Plagiocephaly Advice & Support please! Post Reply

[ElleCee]

Hi, My 5 month old has just been fitted for a corrective helmet for his plagiocephaly (flat head) and we are all finding it quite tough going. Does anyone have any advice for how to deal with their obvious discomfort at wearing the corrective helmet, what to put on dry, sore skin affected by the helmet and what to say to daft people in the street!
Any advice gratefully received.
many thanks

[schmee]

Well done you for taking some action quickly to get his plagiocephaly treated - I know it can be difficult to get treatment, and five months is such a good time to start treatment.

My little boy went into a helmet at 7 months and came out at 13 months. Of course he doesn't remember it but we show him photos of when he wore his special hat and have talked to him about why he needed it.

If he is getting sores I think the best thing is to put vaseline on the areas to stop it rubbing so much. But your technician should be able to advise if it is rubbing too much and possibly create a little more space (I would urge caution about creating too much space though as it obviously needs to make contact with the head to be effective).

The comments and stares can be difficult, and I found it particularly difficult when older children made remarks or laughed and their parents didn't intervene. Or half informed people saying - oh yes, it's because he spent to long in his car seat isn't it. Um, no, it's because he had inter uterine growth restriction and undiagnosed torticollis... grrrrr. I had to fight the urge to get cross or overprotective as obviously it wasn't hurting my baby really and it would upset him more if I got upset.

I would just ignore it and smile if people make passing remarks or stare. If people actively engage with you, I just used to explain that he was squashed in the womb and that the helmet is helping is head back to the shape it would have been.

The hardest things I found were not being able to kiss his head properly during the day - but that made it all the more special during the hour that the helmet was off; and the smell of the helmet - I cleaned twice a day with the stuff they gave me but I'm afraid it did honk towards the end. Medicated shampoo is helpful I think.

Good luck with it all - I'm sure the time will fly with it on, especially as you started treatment early. You will be so pleased when his head gets back in the normal range.

If you want to talk me, pm me and I'll send you my number.

[MGMidget]

Five months is a very good age to start - you should get a very good result. My son went into a helmet at nearly 9 months and was out of it just before 14 months. He was a bit assymetrical (rather than having 'flat head'), having had a bit of a nasty instrumental delivery which seemed to make him a bit wonky. By the end of it he was technically 0% assymetrical according to their measurements although I could still see a slight difference if I looked closely (but noone else would have noticed).
As he has got older he now looks perfect.

My son didn't have any helmet rubbing problems so I would definitely point these out on the next visit to see if they can correct this. They always looked at my son's head each visit and asked about any signs of rubbing/soreness. As far as getting used to it goes, I was fortunate that my son seemed comfortable in it and actually slept through the night for the first time in the helmet so it was bliss having him wear it! I think an important thing to be aware of is that you need to dress your son in less clothes especially when sleeping or he will be too hot and hence uncomfortable. As babies lose lots of heat through the head, the helmet acts as an insulator - so don't make the mistake of trying to dress him up nice and warm all the time. If you can get your son comfortable in the helmet he will quickly become used to it and forget it's there.

As far as dealing with comments from passers by is concerned: Some people stared at my son in a helmet and some assumed I had him in a helmet to protect him from injury or because he had a weak skull. As he got older people even assumed it was a cycle helmet! However, these comments didn't upset me as I thought they were fairly natural assumptions and not meant to be nasty. I used to give a simplified version of why he was in a helmet if engaged in conversation about it and I don't think I ever had anyone make hurtful remarks (although maybe I'm thick skinned or deaf!). If people do make nasty remarks remember that your son is too young to understand or care. At the end of the day it is a temporary thing so just focus on the fact that he will be even more gorgeous when he comes out of it!

[KiwiJane]

Yes, well done on starting early, you will get much better results.

We started at eight months and J wore the helmet for four months. We didn't get a massive improvement but it was enough to make it worth while and really made a difference - so much so that I was very glad we had it done. His head will always be out of shape, but looks much better now. We could have continued for a while longer but things weren't improving and he also has other problems (a long narrow head) which made it harder to correct.

We had a lot of trouble with rubbing/heat rash and unfortunately there is not a lot that could be done about it. The advice is to use Sudocrem or Vaseline on the areas. J had particularly bad rubbing on one 'sideburn' piece of his helmet and some around the ears and back edges. Every time they went in they did say they would try and do something about it, but it never really improved. We used Neals Yard Baby Barrier every night (similar consistency to Sudocrem) and it did seem to help.

As for comments, if anyone asked I just said its because his head wasn't growing properly and people never really questioned much after this. I did avoid explaining the head shape issue so people couldn't give advice about this 'I knew someone who had that...' blah blah blah! You will find most nappy valley mums have either seen one before or don't take a lot of notice, kids do notice and are interested in it but he liked the attention . I did discourage other kids from touching it sometimes if they looked like they were going to pull at it (especially the catch) but most other mothers are quite aware of this too.

As for staring on the street, I figured he didn't notice so I wasn't going to get too worried about it - I think you do get immune to it after a while. They do get more used it after the first couple of weeks. There is a support site, let me know ifyou want me to find the address and I will. I found it a helpful read at first as there are parents who posted saying my baby hates it - then came back a couple of weeks later and said that its all fine now.

TBH I can't say I miss it BUT we are very glad we did it.

[ElleCee]

Many thanks to all three parents for their comments, I really appreciate it.

I posted this when the helmet first went on and both my son and I were finding it pretty tough, since then he has taken to it, is sleeping much better and is generally happier, if he is happy then so am I so things are much much better.
We still get stares which are harder to deal with then people just asking outright but everything is copable with as long as he is happy. It is probably wrong of me to think bad thoughts about the persistent starers but it helps me to get by! When I look at my son all I see is a perfect little boy and all anyone else sees is the rotten helmet, it's good to hear that you are all happy with the results and glad you did it though.
Many thanks for your suggestions and tips, we'll use Neals Yard barrier cream on the sore bits and stick with it, fingers crossed it will only be on for another 3 months.

Have wonderful christmases!

[calgary]

We are now looking into this for my son and I would much appreciate any recommendations on clinics used.

Thank you!
Calgary

[ArtfulToddler]

Not sure if this is much help but one of my sons had the same thing and we took him to see a specialist at around 5 months. Rather than the helmet we were reccomended to use the sleep curve mattress which is a topper that you put on top of your normal mattress. It stops any pressure from being put on the head and so allows the flat part to normal out.

I probably still have my mattress if anybody would like to have it. I don't want any money for it if it helps. It certainly helped my son and now the flat spot has gone.

[ElleCee]

Hi,
We got a helmet from http://www.ossur.co.uk/ in Arthur Road, Wimbledon and had marginal but ok results. one year on and my son's head is still slightly assymetrical but only my husband and I can see it really so with hindsight I'm not sure I'd put my us all through the helmet experience again as we all found it quite tough.
My son was born with very weak neck muscles on one side which caused the plagio and I would thoroughly recommend specialist physio from Kerry Barrow and her team at Therapy4kids in Raynes Park.
If I can be any help at all pls do DM me as I'm now an expert on plagio (!) and I'm sure you are facing some touggh decisions.