Shriner's St. Louis called!

[sarakay1]

After reading here and listening to everyones helpful advise and stories, we sent our application for treatment to Shriners.


They called today to get more information and and let us know it could be Sept. before they can see David. I don't care how long it takes just as long as David gets to see one of their specialists. I know his curves are not that big. (Two 30* something curves in thoracic spine) I just really want to know how many hemi-vertabras and where.

She asked about his hand tremors and his electric shock sensations. Said this may or may not be there area of medicine but would send us to a neurologist if needed.

I feel like we are moving in the right direction now and maybe we can find out a bit more about what is going on with him.

Thanks for listening.
Sara

[rohrer01]

I sincerely hope they can help your son. It's good that they will be able to determine whether his other symptoms are related to his spine. If they aren't, I'm sure they will refer you to the best neurologist. Best wishes to you and your family, Sarah.

[Lorraine 1966]

Hi Sarah. just read your posts to get myself up to date and I am so very happy that you have heard from Shriners. From what I have read they are simply brilliant there, I truly wish you and your family all the very best.


Lorraine.

[leahdragonfly]

Hi Sarah,

My daughter had vertebral stapling surgery 2 yrs ago at Shriners St Louis. She received excellent care from their amazing staff, and we just love Dr Luhmann. I am so glad that your son will be seen there.

I don't know if you have to travel to get there, but there is a very nice Hilton several blocks away, the St Louis Frontenac Hilton, that has a Shriner's rate of $55/night. We stayed there for our three trips to St Louis and were very comfortable.

Please let us know how things go with your visit.

[sarakay1]

Thanks for the replys. We are very lucky to live only 15 miles away from St. Louis. I've always known we had great childrens Hospitals here but knew nothing about Shriners. I learned about them from this forum.

I keep thinking Sept. is so far away but it really isn't. Before we know it school will be starting up again and our appt. will be here. It will be good to just know a little more and understand what the future holds for David.

[mariaf]

Sarah,

I'm glad your son will be seen at Shriners in St. Louis - I have heard nothing but amazing things about the staff there.

Gayle,

Do you think if Sarah called Dr. Luhmann's nurse they could get David in before September? That seems awfully long to wait for a consult. Even in Philly, as utilized as that clinic is, they can normally see a child for an initial consult in a matter of weeks. Just thought I'd throw that out there.....thanks.

[leahdragonfly]

Hi Maria and Sarah,

That's a good idea to call Janet Schick, who is Dr Luhmann's nurse, and inquire if you could get in any sooner. It is so hard to wait! You can reach her by calling the main number and asking for her by name.

You are so lucky to live that close! We really loved St Louis and had a wonderful time visiting the many kids and family attractions there. The Magic House was amazing...my kids are begging to go back to St Louis again for a vacation. As it turns out we'll probably be making a visit to Dr Luhmann with our 7 y/o son next year.

[mariaf]

Thanks, Gayle! Yes, waiting is so hard and I figure there is nothing to be lost by asking. And as someone who is not shy, I will say it very often gets the job done!

[sarakay1]

Thanks again for your replys and info.

Im not to upset about the wait right now. With only finding out about his scoliosis 2 months ago we have no idea what it is doing. His appt. at Shriner's will put him right at the 6 month mark. Hopefully we will be able to get an idea of what its going to do. I have calmed down a bit and realize waiting is all part of it.

I figure we would concentrate on getting his feet and legs comfortable and in shape this summer so he can enjoy school next year.

And yes, St. Louis is a fun city! We just took the boys to Magic House on Thursday. Living so close we sometimes forget all the great things to do. We have started a list of summer places to visit sense a vacation is not possible this year.

[mariaf]

Hi Sarah,

I realize that some waiting is part of it, but very often 'the squeaky wheel gets the oil'.

I would not be shy about contacting Dr. Luhmann's nurse to see if she can expedite things - it could make a difference and certainly can't hurt.

Just my two cents...