably because he was prem and I'm wondering if he does have torticollis if that is what's causing him to struggle to lift his head up on his tummy.



I'll keep you updated with his progress anyway.

 

[Rosieroo]

He seems to be behind with his development when I compare him to babies of the same age at baby group. Probably because he was prem and I'm wondering if he does have torticollis if that is what's causing him to struggle to lift his head up on his tummy.

Same as Ella. She hated tummy time as it was painful for her to lift her head because of the tight neck muscle. She also didn't roll until after we started physio. Her crawling is behind other babies (she commando crawls) aswell