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Everything posted by RachelE

  1. My daughter was diagnosed with pandas three years ago after a sudden onset of crippling OCD intrusive thoughts. She had previously had episodic stretches of eye blinking tic, urinary frequency, generalized anxiety, and some OCD tendencies but the thoughts knocked everything out of the ballpark. They came on fast and took over. AFter 5 or 6 months of we found a pans doc who put found that she'd had mono and probable Lyme (equivocal ELISA test but negative WB) and put her on ABX for many months. The thoughts disappeared and we had our daughter back - quicky but totally free of horrible obsesive thoughts of violence/sexual/social stuff. Flash forward two years. She gets abx resistant respiratory staph (along with her sister, who also had strep) and then she gets diagnosed AGAIN with mono. Exactly two months later the thoughts come roaring back like a bad dream and starts again for our family, especially me (mom) who she confesses to. No doctor could explain why my 11 year old has had mono twice in her life and her regular family practice doc says it isn't pans and that lyme docs are quacks. Great conversation we had before I took my children elsewhere. After visits to PANS psychologist and LLMD's were uncover that she is lyme positive both CDC and IGenex. IGM Bands 31 ++,39+, 41+, 83-93+, but IGG band 41++ only. HEr LLMD starts her on ABX on top of anti-inflammatories prescribed by PANS doc. (Turmeric and EPA) LLMD says we will never know how old the lyme is, though from what I read IGM means acute (not old) infection. I have so many questions. My daughter had multiple bites as a young child in the NE states and I know now they were mishandled. No prophylactic abx, improper removal of ticks (including a time I totally botched it and the head was detached). She had chronic drenching night sweats as a four year old, along with extreme night terrors and major sensory issues. She also had massive reactions to any bug bites and every summer ended up in the ER when a fly bite led to her eye swollen shut or her nose or face disfigured. She also had bites on her back that for 6 years flared up periodically. No doctor could explain it. They would be red and hot and itchy, despite being years old - this would happen every 3 months or thereabouts and came along with a deterioration in behavior. I feel intuitively and practically that this lyme is old, but I can't know for sure, according to our doctor. IF it is an infection aquired 8 years ago I worry for my daughter. I just want to understand, and I want her to be healthy. I see how tired she is, out of breath from the simplest bike ride or run or typical childhood activities. We went roller skating today and she kept collapsing next to me out of breath. Her ped. detected a bit of breathing abnormality indictative of lung inflammation but had no suggestion of what it might be due to; and suggested steroids. We did not go this route. Looking for hope, feedback, insight. I feel so sad and stressed. I live and breathe for my children. BTW her LLMD was surprised that her Igenex babesiosis was negative.
  2. It has been such a long road. I am so exhausted from trying to help my dd (11). She began symptoms of ocd around age 6 with obsessive urination (6x per half hour), eye tic. The urination thing would only happen periodically - it either happened, or it didn't. She would have no sign of it for some time, then it would reappear for a few weeks. First round of pneumonia occured prior to this, along with several tick bites (we lived in a tick-infested area of New England). Fast forward to age 8 or so and she suddenly was incapacitated by intrusive thoughts (ocd). The urination obsession started up. Lots of emotional lability, highs and lows. Truly incapacitated by the ocd thoughts - she worried constantly about the harm or wrong she might do/had done. We found a PANS doc off pandasnetwork.org and after tests we found she had apparently lyme (probably for some time as the results were somewhat equivocal and probably lowered due to abx over the years.) as well as mono. By now she'd also had pneumonia a second time. Six months of abx and the intrusive thoughts disappeared. No sign of tics. We were left only with mild anxiety/manageable remnants of ocd such as a tendency to worry about hygiene issues. This past fall after being dx'd with respiratory resistant staph (along with her sibling, who also had strep) and then another round of mono, the intrusive thoughts came racing back. Constantly coming to mom with worries and obsessive thoughts of harm, violence, sex -related issues. None of our CBT training seems to help. Previous doc. put her on a week of clindamycin, plus a week of prednisone, and luvox. Nothing helped and we took her off luvox. Now at a loss. Have multiple appointments and agonizing over how to help. Can't help but feel her underlying infections/immune issues underly her psychiatric issues. Am I crazy? PS we desperately need LLMD/Pans knowledgeable providers in D.C. Northern VA area. Latimer is booked out for months.
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