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Thread: Update on Ainsley and my CT questions

  1. #1

    Default Update on Ainsley and my CT questions

    Hi,
    If you remember, Ainsley is a mild metopic with partial sagittal fusion. In August, she developed a step along her coronals, which has now turned into a slight dip and then a step. He head shape, disposition, and development are great.
    In August, she had a month-long unhappy stretch that I was concerned about and I took her to her CFS. After I asked lots of questions (trying to get answers about what was going on with her coronals), CFS recommended a CT.
    Since October, Ainsley has been the happiest baby that I know, so at this point, I dont really have concerns. I'd rather not do the CT unless things get worse (head shape or disposition).
    I didn't want to go against what the CFS recommended without some back-up, so I got another opinion. We saw Dr. Urata at LA Children's today. He was really nice. He did not see a reason for a CT. Essentially, while the CT might help us understand what is going on, it would probably just tell us that she has a fused metopic and partially fused sagittal - and nothing would come of it. He couldn't imagine a dr operating on her because her head shape and size are fine. So why do it if nothing will come of it.
    Dr. Urata said that the dip/step along the coronals could be normal and that they just don't know why these things happen. He also said that by 18 months (Ainsley's age) the brain/skull has done 70% of its growing, so it is unlikely to change much more. Dr. Urata thought ainsley had slight metopic presentation (slight narrowing) and no indication of a sagittal fusion (other than the ridge).
    My plan is to just watch her head shape and disposition and if something happens, I'll deal with it then. Dr. Urata didnt think I had anything to worry about.
    So, I was happy with the appointment.
    Just thought I'd share the update.

  2. #2
    Registered User Janet Test Rep Janet Test Rep Janet Test Rep Janet Test Rep Janet Test Rep Janet Test Rep Janet's Avatar
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    Well that is good news. Thanks for giving us an update.
    Mom to Noah (no cranio)
    Fiona (Metopic):
    Surgery #1 CVR/FOA 9-26-07 (age 10 months) Sick kids in Toronto with Dr. Phillips (PS) Dr Kulkarni (NS)
    Surgery #2 Cyst removed over left eye 9/08 Dr. Phillips (PS)
    Surgery #3 Cranioplasty 10-18-11 (almost 5 years old) for soft spots filled in with titanium plates/peek implant from bone resorption and scar revision. Dr. Phillips


  3. #3
    Jenny has a spectacular aura about Jenny has a spectacular aura about Jenny's Avatar
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    Thats great news! You're probably right about the CT.. why bother if it isn't going to change anything. Good job momma for following your gut!
    Jenny
    Mikayla ~ February 18, 03 Bi-Coronal Craniosynostosis-read her story http://craniokids.org/support/showth...hlight=mikayla
    Anabelle ~ 10/05
    Jaden Michael ~ 9/08



  4. #4
    andrews mommy will become famous soon enough andrews mommy's Avatar
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    Good news!!!!
    Erika- mommy to victoria-10 no cranio,vincent-7 no cranio,daniel-6 no cranio,destiny- 4 no cranio,mikey- 2 no cranio,andrew- 12-10-09 bi-coronal surgery 10-12-10, anthony-no cranio

  5. #5
    Mindy will become famous soon enough Mindy's Avatar
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    That's wonderful news!!! Thank you for posting the update. It's nice to hear that the "step" isn't anything to be concerned about. I actually see it on some kids when their hair is wet. I think Ainsley and Shane have similar head shapes (except Shane's is flatter in the back).
    Mom to Riana 9/19/05, Shane 7/5/07 (mild metopic cranio- no surgery required), Addison 6/16/12

  6. #6
    fitmomof2ae will become famous soon enough fitmomof2ae's Avatar
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    Sounds like a good appt. Thanks for the update. I hope everything continues to go well!


    Sagittal surgery - 02/26/2009

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

  7. #7
    G2sMama will become famous soon enough G2sMama's Avatar
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    I'm glad no surgery is in your future!! YAY!
    Dawn
    G1 - 05/2008 (no cranio)
    G2 - 05/2010 (metopic/trig) Endoscopic release 08/2010 @ St Louis Children's Hospital w/ Dr Woo & Dr Smyth. Graduated helmet therapy 05/18/2011

  8. #8

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    Thanks all.
    A funny thing about the step is that the dr thought it is relatively common, but that most people dont notice it because they aren't feeling their kid's head they way we often do.

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    navyjen is just starting out navyjen's Avatar
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    Sounds like a great appointment.

    Jennifer

    mom to DJ 9/17/98(no cranio)

    Camryn 06/04/09(metopic - no surgery recommended)
    Kaiya 06/23/12 (right coronal) born 2 months early due to hit and run driver


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