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Thread: Questions for you all

  1. #1

    Default Questions for you all

    My 9 month old dd has been wearing a helmet for about 4 months due to severe plagiocephaly She has toticollis and that was the cause of it. She is seem monthly for the helmet. I know the guy that sees her about the helmet doesn't check her soft spot, but does her head growth. She has been really slow and steady with her head growth. About 30%. Getting her out the helmet is taking a well because of her slow growth, but she is steady and she is a small baby any ways. Well I took her in yesterday and the doctor asked if we ever had a catscan done on her head and when her soft spot closed. I don't know when it closed. I do recall our old doctor mentioning her soft spot at 6 months, but just said to watch it. If there was a major problem with her soft spot would we not have seen it earlier. Do you feel this is something to worry about. She has an appointment for her helmet today and I will ask then, but am not sure he even does anything with the soft spot. Could the helmet be linked to the soft spot some how. I have her 9 month next week and I will be sure to ask her doctor about it too.

    Thanks!
    Sheri
    Katrina 11-07-07

  2. #2
    At Peace mattricia is on a distinguished road mattricia's Avatar
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    Great question, Sheri. My gut tells me that since the helmet is slowly changing the shape of the head, it could certainly close the soft spot. I'd definitely follow up on this and get the CT scan done. Good luck! Please keep us posted on your daughter!

    -Tricia


    Henry Grant - 2.5.04

    Jackson Richard- 7.2.07 - sagittal craniectomy/CVR on 5.14.08 @ Mott Children's (UM) - Drs. Muraszko and Buchman



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  3. #3

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    Hi and welcome!

    Our pediatrician said that it can be normal for a baby's soft spot to close early. So if the small or absent soft spot is the only issue, they usually just watch and monitor for normal head growth. but combined with a misshapen head and/or abnormally slow growth it can be something that you want to investigate further. Not saying this to frighten you because it is probably normal, but I know that there are at least 2 babies here who were initially misdiagnosed with Plagiocephaly and later found to have cranio. I know one is Jeremiah's daughter...can't recall who the other one is off the top of my head but maybe someone else will chime in.

    Were you ever seen by a cranio-facial surgeon or neurosurgeon prior to starting helmet therapy? if they didn't do a CT I'm assuming it was because it was a clear cut case of Plagiocephaly but if you have concerns it sounds like asking for referral to a specialist might not be a bad idea...just to confirm that everything is progressing as it should and that they are not missing anything. Many pediatricians are not very well informed about how to make a differential diagnosis between Craniosynostosis and Plagiocephaly.

    If it is cranio, not plagiocephaly you really won't see much, if any, improvement from helmet therapy. If anything, it will continue to get worse. Does your helmet place take photos of her progress? If not, you should take them on a regular basis yourself. You can look at the ones in my profile to see which angles are probably helpful in monitoring progress.

    Good luck with everything. Hopefully your pediatrician will hear your concerns and have some answers for you.
    Patrick - 12/28/07

    Briefly misdiagnosed with Craniosynostosis
    Final diagnosis of plagiocephaly with 12mm of cranial vault asymmetry and a scaphocephalic head shape, probably from in-utero molding.

    Helmet Therapy Graduate! 10/08

  4. #4

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    Thank you so much for taking the time to answer me. My dd has toticollis which is were she only moved her neck in one direction. Basically she layed on her right side all the time, no matter what we did. She would just lay on that one side and wouldn't move her neck, so it really flatten her head. We complained and and complained about her head flattness and neck movement at about 2 months, but her doctor blow us off. An ruptured ear drum and 1 night hosptial stay finally got her old doctor to realize she had a problem. Her head was so flat on the right side, that every doctor that saw her in the hospital said she needed a helmet. She was off the scales with her misshappen head. It is only really flat on the right side. Well she nows has her helmet and is getting PT for her neck and the other delays the necks caused her. She is getting better with the helmet. Her head looks so much rounder. But it is slow for her since growth is slow. Here numbers were all plus 5s and now she has 2 4s and 2 3s, so we are making our way to her getting all 2s, which is our goal. Hopefully with todays appointment we will see better numbers yet. I guess the soft spot just kind of though me for a loop. She has been though so much with the torticollus, ear infections, reflux and her helmet, that I hate to think of her going though more. I am going to be sure to ask about it. It may be nothing.

    Sheri

  5. #5

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    well that certainly sounds like clear cut plagio then. And it sounds like it is working slowly but surely. I hope the soft spot closing is just a normal part of her growth and you can relax. Good luck!
    Patrick - 12/28/07

    Briefly misdiagnosed with Craniosynostosis
    Final diagnosis of plagiocephaly with 12mm of cranial vault asymmetry and a scaphocephalic head shape, probably from in-utero molding.

    Helmet Therapy Graduate! 10/08

  6. #6
    Cranio Mentor and Azia's Mommy Tawnia has a spectacular aura about Tawnia has a spectacular aura about Tawnia's Avatar
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    I wouldn't worry. It just sounds like its nothing. Have it checked out for sure but I don't think you need to worry!

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