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Traden
05-06-2009, 06:06 PM
Hi, my daughter has started having a new symptom. She was originally diagnosed with SCLE. Recently she has had a lot of pain in her back and legs. Also, she has been getting a red rash that looks different than her lupus rash that itches unmercifully and swells alot. Her pediatrician has been no help, only prescribing naproxen and tylenol with codeine, and she can't get in to see her rheumatologist until the first of June. At the moment her foot is so swelled up that she can't walk on it and she has missed a lot of school. I have never seen her be so tired as she has been lately either. Just wondering what anyone else thought. I feel like I should be doing something but I don't know what to do. I go between feeling like a lousy mom that doesn't do enough to being so tired of fighting with the dr's and everyone from school. Any input would be appreciated. Thanks

mountaindreamer
05-07-2009, 08:29 PM
hi traden,

all mothers go through a period where they question themselves....please cut yourself some slack...you know that you are a mom who is dedicated to the health of her child.

lupus swelling often results in the inability to walk.. my ankles/feet will swell so much that i can't walk, and it is so very painful.

what meds is your daughter on? why don't you call the drs. office, and see if the assistant can see your daughter sooner.

in the mean time, keep her comfortable, and rested. wish there was a magic secret that could ease her pain.

Pearl
05-08-2009, 05:00 PM
The fight itself is exhausting, isn't it? You are doing a great job. I agree, call the rheumatologist's office and explain what is going on with your daughter. Insist that she be seen by someone. Keep us posted on your progress. We are thinking of you and your daughter on this Mother's Day weekend.

Jana

MicRoMediC
05-11-2009, 07:42 AM
you're not a lousy mom. a lousy mom was mine. my first symptoms started in seventh grade and she ignored them; she just loaded me up on benadryl. i had hives from head to toe and sometimes my face would swell or my hands and/or feet would swell or i would just have hives in random places. i was tired allllllll the time and i couldn't concentrate. i got and still continue to get sick a lot because of my depressed immune system and she would always tell me to suck it up, that i was making it all up. the fact that you are willing to help and are there for her is the best thing you could ever do for her. i know it's frustrating, it's frustrating for us that are having the symptoms too. it sucks that she has to wait, but it will be well worth it and i'm sure the rheumatologist will help. my "flares" will last for a few months with the really bad rashes/hives, lethargy, joint pain and chronic headaches. then that will pretty much subside for a few years and then come back again. i'm currently in a flare and HATE IT! i'm a paramedic with a very active life and my boyfriend is the only one, (besides this forum), that i can talk to. keep your head up and be strong for your daughter. your mere presence is a blessing.