What is wrong with our Province!? *So Angry!*

[Elisa]

What also really pisses me off is that our province that is so unequipped to deal with pediatric scoliosis and other bone issues, does not transfer kids to other provinces where they are better equipped to do the surgeries. Not only that, they do NOT suggest Shriners International at all and IF one happens by chance to find out about them like I did from you guys, they tell you that "if you go the Shriners route then there will be no followup here in BC". Yes, they are keeping us hostage while our kids are suffering. This is so wrong in so many ways and how do they get away with it and how do they sleep at night!?

As far as Debbie's interview with Global TV, honestly I could barely watch it through and can't watch it again b/c it reminds me too much of me last fall when I was so worried, helpless and alone and all I did was cry and cry and go to work and cry some more. Maybe these guys just get a kick out of seeing desperate moms cry for their kids. Yeah, that must be it. *rolleyes*

Elias if fifteen now and will be under Shriner's care until he's eighteen. I believe the age for kids to be seen in a children's hospital here is sixteen so he's still got three years of care if need be. So glad.

[Elisa]

Anyone want to guess the curvature (kyphosis) of this spine? The boy will be in halo traction for three months @ twelve hours a day. I know halo traction worked wonders for my son but he had a lateral curve/rotation and not kyphosis. I don't think I've come across anyone on this forum or the UK forum that had traction for kyphosis. Has anyone else? I can't wait to see exactly what traction will do in this case and how much of a correction he will get when it's all over with.

[titaniumed]

Woah....Poor kid

125 degrees?
Ed

[JDM555]

That looks very bad. I'd have to guess anywhere from 115*-125*.

[Elisa]

She will get the results of the scan next week and hopefully it's all still a go to start the traction asap. Speaking of traction, I'm still wondering about the plan to have her son on traction only twelve hours a day instead of 24/7 like Elias was. I know that every time I transferred the weights from his bed to wheelchair/walker I had to do it gradually and keep tension on the rope otherwise he got an awful feeling like his head was crushing his neck. He said it was hard to describe but couldn't wait for the weights to be back on and he'd give me the evil eye if I was too slow.

This pic was taken from Walid's facebook page and his mom is doing such a great job with updates and pics. I find myself looking there first thing every morning for updates and I sure hope she keeps it up and I think she will; she has a lot to say and a lot going on.

http://www.facebook.com/pages/No-Mor...42834155728009

[titaniumed]

I have to admit that I just saw this one last night. I don’t read all the threads due to my vision problems.

As alarming as Walid’s MRI’s look now, it would seem that the Canadian doctors would put some sort of priority on a case like this. The fact that Walid has had no x-rays, seems very strange. You would think that the Canadian doctors would at least want to take a peek and see what’s going on. ???

I saw a kyphosis case on the research channel years ago, and this kid about 16 or 17 years old had a sharp paper clip bend, a 180 degree curve, and they fixed him up in Seattle. The surgeons presented his case, and this kid came up to the podium and all that he could say was that “he was in heaven”. It was about the worst case of kyphosis I have ever seen.

They will get Walid fixed up soon, just like Elias.

Ed

[Elisa]

I too find it odd that he has not had an MRI considering the severity of his kyphosis. I'm almost positive that he was seen by Dr. Riley at BC Children's several times. It's pretty damned obvious to the untrained eye that this kid should be a priority case. At least with Elias, he was never seen by anyone over there and his x-rays got 'lost' so they can always say they didn't know how bad his scoliosis was, blah, blah, but that still doesn't excuse them from being rather rude to me on the phone when I called Riley's office and was told that I could call all I wanted... wouldn't change a thing... he's on the wait list... etc... don't go Shriner's route b/c there will be no followup in BC... more blah, blah and so much precious time wasted! So now I actually don't feel as guilty as I used to b/c I know now that they did nothing for Walid who they actually saw. There was no hope for Elias with them I am convinced.

Edit: 180* kyphosis, yikes! O_O

[titaniumed]

I didnt know if you were aware of these people.

http://www.ombudsman.bc.ca/


Ed

[Elisa]

I have heard of them Ed but never thought about them at all when we were getting nowhere with getting Elias seen for his severe scoliosis. I'll keep them in mind though if in the future I am up against a brick wall here in BC. Thanks for the link.

I re-read Debbie's contribution to someone's blog and it is quite interesting and yes her son WAS seen by a pediatric orthopedic specialist. It's unfathomable why the boy was not on the surgical list and according to the hospital spokesperson, there were other 'more urgent' cases. Really? If so, I'm afraid to see what condition these kids are in. Heck, maybe we've got some kids around here with 180* curve or worse!

http://vonhealthandhome.ca/2011/09/2...aitlist-story/

[Elisa]

Walid is still 'waiting' to be approved. They have a lot of questions that I know we can help them with. I've emailed JO twice now but nothing.

[titaniumed]

The people at Shriners are probably in discussions and are most likely assembling a team of surgeons.....

This is not a simple case.

Ed

[Elisa]

No doubt Ed. Maybe I didn't make myself clear, Walid's mom has been trying to get on here to ask questions but no one is approving her even though I sent two emails to J.O. asking for her to approved so she can ask things on this forum.

[titaniumed]

Oh, I didn’t realize.
Ed

[Doreen1]

Updates on Walid?

Hi Elisa,

I've been checking Walid's facebook page daily and haven't seen any updates. How is Debbie and Walid doing? Do you know if they were able to do the halo yet?

Warmly,
Doreen

[Elisa]

Doreen, I am waiting for Debbie to get back to me with news but so far nothing yet. She did meet up with some people at BC Children's last Friday for a meeting of 'what went wrong' type thing but I don't know anything more than that. As far as I know Walid is still at home and not in halo traction yet. I hope she contacts me soon b/c I am on the edge of my seat waiting for news.