Plagiocephaly - what to do?

[BubsMaw]

Hi, my DS (3 months) has worsening plagiocephaly. He has a very strong preference for facing to his right, I've tried repositioning but he resists this, and turns straight back to his preferred spot. He hates tummy time (I perhaps need to try harder with this), and won't settle for side sleeping. Much as I love holding him and cuddling him upright I don't have as much time for this as I'd like so he does spend a lot of time in a bouncy chair, doesn't much like the babybjorn carrier. We've just been to the GP who's made a referral to paediatrician, but it will be 2 months or so before he's seen. GP said he's not expecting any treatment to arise, just to rule out any other issues (presumably bone fusing or some such). Could anyone reading please share your experiences with me, what should I do/who should I go see? I don't mind paying to see someone privately sooner, but don't even know where to start (Osteopath or Physio or other?) I've seen special pillows and sleep wedges etc. on Amazon, but aren't these associated with a risk of SIDS? Also I've read of parents doing exercises to relieve muscle stiffness, any ideas what these exercises are? I'm not even sure if DS has an issue with stiffness or whether it's just preference making him face the one way continually. Any help awuld be appreciated, thanks!

DS2 was dx with plagio when he was 9 months old. We wanted to get one fo those helmets for him, but the paed was really against them, not much known about them etc. Paed just said that it will look ok once he has hair

Anyway, we saw an Oseopath and had a few sessions there, but that didnt make much of a difference.

He is 4 now. His head is still flat on one side, although not as bad as it used to be. I can still notice it, and his head looks odd when he wears hats. Wish we had got the helmet now

Bubsmaw - sorry no experience of plagio but you might find this of interest as an alternative to pillows/wedges if that is a recommended route?

www.safetsleep.com/medical-facts/

I bought one of these when DD1 started rolling over but couldnt get back and woke herself and us up every 5 mins all night! I have also used it for DD2 - it just velcros round the chest but doesnt restrict head, leg or arm movement. There is a case trial for its use with plagio if you scroll down the page

hth

Hello Bubsmaw
Just wanted to share my experience with you.
DS (now nearly 4) started to develop a flattened left side of his head when he was about a month old, he too had a strong preference for sleeping with his head facing towards the left. I think in hindsight he was born witha case of torticollis which if i had known at the time might have responeded to some paed physio.

After some initial research etc we tried repositioning etc but really and truly it was never successful as he would wiggle and move straight back to his original spot. We didnt use wedges simply due to my fear of SIDS etc.

When he was about six months old I became more concerned as he was developing slightly 'bulging' features on that left side of his face, almost as if the bone growth that was trying to happen towards the back of his skull was compensating at the front. We took him to our gp who basically said 'its cosmetic and wont show when he is older'. We did ask for a paed referral but cancelled it as by that time we didnt have the time to wait the 8 weeks or so for it to come through.

Again did a lot of internet research and looked at numerous plagio forums and eventually went to see a lovely lady (very well qualified in her field) down in Cardiff, had DS head scanned (its non invasive, not like a cat scan or anything) and DS was found to have a moderate verging on severe degree of asymmetry. She told us that as far as the (limited) research available indicated, there was about 50% chance of DS plagio improving but that it was impossible to tell if he would be lucky, or indeed how much better it would get, if at all.

We were sent away to think it all over and we made the decision to have him fitted with a 'Starband', which he needed to wear for 5 month. Google it and have a look yourself, but its basically a 'helmet' made specifically to correct the individual childs head. One very important thing to note is that the earlier you begin treatment the less time your child will be in the helmet, 5 months was quite a long treatment time as DS was 8 months when he eventualy went into his.The starband cost about two thousand pounds so not a light undertaking for us, but we did without other things in order to fund it and had a bit of help fopm family.
Ds never ever showed any signs of distress from wearing his and after 5 months his plagio had come down onto the cusp of 'normal', importantly for us his facial asymmetry was completely resolved.
He is a happy healthy little chap and you would have to look extremely closely to notice that he still has a very slightly flat head on the left.

Whether or not to treat is such a personal decision, we did it because we didnt want to look back in years to come and regret not having tried something, so for us acting was better than not acting, if that makes sense.
My stance is also that we would not think twice about getting, say, orthodontic treatment for their DC so why is this seen as different. There have been no reports of any adverse events for babies from wearing their helmets so there is not much of a risk/ benefit analysis to be done, except financial!

Good luck and feel free to post again if you want to know more.

Whith my older son I had to put his cot-bed next to our bed and he was turning his head towards me. Sometimes I slept with my feet in the head because I wanted my son to sleep on the opposite side of his head.
Also I bought him a little pillow. I also made a pillow for him using a soft terry towel. I folded it a few times; then I would put the towel under his head; next step I would fold it on one side so he would not turn his head into that side; sometimes I would do it from both sides so he would sleep on the back of his head. Changing positions helped him a lot. Good luck!

