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Guest posted a topic in PANS / PANDAS (Lyme included)Hello, I'm looking for advice about my 5 year old daughter. We are trying to determine if she is having behavioral issues or if she could have PANDAS. As a little background, she has had recurrent throat infections (many times strep, sometimes not conclusive) for the past couple years. Her tonsils have been very enlarged for about a year, and she is having them removed next month. She has also been diagnosed with autoimmune hives that have covered her body (they do respond to antihistamines) for about a year. She also has a history of having behavioral reactions to artificial food dye, and previously had a milk protein (FPIES) allergy that she has since outgrown. A little over a year ago she had strep and her behavior was very "off". Very defiant, seemed hyper, etc. But, it improved. Shortly after that she had a sudden raging unexplainable tantrum, was afraid to be without me, physically fought me and her babysitter from trying to get her into her car seat. It was so aggressive and abnormal that I drove her immediately to the pediatrician's office. It turned out she still had a tonsil infection. It took a couple weeks but her behavior returned to normal, she wasn't having separation anxiety, etc. Since then, every time she is sick, she has crazy tantrums or very defiant behavior beforehand and sometimes after. For most of the spring, she was throwing daily tantrums in the evening, became very constipated (which we initially thought was the cause of the behavior, but now think it was partly a behavioral thing because she would refuse to try to go), and she ended up having a double ear infection and was congested for the whole time. Again, off and on the symptoms would come and go. The tantrums would last for two hours sometimes, lots of mean talk, crazy laughter, spitting, hitting, throwing things, hiding in a closet, trying to get away from me and my husband, but then wanting me at the same time. They typically end because she is physically exhausted or sometimes she will cry uncontrollably until she's exhausted. She will often not remember the tantrum, and can never explain what she is upset about. The end of the summer improved (she wasn't sick), and it all came back when she got sick again in the fall. It's been off and on - she can go weeks with "normal" behavior. Every time she is sick (sometimes a sinus infection, sometimes strep) her behavior changes drastically. She is very well behaved at school (with the exception of two infections ago, she was not herself at school but the nurse couldn't find anything obviously physically wrong with her...she barely spoke, looked in a daze, etc...had a high fever and strep the next day). and for other caregivers. She typically has tantrums at night (they have occurred at other times but not often), has a lot of trouble with bedtime and now usually needs someone in her room to fall asleep (this was never the case before). We can often sense when it's going to be a bad night because she starts acting "off" or overly silly, or can't seem to settle her body down and stay still to read a book. She also had a two week period recently where she was incredibly defiant about everything all day long, improved after a few days on antibiotics for strep. She often complains of lower leg and feet pain which is new. She often does baby talk and talks about wanting to pretend to be a baby again. She has also become very self-conscious and doesn't want me to say anything positive or negative about her to anyone, or relay a story about her. The pediatrician thinks it's behavioral and she can't cope with her constant sickness. It seems very much out of her control though. My husband is a social worker and also thinks it's beyond behavioral. He has said if she didn't have weeks of being "normal", he would think it was ODD or something else. She doesn't seem to have any OCD though. The only thing I have noticed is that often when she finally calms down, she will count on her right hand. Anyway, I recently saw a local mom post about PANDAS and it sounded very similar in many ways to what we are dealing with. However, we've had a lot of change (new school, new house) in the past year and she has had a lot of sickness, so I'm questioning if we should try to seek an evaluation for PANDAS or seek out a behavioral specialist. Does anyone's child seem significantly better in between infections? Behave "normally" during the day and typically behave fine for other caregivers? Thank you!!!!
My son burst out with hives on Saturday and they are almost all over his body today: arms, back, behind, chest and legs. He's had hives a couple of times before (pre-PANDAS) for no real reason I could ever discern. We gave him a Zyrtec pill this morning and an Advil. Didn't seem to do much, as they are actually worse tonight. On Saturday, he went to a birthday party where they had junky candy.. At first I thought that was the cause--and it might well be--but now I'm not so sure. He doesn't have food allergies that I know of, but I've never tested him. Normally we don't do food coloring, except on relatively rare occasions, but he's never reacted to it or anything. Thoughts on if this could be somehow PANDAS-related? I know that hives can be a rare symptom of strep. Tomorrow is pretty much the busiest day ever at work. Gah, the WORST TIMING. Tonight we gave him a Benadryl pill. At least he'll sleep well, right?