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soniadykhuizen
Posted Sunday, December 14, 2003 8:57 AM


 

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Hi Cindy, I just wanted to let you know that I will thinking of you and Mandy tomorrow during your appointments and will pray that you get some clear answers with a good plan of action on how to best treat Mandy. I will be calling Aundrea's doctor tomorrow to go over her lab results. She has had more joint pain and persistent sorethroats over the past several days so I am hoping for answers and perhaps a new treatment plan. I will try and post tomorrow night to let you know how things go for us. Take Care and God Bless, Sonia
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CynthiaJ
Posted Sunday, December 14, 2003 8:18 PM


 

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Hi Sonia- It seems like its only page 47 that will not come up. I tried it twice and cant get the page up but 48 came up quick. Yes, Mandy goes at 11:30. They actually called today because they were in clinic all weekend with sick kids. I just love that hospital- they do whatever they have too most of the time. I am worried. She complained today, with my husband that her stomach hurt. She had all her meds and nothing was helping. I went shopping with a friend so I was gone about 4 hours. She has not eaten much either and had some terrible diahrea. Normal somewhat for her but the pain was not so bad this past week. The left leg is already acting up !! I was hoping the injection would last longer. We see both doctors Monday so hopefully we will get some answers. Trust me I will be posting when I get home to get advice. I just get tired of her acting semi-normal and then starting a flare all over. I think we are heading in that direction. With all the viruses going around the house I think she must be coming down with something. Well let me know how Aundreas test results are. I hope you get the answers you need as well. I am going to check the threads and see what else has been on the board. Chat Monday night. Cindy
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soniadykhuizen
Posted Tuesday, December 16, 2003 7:50 AM


 

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Hello everyone, I hope things went well for you Cindy with Mandy's appointments on Monday. Aundrea's doctor called last night. All of her labs that have come back so far look pretty good. Her sed rate was down to 23 and she does still have a low positive ANA titer. The doctors still wont commit to a diagnosis. They say her rash is atypical for systemic during a flare and that they would have expected her to respond better to the low dose 20 day prednisone. As soon as we tapered down she started back with all of the joint pain. So for now we are still on Naproxyn morning and night and will add Zantac to try and help with the tummy problems. I am still frustrated. Aundrea has frequent sorethroats and swollen lymph nodes and the joint pain happens almost every day. I guess I just want answers. I have never been a patient person. Maybe thats a lesson I will have to learn! :-) Hope all of you are doing well and that the kids will stay healthy or get healthy for the holidays. God Bless, Sonia
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CynthiaJ
Posted Wednesday, December 17, 2003 6:17 AM


 

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Sonia- Thanks for the prayers, I appreciate it. At least Aundrea's sed rate is down, that is a good sign. I wonder why she flares right when you start tapering her off the prednisone? Is the Zantac helping and the Naproxyn for the joints? I think we are all impatient when it comes to our children being sick. Mandy's appointment was rather disappointing. They have determined it is not Crohn's. The problems with her intestines should work themselves out while she grows. The are going with Ulcerative colitis (not allergic) and the JA associated with that. The Rhuemy said that could change if she starts the knee flares again soon. They are going to monitor her and I take her back in six to eight weeks. They put her on a new medication called Asacol for the colitis and the prednisone for both. We dont start tapering her off for two more weeks. I have to call the Gastro in two weeks and let him now how she is doing. If she is not better then we either do another colonoscopy or put her in hospital for IV steriod treatments. She only weighed 27 (no clothes or shoes). She has only gained one pound since starting Pred. I agreed with the Gastro that she should have gained more; usually kids in the first month of Pred gain 3 to 5. O well, what can you do right? At least we have a good treatment plan. They did do her lab work again so I get those results next week. Let me know how Aundrea is doing? Does anyone else have colitis problems? Any information would be helpful. Take care Cindy
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soniadykhuizen
Posted Wednesday, December 17, 2003 9:42 AM


 

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Last Login: Thursday, July 31, 2008 12:32 PM
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Hi Cindy, I was just talking to my sister last night and she was telling me that for 2 years the doctors were convinced that she had ulderative colitis and not chrones due to results of some lab tests. They finally just started treating her for Chrones disease and sure enough she improved. She ended up at Mayo Clinic where they ran some special tests and were easily able to diagnosis her with crohnes disease. Hopefully, Mandy will just respond to treatment regardless of what her actual diagnosis is. Aundrea has done pretty good the last couple of days. She has the sorethroat at night and some joint pain but not to severe. She gets the rash every night but its not bothering her. She has a lot of fatigue and I try to make sure that she is getting enough rest. Its nice that she can take a nap at school when she feels she needs it. I hope things go o.k. for Mandy when you taper down on the pred. Take Care, Sonia
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CynthiaJ
Posted Wednesday, December 17, 2003 7:09 PM


 

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Last Login: Thursday, July 31, 2008 12:32 PM
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Hey girl- Glad to hear Aundrea is showing some improvement. Have you tried a humidifier at night while she sleeps. That may help the sore throat. When my kids have colds I ran it every night. We finally bought a large on that sits at the end of the hall near all the bedrooms. Works great !! Does she get the rash every day? Getting enough rest is the most important thing for her right now. School should be out soon so maybe she can catch up then as well. Its wonderful the school is working with her and with your treatment plan. She should be able to rest when she gets tired. Well, I am sorry your sister went so long with out a diagnosis. Thats terrible, usually in adults its easier to detect. They still have not called in this new med, well they did but it was the wrong one again !! SO, they should call me in the morning with the new one. Take care Cindy Maybe this will post this time.
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