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Thread: plagiocephaly

  1. #1
    donna_wool Guest

    Question plagiocephaly

    Hello all

    My son is 4 months old and has a flat spot on one side of his head due to SIDS and the new rule on putting babies to sleep on their back. I have read a lot of forums and visited many information sites and have spoken to lots of mums about their babies also having this flat head problem. My girlfriend works at the RCH and sees many babies fitted with correction helmets. If I (we) had been informed properly at the beginning (from the hospital or from SIDS) before my (our) baby was born about the importance of re-positioning the baby's head from side to side to avoid this flat spot, I would not have had a problem with his head now. Isn't prevention better than cure? Now I need to spend time and energy chasing appointments, getting referrals, arranging a helmet to be fitted onto my son's head and all the fuss - all this could be avoided if I was better directed at the beginning from the experts. There was a lack of guidance from the hospital and the classes that I took at the hospital and SIDS needs to reach out there and educate the mums more clearly the importance of plagiocephaly and preventing it. I am taking my son next Monday to the RCH (after waiting 1.5 months) to see the plagiocephaly specialist. I would like a helmet fitted on his head to round it up. I will let u know how I go and what the specialist says about his misshapen head.




  2. #2
    Cath78 Guest

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    I totally agree with you donna about the lack of information about this!! I was told by a friend about this who had a baby 6 months before me. This was the ONLY person who told me about this issue - needing to move their heads, also moving the cot to make them move their heads especially if they look towards the door etc.

    Unfortunately I still did not avoid a flat head with my DD! She was in a hip spica cast (from nipples to ankles - for congenital hip dislocation) from 7 weeks old and she is still in a brace for up to 16 hours per day. This has meant she has not been able to get off her head much or roll onto her side - she is fairly well anchored down!

    So she had a flat head and its worse on one side.

    I have made a few discoveries to help this.
    *i lie her on her side with a pillow behind her to play or watch tv (bad i know) but this makes her go on the good side
    *lots of sitting up time
    *the MCHN told me to use a rolled up bunny rug under her shoulder to hip to make her even out this spot. use it wherever you are pram, bouncer etc. I have also used this for day sleeps when i can keep an eye or her. it justs props her to the side a bit to get off the bad side.
    *her cot mattress was really hard too so I used a woolen underlay. i know some SIDS things say not too but i've been told its due to the dust mites. so i put it out in the sun for 1 day a week and give it a good shake. this has really helped and the hair is now growing over the bald spot.

    Due to her hip and some other conditions we see a few different specialists. they all comment on her head but all of them say not to worry (its hard though!). they say head shape can change until up to 1 year old and as long as she's got the soft spot at the front its okay as it can still change. The orthotistit (spelling?) who made and adjusts her brace also runs a helmet clinic and we keep getting him to check it when we see him. He has also said not to worry and that they generally don't do anything until the face is getting distorted (not sure distorted right word to use but can't think of any other).

    Anyway hope my story and or tips helps. I am just doing anything i can to avoid a helmet! they have to say on almost 23 hours per day and she gets enough strange looks with her legs how they are at the moment.

    Let us know how you go with it all,
    Cath

  3. #3

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    Donna, My son has a helmet to correct his plagiocephaly. He's been wearing one since March. If you have any questions I'd be happy to help answer them.

  4. #4
    donna_wool Guest

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    Hello Kirtsy

    Yes, I would like to know more about the helmet used to correct plagiocephaly. My husband and I would like my son's head to round out even if it means wearing a helmet. Next Monday am I to see the specialist at the RCH and I will let u know how I go. But, how bad was your son's head in March and how is it looking now? How old was he when he had the helmet fitted and are you happy with the results so far? How long would he have to wear it and does he mind wearing it? Me and my husband don't care about other people giving us and our son dirty looks. If it means he will have a round head by the time he starts school, I am all for it.

    Thanks Cath

    All the information u have given me is vital, even though I have heard it all before and I am also practising it with my son - I am also placing my son on his stomach while I am watching him during his day naps, and turning his head to the side his neck is a little stiff. I need to strenghten his neck muscles on the left side where he uses them less, due to me turning his head to the right during the night when his sleeping to avoid the flat spot. It makes me wonder what position God intended babies to sleep on - back or stomach. Stomach and have the risk of SIDS, or back and have to correct flat head problems.

  5. #5
    Cath78 Guest

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    Hi Donna,

    I know what you mean - SID risks or flat heads - you cann't win.

    I'm sorry donna and kristy- i didn't mean that there was anything wrong with wearing a helmet. I just find people are horrible they way they stare and I've had enough of that with my child in plaster and now a brace (her legs look like froggie legs!). Its like they think I have done something to her. I just don't feel like I can go through it again - me being selfish in a way I guess

    I'd be interested to know how long they have to wear it for. I was told around 23 hours a day but surely it can be less.

