____________________________________ From: [email protected] To: [email protected] Sent: 9/27/2011 2:31:49 P.M. Central Daylight Time Subj: Re: [QUAD-L] HELP FOR KYLE-Oklahoma
Hi I replied to your instant message before seeing the email. The first thing I would do would be call the Nurse Hotline at Craig - 1-800-247-0257. They serve the whole country and Craig is an excellent SCI facility. Is the "cold" referred to a cold as in coughing, sneezing, or is it body temperature. Some people are "cold quads." You may remember Margaret, who used to work here. Sometimes Margaret gets freezing cold and perspires at the same time for no apparent reason. You know I am not a medical person and I probably shouldn't suggest it, but blood pressure and temperature issues sound like they could be autonomic dysreflexia. Sometimes you have to be a detective to figure things out. Another person I know will no longer fly much farther than Chicago to Florida. After several bad experiences, he believes that on longer flights, the pressure in airplanes has an awful affect on his bladder and catheter. If this person is not being treated in a hospital that has lots of experience with SCI, maybe the physician would be willing to consult with someone who is part of the Model System of SCI Care. I hope this will be of some help. Mercedes In a message dated 9/27/2011 12:26:16 P.M. Central Daylight Time, [email protected] writes: ____________________________________ From: [email protected] To: [email protected] Sent: 9/27/2011 12:22:20 P.M. Central Daylight Time Subj: Re: [QUAD-L] HELP FOR KYLE I have looked in two SCIA in ok. the last post was back in 2007 if that tells you why im asking theres nothing in the state that can help other then going to jim thorp for grup... --- On Tue, 9/27/11, [email protected] <[email protected]> wrote: From: [email protected] <[email protected]> Subject: Re: [QUAD-L] HELP FOR KYLE To: [email protected], [email protected] Date: Tuesday, September 27, 2011, 9:08 AM Greetings, I sense a huge frustration on your part as a parent, who offers and wants the best for her child. It is most difficult to reach out across the internet to console you and your family during these rough and impossible times. Quad Life, is not easy... it never has been for most, including their loving families. I truly hope you are in touch with others at the local level for help and support. As you have learned personally, nothing happens overnight and sometimes takes weeks. Knowledge is power and it is most important to get as much knowledge as possible. Have you been in contact with the local Spinal Cord Injury Association in your area. This could be very important in helping you to deal with your son's issues and hopes of improvement. A good diet and proper care may help the situation with infections. I wish you and your family well Best Wishes In a message dated 9/26/2011 6:08:14 P.M. Central Daylight Time, [email protected] writes: HE JUST GOT OFF IV MEDS FOR UTI AND NEEDED SOME WATER NOTHING OTHER THEN THAT CAME UP. THIS HAS BEEN A PROB FOR 20 MO. NOW HAS HAD CT MRI LUMBAR STICK AND N ALL AND NOTHING. IN THE BEGINING HE GOT STAFF, MRSA,ECOLY D ALL THAT STAYS WITH YOU BUT NO ONE CAN GET THE BP OR THIS COLD UNDER CONTROL FOR MORE THEN 3 MO OR SO...
