Thursday, November 15, 2007

Son's doctor appointment

I took my 6 year old son to the pediatrician this morning. His headaches used to be occasional and he didn't need anything for them. Lately they have been occurring more often than not, waking him up, and asking for something to make it go away. That says a lot to me because he gags it down, it tastes so bad, but he's now willing to do it.

The pediatrician was less than thrilled and is rush ordering an MRI under sedation. Hopefully insurance will approve it without a fight and we can get this over with as soon as possible. If it's CM we need to know, and if it comes back clear then she said she will treat as migraine. I will of course get a copy of it and ask my NY RN if she can run it by the NSG's for me.


  1. Hi~
    I'm glad I finally made it over to your blog ~ It's terrific BTW ~!!
    We haven't formally met but have conversed some through ASAP~
    (I'm prism)

    I can relate to a lot of what you say~ being abandoned by friends and loved ones, being an curiosity for the medical world~
    and lastly but not least~ worrying about our children's well-being due to inheriting factors of these conditions~

    It's a very tough road to travel. And I'm grateful every time I meet a new comrade.
    I will pray for you and your son! Your up-coming surgery and his needed MRI~
    Wishing you a rainbow~ zoe (prismed)!

  2. Prayers for you and your son, and all of your family, zip! I pray it's not CM, but then again, if it is, he will at least have an early dx...will be anxious to find out.

    God bless you, my friend.
    with love

  3. So I take it Chiari is genetic. Please update when they know more!

    I am so sorry that he has to go through pain! I'll pray for him.

  4. I will be keeping you and your son in my prayers ~ it must be scary to be looking for CM in your child ~ but knowing the truth will give you answers. Hugs to you ~ Lace

  5. I hope and pray everything turns out OK with your son. At least if it is CM you know it early and he would have the best possible person advocating for him. I can't imagine there are too many moms out there that know as much as you do!

    hugs to you,


  6. Hi Zoe! Good to see you! Our comrades are definitely treasured aren't they?

    :) Keesha

  7. BHG, thank you. I'll be praying for you for your surgery hon.


  8. Hi Scott,

    Chiari can be trauma-induced but it's congenital the vast majority of the time; for some of us there is also a genetic component. We already know DS has EDS like me, and since around 31% of Chiarians have EDS, we're concerned about him.

  9. Lace and Caroline,

    Thank you! DD was cleared 4 years ago and at the time DS was fine. I didn't think it would ever come to this. I will post whenever there is an update. Thanks again for the support.

  10. Please know that I think and pray for you and your family often. I contacted you sometime last year and you showed me so much kindness and gave me so much information, it truly touched me. Since then, I've finally made it to TCI, been diagnosed with EDS, tethered cord, Chiari 1, retroflexed odontoid, basilar impression, etc. etc. I had tethered cord surgery on June 1and decompression/fusion to C5 on August 27. Just know that YOU were an integral part of getting me there through all your info. and encouragement. You help so many people through your blog--so many people have you on their hearts, including me. My prayers will remain with you and your family. I know you must be worried about your son. Please keep us posted.

  11. Prayers and big hugs for you , Collin, Meg and Sterl.