Shriner's Hospitals?

Discussion in 'Teacher Time Out' started by mmswm, Mar 26, 2012.

  1. mmswm

    mmswm Moderator

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    As many of you know, two of my boys have a genetic bone disease that causes them to have "bumps" all over their bones. The cost of their medical care has become more than I can afford, even with insurance. I was looking into Shriner's, but the nearest one is about 4 hours away. Of course, that's not a big a deal as it could be, since that's also the distance to the nearest specialist who's even heard of the disorder my boys have, so I'm driving to that city anyway. My insurance, however, considers the regular children's hospital "out of network", and that can get really expensive.

    Does anybody have any experience with Shriner's hospitals? What can you tell me about them? Thanks.
     
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  3. Speechy

    Speechy Comrade

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    Although I'm not in contact with this person anymore, I had a school friend who had cerebral palsy. She visited Shriners all throughout her childhood, and apparently they are pretty darn amazing. They did all of her surgeries either low cost or for nothing at all. They are great at working with families with little or no insurance.

    I also dated a guy in college who worked with getting funding for charities. While he said most of them were a scam and weren't worth donating to, he had the nicest things to say about Shriners.

    I wish I could remember more details, but sadly I don't. The little feedback I have heard has been pretty positive though.
     
  4. bros

    bros Phenom

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  5. MissCeliaB

    MissCeliaB Aficionado

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    One of my students was recently accepted by Shriner's for a condition. It seems to all be working well.
     
  6. Aliceacc

    Aliceacc Multitudinous

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    I have no idea, mm, I'm sorry.

    But consider rethinking the whole Moscow idea if health care is going to be an issue.
     
  7. Ima Teacher

    Ima Teacher Maven

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    We are an hour from a Shriner's hospital. They do amazing work. I've had several students treated there over the years.
     
  8. donziejo

    donziejo Devotee

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    My son was treated at Shriners when he needed a brace and later night splints for his foot. They were amazing And I hear they still are. I would ck into what they offered.
     
  9. tracykaliski

    tracykaliski Connoisseur

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    I taught a child with cerebral palsy who was treated at a Shriners Hospital in Lexington Ky. She had surgery and may follow ups with them and they were really fantastic.

    In my city there's a Shriners hospital for burned children. They are absolutely amazing with those children. All care is provided free of charge. Without them here for these children, their lives would be vastly different.
     
  10. mmswm

    mmswm Moderator

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    I've researched that already. There is an othro in Moscow that their old doctors said is knowledgeable about MHE and would be able to treat them. My biggest problem now is that the doctors in Minneapolis are considered out of network for my insurance, and the extra cost, plus the 4 hour drive makes getting to appointments expensive.
     
  11. catnfiddle

    catnfiddle Moderator

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    Shriner's opened a hospital in North Philly a year or so before I moved away. They were doing amazing things for the impoverished kids in that area. I'd give them a try if I had children who needed care beyond my own means.
     
  12. mrachelle87

    mrachelle87 Fanatic

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    My sister was accepted for her bone disease...the problem was that they didn't want another doctor treating her. My mother did not want to remove her from the care of the specialist that was just an hour away for emergencies. We were over four hours away also. That was the only problem...that might have changed. Otherwise they were wonderful.
     
  13. janlee

    janlee Devotee

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    My cousin's husband is a Shriner as was my uncle. Both were very involved with the Shriner's hospitals. If you are able to get to one of their hospitals I would definitely advise it. The work they do is unbelievable.
     
  14. mmswm

    mmswm Moderator

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    I make too much for that. Even if they did qualify for Medicaid, I wouldn't be able to cross state lines for treatment. The huge issue here is that the nearest specialist is in Minneapolis, which is a four hour drive. It's a brutal trip to make in one day. My insurance isn't the most fabulous ever, but it's not bad either. If there was a specialist that could take care of themm here, I wouldn't have even thought about Shriner's. It's the double-whammy of out-of-network costs AND being so far away that's breaking me.

