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Thread: Newbie

  1. #1
    New Community Member
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    Cool Newbie

    Good afternoon all! It's been a while since I was last on a forum page. Last one was CranioKids.org That's been a few years. Thanks to the world of Facebook and stuff, forums are hard to find these days. Good to see this one so active.

    Anyway, I'm a mom of two living children and one angel. Been married 14 1/2 years almost. Both of my children but especially my son are why I research so much about neuro stuff.

    My daughter has Bicoronal Craniosynostosis, Muenke Syndrome, Hearing Loss, Asthma, Chronic Headaches, Acquired ADHD , Visual perception & spacial Disorder, Mild neurocognitive disorder disorder NOS brain damage/issues with that, Memory disorder, Frontal Lobe & Executive Function Deficit.
    My son has as of June 2018 been diagnosed with: Multi-suture craniosynostosis & Muenke Syndrome, Developmental Delays, Chiari Malformation, Platybasia, Basilar Invagination, Syringomyelia, 1q44 deletion along with a few other microarray changes, Hypotonia, an unspecified connective-tissue disorder, hypoglycemia, focal epilepsy, encephalomalacia and ADEM.

    I look forward to getting to know more of you and sharing stories.

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  3. #2

    Default

    Welcome to BrainTalk (BT), CranioChiariMom!

    I'm so happy you have found our forum family.

    If you have any questions as to how to use the forums, you may pm me or use the "Moderator Connection" forum.

    We have a wonderful Child Neurology forum, which you can access by clicking on the following link: http://braintalkcommunities.org/foru...hild-Neurology. There is also a thread at the top of every forum which says "Archives". You could scan the thread titles there and see if any previous members have had problems similar to the ones you are dealing.

    I am sure more members will drop by to welcome you soon!

    Moderator #7

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  5. #3
    New Community Member
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    Default

    Sorry, we also deal with hypothyroid. Forgot that one.... It's not Hashimotos at this point but without meds, his TSH is really high.

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  7. #4
    Distinguished Community Member agate's Avatar
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    Default

    Welcome, CranioChiariMom!


    I am usually on the MS board but noticed your thread. Yes, message boards have had a dwindling supply of people in recent years but we're still here.
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009.

    "Always put off until tomorrow whatever you think you should do today." --Anonymous



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  9. #5
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    Default

    I can understand how things dwindle down yet sometimes it's nice to see the "old school" still vs everything being on Facebook.

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  11. #6
    Distinguished Community Member agate's Avatar
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    Default

    Message boards make a conversation easier than Facebook, I think, if a person is looking for more detailed information. Also, since a message board often consists of a group of people who "know" one another, an effort is made at keeping the discussion from getting chaotic.
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009.

    "Always put off until tomorrow whatever you think you should do today." --Anonymous



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  13. #7

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    I agree with that. Besides, Facebook looks like a whole, where everyone writes and no one reads.

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