She has a team of specialists at Floating Hospital for Children in Boston, and not one of them has diagnosed her case yet.
It all began when she was 10 years old, with gastrointestinal complaints. The specialist began ordering tests, the common CBC one of them. It was discovered she had low platelets (thrombocytopenia.) For four years she was infused multiple times with WinRho and IVIG to raise her platelets. She was diagnosed with Chronic ITP (idiopathic thrombocytopenic purpura). One long-term solution was a spleenectomy. Thankfully, my husband and I shelved that one as it seemed too drastic. Good thing.
Her platelets seemed to resolve when she was 14. She then complained of not being able to pay attention. We had a private neuropsychological evaluation done by a psychiatrist. He diagnosed her with inattentive ADD and dysgraphia. We sought help from a world-renowned physician, Kenneth Bock, who was successfully reversing Autism, ADHD, Allergies and Asthma in children. It took 6 months to get an appointment with him. After running numerous lab tests, he decided to run a Babesia FISH test because in addition to the ADHD sysmptoms he knew she had a chronic infection. The lab confirmed Babesiosis with a positive result. She was treated twice before a negative lab result returned. Good thing we didn't remove her spleen because Babesiosis is fatal for splenectomized patients. Always good to follow your gut.
All other symptoms (unrelated to the Chronic ITP) --- headaches, backaches, stomachaches, unexplained and recurring fevers, achey skin, constipation ---- all were eradicated after being treated for the Babesiosis. That is ---- for four years.
Two months ago she began feeling ill again. First we thought it was a viral URI. Then two weeks later she suffered severe menstrual cramping. Then a week later another infection. Here are the weird symptoms:
- cycling fever (not too high but only at night - fever breaks in the morning)
- skin rash
- headache
- skin and muscle aches
- cough
- low platelets (35,000)
- eye pain (just the right eye, but painful to avert her eye)
So she received IVIG to raise her platelets. She is now being seen by Rheumatology because of antibodies not only against her platelets but also to her neutrophils. She also has had anticardiolipin antibody and antiphospholipid antibody seen in her blood.
Rheumatology is rerunning the classic ANA test for Lupus, which has been negative in the past.
The doctors are perplexed. Her blood anomalies don't fit any known disease. If she has Chronic ITP why is she producing the other antibodies?
Oh, and by the way, we had Flying Squirrels nesting in our chimney and in our house. Google research pointed me in the direction of Epidemic Typhus caused by the bacteria known as Rickettsia prowazekii. The results for that test are still pending.
Anybody out there who has a similar story to tell or who can shed some new light?
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