Guest guest Posted October 2, 2004 Report Share Posted October 2, 2004 This is a sure question I can answer as right now my daughter Kelsey who is 9 (dx June 2003 at age 8) is now at this stage of the game. Yes once U have been immune supressed for 6 months other levels need to be monitored. I get results of her white cell count and her absolute neutrophil level. YOur neutrophil level is what they use to see how well your body could fight off an infection. The goal for Kels neutrophil level set by her Liver Specialist team is 1.9, normal range (but whats normail with AIH?) is 4.5-8.5. Once her nuetrophil level gets to 1.9 he slowly increase her imuran again to keep her ALT and AST under control, right now they are okay, but her neutrophil olevel is low and set at 1.2 as of yesterday. Her white cell count as of yesterday is 2.8 (the so called normal range is 5.0-12.0), we are working on a 5.5. I have authorization from Kels' doctors to get whatever results I wish. Her doctor has a standing order here for her bloodwork, which includes CBC, full chemistry and full enzymes and cardiac markers. If U are getting all this done, and U get ur own results of ur bloodowrk, unless ur doctor has ordered it and given permission for U to have it they wont give it or do it. As far as getting ill, for Kelsey right now, when she gets ill shes VERY sick. She was home sick a week ago. Fatigued to the point of exhaustion, head cold, aches, pains. Ur typical cold for a normal person but for her what might make a person feel lousy for 3 days, makes her feel lousy for 10 days. What I do for her is ALOT of rest, even if I have to sit on her, she will rest. When she is fatigued she doesnt eat much, so lots of liquids, soups, fruit. Headaches is Tylenol and an ice pack on teh head. She will get a flu shot this month, takes vitamin C daily. She had been vaccinated against chicken pox and meningitis. As vacines come out here in Ontario, she will be getting them no matter the cost to her dad and I. The flu shot wont necessarily keep U from getting the flu but it will help Ur body to fight it better if U do get it. Kels has been getting flus shots since age 3. Hope this helps a bit. Trish > > --------------------------------- > I had a sebaceous cyst removed a few months ago from > my inner thigh > and the only problem I had with it was the fact it > took longer to > heal than it would have normally. Since we are immune > suppressed it > does take a little longer to heal than it would for > someone that is > not taking imuran and prednisone. Other than taking a > couple of > weeks longer to heal I had no other problems. I hope > it all goes > well for you. > Sandy in Texas > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2004 Report Share Posted October 5, 2004 Thanks for the info. Trish. I guess I should start to get my white cell count and neutrophil results at the same time as the office gives me the info. on the LFT's. I know that I have the same bloodwork done as Kels does but I forget to ask about the immune system results. Since I work with young kids I should be ultra careful with germs. How is school going???!!! Kathy --- Trish <son_ya100@...> wrote: --------------------------------- This is a sure question I can answer as right now my daughter Kelsey who is 9 (dx June 2003 at age 8) is now at this stage of the game. Yes once U have been immune supressed for 6 months other levels need to be monitored. I get results of her white cell count and her absolute neutrophil level. YOur neutrophil level is what they use to see how well your body could fight off an infection. The goal for Kels neutrophil level set by her Liver Specialist team is 1.9, normal range (but whats normail with AIH?) is 4.5-8.5. Once her nuetrophil level gets to 1.9 he slowly increase her imuran again to keep her ALT and AST under control, right now they are okay, but her neutrophil olevel is low and set at 1.2 as of yesterday. Her white cell count as of yesterday is 2.8 (the so called normal range is 5.0-12.0), we are working on a 5.5. I have authorization from Kels' doctors to get whatever results I wish. Her doctor has a standing order here for her bloodwork, which includes CBC, full chemistry and full enzymes and cardiac markers. If U are getting all this done, and U get ur own results of ur bloodowrk, unless ur doctor has ordered it and given permission for U to have it they wont give it or do it. As far as getting ill, for Kelsey right now, when she gets ill shes VERY sick. She was home sick a week ago. Fatigued to the point of exhaustion, head cold, aches, pains. Ur typical cold for a normal person but for her what might make a person feel lousy for 3 days, makes her feel lousy for 10 days. What I do for her is ALOT of rest, even if I have to sit on her, she will rest. When she is fatigued she doesnt eat much, so lots of liquids, soups, fruit. Headaches is Tylenol and an ice pack on teh head. She will get a flu shot this month, takes vitamin C daily. She had been vaccinated against chicken pox and meningitis. As vacines come out here in Ontario, she will be getting them no matter the cost to her dad and I. The flu shot wont necessarily keep U from getting the flu but it will help Ur body to fight it better if U do get it. Kels has been getting flus shots since age 3. Hope this helps a bit. Trish > > --------------------------------- > I had a sebaceous cyst removed a few months ago from > my inner thigh > and the only problem I had with it was the fact it > took longer to > heal than it would have normally. Since we are immune > suppressed it > does take a little longer to heal than it would for > someone that is > not taking imuran and prednisone. Other than taking a > couple of > weeks longer to heal I had no other problems. I hope > it all goes > well for you. > Sandy in Texas > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2004 Report Share Posted October 5, 2004 School is CRAZY!! So much work. Hubby is working 4 hours away and comes home when he can, which has only been once in the past 3 weeks, Kels has HW and projects too. Poor dog is neglected. Poor kid is neglected. LOL Thank gawd I can drink wine. Hugs Trish ~stressed out~ > > > > --------------------------------- > > I had a sebaceous cyst removed a few months ago from > > my inner thigh > > and the only problem I had with it was the fact it > > took longer to > > heal than it would have normally. Since we are > immune > > suppressed it > > does take a little longer to heal than it would for > > someone that is > > not taking imuran and prednisone. Other than taking > a > > couple of > > weeks longer to heal I had no other problems. I hope > > it all goes > > well for you. > > Sandy in Texas > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2004 Report Share Posted October 6, 2004 Thank goodness for thanksgiving! Nothing like a three day weekend! Happy turkey day. K. --- Trish <kissemesoftly@...> wrote: --------------------------------- ______________________________________________________________________ Post your free ad now! http://personals..ca Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2004 Report Share Posted October 6, 2004 I always forget that your Thanksgiving is a month before ours! Happy Turkey Day! Cora > > > > --------------------------------- > > > _____________________________________________________________________ _ > Post your free ad now! http://personals..ca Quote Link to comment Share on other sites More sharing options...
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