nicklemama

I have a $2400 deductible. I don't think the labs Dr T wrote for cost more than $200. Our insurance is BCBS PPO. If I used an approved provider, the provider was limited to charge me the negotiated rate of my insurer. It was a LOT less then their normal charges. Quest and LabCorp are probably approved providers for most insurance companies. You can call them and inquire. My insurer also counted Dr T's fees toward my deductible.

My DS has never fasted for blood work. We were never told to. He's done the IgG and subclasses.

I'd get him swabbed. My DS's first signs of a flare are hyperactivity. He cannot sit still. This happens when he's exposed to strep. He doesn't actually get strep. We bump him up from prophylactic dose to treatment dose until symptoms reside.

You deserve to vent. Every point you made is very valid. I'd be tempted to make a copy, take in to a doctors visit and read it to the doctor.

Now, I am hoping he makes it till his Thurs appt. I have to stop the rx eye drops on Sunday. I don't know if he can go that long w/out them. His eyes will get unbearable.

Thank you so much. I thought it was the right thing to do and made the appt. Since then I have second guessed myself for being dumb enough to rock the boat. DS's allergies do not seem connected to his PANDAS at all. This poor doctor won't know what hit him when I get there w/ DS.

Has anyone had their PANDAS child allergy tested? DS8 is having a terrible time w/ eye allergies. We can't get him off Patanol(prescription eye drop). If we stop giving it to him, his eyes are immediately bright red and itchy. This has been going on since spring 2010. He's doing really well right now, PANDAS wise, but the eye thing is bothersome and I have been thinking its time to address it. The dr wants to do the skin testing at the appointment next Thurs. Anyone done this on a PANDAS child? The last thing I want to do is cause a bump in the road. Has anyone started allergy shots in a PANDAS child? Cindy

I have always had cats. Now, I'm thinking.......

LOL, we all know if its in Wikipedia it must be true!

That was an interesting article.

I was so irritated by Dr Schlagger's comments that I missed the "research" bit. I'd love to see his research, seeing as how his name does not pop up in my mind when thinking about all the research papers I've read on the subject. Off to google. That's how I got my MD degree, LOL!!! Ok, I'm back. His curriculum vitae listed all published articles and not one mentioned PANDAS. Interesting. His areas of expertise are Cerebral Palsy, stroke, Tourettes and cognitive development

I didn't realize your child had already been treated w/ abx soon after initial symptoms. I was talking about untreated PANS. My DS had the typical overnight appearance of symptoms and they were quite intense but they remitted w/out treatment in two months. The second round, a few months later, was even worse than the first. Not all of us still here have kids who are severe. I wouldn't call my DS severe at all, right now. He appears to be stable and very functional w/ a few symptoms. When he is exposed to strep, he has flares. Since he is on prophylactic abx after IVIG, the flares are nothing like the untreated exacerbations were. When he flares, he is treated w/ treatment dose abx, then back to prophylactic. I don't know if your child will get worse or not. I don't know if your child has PANS or not. I do know that when my DS's came back, it was worse than the original. He suffered a lot. You'll have to make decisions based on your child and their symptoms. We're just offering you our experiences.

My DS has never once had strep either, that we know of. He was never tested for strep when he was actually sick. He's mycoP negative too. He still has PANS. I would also urge you to read the new "white paper" for the criteria for diagnosis.

Oh, just let me scream when I read these ignorant comments from what are supposed to be doctors.

I ditto everything above. Get the tests done now. If she has PANS, her symptoms will come back. This disease waxes and wanes. My experience is when it comes back, it will be worse than it was before.

Yes. I would call it a herx. My Nicholas had an ear infection at age three. A few days after starting amoxi, he began to be very irritible and prone to tantrums. It was completely out of his character. I called his pedi and she told me to stop the amoxi, as he was having a rare side effect. She did not recommend other abx and told me the ear infection would clear on its own. I think this was a setting stage for what was to follow 2yrs later. He got over the ear infection and returned to his normal self for two years. I'd keep him on the amoxi until your appt w/ Dr T, unless you can clearly see a true allergic reaction or things get really bad.

