Anyone familiar with Kluge in VA?

SharonD · 12-15-2009, 10:02 PM

new here..first post.. looking for info on Kluge Rehab Ctr in Charlottesville VA. My 14 yr old son Robert had surgery to repair a significant spinal fluid leak, ended up with a blood clot that injured/compressed his spine at the T4. This just happened last week, my head is spinning trying to understand what is happening and what his future holds. We are originally from NJ, now live in VA, Robert is a huge Rutgers fan! Any information you can provide to a frightened mom is appreciated. Thank you.

deel90 · 12-15-2009, 10:13 PM

hey sharon i went to kluge when i had my sci..any questions you have ill try to answer

SharonD · 12-15-2009, 10:37 PM

This is so new to me I dont even know what to ask yet! Did you feel that you received the best care at Kluge? How long ago were you there? If you had a 14 yr old son with a SCI would you take him there?

cheesecake · 12-17-2009, 06:48 PM

Quote:

Originally Posted by SharonD

This is so new to me I dont even know what to ask yet! Did you feel that you received the best care at Kluge? How long ago were you there? If you had a 14 yr old son with a SCI would you take him there?

Given that he is 14, I would send him to either Shepherd or Kennedy Krieger. You can get info specific to paralysis at www.paralysis.org
Submitt a question to an Information Specialist and they will send you a new injury package.

quad79 · 12-17-2009, 10:01 PM

I wouldn't send my child there if I had the choice. I have a c-7 quad friend that was sent home from there not even knowing where to start on feeding herself. I know we all can't do everything another might be able to, but that's ridiculous! The saddest part is that she was also coming home to a baby she had no clue what to do with. She was 17 at the time & I know things would've been different if she would have went somewhere else. Her parents thought all because it was @ UVA that it was a good thing. Not even until she/they met me did they realize how she was robbed.

graybeard · 12-17-2009, 10:29 PM

Hi Sharon...very sorry to hear about your son, but given his reflexive movements, yes, those are HUGE!.......I went to Mt Vernon in Alexandria, and it wernt the best, not the worst either. Best of luck to you and your family....really hope he recovers from this injury.

cheesecake · 12-18-2009, 08:42 AM

Sharon~ I sent you a private message with more info. You can find the PM in the upper right hand corner. It says Your Notifications.

madmaddmother · 12-15-2009, 10:48 PM

Another Mom here...welcome! bringing back a lot of memory's...for me I was in such a space that I didn't even know what questions to ask...didn't find ccc until the second year so it is good you found carecure early! The answers are here...you will get through this...you will! Just remember to take care of you, easier said than done I know...but it is the most important thing you can do! hugs, judy

deel90 · 12-15-2009, 10:53 PM

i did receive pretty good care there..i was there 2 months, i think i would look for a better rehab i mean they did do pretty good but i think they could have done more you know? but i was there 3 years ago so im not sure how it is now...would you like to get in chat and ill talk to you bout it

SCI-Nurse · 12-16-2009, 01:56 AM

Kluge Children's Rehabilitation Center and Research Institute is CARF accredited as an acute general rehabilitation center. They are not specifically accredited as a Spinal Cord Injury System of Care.

Any chance you can get him to Shriner's in PA instead? Their SCI program is excellent. Kennedy Krieger in Baltimore is also highly recommended.

(KLD)

12-15-2009, 10:02 PM	#1
SharonD Senior Member Join Date: Dec 2009 Location: Richmond VA Posts: 751	Anyone familiar with Kluge in VA? new here..first post.. looking for info on Kluge Rehab Ctr in Charlottesville VA. My 14 yr old son Robert had surgery to repair a significant spinal fluid leak, ended up with a blood clot that injured/compressed his spine at the T4. This just happened last week, my head is spinning trying to understand what is happening and what his future holds. We are originally from NJ, now live in VA, Robert is a huge Rutgers fan! Any information you can provide to a frightened mom is appreciated. Thank you.

12-17-2009, 10:01 PM	#5
quad79 Senior Member Join Date: Jul 2007 Posts: 3,843	I wouldn't send my child there if I had the choice. I have a c-7 quad friend that was sent home from there not even knowing where to start on feeding herself. I know we all can't do everything another might be able to, but that's ridiculous! The saddest part is that she was also coming home to a baby she had no clue what to do with. She was 17 at the time & I know things would've been different if she would have went somewhere else. Her parents thought all because it was @ UVA that it was a good thing. Not even until she/they met me did they realize how she was robbed. __________________ ______________________________________ Proud owner of an AR15

12-18-2009, 08:42 AM	#7
cheesecake Moderator Join Date: Aug 2001 Location: USA Posts: 7,522	Sharon~ I sent you a private message with more info. You can find the PM in the upper right hand corner. It says Your Notifications. __________________ Every day I wake up is a good one

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12-15-2009, 10:13 PM	#2
deel90 Senior Member Join Date: Jan 2009 Location: virginia Posts: 415	hey sharon i went to kluge when i had my sci..any questions you have ill try to answer

12-15-2009, 10:37 PM	#3
SharonD Senior Member Join Date: Dec 2009 Location: Richmond VA Posts: 751	This is so new to me I dont even know what to ask yet! Did you feel that you received the best care at Kluge? How long ago were you there? If you had a 14 yr old son with a SCI would you take him there?

12-17-2009, 10:29 PM	#6
graybeard Senior Member Join Date: Apr 2005 Location: Va Posts: 1,634	Hi Sharon...very sorry to hear about your son, but given his reflexive movements, yes, those are HUGE!.......I went to Mt Vernon in Alexandria, and it wernt the best, not the worst either. Best of luck to you and your family....really hope he recovers from this injury.

12-15-2009, 10:48 PM	#8
madmaddmother Senior Member Join Date: Oct 2008 Location: Central Oklahoma Posts: 960	Another Mom here...welcome! bringing back a lot of memory's...for me I was in such a space that I didn't even know what questions to ask...didn't find ccc until the second year so it is good you found carecure early! The answers are here...you will get through this...you will! Just remember to take care of you, easier said than done I know...but it is the most important thing you can do! hugs, judy

12-15-2009, 10:53 PM	#9
deel90 Senior Member Join Date: Jan 2009 Location: virginia Posts: 415	i did receive pretty good care there..i was there 2 months, i think i would look for a better rehab i mean they did do pretty good but i think they could have done more you know? but i was there 3 years ago so im not sure how it is now...would you like to get in chat and ill talk to you bout it

12-16-2009, 01:56 AM	#10
SCI-Nurse Moderator Join Date: Jul 2001 Location: USA Posts: 41,320	Kluge Children's Rehabilitation Center and Research Institute is CARF accredited as an acute general rehabilitation center. They are not specifically accredited as a Spinal Cord Injury System of Care. Any chance you can get him to Shriner's in PA instead? Their SCI program is excellent. Kennedy Krieger in Baltimore is also highly recommended. (KLD)