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Posted By : tjholt2016 - 7/9/2017 4:59 AM
Hey Everyone!!


I have an 11 year old little girl who has been having migraines since she was about 4 and 1/2 years old! Recently she was admitted to the Children's Hospital and spent over a week with migraine that was out of control. They decided to finally run more blood work at which time they found out her WBC slightly high (she was also constipated and hadn't pooped for 10 days), her RBC was slightly low, ANA titer was 320 and Pattern was homogeneous. She has the red butterfly pattern across her face and she gets very sensitive with the sun. Also she is often very very tired and ultimately looks and feels sick majority of the time. We are waiting for the 3rd ANA test to come back to give us a bit more information. It was drawn on July 3rd and I have no idea how long it will take to come back.

She is being referred to a pediatric rheumatologist. I know nobody can tell me right now what she has... But I am trying to digest everything and figure out what could possibly be going on. Does she more then likely have an autoimmune disease? And how likely is it to be Lupus?

Thanks!!

Posted By : Lynnwood - 7/9/2017 8:12 AM
There really is very little we can add to what you've already read. My best advice is to QUIT reading, and let the Dr (pediatric rheumatologist) do HIS/HER JOB. We, and by that I mean everyone here and you, are not trained or experienced in diagnosing auto-immune diseases.

In fact, about 20% of the perfectly healthy population will have a positive ANA!!! An ANA does not diagnose anything, it is primarily an indicator to look further and see if something is wrong, which is what the rheumy will be doing.

Besides finding a Dr that will work with you for diagnosis and treatment, the basics are the same as for almost any disease. Healthy food, good hydration, regular moderate exercise, deep restorative sleep, avoid the sun, heat & fluorescent lights.

Check out my link below, Diagnosing Lupus, to read about the 11 diagnostic criteria. (Migraines are not normally associated with Lupus.)

Let us know if we can help with any specific questions you may have!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Posted By : tjholt2016 - 7/9/2017 10:52 AM
I know the 11 point diagnostic criteria. She has about 5 or 6 of them. The Neurologist team and pediatrics team at PCH said that there are many children who do in fact get bad migraines from Lupus. From my reading I have seen that is not as common, so I am trying to find people who have either had them or not had them. I am also very aware false positives. From their explanation the ANA titer could have been, but then the second test came back positive, starting to make it less of a possibility of a false positive and much more likely to be an auto immune of some point. I am also trying to figure out how long the 3rd ANA test takes to come back, because right now it feels like an eternity. Watching her spend close to 10 days in Phoenix Children's and get pumped full of VERY serious medications every 8 hours to control headaches has me looking for more answers.

Posted By : BreRosie - 7/9/2017 11:30 AM
I hope you get answers and help for your daughter soon.I'm sorry that I can't give you any answers . Lynnwood is right, its best to wait( I know its hard). I can tell you that migrains and fatigue were my first symptoms. After a few months on the hydroxychloriquine the headaches got much better. Best wishes for your baby and family.
Breanna

Thyroid disease 2015, Lupus and Sjogrens July 2016 and Fibro October 2016
I'm Just gonna keep on smilling

Posted By : tjholt2016 - 7/11/2017 3:07 AM
Thank you!!!

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