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Thread: Questions for Neuro-Ophthalmologist

  1. #1
    tammylh is on a distinguished road tammylh's Avatar
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    Post Questions for Neuro-Ophthalmologist

    I haven't been able to find much regarding what to ask an ophthalmologist, so here's what I came up with based on Jesse's metopic and his specific issues with tracking.
    1. Can you check for intracranial pressure?
    2. Can you check the optic nerve for any other issues?
    3. What are the risks of damage due to the metopic craniosynostosis?
    4. What are the risks to his eyes during and after surgery?
    5. Are his eyes aligned? Are they working together?
    6. Jesse seems to have hypotelorism and I’ve noticed looking at his photos that they appear to be moving closer together. Will surgery fix this?
    7. Jesse’s pediatrician was concerned about his lack of tracking objects. I’ve seen him track objects without actively trying to get him to do it. It appears to me that it is more of an issue in getting his attention in order to get him to track an object. What are your thoughts on this?
    8. How often should he be seen before and after surgery?
    If anyone can think of anything else, please let me know. I have the appointment this afternoon.
    Tammy
    Jesse's Mommy (2/18/11) - Moderate/Severe Metopic w/Trig
    Aug 23, 2011 - CVR/FOA #1
    Aug 29, 2012 - CVR/FOA #2 (Dr. Fearon & Dr. Sacco)

    We are on the other side AGAIN!!!

    Jesse's Cranio Journey

  2. #2
    Mommy to my "Little Tonka" Carmen77 will become famous soon enough Carmen77's Avatar
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    Nothing to add, but good luck!
    Carmen
    Mother of 2 Girls, 4 Boys!
    Mateo Tolentino 10/21/09
    Dx - 07/08/10 Sagittal Synostosis Surgery Date: 08/23/10
    Dr Singh (CFS) Dr Shafron (NS)
    We are on the other side
    Lucas Jeremiah 11/25/10
    Dx - 03/31/11 Plagio/TorticollisHelmet Therapy 06/03/11
    Dx - 07/20/11 Mild Metopic W/Trig (wait and see)

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    tammylh is on a distinguished road tammylh's Avatar
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    Thanks Carmen! I'm a nervous wreck. I'm pretty quiet most of the time and usually the type that doesn't ask anything and just kind of goes with the flow. Gonna have to learn to go out of my comfort zone and speak up for my little guy. ;)
    Tammy
    Jesse's Mommy (2/18/11) - Moderate/Severe Metopic w/Trig
    Aug 23, 2011 - CVR/FOA #1
    Aug 29, 2012 - CVR/FOA #2 (Dr. Fearon & Dr. Sacco)

    We are on the other side AGAIN!!!

    Jesse's Cranio Journey

  4. #4
    AJ's Mommy AJ's Mommy will become famous soon enough AJ's Mommy's Avatar
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    Good luck sweetie!! Let us know how it goes!
    ~~Shelby~~

    AJ~Sagittal Craniosynostosis
    ~Surgery 10-6-2009 At Seattle Children's Hospital
    ~Dr. Ojemann and Dr. Gruss~

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    www.craniocarebears.org

  5. #5
    Corrected mild metopic Monkey'sMommy has a spectacular aura about Monkey'sMommy has a spectacular aura about Monkey'sMommy's Avatar
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    That is an excellent list! Not really sure how relevant this is, but several of us here at ck have noticed that our metopic kids' eyes cross easily, especially their left eyes for some reason. I wonder if you've noticed that with Jesse?
    Kristin, Chronic Lyme Disease
    Big Sister Bear 9/2005
    Little Brother Monkey 6/2009, Metopic Cranio dx at 12 mos, CVR/FOA at 20 mos.Drs. Martin and Castiglione, Connecticut Children's Medical Center (Autism Spectrum Disorder)
    Monkey's Blog: http://www.MetopicMonkey.blogspot.com

  6. #6
    tammylh is on a distinguished road tammylh's Avatar
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    Thanks Shelby!

    Kristin - I noticed it more right after he was born, but it seems to be getting better and better the older he gets. I know my DH is very concerned with Jesse's eyes because DH had to have 3 different eye surgeries when he was a baby due to some issues with the muscles. Not sure exactly what was going on, but crossed eyes was part of it.
    Tammy
    Jesse's Mommy (2/18/11) - Moderate/Severe Metopic w/Trig
    Aug 23, 2011 - CVR/FOA #1
    Aug 29, 2012 - CVR/FOA #2 (Dr. Fearon & Dr. Sacco)

    We are on the other side AGAIN!!!

    Jesse's Cranio Journey

  7. #7
    Corrected mild metopic Monkey'sMommy has a spectacular aura about Monkey'sMommy has a spectacular aura about Monkey'sMommy's Avatar
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    Wow, three eye surgeries as a baby?!? His poor mom! That would be a great thing to mention to the ophthalmologist also.
    Kristin, Chronic Lyme Disease
    Big Sister Bear 9/2005
    Little Brother Monkey 6/2009, Metopic Cranio dx at 12 mos, CVR/FOA at 20 mos.Drs. Martin and Castiglione, Connecticut Children's Medical Center (Autism Spectrum Disorder)
    Monkey's Blog: http://www.MetopicMonkey.blogspot.com

  8. #8
    tammylh is on a distinguished road tammylh's Avatar
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    Yeah, she still cries when she talks about it and it was 40 some years ago. I'm not sure what was involved in all of them, but one of them they actually took out his eye and had to cut some muscle or something. She's a little sketchy on the details since it's been so long ago. I guess that would be a good thing to mention!
    Tammy
    Jesse's Mommy (2/18/11) - Moderate/Severe Metopic w/Trig
    Aug 23, 2011 - CVR/FOA #1
    Aug 29, 2012 - CVR/FOA #2 (Dr. Fearon & Dr. Sacco)

    We are on the other side AGAIN!!!

    Jesse's Cranio Journey

  9. #9
    tammylh is on a distinguished road tammylh's Avatar
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    Well, I got curious so I went off to Google. Sounds like DH probably had Amblyopia (lazy eye) & Strabismus (crossed eyes). Didn't realize that surgery could be needed for crossed eyes, but it sounds like that is what he had. I'll mention it at the appointment. Not sure if that can be genetic or not.
    Tammy
    Jesse's Mommy (2/18/11) - Moderate/Severe Metopic w/Trig
    Aug 23, 2011 - CVR/FOA #1
    Aug 29, 2012 - CVR/FOA #2 (Dr. Fearon & Dr. Sacco)

    We are on the other side AGAIN!!!

    Jesse's Cranio Journey

  10. #10
    Corrected mild metopic Monkey'sMommy has a spectacular aura about Monkey'sMommy has a spectacular aura about Monkey'sMommy's Avatar
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    Don't know about it being genetic, but my dad had the same thing. He had eye surgery when he was three.
    Kristin, Chronic Lyme Disease
    Big Sister Bear 9/2005
    Little Brother Monkey 6/2009, Metopic Cranio dx at 12 mos, CVR/FOA at 20 mos.Drs. Martin and Castiglione, Connecticut Children's Medical Center (Autism Spectrum Disorder)
    Monkey's Blog: http://www.MetopicMonkey.blogspot.com

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