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MayoClinic????? Need advice please

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Old December 1st, 2013, 06:41 PM
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Even let my wife read the thread, made her break down and cry to see how many care. Thanks for being here, even through a computer the supports helps
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Old December 1st, 2013, 07:49 PM
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Originally Posted by Kyle's 77 Cutlass
Needs railings to get up or down stairs. Sits down in a chair, gets up like a 80 year old man and walks like a penguin. So their is something terribly wrong. Would like to use the doctors up here, we can't wait 6 to 9 months to see a genetic specialist.
I asked you this via e-mail, but haven't heard back, so I feel I must ask you here:
What sort of doctors have you seen?
The problem you describe sounds like the purview of a pediatric neurologist, or maybe rheumatologist.
Why do you believe that you need to see a geneticist? Geneticists usually can tell you your risks, but are not generally involved in any direct patient treatment.

With more information, I may be able to find something out from my friend at HealthCanada.

My prayers are with you.

- Eric
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Old December 1st, 2013, 08:15 PM
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Originally Posted by MDchanic
I asked you this via e-mail, but haven't heard back, so I feel I must ask you here:
What sort of doctors have you seen?
The problem you describe sounds like the purview of a pediatric neurologist, or maybe rheumatologist.
Why do you believe that you need to see a geneticist? Geneticists usually can tell you your risks, but are not generally involved in any direct patient treatment.

With more information, I may be able to find something out from my friend at HealthCanada.

My prayers are with you.

- Eric
You sent me an email?
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Old December 1st, 2013, 08:26 PM
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Originally Posted by MDchanic
I asked you this via e-mail, but haven't heard back, so I feel I must ask you here:
What sort of doctors have you seen?
The problem you describe sounds like the purview of a pediatric neurologist, or maybe rheumatologist.
Why do you believe that you need to see a geneticist? Geneticists usually can tell you your risks, but are not generally involved in any direct patient treatment.

With more information, I may be able to find something out from my friend at HealthCanada.

My prayers are with you.

- Eric



We have seen 2 family doctors 3 times, pediatric doctor,podiatrist, children's doctor in Winnipeg at the HSC, this is where the genetic specialist comes in. Another doctor in the Panam Clinic in Winnipeg, he said the same thing. Genetic specialist. Found out we can't see this guy for 6 to 9 months, not going to happen. Bringing Kelvin in tomorrow to Mayo clinic in Rochester.
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Old December 1st, 2013, 08:40 PM
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what is kelvin into ? Legos ? Slot cars? Models?

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Old December 1st, 2013, 10:14 PM
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Going to Mayo tomorrow? Great!!

That's really fast. It doesn't sound like the locals have been able to isolate this problem to a particular system yet - orthopedics / rheumatology or neurology are the two most likely.

I'm really surprised they didn't have someone from one of those fields see him in Winnipeg, but there's no accounting for these things sometimes.

Best of luck tomorrow, then, and do let us know if they find something to focus on!
Praying that this is something simple.

- Eric
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Old December 2nd, 2013, 02:04 AM
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Prayers sent.
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Old December 2nd, 2013, 05:57 AM
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Originally Posted by firefrost gold
what is kelvin into ? Legos ? Slot cars? Models?


He love's to read books. Archie comics he reads alot. Likes legos and loves john deere farm equipment.
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Old December 2nd, 2013, 06:02 AM
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Originally Posted by MDchanic
Going to Mayo tomorrow? Great!!

That's really fast. It doesn't sound like the locals have been able to isolate this problem to a particular system yet - orthopedics / rheumatology or neurology are the two most likely.

I'm really surprised they didn't have someone from one of those fields see him in Winnipeg, but there's no accounting for these things sometimes.

Best of luck tomorrow, then, and do let us know if they find something to focus on!
Praying that this is something simple.

- Eric


They were sending us to genetics first, if they wouldn't find anything then on to the next specialist.So then what, another 6 to 9 months? F that, so I called Saint Marys Mayo, talked to emergency and told them what is going on. They have no problems in taking care of our son. Least we will find out what is wrong
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Old December 2nd, 2013, 06:03 AM
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Thank you all's for your support. On the road in a hour
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Old December 2nd, 2013, 07:27 AM
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Originally Posted by Kyle's 77 Cutlass
They were sending us to genetics first, if they wouldn't find anything then on to the next specialist.So then what, another 6 to 9 months?
That makes no sense. It sounds like you're stuck inside some kind of a small local system that's chasing its tail.
It's good that you were able to get out of it.

Do contact the Shriners and Ronald McDonald House. RMH provides free housing for families while a child is in the hospital, and may be able to do it even if he is not admitted. They also offer family support services. Since Mayo attracts people from a good distance, the one in Rochester ought to have planty of resources.

You're doing the right thing.

- Eric
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Old December 2nd, 2013, 07:34 AM
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Just too much bs with it. If we had to wait a couple of weeks, fine. But 6 to 9 months, that is a joke. We will go to Mayo, they will find the problem. I will be going to RMH and try to get a room. Thanks for your help
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Old December 2nd, 2013, 10:29 PM
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Well we made it in. Nothing like a good old snow storm to welcome us
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Old December 3rd, 2013, 04:15 AM
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Having a 9 and 11 year old i feel your pain We are lucky to ave both childrens and Mayo so close in Mn . I wish I was closer you you have stayed with me but 70 miles one way is a little far .

