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Thread: Craniosynostosis (Sagittal) in Older Toddler/Child

  1. #1

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    Default Craniosynostosis (Sagittal) in Older Toddler/Child

    Hello, I am new to this forum. My son - 3 years old - was recently diagnosed with a sagittal (single suture) craniosynostosis. He doesn't have any recognizable development delays but does have a somewhat mis-shaped head and the ridge along the top of his skull. We don't meet with the surgeon for about a month. Of course, I've been researching on the internet in the meantime. As most information pertains to infant treatments and concerns, I am curious if there is anyone on the forum that has been through this with an older child and willing to share a bit about their experience.

    Thanks for reading-
    Proud and worried Mom of Luke

  2. #2
    LisaG's Avatar
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    Hello! ANd welcome to CK! im sorry youve had to join us but there are some amazing girls on here full of knowledge! MY son also had/has saggital and his op was 10 weeks ago to the day! Stay strong hun we are here if you have any questions xxx

    Lisa
    Mummy to gorgeous Liam Baxter-
    Calvarial remodelling to treat saggital cranio 6 Oct'09 at Birmingham childrens hospital!!
    We're on the other side!!!!!!!!!!
    Hes my tough trooper!!!

  3. #3
    Sophia's_mom's Avatar
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    Hi and welcome to CK! I'm sorry you are joining us and maybe facing surgery. It is very scary, but also very fixable, and all our kids do so well. They bounce back so quickly, it really is amazing. If you want to connect with someone who has gone thru surgery with an older kid, you might contact Cindy (craniomommynbaby), her son has had two surgeries and the last was when he was 4. I know there are others here as well but I can't think of any more names. Good luck, we'll all be here to support you.
    Tessa - mom to Sophie and Ben
    Little Miss Sophie - 12/22/08 - Sagittal - Endo surgery 4/16/09 @ St. Louis Childrens
    Baby Boy Ben - 12/14/11 - No Cranio!

  4. #4

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    Welcome! I'd search this forum. Your question comes up pretty often, so you should be able to find more parents who have gone through surgeries when their children were older.

    My son was about 11 months when he had his surgery. Let me know if I can do anything to help. It is a wild journey and very stressful, but the kids usually do great as others stated.

    I'd love to see a pic of Luke. I'm glad he is doing well developmentally. How was the cranio diagnosed? Did you discover it or switch pediatricians? Looking forward to getting to know you! I'm glad you found us.


    Sagittal surgery - 02/26/2009

    Second surgery suggested to correct a bump on the head and fill in soft spots.

  5. #5

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    Apr 2008
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    Central Coast, NSW Australia
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    Hi Kelly and welcome to Craniokids.
    My little man is also a Luke (or actully Lucas but he gets Luke most of the time) and he was also diagnosed as an older child, he was 4 1/2 yrs old when we had our official diagnosis of sagittal cranio and he had surgery 3mths after his 5th birthday.
    Our Luke did not have any developmental issues but his head was becoming more mishapen the older he became.
    He is now 15mths post op and you would never know he had been through major surgery, his hair covers the scar completely.
    If you have any questions please send me a message and im more than happy to answer them.
    You will find lots of advice and support on this fantastic website!

    Vanessa:bouquet
    Mum to 4 gorgeous kids
    Zac 13yrs
    Drew 11yrs
    Lucas 6yrs- saggital cranio surgery CVR completed September 2008
    Ellie 2.5yrs

  6. #6
    joshmummy's Avatar
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    Hi and welcome to ck. sorry you are having to join us on this rollercoaster of a journey, but remember we are all here for you. my little boy josh had surgery for sagittal when he was 6 months old and recovered like a real trooper. June 2009 he was diagnosed with metopic so we are waiting for a date for a 2nd surgery any time soon. He will be 3 yrs old in may. From what i have read on the forums older children do just aswell as the younger kids with the surgery and recovery. Any questions feel free to ask away. have you got a date yet? how old is your little boy?
    Heidi-wife to Chris,
    mummy to
    Amara 15yrs- no cranio
    Romany 10 yrs- no cranio
    Joshua 6 yrs- sagittal-surgery at Birminghams childrens hospital in 2007
    2nd opinion with Oxford feb 2011, recommended no surgery but wait and see

  7. #7
    Jamesmom
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    Hi there! Welcome to the group. My son has right coronal, and had his surgery 7 months ago. Once you are able to ask questions to someone whos child has the same cranio and same age, you will feel a bit better. I really think we all need to see that what our child has, someone else has and is doing great now. Its so reassuring. I know i am very excited to have found these awesome strong girls. I'm sure they are going to be tremendous help.

  8. #8
    beccad's Avatar
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    Hello and welcome to CK. My daughter was 8 months old when she had surgery so I can't help you there. I just wanted to say hello and tell you that you have come to a wonderful place for support. There are many families here on all sides of this cranio journey and we are all here to help.
    Becca:
    Mom to three wonderful kiddos:
    Noah is 8
    Elijah is 6
    Julianna is 3(Left Coronal Cranio)
    Vanderbilt Children's Hospital Nashville, TN
    Surgery April 15, 2008 (canceled because of a cold and fever)
    Surgery rescheduled June 26, 2008
    2nd surgery April 14, 2011
    WE ARE ON THE OTHER SIDE

    www.caringbridge.org/visit/juliannaharber
    www.harberclan.blogspot.com


  9. #9

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    Dec 2009
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    Kansas City area
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    Thanks everyone for the warm welcome and feedback. I appreciate the encouragement and all the info!

  10. #10
    lovin' my lambdoid cutie boy! evergreenmom's Avatar
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    Sep 2008
    Location
    Greater Seattle
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    Welcome to CK Kelly!! Don't really have anything to add cause my boy is lambdoid but good luck and keep us posted!
    Kristin, Momma of two rambunctious cuties:
    Lucy born 3/05 "failure to thrive"- negative percentile on growth chart for weight 3/06 to 3/08
    Xander born 3/08 Left Lambdoid Synostosis and Chiari Malformation- Posterior CVR Surgery 2/09 w/ Dr Fearon and Dr Sacco at Medical City Hospital Dallas, TX (fought insurance and won in network gap exception) rant rant rant....

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