Poss Lupus (The Begining)

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shelly5100
New Member


Date Joined Jan 2012
Total Posts : 9
   Posted 1/10/2012 8:49 AM (GMT -6)   
I am so thankful I found this site. I have read so many stories, I now think she has always had Lupus since she was a baby. Now it's finding a doctor that's going to listin to us. I guess I never really started putting things together untill I started reading all of the stories. My daughter from when she was first born kept ear infections and URI. Three sets of tubes, and many many rounds of antibiotics. She was put in the hospital at two, for what they called a fever from an unknown orgin (their way of saying they have no clue). Then for a period when she was three she had what they called absence seizures did sleep studies and could never come up with anything. Then got her tonsils out at five and another set of tubes. Once she started school she was always sick going to the nurses office for stomach aches, I feel like the worst parent ever because after so many trips I finally told the school unless she was very ill to send her back to class. She broke her wrist the first time at age 7 and now I honestly can not tell you how many cast she has worn on her wrist. At least two a year and this is both wrist. She is such a strong child nothing never put her down. Even now when we can't get any answers and she is always in pain she is a strong person. I am sad because as a parent I feel like I should beable to do something and we keep hitting walls. The rest of the story I posted yesterday. I am sure there is more I am not remembering but when they are that young you don't think about keeping everything written down untill something like this happens and now I wish I had wrote everything down. I really think I am the worst parent ever.
  
 

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 1/10/2012 6:31 PM (GMT -6)   
You're not a bad parent, just overwhelmed.
If I remember you saying in the post yesterday one rheumy said lupus then changed his mind after her ANA changed?
Try to find her a different Rheumy ASAP.
Joy

shelly5100
New Member


Date Joined Jan 2012
Total Posts : 9
   Posted 1/11/2012 7:18 AM (GMT -6)   
I am working on getting her an appointment with a new doctor. The wait is 6 months though. Thank you for your message. My mom has M.S. I just wonder if there is something connected with her having M.S. and my daughter?

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 1/11/2012 10:43 AM (GMT -6)   
They still don't know if MS is hereditary or not. Auto-immune diseases are, by observation, thought to run in families, but there is no scientific evidence that proves that either.

So the short answer is that the jury is out on that question! The important part is finding help for your daughter. Ask the doctors office to be put on the cancellation list, so you'll be called if someone cancels. You might even call every couple of weeks to check their schedule.

Best wishes,

Post Edited (Lynnwood) : 1/14/2012 1:11:47 PM (GMT-7)


AngelinaATF
Regular Member


Date Joined Jan 2012
Total Posts : 135
   Posted 1/13/2012 3:34 AM (GMT -6)   
Oh my I feel like I am reading about my own 7 yo daughter! (MINUS SEIZURES)!
I too told the school same thing! I get it! U need to have them there to LEARN & most of time if no fever or other symptoms the school ASKS US WHAT TO DO! WOW!
WELL ..I have MCTD (lupus, fibrous, ra & raynauds) & I worry my daughter is heading straight for the same concrete dock at full-speed! (So to speak!)
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