Discussions By Condition: I cannot get a diagnosis.

Where to begin?

Posted In: I cannot get a diagnosis. 2 Replies
  • Posted By: cgray10
  • April 3, 2011
  • 11:10 PM

My daughter is 11 and has suffered with migraines since she was 6. Always related to being tired or a day out in the sun/heat (never food related) Last May she developed the worse one ever. Nothing would help..she was hospitalized and given morphine, valium, codeine along with several things just for migraines. All she could do is scream with pain. She was then admitted to Children's Hospital where they diagnosed her with "hemi-crania continua" which is very rare. We then proceeded to see a neurologist and he ran several test on her...one was an ANA panel. Noted was a positive ANA with a dual pattern 1:640 (speckled and centromere). She was sick off and on last summer and would spend days in bed...just wanting to sleep. She was tested several times for mono...each time negative. She also developed kidney stones which she passed. She has had her ANA tested three more times...each time positive with a 1:1280 titer....also showing an anti-centromere ab anitbody.
This past year has been rough on her-she would get sick and just feel horrible for no reason...just wanting to sleep. She has had blood in her urine several times-as well as her stool. Had a colonoscopy and they said she had fissures inside the anal area.
She also develops a rash on her face when out in the sun which I have seen on sites known as the butterfly rash.
Now....Friday morning she woke up and was coughing and would spit in the sink...where there was "frothy blood". We said we would wait and see if it happened again. I teach at the school where my daughter attends. She came to my room b/c she was coughing up blood again(this time it was not frothy but just bright red blood). Luckily I took pictures of this with my phone. She did it several more times. I took her to the ER and they looked at the pics and said yes, it was abnormal. However, the chest xray and ct scan were normal. (at this time the coughing up blood has stopped) They took alot of blood and consulted with her rheumatologist-and he is suppose to call us when the results are back. I also showed the ER drs. the pics of her face with the rash and they agreed that it is the butterfly rash.
I am driving myself crazy trying to understand where this blood could have come from-they said not the sinus and that her lungs were clear. Her gastro dr. does not feel it is from an ulcer b/c she was not vomiting blood. So, where else could it come from????? Thanks for any insights :)

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2 Replies:

  • That sounds scary. It would be great if you could post again when you find out the cause of your daughters issues as I'd be very interested to hear. Best luck
    taniaaust1 2,267 Replies Flag this Response
  • Has anyone considered lupus or aps (antiphospholipid antibody syndrome)? Both might account for the rashes and the bleeding. It would also cover the elevated ANA.
    gregtfish 67 Replies Flag this Response
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