    I put in the application for Shriner's today after talking with their old Ortho. Money notwithstanding, he recommends Shriner's over the children's hospital anyway, just on experience treating this particular condition. It's a fairly rare condition, affecting roughly 1 in 50,000 people. Many doctors have never even heard of it, which is what's causing the difficulty in getting care closer to home. There are reasonably well versed specialists in just about any large city in the world, but unfortunately, I do not live in a large city.

    (P.S. In case anybody's interested, here's a link that describes the condition in reasonably understandable terms. One of the first things you learn as a parent of a child with a rare conditions is how to learn to speak "doctor".)
     
  15. teacherintexas

    teacherintexas Maven

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    I don't know anything about Shriner's, but I hope you get your boys the care they deserve. I know how frustrating the insurance game can be.
     
  16. bros

    bros Phenom

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    Amount of money you make doesn't matter, only amount you have in savings matters, can't be more than 3k. If approved, they would qualify for a minimum of ~800 a month in SSI. Money could be put in a special account in accordance with SSA rules in order to not count as a resource
     
  17. Blue

    Blue Aficionado

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    I had a student, now an adult, who was treated at Shriners. As an adult, he has told me how great they were to him. I would go for it. If you find it is not a good fit, you are a strong woman, and can find something else.
     
  18. sumnerfan

    sumnerfan Comrade

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    Mar 31, 2012

    My daughter is treated by the Shriners for a port wine stain birthmark that insurance didn't cover. You can't just call and make an appointment with the Shriners, there's an application process. I think you can get it online, but we did it through of of the local lodges. If you know a Shriner you might ask them about it. We had a friend who knew one. After you apply you have to go to the hospital where they do that kind of work, for instance we go to Cincy for our procedures. Each hospital has a specialty so just because there is one 4 hours from you doesn't mean that is the hospital you will use.

    The Shriners will drive you there if you choose. We always drive ourselves because we prefer the flexibility and we can afford to drive ourselves. If you are picked up by the Shriners you will not have to pay for any medical expenses, but they do submit a claim to your insurance. If it's denied no big deal, but they had to make some cutbacks recently because donations were down. We get a letter in the mail about when to come, you don't get to pick your appointment time. You can reschedule, but you go to the end of the list. The Shriners cover children until they are 21. We recently decided not to have any more procedures done on my daughter's birthmark. They told us if we needed something between now and when she turned 21 we could call and get back in the appointment curcuit.

    They Shriner's are great and you should definitely apply.

    Best wishes for you and your family.
     
  19. kpa1b2

    kpa1b2 Aficionado

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    My cousin has been going to Shriners since birth. I think she still goes there & she's now 48. I know that she's had both hip & knee replacements in the last several years & I'm just assuming that that's where she has had them done at. Hmm. . .maybe she's using someone else?
     
  20. cutNglue

    cutNglue Magnifico

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    You are queen at looking for alternate solutions for just about every aspect of life. I have no doubt that you will find a better solution here whether shriners takes your family or not. I'm rooting that they will though I have no personal experience with them.
     
  21. sumnerfan

    sumnerfan Comrade

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    All I know for sure is that they told us my daughter could be a patient until she was 21. It may be different for other types of medical issues.
     
  22. kpa1b2

    kpa1b2 Aficionado

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    I looked at her fb page, she may be going somewhere else as she has liked an orthpedic page. Maybe it's where they recommended her to go? Guess the subject of where she has gone has not come up.

    Anyway, I know that Shriners always took good care of her & her sister when they were younger.
     
  23. chemteach55

    chemteach55 Connoisseur

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    My grandfather was a Shriner. They do amazing work. I used to love to go do fundraising activities with him and my grandmother. I was also able to visit several of the hospitals and was impressed how state of the art the equipment was. We make a donation every year in my grandfather and grandmother's name on the anniversary of their births and deaths in lieu of sending flowers to the graves. While flowers are nice for the living to look at, the donation makes me feel as if my grandparents are still working for a cause they were very passionate about.
     
