Hrosenkrantz

Ophelia, congratulations on the insurance approval. Are you looking for information on where you can get IVIG in Florida? I know of a mom in South Florida whose kid gets monthly IVIG there. I'd be happy to send you her contact information but you inbox is full...

DCmom -- i'm curious about why doctor doesn't believe in prophlaxis.... I've had a couple of doctors suggest the same thing recently to me but I do not fully understand the reason -- is doctor opposed, or just thinks it does not do anything so why keep pumping the kid with abx?

pianogirl -- my son, much younger, has his language (and language retrieval) effected by PANS. Different medical interventions seems to help his language. At its worse, he echos what we say to him. When he is improving, his wording is off; at the grocery store this evening, he was referring to the donuts he wanted to buy as "dunkin donuts", or he will refer to a milkshake as a "smoothie''. Given the long-standing impact this has had on my son's language, I found it very helpful to read Brain on Fire, since the writer talks about what it was like to have her language and her ability to speak impacted...

I have a friend whose kid is newly diagnosed w pandas. The doctor rxed keflex and nystatin. My friend is wondering if the nystatin can be given at the same time as the keflex. Anybody know?

Kathy - I've been there. Hope you come through this ok and your son gets this out of his system and back his thriving self. I've been at this for quite a while and have never fully bought into the herx concept. Perhaps that's why my kid is far from recovered -- but the idea of giving the kid a medicine that sets them back so badly -- how do we know its a herx, or just a bad reaction that is not helping. This is what happened to us the two times we tried bactrim. The reaction was so off the charts awful. Now one could argue I should see this "herx" through. Ultimately though we took him off the medicine, on doctors' advice. Oy vey is right:) My feeling is if a medicine makes a southern mom say Oy Vey, its not good

What are the pysch meds? Out of curiosity...

Mayzoo -- we are dealing with throwing and other aggressive behaviours in our child. This is not the "raging" we dealt with earlier in the the process. It's different. I was discussing behaviour modication programs with my husband; we are finding they are not effective with him. Like my husband says: "when he is like this, it's as if he is in a trance." Don't know if this is what you are seeing.

Trinity Bella -- how does it help?

t_anna -- have you tried mino? (We've been around long enough that we've seemed to have tried all of them, including ceftin. Mino seems to be the new thing. When we first started down this road in oct 2012, it seemed augmentin was the gold standard)

Melanie -- there is an a Facebook pandas group that seems to have an active Dr. T contingent, and in that group, I believe, have posted a link to all the bloodtests he does at the initial appointment. I actually have the list in my files that I can send you (as it happens, my son already had most of those tests when i discovered the file) and I can PM them to you if you need them. GL

SSS-- question -- if the underlying Lyme May never be fully eradicated, is the hope that aggressive abx will at least chip away at it and lead to improvements? (Asking not as an argument, but rather w an eye to understanding the different approaches)

I clearly need to watch the videos and do the reading -- but one question I have -- if one is one to have an antipbody in the blood that causes encephalitis -- do those antibodies go away with treatment? Do they come and go with treatment? Sorry I'm asking here out of scientific ignorance.

HopeinHIM -- just wanted to say I feel your pain. It sounds like you have not been stuck in this world as long as some of us have. I have been to Dr B and many other PANS doctors (if there is a PANS -- or NON-PANS doctor for that matter! -- out there, my son has seen them!) One thing you may find is that you can talk to five different doctors, and you will get five different explanations as to why your kid is not better. Each has their own protocol and favorite medicine. A medicine one doctor loves, another hates. It can be very overwhelming and stressful -- how do you know which path to take, which is right for your kid? Further complicating the matter is that you will find families out there who got better by picking the dr B route, or the Dr T route, or multiple other routes -- and isn't that all we desperately want -- to make our kids better? I'm sorry this ramble isn't giving you the guidance you want -- I wish I could write you a message and tell you to pick a certain doctors path. Ultimately you are going to have to try different things, go with your gut (a phrase i hate), and observe what works and doesn't work with your kid. GL

Thank you for posting this. I agree that it is complicated, but I also found it interesting to read

We have found oral steroids to be quite helpful. I'd do them again if given the chance.

My 8 year old PANS son also has oppositional behaviour. I'd be interested in seeing a discussion of this -- its hard for me to tell where the PANS and 8 year old boy mischief/obnoxiousness begins. It's easier for me to see how a PANS flare impacts him in other areas -- language for instance (his language skills are impacted by flares and where he is in treatment). Or impulse control, raging, even sensory issues. But when his behavour is oppositional, its hard for me to truly identify these as PANS symptoms -- I just don't know.

How do you know your child has high dopamine levels? (asking out of curiosity)

I've been reading the posts recently about mino, about how it crosses the BBB. If this is one of the few abx that does this, why isn't prescribed more regularly for PANS? Just curious...

We tried bactrim, twice, per Dr. B. The reactions were so horrific, among the worst of all bad episodes 2 years (oye) of dealing with this -- like two hours from driving to the emergency room bad. I know some people would say this is a herx and you shld stick with it, detox, or maybe lower the dosage of these herx-inducing antibiotics a bit. For arguments sake -- if valtrex is helping, and it sounds like it is -- would would be the harm of just doing that and stopping the mino and bactrim? I'm stuck on the line in your message that says nothing good has gome of it even though on it for years

One person's cigarette relapse is another person's too-frequent burger king drive through, or 10 am glass of wine (not that I know anyone who would do that)

While I know it's not wise to treat based on what worked for another kid on ther internet...this story does remind me of another pandas kiddo who I think was constantly barking. It turned out the kid had a staph infection in her nose, and Bactrim cleared up the barking. I know Bactrim doesn't work for everyone -- my kid had a terrible reaction to it, twice --,but passing along fwiw

Hi -- can't speak to the flare question, but my son has also had some strange and bizarre biting episodes. Doesn't happen all the time, but more than it should. There was one this weekend and I made a list for my own records of each episode, what triggered it etc so I cld ascertain patterns etc. happy to discuss it more off forum

I have a friend who is investigating whether her kid has PANDAS. The kid's strep ASO is in normal range (like two digits) and has gone down with time. But the anti dnas b strep antibodies are high, in the 300s, and have gone up with time. Why is that? If anti dnase b means there was an infection at one time, why would the level go up?

Hi -- I know news stories about PANDAS/PANS usually make it to this forum, but i havent seen this one, and a relative forwarded it to me, so passing along http://philadelphia.cbslocal.com/2014/06/10/health-mysterious-brain-illness-causes-terrifying-outbursts/

We tried it twice without much effect. But the instructions call for three doses a day for four months before there is a effect, and between abx and everything else, we never made it that long w this product. I wld be curious though if you see results