  6. #6

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    Fergus's plagiocephaly was regarded as one of the most severe sorts by the experts. Ours was caused inutero. I prematurely ruptured the amniotic membrane (ie waters broke) 6 wks before he was born so he didn't have the amniotic fluid filled sac to cushion him while in the womb from that point until birth. Without the sac his poor little body was squashed into my pelvis with the end result that his body and in particular his head was quite misshapen. Fortunately the rest of his body slipped back into place within a few weeks after birth. To compound the effects inutero, Gus was born 11wks prematurely. Being so premature meant his bones were soft and malleable so the effects of gravity seemed to compound the problem with the shape of his head while he was in the incubator etc for the first three months post birth.

    Fergus's plagiocephaly was so bad by that time that we were advised it would not correct on its own and might not reach a "normal" (whatever that is!) shape even with the helmet.

    Fergus started wearing the helmet at the beginning of March when he was 5 months corrected age (this would be his age if he had been born in October rather than prematurely in July. His actual age at that point was 8 months). He absolutely hated the helmet for the first couple of months and worked out how to take it off himself. It was a HUGE HUGE HUGE battle to get him to wear it. After lots of persistence and a very patient and talented orthotist who designed a chin strap to keep him from ripping the helmet off, Gus is now happily (yes happily!!) wearing it 22-23 hours a day. In fact he actually seems to prefer it on as it helps cushion the effect of the inevitable toddler tumbles and bumps into coffee tables etc.

    We are now onto our third helmet (it needs to be recast as he outgrows each helmet). His head shape has changed dramatically in the 8 months since March. It still has quite a way to go. Fortunately his fontanelle is still open so there's still time/room for more skull movement. We have now been told that it will (hopefully) reach an acceptable (if not "perfect") shape prior to the fontanelle closing.

    We got to choose from a range of patterns for the helmet. We chose one with cartoon pictures of animals (lion, panda etc). The exterior of the helmet is hard plastic and the interior made of different densities of foam. Where the skull needs to be pushed it is hard foam and there's soft foam where the flat spot is. As the skull plates shift in response to the pressure exerted by the helmet and natural skull growth the helmet needs adjustments. Sometimes we need to visit the orthotist a few times a week for adjustments and then there can be periods where not much seems to change for two or three weeks so there's not need for adjustments. I find the helmet needs adjusting when there are red whelts that don't fade quickly once the helmet is removed.

    We weren't ablt get Fergus immediately wearing the helmet for long periods. We had to build Fergus's tolerance gradually. He now wears it 22-23 hours a day. I give him a break in the morning and the afternoon and occasionally in the middle of the day. One of the hardest things to manage is clothing changes. I'd advise stocking up on clothes that don't need to be put over the head for the early period when bubba's adjusting to wearing the helmet. As the less often I needed to take the helmet off for incidental reasons the easier Fergus seemed to be able to "forget" the helmet was on. In the early days he'd really fight me putting it back on. Was terribly hard to keep reminding myself that it was in his best interests to be wearing it. I wish in hindsight I'd been a little more forceful/assertive with Fegus in the early weeks as I think it took us longer than it needed to getting him "weaned" onto the helmet.

    The helmet attracts a lot of attention but Gus seems to view it as positive attention. He is a very sociable little boy and having the helmet on seems to be an ice breaker for strangers. I think it's led him to expect everyone he meets to talk to him and smile at him. He's taking quite a while to catch up from his tough time inutero/premature birth and is still really small (ie 6.4kg at almost sixteen months!!). His smallness probably also accounts for a lot of the attention he attracts as he behaves appropriately for his age but looks like a MUCH younger baby.

    The explanation I give curious strangers for the helmet is as follows. "He has a flat head. The helmet works to push the bones back into shape. The helmet is kind of like wearing braces for crooked teeth..."

    I'd be happy to email you a photo of him wearing the helmet. If you'd like this, please me know which email addy to send it to.
    Last edited by Kirsty EW; November 17th, 2006 at 09:16 AM.

  7. #7
    donna_wool Guest

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    Hi Kirtsy and Cath

    Thankyou very much for your replies. At least I am not alone with the same problem. I now hate to think how my son will go with handling and accepting a helmet - I do hope he adjusts to it. Did Gus have his fitted at the RCH? It is good to hear how he doesn't mind wearing it now. I wouldn't worry about people looking/staring at your son. It is humans nature for people to look at something that seems different or unseen before. I had to wear hearing aids since I was 6 years old and hated being teased at school and always tried to cover them with my hair. It got to a stage in my late teens/early twenties that I had enough of 'hiding', and thus started tieing my hair back and was proud to show them off. My self-confidence improved tremoundously and people respected me for who I was not because I wore aids. I also realised that I needed my aids to hear - and became an important accessory in my life and didnt care what others thought - if they made a comment, I made one back about them (something I was too terrified to do when I was at school). My son may get looks from other people but importantly, I won't be seeing those people again and my son will in the long run have a normal head shape and will thank me for it. Life is too short to worry about what others think - people/friends come and go, but your kids are there for a lifetime .