Last edited by firefrost gold; December 3rd, 2013 at 04:18 AM.
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Old December 3rd, 2013, 06:16 AM
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Thankyou for the offer
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Old December 3rd, 2013, 11:08 AM
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Wow, finally getting somewhere.big difference when you pay directly,not indirectly. Thankyou USA
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Old December 3rd, 2013, 01:47 PM
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Glad to hear! How long of a stay are they looking at ?
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Old December 3rd, 2013, 02:14 PM
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Every member of my family with varying insurance levels has gone to Mayo. It's not paying directly that makes them responsive. It's that they really are that good and even more so, that capable.

Originally Posted by Kyle's 77 Cutlass
Wow, finally getting somewhere.big difference when you pay directly,not indirectly. Thankyou USA
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Old December 3rd, 2013, 02:38 PM
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Originally Posted by garys 68
It's not paying directly that makes them responsive. It's that they really are that good and even more so, that capable.
+1.

- Eric
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Old December 3rd, 2013, 02:43 PM
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Originally Posted by garys 68
Every member of my family with varying insurance levels has gone to Mayo. It's not paying directly that makes them responsive. It's that they really are that good and even more so, that capable.
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Old December 3rd, 2013, 02:48 PM
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Yes, we see that.Awesome care there. Just waiting for our call for our next appointment. I am just comparing to our health system in Canada, we don't pay directly. We pay in our taxes for our health system. So in this sense, it can be abused alot.
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Old December 3rd, 2013, 02:49 PM
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Originally Posted by firefrost gold
Glad to hear! How long of a stay are they looking at ?
Sounds like we are around for a couple of days
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Old December 3rd, 2013, 02:49 PM
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Originally Posted by garys 68
Every member of my family with varying insurance levels has gone to Mayo. It's not paying directly that makes them responsive. It's that they really are that good and even more so, that capable.
I would also add an instution that really cares
about the people that come through their doors.

Hoping that all goes well for Kelvin and your family Kyle.
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Old December 3rd, 2013, 02:52 PM
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Sincs we live in Canada, we don't need health insurance at home. Coming down here for our son' s health, we are paying from our pocket. Well worth it, least he is finally getting help
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Old December 3rd, 2013, 02:56 PM
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Just an fyi on hospital bills. Most hospital bills in the US system are not really accurate. What's paid by insurance, medicare, etc is based on standardized reimbursement fees. Don't know if out of the country makes a difference, but at the end of all this you can usually negotiate your bill down quite a bit.

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Old December 3rd, 2013, 06:37 PM
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No, we won't get any reimbursements. Maybe a chance when we file taxes, Canadian government may give some back. And at the end of the day they find the problem, well worth the money. Thanks for the info
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Old December 3rd, 2013, 07:33 PM
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I wish the best for you and your family bro. May they find a simple solution quickly. Hang in there!
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Old December 3rd, 2013, 08:22 PM
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Thankyou very much. We are in good hands here. Even like the city, gowing on me
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Old December 4th, 2013, 07:36 AM
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Hey Kyle
I hope the doctors are able to figure out what is going on with your son kelvin and get him what treatment he needs.

If you enjoy bbq food check out john hardy's. Not fancy but good bbq and their sauce is awesome. all the best
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Old December 4th, 2013, 11:48 AM
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Thankyou for the wishes. We will have to check this restaurant. Thanks once again
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Old December 4th, 2013, 04:47 PM
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So we tried out John's. Was great,sauce is awesome. Glad I only order half rack of ribs. That's some big ribs. Lots of meat,very little bone. Thanks for the restaurant
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Old December 4th, 2013, 07:06 PM
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Okay, thanks. We are moving to Ronald Mcdonald House tomorrow. They have room for us now. Kelvins next appointment is Friday morning. Guess we will see if eare here for longer.
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Old December 4th, 2013, 08:00 PM
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Any word on roughly where they think the problem is?

And are they sending you to a geneticist, or did they think that was wack?

- Eric
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Old December 4th, 2013, 09:06 PM
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I haven't been checking in regularly and just saw this thread for the first time. You are in good hands in Rochester. Best wishes to all.
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Old December 5th, 2013, 07:28 AM
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Thankyou very much rocket. Sounds like we see nuro tomorrow, then we see where we go from there.
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Old December 5th, 2013, 11:57 AM
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Happy to see things work out in life when you need them too the most! Our health care system in Canada has been going down hill for years now. I hope your son is in good hands there. Wishing you and your family all the best !!!
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Old December 5th, 2013, 02:43 PM
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Thanks 76. Big reason it is going downhill,a lot of people abuse the system. To me, their should be a 20 dollar cover charge for every time you use the system. People may think twice going in for sniffles or a paper cut. Would free up the system
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Old December 6th, 2013, 10:55 AM
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Well,we should of packed more clothes. We are here for another week. Poor Kelvin has a pile of tests. The doctors told us they will figure what is wrong. I believe them, this place is unreal
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Old December 6th, 2013, 11:19 AM
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I don't want to be annoying, but I just have to ask:

Have they had Kevin see a geneticist yet? (My money's on "No.").

If the answer is "No," then you can see how the root of your whole problem is some bonehead's insistence that you see an irrelevant specialist before any other care could proceed.

I'm glad to hear that Mayo is treating this with the gravity it deserves.

- Eric
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Old December 6th, 2013, 11:26 AM
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Originally Posted by Kyle's 77 Cutlass
Well,we should of packed more clothes. We are here for another week. Poor Kelvin has a pile of tests. The doctors told us they will figure what is wrong. I believe them, this place is unreal

I like the positive feed back
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