EmilyK

I agree all the way round. In fact, my boss (Special ed director of RI) and I are getting notices out to special ed directors and superintendents to be more proactive and vigilant. We have extremely high incidence rates of Other Health Impairment and Emotional Disability in RI, so high that the feds have had their finger on us as a state wondering about our policies and practices. We hear from the field that it's overwhelmingly anxiety, bipolar, and ADHD related with increasing numbers of extreme behavior in younger children. So we're sitting here looking at my son and wondering how many kids get missed or misdiagnosed. We've also put word out to our special ed and school psych preparation programs at PC, URI, and RIC. Once I feel better from this darn myco - I want to go pull data on strep incidence and resistance and do more comparisions with that and the PANDAS maps and the special ed disability rates in RI and surrounding states. I don't know if it will be telling, but I really want to look at it once I can find my energy back.

Yes, my DS gets that. My hunch is it's more from mycoplasma than strep in his case. It's stayed away so far with new meds for the myco.

It's really good! Finally

My friend's son has that and has horrible Crohn's disease.

My younger son is a carrier and the doctors have wanted him free of strep for DS with PANDAS' sake. He's had a lot of antibiotics to that end. Let me tell you, I'm completely paranoid about the neighborhood kids and strep. I don't blame you for being worried!

We have the same problem with our boys and have severely restricted video games and any action hero related tv. It drives us nuts. It's much worse in the one with PANDAS but still present in the sib.

Dr B after much frustration with others. I'd drive out there weekly if I had to. He's getting the whole family well - finally!

My son reacts to both strep and myco-p. When his brother was strep positive, we treated his brother to clear the strep and that helped. We are all being treated for myco-p. We've had a pretty quick response (days) adding Zithromycin and prednisone to the Augmentin. I would swear looking at our history and learning more about myco-p that we've had it around for a long time, longer than when the PANDAS started. I wonder if the myco-p exposure made my son reactive in a PANDAS way to the strep. It's probably one of those chicken/egg things. I know Dr. B wants us all clear of strep or myco for the sake of the one with PANDAS. How long is your course of Zythromycin? His is 30 days. Myco can be tough to clear.

My DS has mycoplasma along with strep. Cough, rash, and he was forever turning off lights to have it dark in bad flare ups. The rages are the worst. With Augmentin, Zithromycin, and prednisone taper, we're having a really great day finally

I do have a lot of detox going on but I also have a history of whacky allergic reactions to meds. When it got to the ears and soles of my feet, it definitely felt allergic. Benadryl wiped it out. The nurse thinks Dr. B will switch me off the Avalox - waiting for confirmation.

DS is fine but I'm reacting to something now that I'm on Avalox, Lamisil, and Prednisone for the myco-p. At first I thought it might be die-off from herx reaction since the itchy redness started where I had lymph nodes. But it spread (red flat but itchy rash) all over torso up to ears. Took benadryls and asthma inhaler to be safe and I'm calling Dr. B's office shortly. Anyone else experience this with myco treatment? One would think the steroid burst would quell any itch or asthma, but no.

I would insist on labwork for strep, mycoplasma, lyme and more. And bring a timeline of symptoms/issues/behavior/illness for child and note any family member illness on it too. Good luck!

How did they test for strep - slow grow overnight? We get lots of false negatives with the rapid strep. DS also has mycoplasma which causes flares. Might check for that too. It's bloodwork and take a couple weeks for results.

I'm so sorry that was a miserable experience. We did well with our neuropsych as it was during a flare up and did a bang up job of demonstrating the impact on DS' learning. And the neuropsych wasn't close-minded to PANDAS either. I had the advantage of working with a variety of special ed folks around the state and getting the scoop on who was really good and who to avoid. Then I called the most recommended one and interviewed her before I'd book an appointment. Not an advantage most families have unfortunately. But I felt like you did after we visited a neurologist at BCH - absolutely furious. Considering what's happened there since then, we must have had a host of angels taking care of us that visit.

My DS is 7 and about 50 pounds on Augmentin 500 2x daily since Sept 11 and now just adding a steroid taper and Zithromax 250 1x day. He also goes for Cognitive Behavioral Therapy which has helped a lot and gets OT at school.

Sorry it's been so hard but you are in the exact right place to vent. I thought I was going to lose my mind with worry last spring if it weren't for some of the good advice and ears on here. We spent from Sept 2010 to April 2012 figuring out what was wrong with DS and then many months wait to get in with a specialist. I wouldn't have found the right care without this group. My DH has degrees in rehab therapy and is a paramedic and was just considering going back to school for nursing. I said heck with nursing, go into immunology and specialize in PANDAS!

So as I read up on mycoplasma, I bump into this: "They can also slide right through laboratory and hospital filters used to produce or maintain sterility – making them one of the most common contaminants in diagnostic laboratories and vaccine manufacturing. In one recent study of vaccines, mycoplasmas were found to contaminate about six percent of commercial vaccines." from this article - yuck!

Dr. B is treating all of us so we don't reinfect DS. No, I don't think he flares necessarily just being around one of us sick with it - but then he starts with his own cough and rash and then flares.

We've got strep and mico co-infection in my DS and the rest of us also have mico.

So we're adding zithromax and a predinose burst to the Augmentin for DS since he has mycoplasma too. But no lyme or other issues - yay - strep and mycoplasma are plenty! And DH, myself, and younger DS all have mycoplasma too. In fact, DH has the highest labs for it of all of us - really high. I've been telling his sleep doctor that something more than sleep apnea must be going on for him to feel so lousy all the time. And I had our younger DS back to the doctor to check his ears and throat last week - no help, said it was likely viral. What I liked the most with our visit to Dr. B yesterday was him looking at all my allergy and asthma meds and saying his goal was to get me well and off all those meds. I have quite the infectious allergic cycle going on. It's so nice to have a doctor focused on getting well and not just accepting being subpar and used to chronic illness. I've got Avalox, a prednisone burst and lamisil too. I'd love to hear other mycoplasma experiences from families. Both kids and I will be back to Dr. B for thorough updated allergy testing in Dec. I'm so glad for this group recommending him!

We have always been low sugar, organic, avoid preservatives and food coloring, no high fructose corn syrup, many fresh fruits/veggies, omega and vit D supplements, probiotics. More recently we went completely nonGMO and tried GAPs and have continued with some permanent changes from GAPs. I do believe it helps, but it's no cure for us. I'm grateful for Augmentin.

Yes, go back to the first piece you described when you present it to a doctor. Put it on a timeline even. My DS gets the headaches and leg aches. When I hear hoarding I think OCD symptoms. When I hear eye flinching I think tic. I don't know about the iron, but have they looked at strep titers or mycoplasma? Sorry he's having such a hard time. It's no fun to bounce around doctors with little result. Time to hit the specialists!

At least once a month last year we had to physically put our screaming first grader in the car to drive him to school and at least once a week we played the "convince him to walk out the door to school on his own two feet" game. It's been better with penicillin last spring and Augmentin this fall. And sometimes he doesn't want to go to a movie, the beach, a restaurant, etc. either. I feel like the meanest mommy, but once we get him there he's just fine, so I do it. Hang in there!

Trust your gut!

Our appt isn't until Thursday. Good luck!