Guest guest Posted December 11, 2000 Report Share Posted December 11, 2000 nne, where are you from in NC. I am from Oxford. It is about 30 minutes north of Durham. My son, who is 19 is the one with AIH. He's a student at UNCG. He is seen by DR Killenburg at Duke. How about you? It is nice to find other North Carolinians. Rosemary Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2000 Report Share Posted December 21, 2000 I think it must just be North Carolina that keeps the alt's and ast's going back up. Hunt, my son, seems to have the same problems that you do with that. He has reached normal levels twice in the last year but within three months the numbers have climbed way back to the thousands again. Hunt is going to Duke and seeing a hepatologist there who is also on the transplant team. We get real frustrated with this up and down, up and down. We are at the downs right now but not normal. HIs were 53 and 118. He has to have labs done every week right now. He is on 100 imuran and 40 prednisone. The first time we started with 20 mgs., got to normal, flarup so we went to 40 mgs.. got to normal, flare up again and so we went to 60 mgs and are down to 40 from that. I am beginning to wonder if the imuran is doing it's job also. I think since Hunt is so young, they were very scepical to leave him on high dosages of pred very long, so they were lowered too fast, but since the first time i have no clue what is going on. I just wish it would stabelize. Where did you say you were from and seeing a dr? Here's to NC huh? LOL Rosemary Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2001 Report Share Posted January 26, 2001 Sure am glad that it is over and done with for you. Yeah, I remember the time after the biopsy was the hardest thing. Now go and have a great weekend. Rosemary Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2001 Report Share Posted February 5, 2001 I have a hypothyroid . I am wondering if you ever get pain in your throat. I get this feeling like someone is pinching me there all the time, wondering if that could be why. Also anyone that may know( I lost y password so cant start a thread, and the says my birthday is wrong,.lol) I am aving pain also above my belly botton. VEry bad pain. I was checked for appendix and that was fine. Im hoping this isnt abdominal varicees? I dont the symptoms. I asked my doc to check them and he said he would because he dont think I have that as my protime and a few other tests were normal. Any info would be aprecciated. Amatrine Re: [ ] nne >Thanks nne: I had most of my thyroid removed when I was 11 years old. >At the time I was one of the youngest to have this operation done. I never >had any more problems until about three years a go. I started to loss my >memory and I couldn't think straight. Also was having panic attacks and my >doctor ran some test and found out I needed thyroid hormones. It sure made a >big difference but I still can't remember the day of the week. LOL Genny > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2001 Report Share Posted February 5, 2001 Hi nne... Well Tys first day back was not too bad...His friends were all glad to see him and his new classes are great.... 2 years ago Ty was put on the 504 plan....which is a government plan that sounds just like your IEP....Making sure everyone is doing their job to the fullest....Well without any warning they now tell me that I needed to renew it....Why....His diseases are chronic.....they don't go away...and why didn't they just let me know... Like you said even finding out about the 504 was like digging for gold...for years no one ever told us about it....It was purely by accident that we found out about it....If these programs are out there to help why do they keep them a secret.... So we are working on getting the rest of his schedule straightened out...He only ran into one teacher from the last semester who was rather rude to him and not much help in getting him the work....I had even called the school while he was in the hosp to get his homework so when we came home he could start....unfortunately when we were in the hosp he was not well enough to work on it...When I went to pick it up...on a scheduled visit with the guidance counselor.....not only was the counselor not available...I was furious...Plus that one teacher didn't bother to get his work together and leave for him......Nice huh...so as you can see we have some work to do... Thanks for your concern and letting me know that there are such things available....Just us talking about it here will spread the word to other parents who are having difficulty with their school system... Talk again soon... Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2001 Report Share Posted February 7, 2001 I HEAR YOU....I have a call into the principal...we will see how long this takes to get an answer from him... In themean time I had to go to the Rehab and go over my mothers bill there...Her Social Security sent one letter telling what she would be getting and how much should go to the Rehab and Social Services and her case worker sent different amounts...So first I had to spent time on the phone..calling both SS's and her bank and her health insurance co.... and then in the office at the rehab..then visit with my mom ....I am spent... YIKES...I feel like that Robot in some space movie that runs amuck yelling ''OVERLOAD''... Tomorrow I will be speaking to the school nurse to get the 504 pushed thru...NOW... Hopefully I will get some answers...and some help for Ty. Thanks so much for you concern and interest....I don't feel so alone. Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2001 Report Share Posted March 13, 2001 Hi nne, Hunt had his labs done yesterday and we have not gotten the reports back yet. If they are still normal, then on Friday he will drop to 25mgs. Every 3 weeks we are going down if possible. DR Killenburg said 2 to 3 weeks but everyone says the slower the better so that is what we are doing. As for Hunt's term paper, I agree with you. I think before we left we had narrowed it down to either Hepatitis or AIH. If he does it on hep, then AIH will be included and he will still learn a lot from it. He turned in both topics today to his Prof and will get them back Thursday with any remarks. He hates to write and also hates science so I do not look forward to this for him. His sister is a bio major but the problem is that she is so much further advanced in the subject that he is, that she is of no help, but she will be when it comes to reviewing the paper. Keep Greensboro hopping and if you get a chance go see Hunt at O'Charleys. He works Wed, Fri, and Sat night and then again all day Sunday. We may try to go up one day this weekend. One of the kids from this area is having his senior recital on Sat so we may just have to go. Tar Heels really screwed up last weekend, didn't they? Hope you are doing well today. Rosemary Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2001 Report Share Posted March 13, 2001 What are you lft's now? Rosemary Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2001 Report Share Posted March 15, 2001 Praying for the meds to work for you! My daughter Elyse has been on them 2 mo now, and showed improvement in one. That was such a relief, I hope you have the same good news...... [ ] Re: nne > Rosemary, > > At the end of Feb they were ALT 428, AST 198, GGT 414. Will have more > blood work @ the end of March, and hope to see that the 6MP is > helping. By then I will have been on it for 2 months. Keep your > fingers crossed! > > nne > > > > > What are you lft's now? > > > > Rosemary > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2001 Report Share Posted March 15, 2001 April, Thanks for the good wishes...I am glad Elyse is responding so well..I know it makes both of you feel better to see positive results...keep it up!! Hope I can get there soon also! nne > > > What are you lft's now? > > > > > > Rosemary > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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