My almost 7 year old daughter started presenting odd symptoms a little over a month ago. She has always been extremely smart, social, and generally adaptable, though she has had some mild sensory/anxiety issues and big tantrums (though never violent) starting at age 4 and subsiding for the most part in the past year. Despite any prior challenges (and the several months prior to the onset were completely FREE of challenges), what we began seeing in early July was very uncharacteristic of her history When someone brought PANDAS to our attention, both my husband and I felt that the descriptions of onset and experiences resonated. Still, her bloodwork is not supporting our theory.
Her symptoms include:
o rage-filled tantrums (hitting, biting, kicking, throwing things -- she has NEVER done this before)-- she has said "it's not me being bad, I can't help it! My body is doing it!"
o A defiant attitude, saying “no” adamantly to things that she never would have disputed before.
o Unreasonableness when she doesn’t get her own way and rigidity around changes in plans/transitions (this was never something she had trouble with in the past)
o Heightened sensitivity to smell
o Excessive thirst, drinking TONS of water all the time
o OCD-like Sensory reaction to clothing (something she experienced before mildly in the form of wanting tags cut out of clothing or not liking low-cut shirts) got exponentially worse, wanting turtle necks, layering and complaining (sometimes going into fits) after going to the bathroom because she says her underwear was wet even when it isn’t. She is no longer complaining about the wet underwear over the past week as long as she wears a bathingsuit bottom instead of (or under) her underwear, but she still insists on layers, high collars and is particularly obstinant about what she is wearing to bed.
o Difficulty going to sleep: begging me to sleep with her and/or throwing tantrums at bedtime
o Seems to have a change in appetite – very picky, says things taste bad that she has always eaten.
o Chewing on clothing, hair, toys
o New fears (a month after being at another beach and holding sand crabs in her palm, freaking out over crab shells on the beach)
o Hyperactivity at times
o Suddenly talking like a baby: lisp/dropping her "r"s, immature behavior
We are in Maryland and are tyring to get in to see Dr. Latimer, but she can't see us until late October. Meantime, we have seen two other neurologists. The frst basically dismisses the PANDAS "Label" as she calls it and wants to put her on Zoloft. The second has been helpful and ordered a very detailed panel of bloodwork. All tests came back normal. There is no history of strep (literally she has NEVER in her life tested positive for strep despite having multiple exposures and huge tonsils up to age 5.). She was diagnosed with coxsackie virus (which she has had several times in her life) the week after her current symptoms materialized.
Nonehtless, she started Azithromycin (625 ML 1x per day; 5 days on, five days off, five on) 8/7. We felt like she was somewhat improved several days into the antibiotic, but not dramatic. Not as many complaints about smells, generally more "herself", but has continued to have tantrums/rage issues daily, usually in the evening (seems exacerbated when she is tired or hungry), and obsess about clothing. The eighth-ninth day of this regimen (3nd-4th day not taking Azithromycin) she was very much improved with NO tantrums/rage. The fifth day off the Azithromycin in the evening she had one of her worst tantrums to date and was very difficult to calm down. We resumed the meds for the next five days on in the AM instead of the PM on the 11th day thinking that this may have made a difference. She has seemed to improve again though the clothing is still an issue and we did have a meltdown tonight, though she seemed to be more responsive to reason.
Anyone have any thoughts on whether or not this sounds like PANS? Can you have PANS with normal titers and blood results? Any recommendations re: continuing/increasing/switching out the antibiotic?
Given we don't have evidence of strep, we do want to get her in to see a psychiatrist in case medication for the OCD stuff is needed. Assuming our situation sounds like it might possibly be PANS, does anyone know of someone who understands PANDAS/PANS in the DC metro area, preferably maryland?
Thank you for any advice, referrals or shared experiences!
