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(Date Posted:21/11/2008 16:13:17)
| | any help in the Houston area?[ 21/11/2008 2:05 PM] | | | Hello everyone,
My name is Andrea Buckley and my 21 year old daughter, Rachel, was diagnosed with LPHS almost 2 years ago by Dr. Lee Hebert at OSU Medical Center while she was attending OSU. While we are very grateful for the diagnosis, he led us to believe that the cause for her condition was from her kidney stones (she has had and passed about 3 dozen in the last 3 years) and once we got that problem corrected, her pain would go away. She has been stone-free for almost a year and her risk almost of producing new stones greatly reduced due the diet changes and potassium citrate. Unfortunately, her pain has not subsided. We moved her home with us to Cypress, TX which is just outside of Houston at the beginning of the Summer because she was just not able to manage her pain so far from home. School has also been put on hold because although she did all the required work and had A's, B's and a few C's academically, her professors were failing her due to low attendance in class because of her pain. None of her doctors in Texas have heard of LPHS. Her pain managment doctor has her on Opana ER 20 mg bid, Opana 10 mg tid prn, lyrica 100 mg tid, and xanaflex 2-4 x day. She also had Fentora 100 mcg for severe pain but she won't prescribe it anymore because Rachel "took too many". The script was for 28 pills and that was suppose to last her 3 months even though it was written to be used q 8 hours as needed. We are currently in the hospital after being admitted through the ER for pain management. This is a first for us. Usually they just assume she is passing a stone or has recently passed one due the blood in her urine, hydrate, medicate and send her back home even though her pain is still 5-6. They are hooking us up with a new pain specialist who has suggested increasing her Opana ER to 30 mg bid and changing her muscle relaxant to Baclofen. It was also suggested to us to try and find docs at the Med Center in Houston who may be doing LPHS research or at least have heard of it or treated patients in the past. Has anyone heard of any MD's in the Houston area who we might be able to contact? Thank you so much. | |
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