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| *Women health>>>Lupus |
Child with Lupus, have any advice? Experienced with it or even doctors that know of this.? |
Well my 13 year old has lupus . She was first diagnosed at 5 years old. she has been sick off and on. She has had a fever for a month now. Her rheumotologist has her on 40 mg. of prednisone for a couple pf days and also indocin for pain in her body and to eliminate fevers.. She is also on Nortitline for migraine. She has been very sick .Her doctor has taken maybe 3 blood cultures since the fevers started (started around Jan.26th) , cat scan of sinuses, a test for mono, an ecocardiogram. They see nothing in the test, so now they are saying its due to the Lupus. I have been also giving her Tylenol for weeks as a fever reducer. Nothing seems to be working for more than 4 to 5 hours. High fevers keep coming back. I also speak to her rheumotologist like 3 times per week and they dont feel that my daughter should be admitted in the hospital. They just feel that they should run another culture. Anyone with Lupus or know of this situation . Please help. She has a cold too now. Bless your hearts. I don't know the answer to your question, I can only tell you what I would do know. First of all, prolonged use of Tylenol (acetaminophen) can cause liver damage, which is already compromised. Ask her doctor if you can alternate Tylenol with ibuprofen (Motrin or Advil) to reduce the fever. If her rheumotologist is not a Lupus specialist, consider finding a Lupus specialist. If her doctor doesn't have the answers, keep searching. I just edited this answer and found some sites you may be interested in. Best wishes, God bless. http://www.lupus.org/education/faq.html... http://www.lupus-sepa.org/physicians.htm... I just read you post-note. Here is the name, address, phone number and e-mail address of the Lupus Research Institute in NY, NY. I sure hope that edited answers will alert you. Lupus Research Institute 149 Madison Avenue, Suite 205 NY, NY 10016 phone: 212-685-4118 email: www.lupusresearchinstitute.org Plaquenil is another drug commonly used for SLE lupus in children having a flare plus it has a good safety profile. Ask the rheumatologist if this drug might help. good luck. lupus sucks http://www.lupus.org/webmodules/webartic... http://wo-pub2.med.cornell.edu/cgi-bin/w... http://www.nlm.nih.gov/medlineplus/drugi... (Plaquenil info) |
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