My understanding, in reading, was that tics were listed under sensory and motor abnormalities. "Motor abnormalities ocurring in PANS include a variety of signs and symptoms, such as abrupt deterioration of the child's handwriting (dysgraphia), clumsiness, motor hyperactivity, tics and choreiform movements." I also understood that PANS is not replacing PANDAS. Its a tool for diagnostic criterion where the child does not meet the criteria of PANDAS. I can see where it would be concerning if your child is a primary ticcer and has no history of strep. My son is the poster child of PANS. He had dramatic, sudden onset OCD. He has 6 of 7 in II (no academic school peformance issues). He also developed tics as the months w/out diagnosis and treatment wore on. THE one criteria that kept him from being considered for PANDAS in the first place was the lack of strep positive cultures or titers. He was never tested for strep when sick. He fits PANDAS except for criteria 4. By the time he was ever tested for strep, a yr had lapsed. He has been tested a few times since, when he is sick, but cultures/titers have all been negative. My view is that PANS is intended to be inclusive of children who have no temporal relationship to strep, whether it was not tested during the critical time or something else triggered the PANS. This critical piece to PANDAS has kept a whole bunch of kids from being treated.

It really depends on where you are traveling as to whether or not you might need vaccinations. I lived in Germany for two years and traveled all over Western and Eastern Europe, including Russia, w/out nary a vaccination (aside from those few I received decades ago as a child). Now, the continent of Africa, some Asian countries you are talking an entirely different matter.

The explosions were the worst thing to deal with. Still are but they happen infrequently now, rather than daily. I recommend The Explosive Child also. It really helped us. When DS is in an explosion, really nothing we can say will help. We say little and let it blow over. That usually means DS runs up to his room, stomps around, door slams, throws pillows, maybe name calls us (stupid or idiot). If we ignore the behavior (and believe me its hard to), he settles down quickly, then comes down very sad, sometimes crying and wants hugs and love while saying how sorry he is and he doesn't know why he acted like that. Then we give him a consequence and he accepts it. Sounds easy enough, but its not. Maybe we should take a trip to Florida. I do know why he "acted like that". Interruption of ocd behavior causes it. Many times, we can point out the behavior, which is usually a 'just right' thing and he'll stop and do what he should be doing. But, there are times when you cannot predict that he'll be able to let it slide and BOOM! Most of his big meltdowns occur in the evening.

I'm no lyme expert but if she's got ehrlichiosis and untreated lyme, the behaviors you are seeing may very well from those. My DS has been on abx for 16 months for PANDAS and had one IVIG last May. When he has flares, he has an increase in behavioral symptoms.

Twelve seems like a lot but if you use the formula of 1-2% of the pediatric population has PANDAS, then you'd expect to find 12- 24 kids in a school of 1200. Around here, the high schools are huge, so that might be expected. Its weird to think of a PANDAS outbreak but, like Swedo said, maybe its a very virulent strain of strep.

Carol- Scroll back up to the far right hand side of the screen. See where your name is? Next to it is probably the number 1. That is your message. Click on it.

You live near three well known PANDAS specialists. I'd get an appointment today. Dr Bouboulis is in CT. Dr Trifiletti is in NJ. Dr Latimer is in MD.

I believe the current diagnostic criteria says and/or tics. I'd have to look that up, though. I'm going to just put this out there, keeping in mind I'm no doctor. I'd bet money your son does not have Bipolar. My bet is on all his symptoms and behaviors being caused by PANDAS. Anxiety is a part of PANDAS. My DS was diagnosed w/ Aspergers and Bipolar just before he was diagnosed w/ PANDAS. We never had him on any meds for bipolar and the antibiotics and IVIG took away the bipolar like behaviors, as well as the Aspergers behaviors. My DS's behaviors ramp up w/ colds, ear infections, losing teeth, teeth cleaning, etc.... Now that he's on abx, the ramping up is really no more than a minor flare. Its nothing like it was before treatment for PANDAS. My son did develop tics but not until after he'd gone a long time w/out a diagnosis or treatment for PANDAS. His main presenting behaviors were severe separation anxiety, anger, irritibility and OCD.

My DS did not cry. When upset, he got very angry and lashed out. He did not cry for a very long time. The first time we saw him cry when things didn't go well, after he had been started on abx, I wanted to celebrate.