  8. #8
    donna_wool Guest

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    Hi All

    It just so happens my son has mild plagiocephaly and the RCH won't put a helmet on him - they say at just 4 months old, he has plenty of time to improve with hands on work ie. tummy time, placing a towel underneath the cot matress to tilt it so, the baby's head falls to its better side, and having him upright as much as we can during the day without applying pressure behind his head. They only put helmets on babies with severe plagiocephaly. I hope his head will correct itself in time as they say at the RCH. Is there somewhere else I can take my son for a second opinion? Does anyone know of a specialist that handles plagiocephaly in Melbourne other than at the RCH? The internet doesn't have any other contacts. Thanks.

  9. #9

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    Donna, my son Ned has plagiocephaly. I'd recommend that you take your son to a paediatric chiropractor. Ours made Ned's head 90% better with manipulation and exercise within a 6-8 week period. Magic.

    Best wishes. ALso, check out my thread under "Ned's Deformational Plagiocephaly" in this forum, there's some handy hints there.

  10. #10

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    My sons head was really really bad and actually changed his facial features a little. It made one eye and ear appear bigger. He's 2 1/2 and you can't tell at all now. We didn't do anything except lots of tummy time and encourage him to keep his head on the other side when laying down by placing bright coloured objects in that side within his range of vision.

  11. #11
    Cath78 Guest

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    Thats reassuring to hear Natalie. At what age did he seem bad and then turned the corner? I keep getting told it will get better and head shape can change until their a year old. Chloe is just over 10 months now and even though its a bit better, when you look at her from directly above its not so good and I'm feeling like i'm running out of time IYKWIM?

  12. #12

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    He was about 5 months when we took him to the paed who completely set my mind at rest. By the time he was around 15 months it was normal, I think.

  13. #13

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    My daughter ruby was seen by a paeds dr today and has a referall to see a plastic surgeon as 1 of her skull sutures has prematurely closed.She may need to have the suture line reopened in surgery.They will most liekely do a catscan first but even then she will need to have a short acting anesthetic.Thats beause of a bad flatspot on the back/side of head. She too favours one side to the other and her head can turn one way more easy.Is this same sort of thing? Do you know anyone else on BB this has happened too?

  14. #14

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    Hi Caddie,

    I'm sorry to hear Ruby's sutures have fused. We had advice early on that this with the case with Fergus, however once he was looked at by a Paed Neurosurgeon and had several head scans, the Paed Neurosurgeon said the sutures had not in fact closed. Would be great if this was the same for Ruby.

    So as Fergus's sutures had not in fact closed I haven't actually had any personal experience with this. I read quite a bit about it when Fergus was first "diagnosed". I wish you guys all the best. I understand they have fantastic results with opening the suture. About a year ago I read some posts in other forums from parents who said the operation ended up being much less traumatic than they anticipated.

    I personally find any operation with Fergus (he's had one so far and has another one to go - not related to plagiocephaly) quite hard to deal with in the anticipation phase. Then the recovery phase seems much less frightening than expected.

    I wish you all the best with Ruby. Please keep us updated from time to time as to how she/you are going. xx

  15. #15

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    Thanks kirsty,i am really hoping the same result in that it hasnt closed.The craniofacial surgeon will decide on a catscan if needed to thouroghly check this is the case.If it is surgery then im glad other mums and dads have said it was better than expected.Just a waiting game until the end of the month.Thanks for your response it means alot.

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    Best of luck, Caddie, I hope all goes well with Ruby.

  17. #17
    Freddiemum Guest

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    Hi, I've just read your posting and I fully understand the position you are in and am in complete agreement with your comments. In "waiting to see if it corrects itself naturally" my son is now a year old and still has a flat spot on the back of his head, even though he sleeps on his side and has been sitting up for some time. Please, can anyone recommend a specialist in NSW? Also has anyone had success with treatment at this late stage?

    Thanks

    Melanie

  18. #18

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    Mel,after going to a specialist at royal perth a couple of months back they decided that it was only a bad flat spot and in time will correct it self.I have seen an improvement but when her hair is wet its more noticable.He told me she could be up to age of 4-5yrs before it will go away and even then she may always have a slight funny shaped skull.
    However,still see your dr becuase i think even at the age of 1 theyre skull bones should still be able to move.

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