Hi Rachel,
You are living my life a few years ago. I'm so sorry you and your daughter are going through this. I haven't posted in awhile, always waiting for the other shoe to drop. But now I am a busy hockey mom, my daughter will attend a NE prep boarding school next fall, she has a summer job, and I am resuming my life too - I guess it is time.
My daughter, now 15, at age 9 presented the exact same way as yours, in almost every way. She lived outside on our deck the summer she got sick, wouldn't enter the house. We were fortunate that a few moms on this forum sent us looking beyond PANDAS and my daughter also tested very strongly positive for Lyme. Although it is tough to tell, the doctors said it was over a year old, and looking back we thought perhaps 3-4 years.
For 5 years she was off and on non-functional with crippling OCD being the primary symptom. She did have night sweats the first two years as well. We found our way to a doctor who treated for Lyme and also clinically for babesia and bartonella, with keflex, zithromax, mepron, plus herbs. She got better very quickly and returned to school. Eventually she relapsed and was home again. Couldn't eat any anything I cooked, couldn't go outside, lost 20 pounds, sat in one corner of the couch - it was horribly sad.
Then a mom on this forum gave me her appointment with Dr. H in Hyde Park. Prior to this we flew to CA and Denver for our doctors, who were very good but just not in our lives often enough. She went on IV antibiotics for 6 months, improved again. Then fell back somewhat. Doctor put her on Lariam (very aggressive drug) for babesia - after 4 years during which she was always treated for babesia, she finally tested positive! Quick turnaround.
Back to school and sports. Still some OCD but not as crippling. Still very hard on the family. A year later doctor determines she is largely autoimmune at this point. Moves to LDI/LDA treatment one year ago last month. Today she claims she is 100%. No OCD at all, for the first time in 6 years. She will continue this treatment, a small pinprick shot every 8 weeks.
My daughter just spent the past 4 months with a school that traveled throughout South America living out of a backpack. She was the youngest of 16 girls there. She got top grades, went on 30 mile treks at high altitude, exhibited no OCD, and returned a different and more mature person. I never could have imagined that this would be possible for her.
Our story is long and we were all very sad for those years. Sad for the loss of a childhood. Financially very, very difficult as well, we made and still make many sacrifices. Our memories are hard, but now we are all healing fast. It is amazing what good health will do to erase past trauma. My daughter is looking forward to her future with high hopes.
Stay hopeful, keep looking, and never ever give up.
Hugs,
Laura