Guest guest Posted May 3, 2000 Report Share Posted May 3, 2000 Yea , I hope that all goes well with the new medicine. Keep us posted on when you get to start and stuff and how it is going. Good news! > Just thought I'd update quickly: > > ViroPharma called today and I was officially APPROVED for the use of > Pleconaril for presumed chronic enteroviral meningoencephalitis. > > My doctor has to send a complete medical history and fill out some > 'investigator' paperwork, because it has to be done a bit like a study, > and she doesn't know how to do it (she's never done anything like this > before, as a primary care doc for generally healthy med students!), but > the ID doc is helping her. As soon as that gets in, they will ship the > med. It's 10 days, three times a day, orally. No side effects have > ever been reported. > > If it works, I will be the person to write the case report for the > journals -- my internist, ID doc, and neuro will be authors on the > paper, as well, but I did all the investigative work, and they've > promised I can write the paper (being published in journals is a big > deal when applying to residencies, etc... it's a large chunk of what an > academic reputation is based upon). :-) > > It may take months to see the results (the case report I read said it > took 5-7 months for one other PID patient to experience the benefits), > but I feel like even if it doesn't work, I've now done everything I > possibly can to try to fix my neuro issues (within the realm of current > scientific knowledge). After 6 cases of meningitis and encephalitis in > less than 2 years, and after peripheral neuropathy (numbness and burning > pain in my hands and feet), seizures, headaches, joint pain, and messed > up reflexes, I'm just hoping to see any improvement, no matter how > small. HOPE.... that's the key to it all. > > I'm VERY happy... just thought I'd share the good news! > Take care, > > > ------------------------------------------------------------------------ > High rates giving you headaches? The 0% APR Introductory Rate from > Capital One. 9.9% Fixed thereafter! > http://click./1/3010/7/_/480115/_/957404168/ > ------------------------------------------------------------------------ > > This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2000 Report Share Posted May 4, 2000 Congratulations ! Very cool! I do hope that this medication works for you. I'll be praying! Diane, Mom to Kody Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2003 Report Share Posted March 30, 2003 In a message dated 3/30/2003 1:59:12 AM Central Standard Time, positivelyann@... writes: > What a precious, precious minute that must have been! I am so glad he > called > and that he is stationed in Germany! > > Where in Germany? Tom wants to know.... in Bama http://hometown.aol.com/mdl1031/myhomepage/profile.html Surgery- RNY to DS revision on12/6 -377.5 12/17 - 346.5 ( minus 31lbs) 01/15- 338.1 (minus 39.1lbs) 02/12-330.0 (minus 47.5 lbs) 03/02- 325 (minus 52.5 lbs) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2004 Report Share Posted August 14, 2004 , I praise God with you! I am so glad to hear the progress your son is making. I know that brings you more joy than you can explain! I feel your joy! I can only imagine how good it felt when he began to let you hug or cuddle with him again. Savor every one of those moments! Yea!!! Corinna, TX Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2004 Report Share Posted August 14, 2004 Wahoo! That's truly wonderful ! Congratulations to both of you. It's awfully nice to hear good news now and then! in NV Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2004 Report Share Posted August 14, 2004 Hi, My son Luke has had a fear of choking and rituals around food that we noticed for the first time at the end of April. He practically stopped eating and lost about 5 pounds. He would only eat soft food and would not touch anything that he thought he could choke on! He was eating extremely slowly and chewing for a long time and was having difficulty swallowing. He has slowly been eating more and more foods, but would especially avoid any meat. Well last night I made steak, corn on the cob and broccoli, some of his previously favorite food. He asked what he was going to eat and I said I don't know what are you going to eat? To my shock he said well maybe I will try the steak. He sat down to dinner and ate like a man who had been on a desert island. He was eating so fast we had to tell him to slow down and breath. I can not believe the diffference in my son since starting medication 5 weeks ago. I am seeing glimpses of my healthy boy. He went through a long time where I could not touch him or kiss him. He is now crawling in my lap and cuddling, last night I kissed him on the cheek as he got up and he accepted it without any fuss. I just want to share my complete joy with you all. I know we will have bumps in the road, but I don't feel like we are in a dark hole anymore! Thanks for sharing my joy. Praise God! Quote Link to comment Share on other sites More sharing options...
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