Hello, this is my first time posting, but i wanted to share my experience with you.

My son has positional plagiocephaly as he had torticollis from birth. The right side of his head is noticably flattened.

He also has metopic craniosynostosis (fused metopic suture) which again was diagnosed shortly after birth. The plastic surgeon we have seen regarding the cranio has told us that the plagiocephaly would correct itself over time,and actually if we all shaved our hair off, few of us would have a perfectly shaped head. We were strongly advised not to use the pillows you refer to or indeed any type of pillow for a small baby.

Ds has regular physio to correct the torticollis. The physio also advised against the use of helmets, which are not available on the nhs in our area.

From what I've gathered over the past few months, its really important to rule out a problem such as toricollis quickly as it can affect lots of areas of a babies development.

I hope I've helped a little.

Our experience with DS was very similar to guiltyandfedup - DS wore a helmet for 6 months, asymmetry of the face was corrected but still a slight flat spot at the back (went from 19mm to 4mm asymmetry). We went to ahead4babies.

I know the helmets can be contentions (our health visitor knew nothing about the condition, our GP was skeptical and reading online gives loads of differing opinions)- but I'm very glad we did it (although I hated DS1 having to wear it). I also second guiltyandfedup's comment on helmet being similar to orthodontic treatment.

We didn't want to take the risk of DS having a noticeably flat head his whole life - so that sealed it for us. It's a tough decision though, so happy to answer specific questions if you have them.

Hello again, I just wanted to add that my son is now 9 months old and we are already starting to see a noticable difference in his head shape. His ear used to be slightly pushed back and very flattened to his head. We've noticed a difference and so has his physio.

I suppose that because his cranio is so noticable and something that can only be corrected by surgery, we don't really worry about the plagiocephaly.

Feel free to ask any questions.

Hi my friends ds had a very flat head on one side as a baby. She was very worried but like others was told by gp that it sorts itself out as they get older. He is 5 now and although not as bad as when he was a baby it is still noticable. The gps and paeds seem to be really against the helmets even though they do work. I think they are ignoring the problem to a certain extent especially in more severe cases. Good luck in what you decide.

Many thanks for all your helpful replies. I have a few further questions - I'm wondering why is it that Physios dislike plagio helmets? (I'm hoping to avoid going down that route but hadn't ruled it out). Also does anyone know can I self refer to a physio or go privately (thinking of getting possible torticollis checked out), I feel 2 months is a long time to wait for NHS when we're in this critical time window. And what about cranial osteopaths, has anyone had any positive experience using one, I'm afraid some of the websites I've found make it all sound a little like quackery. Other thought's I have include getting a bumbo seat rather than bouncy chair, can a baby sleep in one of these for a daytime nap? Or perhaps an activity centre or jumperoo type thing, though DS may still be a bit young for these. Thanks again!

The physio I see first of all said the helmets were very expensive for something that they believe would correct itself over time as the child starts sitting up, moving around and spending less time sleeping during the day.

Regarding the torticollis it sounds as though you should get this checked out. I found out about it after the consultant we see commented on the way my son held his head to one side, then at his 8 week check my gp made a comment too. When I got home i did some googling and found out about torticollis. The images were so much like my son. I rang the health visitor and suggested it to her, but she just said... no he would be in pain if he had a stiff neck. The next day i rang the consultant's secretary to see if I could have an appointment sooner because I thought it was torticollis and she booked us in for the next week.

The consultant felt his neck and there was a small lump in the neck muscles. With prompt physio it can be sorted out easily, but as I understand it, if left untreated it could affect the whole development of the face and eyes.

I think the physio said a health visitor can do a referal but I'm not sure.

Hope you get some results soon.

It can certainly be an overwhelming feeling when your child is displaying symptoms of plagiocephaly (flat head syndrome) or torticollis. Your pediatrician should be able to offer you some resources and advice, but in the meantime, there are plenty of techniques you can implement to help get your son moving his head to both sides instead of favoring a certain spot. When feeding your son, try alternating the arm you hold him in, and encourage him to turn his head to a different side each time he is fed. Alternate the side of the changing table you stand on when changing his diaper to encourage him to turn his head in alternate directions in order to look at you. Make sure to implement plenty of supervised ?tummy time? during the day, and try massaging your son's neck when he is relaxed and calm to encourage stretching on both sides of the neck. Finally, try to place interesting and stimulating toys in new locations around his crib/room so he will have to turn his head different directions in order to see the toys. Education and awareness are key to ending plagiocephaly