Broo100

Hi everyone, my ds is turning 12 and his GP is suggesting the HPV vaccine. Any thoughts on this for PANDAS kids?

I remember when dr T tested my highly ticcing son for a bunch of blood levels. He commented at the time that his Histamine level was zero which was an indication of what he had was really pandas. I did really understand because he suffers from seasonal allergies but j guess that those are other histamine levels. In any case, for my son it was all about Antiinflammatories I played with many if them. That's what brought the tics down and what I use whenever they flare.

update. I had a meeting with the teachers and administration today. It could not have gone better. The teachers agreed that there is a real gap between my ds' knowledge of the material and his testing performance in math and science. They had never heard of PANDAS and we very interested and supportive and, as of today, he will be getting "time and a half" in his tests. They will, in the meantime, reseach PANDAS to be able to help any other kids with it in the future. They said that they will get back to me on what type of documentation I am going to need going forward to provide accomodations for him. I was blown away by they support. I feel like I can breathe so much better. Thanks to everyone here!

thank you. This is exactly the type of thing that I am trying to find. i will read into it.

Hi everyone, I am reading up on natural supplements to try to get by boy help with attention and have come across a multitude of articles on the benefits of green tea and l-Theanine for adhd kids as it supposedly not only focuses them but also calms them. This seems counterintuitive as caffeine is a stimulant but, then again, so are Ritalin and all other add Meds. Has anyone had any experience with this? Thanks in advance

Thank you so much. I will call a meeting with the administration and teachers next week and see how it goes. Thanks

ps. Sorry. what is IEP and how do I get one?

thank you. that is exactly my son

Hi everyone and best wishes for 2014. I hope you can help me with this one. My ds, 11, was diagnosed a year ago with PANS/PANDAS. He is doing much much better now but the fall is tricky for him as the exposure to many vriuses/illnesses, at school, make him less concentrated and more jittery than normal. At school (he attends a private school in NY), he has needed more time to get his work done and he has been getting Bs instead of As despite knowing the material inside out because he is unable to finish his tests on time. It is very discouraging to him and I spend a lot of time telling him that "Bs are a fine grade" but he feels like his body is not letting him get the grade he deserves (I hope this makes sense). He has been going to a therapist, once a week, that helps him organize and structure his work but I have refused to go down the ADHD medication route as who knows what can happen to his brain on it. He was on fish oil once and his tics increased very dramatically. My question is, can a kid like this get extra time for exams? How does this work? I don't want to come across as a tiger mom that just wants to get her sonthe extra leg in life but I do feel that he has a bone fide disadvantage. Is there a process for this type of request? He is in 6th grade and, in the spring, when he was very stabilized he was a straight A student. Any thoughts welcome. Thanks.

We use anatabloc and it is the only thing that has really worked for us. Powerful anti inflammatory OTC

My two cents on T&A. My ds had a partial tonsillectomy when he was 3 because of drooling problems. He managed to not have strep, or Pandas, until age 10. Then all of a sudden he developed pandas very quickly and intensely. Turns out he had mycoplasma and strep. My feeling is that had I not taken those T&A out he would have develop pandas much much earlier than he did. While he can still get strep the odds are much lower than had he not had them out. Meanwhile, his 2 sisters were chronic strep carriers all of last year without pandas symptoms. However the ENT was emphatic that they get a total (not partial) T&A as he wanted to minimize the exposure risk to the brother as well as have the girls end up developing pandas. So yes. T&A is a very effective tool against this fight

I live to hear this!!

I have to agree. While my son had a bug flare that was quickly diagnosed and treated successfully, looking back he had several tics, eye rolling, blinking, etc for years that I just attributed to transient childhood tics. All of them are gone now after the treatments for strep and myco and only flare occasionally. It tells me that his body has always had a pandas reaction dealing with stress and infection.

This sounds just like my son. I would advise your friend to take care of the brain inflammation that probably remains even after the inflection has clears. Ask her what happens when she gives him round the clock motrin

Pandas can come from a number of infections. It could absolutely be mycoplasma or any other thing

thanks everyone. I want to be positive and it helps tremendously reading these stories. As for the strep kit, i took down the name from my pediatrician and ordered the exact same one on amazon. expensive but it has saved me many trips to the doctor. now i just call with results and they fill prescriptions if i need them . (less and less since I had everyones tonsils removed in the house). this is the link http://www.amazon.com/Genzyme-OSOM-Ultra-Strep-Test/dp/B0056B71DC/ref=sr_1_7?ie=UTF8&qid=1380374602&sr=8-7&keywords=strep+kit good luck. i am heartned that more and more people are hearing about pandas.

hi Pr 40. While I am not doing any victory laps and am always worried, he lives 95% symptom free. During his flare up he had a very quick deterioration of many abilities. He could not focus AT ALL, he was very anxious (he is normaly a very mellow kid). He had debilitating tics that interfered with school, instrument playing and social activities and had some classic OCD symptoms, i.e. refused to drink from certain "contaminated" glasses, etc. The worst were the tics, loud, painful and all over the place. Relentless. It was awful. Nowadays, I notice a little twitch in his nose or a small throat clearing but it is because I am hypervigilant. I am sure a normal person would not notice. I have a strep kit at home and test him once every couple of weeks. Anyway, I was hoping for some stories of parents whose kids had "graduated" from pandas with the onset of puberty. After all, it is supposed to be a pediatric condition.

Hi there, I am writing a year post Panda flare and my ds (11) is doing great, medicine free. However, I cannot stop watching him like a hawk. The smallest nose twitch makes me panic. I am wondering if I anyone here has a kid whose Pandas dissapeared with puberty. It is supposed to be a pediatric disorder but I hear from older people who have it. Anyone?

Me too! Brother who was riddled with tics as a child is a mechanical/manufacturing engineer. Wild!!

Hi everyone, the good news is that my 10yo (almost 11) Pandas boy is doing great. back to 100% . The bad news is that his two sisters keep getting strep back and forth (6 times each this year. I get it too which I never did before kids). The older sister catches it first and then gives it to the little one and then I get it. The brother who had partial tonsillectomy at 3 and rarely catches it but when he did all broke loose. I want the girls to get those tonsils out and the ENT completely agrees given the family situation. He has recommended a complete tonsillectomy not a partial one. This seems like a much bigger operation with a much longer recovery time. What should I do? any advice welcome. Thank you and lots of love to all fellow Pandas parents. I am sure that everyone was very crestfalled when they heard the Oregon news.

Hi there, my ds also started, last fall, to display tics, first jaw moving and then vocal tics which got louder and louder. He was diagnosed with strep and put on augmentin. Then his dr ran a full blood panel and discovered a Mycoplasma coinfection. He put him on biaxin. His tics which had decreased tremendously came back with a vengeance during the course of this new antibiotic. I now realize that he must be herxing. Fast forward to today and he is completely tic (and antibiotic) free. But i sure am keeping a close eye on him and love coming to this board to keep updated

Sugar is one of the most inflammatory substances out there. While his pandas exacerbation lasted, any amount of sugar would set his tics off. Now that the exacerbation is over (for now) he can consume it (although I limit it significantly)

My youngest daughter had a strong body odor until I eliminated gluten from her diet.

Please report back.

Wow wow wow! Sorry to hear that. How scary! Please let me know about your experiences with dosages. For us it has been a miracle cure and, again, we are off all meds right now but if he tics a bit he pops one in and it disappears. He had no drug interactions as he was not on anything else