  24. mmswm

    mmswm Moderator

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    I'm just waiting to hear from them now. I'm hoping to hear from them tomorrow to Tuesday. They said the early part of the week. It can't come soon enough. The boys' regular appointment isn't until the end of May, but William has been having some issues recently. The thought of having rent a car (my car is having some issues), drive to St. Paul, and then spend the extra money for the out-of-network doctor is not a pleasant one, but I may do it Wednesday if William doesn't start feeling a little bit better. At least if he's seen by Shriner's, I only have to worry about the travel cost.
     
  25. sumnerfan

    sumnerfan Comrade

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    Actually the Shriners offer to transport you to and from the hospital and they sometimes pay for hotel, but usually they offer you a room at the parent house. We never did that because our daughter's stay was never more than one day (outpatient surgery), but I can see where it would be helpful.

    I hope you hear something soon, but I also want you to be forewarned that just because you hear back from them soon does not necessarily mean you will begin treatment with them soon. We had to set up an clinic appointment to be evaluated then once we were accepted, we waited about 5-6 months before we had our first treatment at a Shriners' facility. After that, we would go to the Shriners for treatment between 2 and 3 times a year. I'm sure it's different depending upon the condition being treated. Again, I can only speak from my personal experience.

    Best wishes and keep us posted.
     
  26. mmswm

    mmswm Moderator

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    With the particular condition in question, they said they would set an appointment within 4-6 weeks, or sooner if there was anything urgent. William all but refused to walk yesterday. He's doing better today, but if he has several days in a row like that, it becomes urgent. They were a little hesitant to talk about transportation. I'm 4 hours away from them. It's a bit of a haul.
     
  27. bandnerdtx

    bandnerdtx Aficionado

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    To echo what the others have said, I've only heard amazing things about the Shriners near hear. It breaks my heart that you work so hard, you do the right thing for your sons, you are a responsible, productive citizen and you ate in this position. I ache for you. :hugs:
     
  28. mmswm

    mmswm Moderator

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    Thanks :). This is a genetic condition. I knew full well that any kids I had with my ex had a 50% chance of getting it. I also knew that the severity of the conditions varies wildly, even among family members. We've actually been quite lucky so far. Matthew's condition is quite mild. He's got a number of "bumps", but none of them are in places that cause any real trouble, just some minor annoyances. William has a much more severe case. Pain is pretty much ever present for him. One of his legs is shorter than the other, one of his arms is slightly deformed, he's got several deformed toes, and several large bumps in his knees and ankles. It's no fun, for sure.

    Oddly, this is the child who's here despite overwhelming odds against him. I wasn't planning on having a third child. I'd had issues with previous pregnancies, which caused damage to my reproductive system. I should have never been able to get pregnant with him, but I did . I went into labor with him at 18 weeks. Between that and the other complications I had, I shouldn't have been able to carry him long enough for him to survive. I hung on for 6 more weeks. He spent 6 months in NICU and PICU fighting for his life. Doctors, nurses and social workers were constantly preparing me for his inevitable demise. He had different plans. He's a survivor. He's perpetually sunny and cheery no matter how badly he feels. He could teach us all a lesson in having a positive outlook on life, now matter how big the obstacles might seem.
     
  29. sumnerfan

    sumnerfan Comrade

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    We are 6 hours from our hospital and we were always offered transportation. I think it depends on if you have a Shriners group in your area. They are the ones that call and always offer the transportation, not the hospital itself.
     
  30. bros

    bros Phenom

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    24 weeks? Nice and early, he was. (I was born at 25 1/2 weeks) My parents went through the same routine of being prepared for my "inevitable" demise too, (Neither did bleeding on the brain) many many times. They also received many late night phone calls that scared them half to death.

    Optimism is the best way to deal with life when the cards you are dealt are not optimal. He is very lucky to be able to see the bright side of things, some fellow individuals with disabilities that I have met fail to share a similar outlook on life and are rather pessimistic. Hopefully he keeps his bright and sunny disposition and doesn't let anyone extinguish that bright, burning optimism that he holds.
     

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