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Thread: Ned's Deformational Plagiocephaly

  1. #1

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    Default Ned's Deformational Plagiocephaly

    For those of you who aren't aware, Ned has had issues with not turning his head to the left. I first noticed it when he was six weeks old, and raised it with the doctor at my six week checkup. The GP said it was common and would clear itself up. Ned essentially would only sleep on one side of his head and turn his head to the right, not to the left at all.

    Two weeks later, it was still a problem, despite putting him the other way up in his cot, as well as putting all his toys on the left. He would prefer to look at a blank wall rather than his toys, as the blank wall was on the right, and the toys on the left. I asked my GP for a referral to the Royal Children's Hospital, as I couldn't afford to pay for a private paediatrician.

    Unfortunately, it took ten weeks to obtain an appointment at the RCH. The appointment was today.

    Between the GP visit and the RCH appointment, I continually tried to make him turn to the left. He now turns to the left when he is on his tummy or sitting up, but not when he is on his back. At the appointment (with a very well known paediatrician, who was absolutely fabulous!) I was told that Ned has plagiocephaly.

    The following information is taken from the RCH information that we were given.

    "Plagiocephaly is the most common craniofacial problem today. Deformational plagiocephaly means a mis-shapen or uneven (asymmetrical) head shape. Plagiocephaly does not affect the development of an infant's brain, but if not treated it may change an infant's physical appearance by causing uneven growth of their face and head.

    The two most common forms of treatment are counter positioning and/or helmet therapy."

    We are off to the Plastic Surgery Plagiocephaly Clinic on 6 March 2006, when we will learn how bad Ned's plagiocephaly is (I think it's pretty bad looking at pictures of other kids with the same condition), and whether or not he will require helmet therapy. Apparently helmets work best between 4 and 8 months of age, and Ned will be five and a half months at that appointment, so we really have to get a wriggle on.

    The paed said that we really should have brought Ned in earlier, which gave me the irrits because I had to wait so long for the appointment!



    Anyway, I will keep you all updated.

  2. #2

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    Divvy
    it was terrible they made you wait so long for an appointment. I would be irritated to.

    I saw a program on the special helmets used to reshape the skull and a fews day later I saw a baby with one on- the helmets are done up in kids characters and things.

    I hope it all gets sorted out for little Ned - did they give you any hints what to do in mean time or to just keep doing what you were doing ?

  3. #3

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    Divvy big hugs to you and little Ned. Thank goodness you got a good paed after all that waiting!

    How are you doing with this new knowledge? Has it sunk in? Hope you're all doing ok.

  4. #4
    Kirsty77 Guest

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    OH Div hun big hugs firstly to you all!Grrr at waiting so long for an appointment! :fuming: I really hope it all gets fixed up with minimal intervention. Poor little mite. Take care of yourself hun.

  5. #5

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    I hope the time flies til the next appt & in the meantime, is there anything they suggested to assist the situation?

    I hope your doing Okay lovey....

  6. #6

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    Yeah Divvy, all your baby buddies wish Ned all the best and hope they ring you with an earlier app cause someone cancelled!!! You never know luv...

    Extra lovely big and take care of yourself and your family..

  7. #7

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    Divvy, I am sorry you are going through this.

    We are going through a similar thing with Gussy. Gus' plagiocephaly has been graded as "severe" by specialists. He was actually born with right sided plagiocephaly - the nasty side effect of him being trapped down near my cervix without an amniotic sac/fluid for 51/2 wks after my waters broke before he was born.

    Gus' head has grown considerably worse in the months since birth. Like Ned, Gus has become very adept at wriggling away from props and bolsters we have used to nest him off the right side. So repositioning is not working (so far) for us. We've had close monitoring of it and have also been seeing a paediatric physio for therapy to try to increase neck mobility etc since he was about 8wks old.

    We've also had x-rays to check whether his skull sutures have fused - and so far they seem mostly ok. We're off to the Children's Hospital next week to the cranio-facial clinic to get him assessed for the helmet. Poor little guy!

    Will be thinking of you over the next few weeks as you wait for your appointment.

  8. #8

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    Divvy sorry to hear about little Ned. Big Hugs to you both.

  9. #9

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    Divvy - sorry to hear what is happening, big hugs and I will be thinking of you both for your next appointment.

  10. #10

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    Hi,
    My son had this also. My MCHN referred me to a Paediatric Chiro. I really didn't want to take him as both my paediatriacian and GP advised against it, but I felt so sorry for him as it was getting quite bad and he could move his neck properly.
    Anyway it was the best thing I ever did. After the first visit my son could move his neck properly, it turns out his lower back was out which affected this neck so he always turned to the right. In total I have been about 5 times and so far it has cost me about $300 but I have seen real improvement and the plagiocephaly has almost gone away.
    Hopfully the Physio treatment is similar and works for your son.
    Regards
    Corr

  11. #11

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    Thanks guys for all your comments.

    I have booked Ned in with my chiro and hopefully he will be able to help.

    Otherwise we are off to the clinic on 6 March.

  12. #12

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    Hopepefully it will help Divvy!!!

    Good Luck little Neddy boy!!!!!

