Guest guest Posted June 19, 2001 Report Share Posted June 19, 2001 Hello everyone. Last night was an absolute nightmare. Clarice refused to walk for several hours and when she finally did it was a nasty limp. When I finally got her settled and to sleep,she woke up screaming a scream I never heard come from a child. It was horrible. I consoled her best I could and she thrashed about angry and in pain. When I got her back to something that resembled sleep she moaned all night in pain. This was our worst night ever. I called CMS this morning in tears. I told them the doctors didnt seem to understand what we were going through and we needed to be seen so much sooner then next week. Our case manager called ACH and got them to see her tomorrow. I am so relieved. I cant stand another night like last night and have no way to help her. The tylenol and motrin just arent working. I am scared about the appointment because I dont know what to expect. I am at the same time relieved to finally get some help. Can anyone tell me what is generally done on these first appointments. I have kept a journal of her pain for the last week, so I hope that helps in some way. Sorry to ramble on. I have so many feelings running through me right now. The past month I have just been going throught the motions dealing with this day by day and still having hope it would all get better. Tomorrow, I realize, will bring the reality of our situation to the forefront. I have been able to somewhere in my mind not believe this is going on. Yet tomorrow we will get the diagnosis of what is going on and I will have to go through the acceptance phase of this. Wish us luck. I think I am going to need it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2001 Report Share Posted June 19, 2001 , My name is and my daughter , (9 years old systemic JRA.) goes to All Childrens Hospital in St. sburg. Is that where you are going tommorow? It is a wonderful hospital. sees Dr. . If you have any questions let me know. I havent written to the group in a while, I guess because is doing so well, Her last flare lasted a little over a year, but since Febuary she has been doing great. She is off all meds. except Methotrexate and we got the go ahead to start lowing it 2.5mgs every two months today. There is a camp in Eustice Florida for kid with JRA to go to . It is full for this summer ( is on the waiting list)but it is something you might want to look into for next summer. I hope your appointment goes well tommorow and you will find answers to all your question,and Clarice will get some relief from her pain. Lets us know. >From: clarabell1234@... >Reply- > >Subject: Finally an appointment. >Date: Tue, 19 Jun 2001 10:20:56 EDT > >Hello everyone. > >Last night was an absolute nightmare. Clarice refused to walk for several >hours and when she finally did it was a nasty limp. When I finally got her >settled and to sleep,she woke up screaming a scream I never heard come from >a >child. It was horrible. I consoled her best I could and she thrashed about >angry and in pain. When I got her back to something that resembled sleep >she >moaned all night in pain. This was our worst night ever. I called CMS this >morning in tears. I told them the doctors didnt seem to understand what we >were going through and we needed to be seen so much sooner then next week. >Our case manager called ACH and got them to see her tomorrow. I am so >relieved. I cant stand another night like last night and have no way to >help >her. The tylenol and motrin just arent working. I am scared about the >appointment because I dont know what to expect. I am at the same time >relieved to finally get some help. Can anyone tell me what is generally >done >on these first appointments. I have kept a journal of her pain for the last >week, so I hope that helps in some way. Sorry to ramble on. I have so many >feelings running through me right now. The past month I have just been >going >throught the motions dealing with this day by day and still having hope it >would all get better. Tomorrow, I realize, will bring the reality of our >situation to the forefront. I have been able to somewhere in my mind not >believe this is going on. Yet tomorrow we will get the diagnosis of what is >going on and I will have to go through the acceptance phase of this. Wish >us >luck. I think I am going to need it. > > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
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