Discussions By Condition: I cannot get a diagnosis.

Please help...trying to find out what is wrong with my daughter

Posted In: I cannot get a diagnosis. 11 Replies
  • Posted By: TX Realtor
  • March 12, 2008
  • 07:00 AM

This will be kind of long but bare with me. I am new to this forum and I am trying to get some help with what is going on with my 16 year old daughter. It all started in Dec. 2007 when she started having sever right abdominal pain. It took us a lot of test and doctors but they finally did take out her appendix. After that she developed an infection in her abdomine and had to have her belly button opened two more times. After being on antibiotics for a month or so the surgeon said that the infection had gone away. During the time that she had the surgery she started feeling really bad and we ask her pediatrician to check her for mono, she had mono twice in the past and it seemed like that is what was going on with her. Sure enough her EBV were over 2000. Then she decided to send her to the Infecious Disese specialist because most doctors don't think that you can truly get mono but once and her titers were way too high. We met with him and he did some bloodwork. Everything started coming back normal except the ANA test it was positive. Her ANA was speckled and her titer ratio was 1:1280.

He did a test for the EBV DNA (I am not sure what the test was called) but it came back negative so he says that she does not have mono. But he has no idea why her titers are so high. So we went back to the hospital yesterday for a full panel for the autoimmune diseases. The pediatrician also sent her for more bloodwork to check for Wilson's disease and a few other things.

Her symptoms are extreme fatigue, low grade fever everyday, abdominal pain and even goes to her back under shoulder blades, nausea and vomiting, headaches, sore joints, having trouble swallowing, see also feels like she might have RLS. For the past 6 months or so she has also developed hives, they occur when she scratches herself or comes in contact with certain things.

Anybody have an idea what could be going on with my daughter? I would reallly appreciate your advice.

Thanks!!

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11 Replies:

  • What kind of infection of the abdomen? Did they culture it? Does she have any enlarged lymph glands?
    rad-skw 1605 Replies Flag this Response
  • The surgeon did not tell us what kind of infection it was. She had an appendectomy in January. The surgeon never did culuture it but the pediatrican did and everything came back normal. I think that he lymph nodes have been swollen at times but I don't think that they are now, although her neck is really sore and her tonsils are really swollen as well.
    TX Realtor 5 Replies Flag this Response
  • Looks like SLE (lupus) to me. I mean, extreme fatigue, hives, low grade fevers, joint problems, abdominal pain, even a positive ANA. Since they're already after autoimmune diseases, I think they should have no problem diagnosing it...Elevated titers can quite directly be attributed to the over-activity of the immune system, too.It's essential that you have a really good doctor. Best would be a rheumatologist, though.I hope things will straighten out for you. :)anna
    annaPEB 29 Replies Flag this Response
  • That's what I was thinking as well. The doctors keep searching for something else saying that they don't think that is it. We haven't even gotten the latest lab results back yet to tell us more. Her pediatrician said that she talked to a rheumatologist and kind of told him her symptoms and what has been going on and that he didn't that it was something that he would deal with, I guess that he doesn't think that it is lupus. I mean, come on almost every symptom that she has is listed under lupus. I have hashimotos and my sister has Sjorgens Syndrom so autoimmune disease does run in our family.
    TX Realtor 5 Replies Flag this Response
  • if you and your family have sjorgens then it's quite possible your daughter can have it too. did they do the 9 markers of the ANA test? The infection could of set off the sjogrens' early. The reason the doctors dont want to diagnose her is cause she is young. I know that it's too early by thier standards but it could be. Hope this helps some with the diagnoses.
    Anonymous 42789 Replies Flag this Response
  • That's what I was thinking as well. The doctors keep searching for something else saying that they don't think that is it. We haven't even gotten the latest lab results back yet to tell us more. Her pediatrician said that she talked to a rheumatologist and kind of told him her symptoms and what has been going on and that he didn't that it was something that he would deal with, I guess that he doesn't think that it is lupus. I mean, come on almost every symptom that she has is listed under lupus. I have hashimotos and my sister has Sjorgens Syndrom so autoimmune disease does run in our family.I would go see another rheumy... one that actually looks at your daughter, or listens to the medical history.anna
    annaPEB 29 Replies Flag this Response
  • The pediatrician ran blood cultures or wound cultures? Get a copy of her medical/surgical records and track down the infecting organism. Do you know a nurse that will help you decipher them?
    rad-skw 1605 Replies Flag this Response
  • No I do not know a nurse that can help me with her bloodwork. I have her medical records but I didn't notice anything in there about that test. I will ask the pediatrician if she knows what kind of infection it was. Also got a call today from ID doc assistant and she said that the full panel for ANA came back normal. So I ask her where do we go from here or what does she have? She said whatever the doctor told you and that was it, thank you and goodbye. The problem is that the ID doctor hasn't told us anything really, when he first met with us he said that he was positive that she didn't have a autoimmune disease but ran them anyway. He said that it might be influenza a or influenza b but nothing more. So he can't see her now until March 31st so in the meantime she continues to hurt and feel horrible. I am not sure where to go from here. My husband wants to find a place like the Mayo clinic around the DFW area to take her to so that they can find out what is going on. He said that the doctors need to do more than just take blood. Anyway thanks for responding to my post. If you think of anything else please let me know. I will keep this post updated with her progress.
    TX Realtor 5 Replies Flag this Response
  • Try a pediatrician who is aligned with Children's Medical Center in Dallas.
    rad-skw 1605 Replies Flag this Response
  • Try a pediatrician who is aligned with Children's Medical Center in Dallas. Most of the doctors that we have seen have been at Children's Medical city. We saw a GI specialist, Surgeon and a Cardiologist there. That is where she had surgery in January. The ID doctor is at Cook's Children's hopitla in Fort Worth but our Pediatrician is here locally where we live. We have used them for 4 years now and they really know my daughter. I wish that I could at least send her test results somewhere else so that someone new could look at it and see if they could think of something else that we haven't tried yet. Any suggestions? Thanks for responding.
    TX Realtor 5 Replies Flag this Response
  • Her peditrican is local but her GI specialist, Surgeon and Cardiologist were all from Children's Medical City. The ID doctor is at Cook's Children in Fort Worth. I was doing some research and found a Rheumatologist at Children's Medical city that I called today but she will only see patients that have a doctor referral. So I called the pedi to see if she would refer us if not I will call the ID doctor and see if he will. Thanks!
    TX Realtor 5 Replies Flag this Response
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