  13. #13

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    I really hope that the Chiro helps.
    Although I see a normal Chiro for myself, (I have to my son is now 7.5 kg!!!) I took him to a Paediatric Chiro.
    I don't know if they are better than normal Chiro's but I do know they have this special machine they use on babies that is very gentle.
    They certainly are expensive, I think it was $90 for the first visit.
    However the improvement was worth it.
    Although I went to their Boronia clinic their main clinic is in Ivanhoe.
    If you would like the details I am happy to post them on the forum if this is allowed.
    Regards

  14. #14

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    Hi Divvy,

    Just giving a brief update re progress with Fergus' plagiocephaly.

    Fergus has been diagnosed with borderline moderate to severe plagiocephaly. After consultations with the cranio-facial clinic at the Children's hospital, two neurosurgeons, Fergus' neonatologist and also his paed physiotherapist we have been advised that Fergus' head is unlikely to completely correct without wearing a helmet. His eyes, ears, jaw, and forehead are all assymetrical due to the plagiocephaly.

    We had a plaster cast taken of Fergus' head this week so the helmet can be specially made to the contours of his skull. Apparently it only takes a week and a half for the orthotist to make the helmet - so on that timetable Fergus will probably be wearing it in about a week's time. It's amazingly how quick things start to move once they decide to put them in a helmet. Fergus was born with plagiocephaly - however it has grown worse with the effects of gravity. Although Fergus is 4 months old (corrected age), as he was born 7 months ago, his skull has had the effects of gravity and positioning working against him for 7 months. The advice we've had is that if a helmet is required as long as you get it on the babies head by 12 months of age you can expect really good results.

    I'll keep popping in here to see how things go with Ned's diagnosis/treatment plans after your consultation in March. If you're not happy with the advice given there, make sure you seek a second opinion.

    BTW, Is the chiro you are seeing a cranio-chiro? I haven't taken Gus to see a chiro so far, but am really interested to your views on how it's going.
    xx

  15. #15

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    Hi Kirsty,
    I've been keeping an eye on this forum to see how Divvy is going with the Chiropractor.
    Just to give you some information on my son, the plagiocephaly appeared soon after birth.
    As it didn't get better by doing the usual things of turning his bassinette around and putting his toys to the less preferred side, (in fact it got worse) my MCHN gave me a referral for a Paediatric Chiro when James was 4 weeks old.
    She told me how it really helped with the flat spot and his settling difficulties. She also told me stories of her other mums who had found that most Paediatricians don't believe in Chiros and generally advised against taking your baby to them.
    As James had other health issues which I had heaps of appointments for I put off the Chiro appointment.
    By 2 months when I saw my GP and he mentioned the plagiocephaly and James stiff neck and gave me a referral to a Paediatrician.
    It was just getting worse and he was having diffuculty breastfeeding and generally moving his neck, he also cries when I handled him roughly.
    I mentioned the Chiro to my GP and he said - do you want to waste your money?
    My husband was at the GP's appointment and he insisted that I did not take our son to the Chiro. I saw the paediatrician and he told me to sleep him on both sides - basically all the other stuff I was trying, he said if he gets worse he may need a helmet.
    Anyway James continued to get worse, so I decided that the MCHN knew best and I took him anyway.
    It was the best thing I had done. The improvement was immediate. It turns out his lower back and elbow were out, which was inhibiting his neck movement. That night he was moving his neck like he had never moved it before.
    The only thing I will add is that the Chiropractic Clinic I took James to was a Paediatric Chiro. The Dr I saw was a Fellow of Chiropratic Paediatrics (?) and the other Dr there saw was had a Masters in Chiropractic Paediatrics which I understand you can only get in the States.
    I'm sure other Chiros are good but I'm glad I took James to a Paediatric Chiro.
    James head is getting better everyday- it's almost gone. I look back at older photos and I see how the placiocephaly was affecting his features even in the short time he had it.
    Of course there is no guarantee it will work for you and don't expect your padiatricians to support you if you decide to try it, but when they mentioned that James may need a helmet if it didn't improve I decided to give it a go. I hope this helps
    Regards
    Corr

  16. #16

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    Hi Corr, Thanks for the information. Good on you for trusting your instincts! Sounds like it has made a massive difference - and must be soo much less traumatic for James than wearing a helmet! Did your MCHN refer you to the paed chiro or did you do your own research to find him?

  17. #17

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    Hi Kirsty,
    I got the referral from my MCHN - she swore by them. To be honest I was apprehensive in taking James but they were so gentle. I've just read the brochure from my Chiro and it says they are the first chiropractic clinic to provide care just for children. So I suspect their may not be many Paediatric Chiropractors around, so if your MCHN can't help you may need to do some further research. Sorry I couldn't be of more help.
    Cheers
    Corr

  18. #18

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    Neddy Ned (as said by Alex) is doing really well. We've been having weekly chiro appointments for the last month, and together with tummy sleeping (oops naughty mummy) and now that we're crawling, his plagiocephaly has really really improved.

    I'm so glad to hear that Gussy is getting his helmet. I've read so many great stories about them, apparently getting the cast done is the worst part. I'm not really worried if Ned requires a helmet, if he does, then it's fine with me.

    Corr, I agree with you about the chiro, he's made a great difference to Ned, together with the exercises that we've been doing (from the chiro and the physio). One of them involves holding Ned upside down for a while! Ned loves that one, but hates the one where we have to hold his head sideways for 20 seconds... every nappy change.

    We're back to the clinic next Monday, so will keep everyone updated.

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