Darby

I'm am fairly certain my eldest daughter has PANS, has had it for many years, but by the time I found out about PANS she had started outgrowing some of the symptoms, so I never aggressively pursued a diagnosis (she is almost 10 now), but if she ever regresses to the way she was, I will definitely do so. My youngest daughter is 3 1/2 she has recently gone from being very independent and good natured to fussy, fearful and clingy. I don't want to overact and fly off the handle for a normal developmental stage, but if I can catch something early and prevent all the suffering that my eldest daughter had, then I want to do so. My eldest daughter presented with much more extreme symptoms, regression of academic skills, huge rages and meltdowns, night terrors, frequent urination, sensory sensitivity, extreme debilitating fears, irrational phobias, and separation anxiety, but before these extreme symptoms she also just had a phase where she had separation anxiety and sensory sensitivity. Is it possible that one's first antibody reaction is smaller, then if you produce the antibodies again the reaction gets stronger? My youngest daughter just has separation anxiety will not be in another part of the room from me, keeps worrying that I am going to leave her, and sleep disturbances---I think she keeps waking up to make sure I am there, and fussiness, but that could be from the sleep disturbance. She has always been a picky eater and fussy about the tags in her clothing so I'm not concerned about that. However she has been a happy and laid back child and now she seems worried and anxious. I know separation anxiety is a normal stage-- the reason it concerns me is it seemed to come out of nowhere and quickly. Are there any safe steps I could take as a precautions without a diagnosis? Thank you so much, Darby

My daughter does not have an official diagnosis of PANDAS, but I do suspect that is what she has. Yesterday she developed a cough and sore throat (I have no idea if it's strep). The doctor's office is closed today (it's Sunday). Is there anything I could do now to keep her from having a full blown regression of her behavior (ocd, aggression, fears, etc...) She's already started obsessively organizing the doll house. Any advice welcome.

Thanks for the reply. We are not pursuing abx at this time, but we'll see if she goes through another really bad spell. Are you saying that Enhansa kills off yeast, or causes the yeast population to grow, because killing off yeast would be a bonus for us.

I have suspected for some time that my daughter has PANDAS although she has no official diagnosis. I have read much about ibuprofren and PANDAS, so yesterday when she started exhibiting many signs of a "flare up" I think in response to a cold---I decided to try children's ibuprofren. 1 hour after taking it I thought it wasn't going to work, but she had mostly stopped crying. Two hours later she wasn't yelling as much and could play with out me next to her, although she was still very cranky and tired, by the evening she seemed almost better and today she seems normal except for a vocal tic, small compulsions and a little bathroom issues, but her mood is great in comparison to yesterday night and day. Has any one else noticed such an impressive change--how long does it last? Is it possible it was just a coincidence? I would love to hear other people's experience. By the way, I know ibuprofren is difficult on the digestive tract and liver and I have no intention of using it long term. Thank you, Darby