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Thread: Newbie (I copied this post from the main newbie thread)

  1. #1
    New Community Member
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    Default Newbie (I copied this post from the main newbie thread)

    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
    New Community Member
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    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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  5. #3
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((CranioChiariMom)))))) ~

    TO BRAINTALK!

    I'm glad that you found us!

    We are a small group now (we once numbered in the thousands), but we're steadfast, caring and supportive. Many of us have been on CN (our name for the Child Neurology forum) for years (18 years for me). Our children may not share symptoms similar to your son and daughter, but we do have experience in providing care and fighting for our children's rights and needs.

    I am so sorry for your loss of your precious angel. My youngest son received his wings in 2003. If you wish to share your grief journey, we have a sub forum, Coping with the Loss of a Child. I've written a book about parental grieving, but I haven't had the time to pull it together for publishing. I'm here to support you in any way I can.

    As explained in my signature, my sons were born with an undiagnosed neuromuscular disorder, believed to be genetic. Genetic testing has never revealed the gene, but then I haven't pursued it since the late 1980s. So, I can relate to your situation.

    I also have 47 years of dealing with seizures of all types, intensities, and duration. So, I'm here for you, as I know how challenging epilepsy is.

    Jon has hypothyroidism. He cannot tolerate Synthroid. Until he got his G Tube, we managed his hypothyroid with diet, avoiding soy, sugar, and corn. Now, all of those ingredients are in his formula!

    I'm so sorry that your children have so many complex issues, and I know that you are researching, and learning, and advocating, and going through so much for them. It can be exhausting and draining. If you need boosting, we're here for you.

    I look forward to getting to know you, your son and daughter, and family.

    Blessings upon you ~

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

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  7. #4
    Distinguished Community Member
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    Hi there, welcome!
    Sorry to hear you have so many health challenges in your family. I have CP so I'm somewhat familiar with the challenges of brain damage. I also have some knowledge of ADHD and hypoglycemia through my friends so I hope I can help you. I make films about disability which you can watch for free by clicking on the link in my signature. :)
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php


  8. #5
    Distinguished Community Member
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    Hello and welcome to the group! I'm so sorry for all the health challenges your family is dealing with. I'm glad you found this group though. It may be small but it sure is powerful! I belong to facebook groups a well but always come back here and read and try to post when I can. It's full of knowledge and support. It's a wonderful family!

    My Daughter has Down syndrome. She survived several strokes when she was 5 years old. It caused significant brain damage, a lot of which she worked very hard at getting back. She has since been diagnosed with Celiac, Hashimotos, Crohn's, intestinal disfunction ( she has a Cecostomy for this) neurogenic bladder( she has an appendicovesicostomy for this) and GERD. She also has had surgeries for different orthopedic issues. She wears AFO's for this as well. I look forward to your input on the group.
    Mary Grace


  9. #6
    New Community Member
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    Default

    Thank you guys. Sorry you all face the medical world as well but at least we all can stick together.

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