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Forum: Craniosynostosis Chat

This is the place for general questions, discussions, and updates about craniosynostosis.

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  1. Cranio Gear

    A place to find items made just for our special little ones, most created by members. Have a unique cranio product to share? Post it here!

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    • Threads: 7
    • Posts: 76

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  2. Craniosynostosis Without Surgery

    Was surgery not recommend w/ a diagnosis of cranio? Or did you choose not to do surgery? This is the place to share your stories and questions.

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    • Threads: 100
    • Posts: 1,186

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  1.    

  2. Sticky Thread Sticky: Importance of Taking Your Cranio Kid to the Eye Doctor

    You hear all the time about the importance of routine pediatrician checkups and taking your child to the dentist, but you rarely hear about the...

    Started by jjmc123‎, 08-08-2011 02:29 PM
    10 Pages •
    1 2 3 ... 10
    1 Attachment(s)
    • Replies: 97
    • Views: 8,920
    abbiesmommy
    Yesterday, 07:47 PM Go to last post

  3. Exclamation Sticky Thread Sticky: Creating Surgeon Listings

    Hey everyone! Can you do me a huge favor. We are putting together a listing of surgeons and their contact info we have used for cranio. Trying to...

    Started by Jennifer‎, 06-20-2011 05:54 PM
    • Replies: 7
    • Views: 2,270
    Lori999
    04-22-2013, 09:26 PM Go to last post

  4. Sticky Thread Sticky: We Have Craniosynostosis Awareness Ribbons!

    Hi Ck'ers! *Please do not change the design of the ribbon. We have had several parents receive ribbons with incorrect images on them due to...

    Started by Jenny‎, 03-16-2011 03:06 PM
    2 Pages •
    1 2
    • Replies: 16
    • Views: 5,723
    hondasimami
    05-06-2012, 09:27 AM Go to last post

  5. Sticky Thread Sticky: Info on the 2012 CCA family retreat

    Reminder: The retreat will be taking place in Tempe, AZ, and we will be staying at The Buttes Resort, which is a Marriott property. The dates will...

    Started by Katie‎, 02-02-2012 12:28 PM
    • Replies: 0
    • Views: 1,221
    Katie
    02-02-2012, 12:28 PM Go to last post

  6.    

  1. *pics* DS has a sagital and trig head-shape, but...

    just mildly (for both). His head is a little taller, longer, and narrower than average with a slightly triangular forehead, but it's nothing...

    Started by macmama‎, Yesterday 01:41 PM
    4 Attachment(s)
    • Replies: 4
    • Views: 50
    Amy K
    Yesterday, 07:40 PM Go to last post

  2. Multiple kids with cranio

    Good Morning Everyone, I have read the posts and I know that statistically it Is suppose to be rare, only like 1 or 2%, but how many actually have...

    Started by teresa8098‎, 05-18-2013 11:32 AM
    • Replies: 1
    • Views: 67
    Proud Parents
    Yesterday, 07:26 PM Go to last post

  3. 1st birthday and still concerned and confused...

    Well my Abigail is now a year old and we have been on the cranio coaster for about 6 months now. We have seen both a NS and a PS and have gotten very...

    Started by abbiesmommy‎, 05-19-2013 09:03 PM
    9 Attachment(s)
    • Replies: 5
    • Views: 113
    evergreenmom
    Yesterday, 05:41 PM Go to last post

  4. muenke v. saethre chotzen

    What is the difference in Muenke and Saethre Chotzen? My DSS was diagnosed in 98 with scs but my husband said that genetics said it was...

    Started by tarajames‎, 05-19-2013 05:03 PM
    • Replies: 0
    • Views: 24
    tarajames
    05-19-2013, 05:03 PM Go to last post

  5. headpickers wanted

    Ok I have some better pics of my 19mo Cobbie. Quick bio for those that don't know. Cobbie has a 14 yr old half brother with Saethre- Chotzen. Cobbie...

    Started by tarajames‎, 05-18-2013 10:38 AM
    5 Attachment(s)
    • Replies: 0
    • Views: 53
    tarajames
    05-18-2013, 10:38 AM Go to last post

  6. Couple questions: CVR/FOA/helmets

    So, forgive my ignorance, but is a CVR the same thing as a FOA or are they different? If they're different, can someone explain how & which would be...

    Started by bluefirekitten‎, 05-16-2013 06:46 PM
    • Replies: 2
    • Views: 115
    bluefirekitten
    05-17-2013, 11:39 AM Go to last post

  7. How long did you keep the mattress elevated?

    We are just 5 day post op and home just a couple of days. My daughter is 6 months old and she keeps sliding and rolling and waking herself up no...

    Started by meredith3‎, 05-13-2013 04:02 PM
    • Replies: 3
    • Views: 87
    nesurfr
    05-17-2013, 07:11 AM Go to last post

  8. Late Teething? Cranio and Dental Issues?

    Hello all. My little guy is 10 months old now with no signs of teeth in sight. Just wondering if late teething is related to cranio. I know I've...

