Guest guest Posted June 23, 2003 Report Share Posted June 23, 2003 Jan TY for your post. We see the doctors tomorrow and Im going to discuss the side effects, another med and some counselling for her. I also want her and I to see a dietican. They may start her on IMURAN tomorrow depending on her bloodwork results tomorrow. I was warned about the side effects but I never dreamed they would be this harsh, plus her trying to understand why her body is doing this to her. We talked of charting her progress on a chart so she can actually " see " she is getting well again. I will ask the doctors tomorrow what her target blood levels need to be. I sit back and ask myself why was Kels chosen to have this disease? Why are some children afflicted with life changing events and not others? As a parent U sit back and ask urself am I being punished by " God " or a " higher power " because of something I did or didnt do? The family and friends who have been so supportive along with this group is a huge help. I am trying to remain positive and stay strong for Kelsey but at times I feel so angry this is happening. I will take all your recommendations and apply them tomorrow at the appointment. TY again for being there for us. Trish and Family > Trish.....it must be heart wrenching for you to watch Kelsey distraught. Im afraid I dont know if she has only mild or more serious liver effects from AIH. When I was first dx I refused to go onto pred...my specialist tried to persuade me to go on an 'alternative' which was not prednisone. I guess it must have been imuran or 6mp, but my memory remembers it being a different name altogether. When I eventually went on to pred my liver was pretty bad and had no choice. But I think you should talk to Kelsey's specialist, for one thing they may be able to lower the dose if her lfts have responded. Its a hard road & I cant believe parents are left floundering without being prewarned or given advice on what to say and do with the mood swings, the nightmares can be so vivid that they can merge with being awake. The appetite is huge, especially for sugar & limiting her food intake would be a bit harsh. Have a supply of healthy snacks available whenever she wants them. Its true the weight comes off provided we stick to healthy foods. Theres nothing wrong with a cream donut once a week, but not everyday, if you know what I mean. The doc needs to have a chat with Kelsey about the side effects & explain to her why, and it wont be forever. Chart her progress with her & specifically ask the spec when or at what stage will the pred be reduced. When that target shows up on your chart, you know then that there's light at the end of the tunnel, and Kelsey needs to know that. Kids are very cruel, perhaps her school can make up a little project about autoimmune diseases & asthma come to that, as they're both treated with pred. At least her school friends will know whats happening as well. I only wish I could be of more help to you. Another thing I used to get what I call icecream headaches a lot & I refused to take anything stronger than panadol but laying down for an hour was the only way to get rid of them. It used to happen 10 minutes or so after taking the pred dosage....must have literally given me a rush to the head. Get that doctor of hers involved with a bit of counselling & to make sure they're aware of the effects & to make sure they dont keep her on pred for one minute longer than she needs to. Start pestering them & dont feel guilty about doing so. > Love Jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2003 Report Share Posted June 24, 2003 Hi Jan! Ty so much fo rthe congrats. Kels was so very happy too. ((hugsssssss)) Trish -- In , " Ian & Janet " <ianjanaust@x> wrote: > Trish.....its made my day hearing that Kels lfts have improved.....the light is there at the end of the tunnel, just you all hang on. > Love Jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2003 Report Share Posted July 4, 2003 Hi Jan I hope Ur daughter will be alright, being alone thru that sounds like hell. Have U heard from her yet? I should have said London, Ontario....Im sorry! But it was named after London, England. I have never been to the UK. My husband has relatives in Germany but I havent been there eitheir. Hes been there 3 times in the last 30 years. We had been discussing maybe my husband, his father(German immigrant at age 17) and my daughter Kelsey were thinking of going for a trip in October this year. She is very interested in her family roots and wants to see where Opa grea up, where his parents are buried, and meet the relatives shes never seen. We are hoping her health will continue to improve so she will be able to go. I cant beleive U ar ehaving snow there now and today here its 98 degrees. So amazing what happens on the other side of the world. I hope ur daughter makes it home safely. Trish > Hi Trish....pleased to hear Kels continues to improve. What part of UK do you live? All my brothers & sister live in England, one up north..Cumbria, the others in the south in the New Forest and outskirts. I used to love visiting england. NZ is in the middle of a severe cold weather storm coming straight up from Antartica. We never have snow & last year we only had one small frost...but snow is forecast here in the Bay of Plenty, which is almost sub-tropical. My daughter started out for home this morning from varsity and weve had several calls already from her on her mobile. She's cut off apparently in white out conditions, with cars overturned & skidded off the road all over the place. Shes entering the North Island's plateau & mountain region, she says she cant turn around or go forward, so we're waiting to hear whats happening. Its a very lonely & isolated region so my stomach is churning and am becoming more and more anxious. > Love Jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2003 Report Share Posted July 24, 2003 ((((HUGGGSSSSSSSSSSSSSSSSSS))) and thank you so much Jan!! Trish > Hi Trish & Kels...... What a special little girl you have, the doctors hearts would have melted at such a wonderful gift of homemade cookies made by Kels. Its great news the pred is able to be lowered. Someone used to post a lovely saying....Even the snail got to the ark....slowly but surely. Trish you're going to be a great health advocate and I think Kels wont be far behind you by the sound of it. > Love Jan Quote Link to comment Share on other sites More sharing options...
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