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Oregon (OR) Resources
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Thread: Oregon (OR) Resources

  1. #1
    Forum Committee - Moderator
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    Oregon (OR) Resources

    Please post information or questions about services in Oregon here.
    Robin
    Mom to Avery, 14 yrs
    ^^Logan^^, MPS II (6/14/03-3/15/15)
    and Kara, 9 yrs

  2. #2
    Junior Member
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    May 18, 2013
    Location
    Oregon
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    11

    Am I the only one?

    Are there any other parents on here from Oregon. I'm wanting to find out about Shiners in Portland?

  3. #3
    Forum Committee - Moderator
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    I believe that Todd and his family live in Oregon. I'll try to send him your way.
    Robin
    Mom to Avery, 14 yrs
    ^^Logan^^, MPS II (6/14/03-3/15/15)
    and Kara, 9 yrs

  4. #4
    Forum Helper - Moderator
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    Hi Amber,


    Welcome to the forum.

    How is Maura doing?

    We had Ethan evaluated at Shriners about a year ago. Shriners can be a good resource where insurance limitations or out of pocket costs are a concern.

    As you probably know, a few years ago, Shriners changed their financial policies. Patients still don't pay, but they do now bill insurance. Shriners does cover any out of pocket costs, so it's free to patients if not patients' insurance.

    However, I got the impression that the nature and extent of mps orthopedic issues were outside of their typical scope. When that happens, they will bring in whatever specialists they need from outside of the Shriners system and the same financial policies apply.

    So, even though our kids needs may be more complex or at least more extensive than their typical patients, it can still be worthwhile to get services at Shriners since you have the financial advantage and access to doctors from outside their system if they feel its necessary.

    For us though, we max out our family co-insurance each year, after which the insurance covers everything except the office co-pay. Given that, we thought it made more sense for us to stay outside of the Shriner system and be able to see the specialists that we wanted to see without leaving it up to Shriners to decide.

    In the end, we started seeing Dr. Klane White at Seattle Children's for orthopedics. Klane is very well respected in mps orthopedics. His daughter had hurlers. Unfortunately, she passed some years ago at age 9. It may be that going up to Seattle is overkill There is a pediatric orthopedist at OHSU that our pediatrician has consulted with. If you decide not to go with Shriners and want his name, let me know and I'll ask our pediatrician for the name.

    Sorry I couldn't give you a cut and dry answer. I hope the options here help.

    All the best,
    Todd








    Sorry, I've been absent, all. I've been thinking about you. But classes are kicking my butt. My class ends in a few weeks and then I'm off for the summer. I look forward to spending more time here then.
    Todd Waddell
    Portland, Or
    E-mail: toddwaddell@zoho.com

    Dad to:
    Caleb Waddell (unaffected)
    Ethan Waddell MPS-1 Hurler's (dob 07/15/08. 1st BMT 10/29/09, 2nd BMT: 4/13/11)
    http://ethanwaddell.blogspot.com

    (Believe it or not, absolutely no relation to Kelly Waddell, or to her Caleb. No, really. I know, strange, right?)

  5. #5
    Junior Member
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    May 18, 2013
    Location
    Oregon
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    11
    Thank you Todd!

    Our geneticist and our physical therapist would just like to have her evaluated by then and monitored yearly. They don't have any concerns at this point but I appreciate knowing that isn't where you go. I have other friends with kids with hurler's that go to Shriners in CA and love it! I'm curious if there might be someone closer to us that might specialize. Would you be willing to ask Dr. White?

    Thanks again!
    Mommy to Maura MPS 1 ~ (DOB: 9/19/11, Diagnosed 8/24/12, CBT 11/8/12) and Liam almost 3 years old! Wife to Eric.

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