    Started by skybound8‎, 05-14-2013 09:41 PM
    • Replies: 5
    • Views: 104
    maztec
    05-17-2013, 12:54 AM Go to last post

  9. Darn it, Darn it, Darn it!!

    Emily has to go in for surgery (minor) on May 20th. She has this bump above and to the side of her eyebrow. She had it in Nov, got in to see Dr. W...

    Started by Jennifer‎, 05-10-2013 09:20 PM
    • Replies: 8
    • Views: 287
    geneve
    05-16-2013, 10:21 PM Go to last post

  10. My senior project.

    Hello, my name is Ariana and I am a senior in high school. In my human disease class we have to do a big final project. For mine, I chose...

    Started by Loverinicole‎, 05-15-2013 11:09 PM
    • Replies: 1
    • Views: 65
    evergreenmom
    05-16-2013, 12:45 PM Go to last post

  11. Does CT scan show if there is raised ICP?

    Sorry if I write my post to a wrong place. My son had a CT scan and the pedi called me back with the results about 2 weeks ago. He said there is...

    Started by Patricksmum‎, 05-01-2013 12:34 PM
    • Replies: 5
    • Views: 573
    DrNB
    05-15-2013, 09:18 PM Go to last post

  12. Surgery for metopic - 10-12 months?

    Since my son was diagnosed, I feel that his trig has escalated quite a bit from the first diagnosis at 6.5 months. Now at 8 months (i'm not sure if...

    Started by kristylutz‎, 05-06-2013 11:18 AM
    2 Attachment(s)
    • Replies: 3
    • Views: 150
    DrNB
    05-15-2013, 09:07 PM Go to last post

  13. Head formation after coronal craniosynostosis fronto orbital advancement

    Hi all, Our little Tiffany is 3 months post op now, and I have an observation about her head. She had left coronal craniosynostosis and due to...

    Started by MikeB‎, 05-07-2013 03:37 AM
    • Replies: 6
    • Views: 149
    DrNB
    05-15-2013, 08:54 PM Go to last post

  14. Metopic Craniyosynostosis - Help Needed regarding Endoscopic Surgery

    Hello,My son is currently 10 weeks old. We were at his well visit last week and the pediatrician noticed a metopic ridge and triangular skull shape....

    Started by eager4gc‎, 04-14-2013 09:40 PM
    4 Pages •
    1 2 3 ... 4
    2 Attachment(s)
    • Replies: 38
    • Views: 1,373
    eager4gc
    05-14-2013, 08:56 PM Go to last post

  15. 2nd baby with cranio?

    Hi Guys! I have not been on in sooo long! JD is doing well. He turns three at the end of the month and he is your typical 3 year old. He is in...

    Started by Nichole‎, 01-16-2013 02:29 PM
    • Replies: 6
    • Views: 275
    Nichole
    05-13-2013, 08:51 PM Go to last post

  16. helmet help-please!

    My son had surgery on April 3rd and has been in a helmet since April 12th. We had been going weekly to have adjustments made on the helmet and just...

    Started by geneve‎, 05-08-2013 10:09 PM
    • Replies: 6
    • Views: 147
    geneve
    05-10-2013, 09:00 PM Go to last post

  17. No change in head circumference - 1.5 year post-op for sagittal

    Our son is 1.5 years post-op for sagittal. He had an extended strip with barrel staves with and ear to ear cut in October 2011 when he was 7 months...

    Started by jo_32‎, 05-08-2013 09:02 PM
    • Replies: 4
    • Views: 149
    jo_32
    05-10-2013, 04:34 PM Go to last post

  18. Metopic Ridge- Wait and See Category: Opinions Please Headpickers!

    Hi Everyone, We noticed my munchkin's ridge around 4 months. Took him to the ped who said it was nothing. I demanded a referral to a CF specialist...

    Started by sadiebandbabyb‎, 10-24-2012 10:17 AM
    2 Pages •
    1 2
    8 Attachment(s)
    • Replies: 10
    • Views: 576
    sadiebandbabyb
    05-10-2013, 02:24 PM Go to last post

  19. Off to Dallas tomorrow

    I have so much to do. I havent packed or anything. But I am at ease. I know Dr Fearon is the right choice for Kaiya. And do you all know that...

    Started by navyjen‎, 05-01-2013 06:15 PM
    • Replies: 4
    • Views: 184
    nicandkee
    05-07-2013, 03:31 PM Go to last post

  20. Metopic Suture? New here...

    Hi there, Im new here and well very new to this whole idea, trying to come to grips and understand what is going to happen. My son Brandon is 13...

    Started by Srlmorgan‎, 04-30-2013 09:42 PM
    5 Attachment(s)
    • Replies: 9
    • Views: 243
    Monkey'sMommy
    05-06-2013, 02:24 PM Go to last post
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