adkmom

PKM- Thanks. We're in the US. But will try the letters from the docs in our network saying it's out of their expertise. Maybe that will work. good luck and glad it worked for you! darlene

PKM, just wondering how you got insurance to cover it? We're seeing Dr. B in 2 weeks but he's out of our network. Can give you feedback about hotels after our visit.

Thanks to everyone for commenting. Smartyjones?- Interesting you mentioned loud talking. I never thought of that before as a symptom. My dd has been doing that for at least the past year (another thing I chalked up to toddler behavior) He tested positive for strep about 6 weeks ago, so we're very new to this. The ped was terrible. I suggested the diagnosis having learned about it from my husband's colleague, another doc. The ped gave him abx and said see you in a month. That was it! Treated it like it was a cold. And we had not yet seen a specialist or done any testing....anyways. He's been on abx and we're seeing Dr. B in 2 weeks. He did well on 1 abx, was switched to another and the dose cut in half and he just slid back to where he was initially. But just a side note if anyone can relate to this. His trip to a new ped this week made me realize the seriousness of his condition and for the first time I had my own private meltdown. With his abx dose cut in half, he slid right back to the beginning if not worse...This was my visit: him climbing on endtables, running into an occupied bathroom, throwing chalk on the lobby floor to break it, running through the doc's entrance and getting lost in the maze of rooms (nurses were looking for him!)doing a headstand on the doc's examing table, riding around on the doc's rolling stool, flipping it half dozen times, grabbing for his computer, grabbing for instruments, grabbing for papers on the table, then the newest one: yelling at me at the top of his lungs to keep my hands to myself when I tried to restrain him. Any discipline was out the window. He wasn't even hearing me. But leaving he politely said "thank you mommmy." what gives? The only time I laughed was when the doc asked "do you know why you're here?" He responed "because of polar bears." What a little smarty He's heard so much about Pandas. I went home and cried. Sorry...had to share that .and yes of course, all the eyes of other parents on us!!!

Frannie, Just curious, if you don't mind sharing what some of your observations were before age 4? And what is an OCD behavior actually like? My son is 4 1/2 when the tic caught our attention combined with a horrendous report from school (hyperactive, not focusing, meltdowns) He has some behaviors but not sure if they're considered OCD or OCD tendencies, if there is such a thing. (He'll sometimes want to shut off all the lights in the house but ONLY when a movie comes on. Sometimes he'll insist that the door be closed when he's playing in a room. He'll have a FIT if his twin brother sits in his car seat. He'll chew his sleeve, shirt collar but on/off throughout the day.) Figuring out the behavior part is so tough with a toddler! Before age 4, he was hard to get to sleep/soothe, extremely energetic, extremely daring and unafraid of getting hurt. Because he has a twin brother it was VERY hard to recognize as anything but sibling rivalry for my attention. darlene

Just wondering how many on the forum have had their child diagnosed early, like 4/5? And what the treatment and results have been? So many here, seem older.

Does the different type of antiobiotics impact the severity of the symptoms? My ds4 seemed to be doing really well on omnicef, switched to Augmentin. couldn't tolerate the full dose, so cut in half and the symptoms have worsened. thanks.

Is it common during an exacerbation to see both really bad behavior and then good behavior in the same day? My ds4 had a drop in antibotics and the tic increased. During school, he was ticcing all day, hyper, unable to focus, stomach pains, kind of in a fog. Then once home and settled down,he seemed more content and calmer. If it wasn't for the tic, I'd think he was just being oppositional with the teachers. But the tic was terribly bad they said. Does anyone else see this type of behavior change in a short period of time? thanks.

I feel terrible looking back, my poor guy kept whining about his feet and I thought he was just being lazy. (although he went from being a super little hiker at age 2 and never complaining to whining that he needed to be carried) It's so tricky because then it would just disappear (i think) and he wouldn't mention it. And he'd run circles in the playground?! without complaining. His tics are worse in front of the tv or when he's trying to concentrate on something. He rubs his hands over his head and shrugs slightly. But now he has slight blinking spells, also mostly in front of the tv or computer. Darlene

Thanks to everyone who replied. You're all soooo helpful! We were debating a trip to another specialist -this time an immunologist but now I'm so glad we have the appt.

Hi, I'm new at this too. But do you have the list of criteria for a PANDAS diagnosis? It's my understanding that he would need to also have a host of behaviorial symptoms along with the tic. And the tic must have appeared suddenly.

Has anyone had experience with their child complaining their feet hurt? My 4 yr old has been complaining of this on and off for several months. Right after he was diagnosed with PANDAS it seemed to increase. He also started blinking as a tic, but on and off. Happens a lot in front of the tv and computer. What is with that? Thanks everyone!

Thanks. This is all so confusing! Has anyone heard of children complaining about their feet hurting? My son complains about this for months on and off. Not sure if he's referring to joint pain...he's only 4.

I'm totally confused. My son has been on antibiotics for about 1 week after positive Strep test. His blood levels were drawn and came back normal range? Aren't they suppose to tell if you have strep?