Who are the best VEPTR Doctors?
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Posted 2012-12-21 1:29 AM (#41640)
Subject: Who are the best VEPTR Doctors?


New User

Posts: 2

I'm looking to find a good VEPTR doctor for my grand daughter with TIS. We live in Illinois.
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Zoes Nana
Posted 2013-02-10 3:52 PM (#41652 - in reply to #41640)
Subject: Re: Who are the best VEPTR Doctors?



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Location: Plymouth, Pennsylvania
SNIP, MOST OF THE TIME THIS BOARD IS QUIET...SORRY...THERE ARE VEPTR SITES NOW ON FACEBOOK AND THAT IS WHERE YOU WILL FIND MANY PARENTS...
BUT I WOULD LIKE TO ANSWER YOU QUESTION...ZOE HAS BEEN A VEPTR RECEPT NOW FOR ALMOST 13 YEARS...SHE IS AT THE END OF THE THE PROCESS...WE LIVE IN PENNA. AND TAKE HER TO BOSTON TO DR. JOHN EMANS...IT WAS DR. EMANS AND DR. ROBERT CAMPBELL WHO DID ZOE IMPLANTS TOGETHER...DR. CAMPBELL DEVELOPED THE VEPTR IN TEXAS, BUT IS NOW AT CHILDRENS HOSPITAL OF PENNSYLVANIA...I KNOW THERE ARE REALLY GREAT SURGEONS ALL AROUND THE COUNTRY, BUT I STILL (MY OPINION) IS THAT IMPLANTS SHOLDA T LEAST BE CONCIDERED BEING DONE BY 'CORE' SURGOENS FOR THIS SURGERY...ANY QUESTION PLEASE FEEL FREE TO EMAIL ME ANY TIME...JOBEY44@AOL.COM http://www.facebook.com/r2bfoundation?ref=ts&fref=ts

http://www.facebook.com/groups/56052176312/
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kchristensen
Posted 2013-02-25 9:47 AM (#41656 - in reply to #41640)
Subject: RE: Who are the best VEPTR Doctors?



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Location: Phoenix, AZ
Hi Joey. We live in Arizona, but flew to Philadelphia so that Dr. Campbell could do the initial implants for Carter's surgery. We have a doctor, who is extremely competent and experienced who does the expansions here in Arizona. For us, we felt that Dr. Campbell had the experience and knowledge of the surgery we wanted for our son. He created the VEPTR and taught so many other surgeons how to use them. How old is your daughter? Have they said when she will need the surgery? Carter had hy surgery at 18 months. I would highly suggest getting your daughter checked out in other areas. Our hospital checked for a tethered spinal cord when our son was born, but said he did NOT have one. We happened to be seeing a neurologist for cists in Carter's brain. That neurologist no longer worked there, so I made an appointment with the head of the neurosurgery. He was being thorough and looked at a previous CT or MRI, I can't remember which, and found the tethered spinal cord. That very likely could have lead to paralysis if not fixed. So... I just try to pass the word along to other parents, that having a few extra tests could really be beneficial. I hope you found someone from your state on Facebook. Good luck to you and your family!
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jayismyson
Posted 2013-04-03 3:33 AM (#41686 - in reply to #41640)
Subject: Re: Who are the best VEPTR Doctors?


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Posts: 2

BOSTON CHILDRENS HOSPITAL

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Dianne
Posted 2014-12-09 9:13 PM (#43436 - in reply to #41652)
Subject: Re: Who are the best VEPTR Doctors?


Member

Posts: 5

How do I join the group on fb? I have questions. Would you know whether it's common for this surgery to be done on a 17-18 lb child? I just want to be sure the surgeon in Birmingham, AL is the best man for the job. How can I do that?
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Matt
Posted 2014-12-09 10:39 PM (#43437 - in reply to #41640)
Subject: Re: Who are the best VEPTR Doctors?



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It is always good to have a healthy amount of body fat to provide a buffer between the skin and the implants. The doctor will be the one to make that call. It's a struggle for many VEPTR children who are often skinny.

If the doctor is concerned, you may want to speak with a nutrionist, but basically the solution is the same -- eat as much as you can, as healthy as you are able while still putting on the pounds. Pediasure is a good way to get nutrition and calories, and there are many OTC caloric enhancers (Like duocal) which are basically just favorless fats and carbohydrates you can add to any food.

No idea about the surgeon there. Maybe someone else here has been there can report back.
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Dianne
Posted 2014-12-11 7:40 AM (#43447 - in reply to #41640)
Subject: Re: Who are the best VEPTR Doctors?


Member

Posts: 5

Thanks for the reply! We have had AuBree on Pediasure 1.5, which isn't even available in stores), for over a year. Weight gain is for sure a problem. Perhaps I will get some of that duocal to add to it.
I've heard nothing but good things about the surgeon. I'm just nervous. I want to get to know the team better. I've only met each once. I'm sure my confidence will come.
Thanks again!
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