Hrosenkrantz

I know of one mom for whom Bactrim was a game changer, so don't want to dissuade you if that's what your kid needs. The two times we did Bactrim were the biggest disaster we had ever seen in our two yrs of dealing w this. It was the only time we seriously contemplated bringing our kid to the emergency room. One cld argue that this was a herx, but our kid did turn a corner once we stopped Bactrim and tried a different approach. Fwiw, my non pandas kid was prescribed Bactrim at a walk in clinic for poisin ivy infection, and had a bad reaction as well.

Pandasphilly, do you administer the stuff in capsules?

searching)_for_help -- what's the new price?

meliemo -- your message describes my son to a T. Raging, vocal tics (he's 7, too young to swear) magically stop or decrease significantly when we do steroids. But he can become extremely hyper and impulsive but not angry or raging -- i call it happy hyper. I can't tell you to continue the treatment, but for me, these side effects, as difficult as they are, an improvement over the clear suffering he is facing when he is raging

Hi -- I have heard of people resubmittng to their insurance , after IVIGs have been deemed medically necessary, IVIGs that were initially not covered. I'd love to chat offlist with anyone who who has done this; couple of questions...

On the adhd meds, i have been told by pandas specialist that pandas kids don't do well with traditional ADHD meds -- something about dopamine levels. I know adderall was not good for our son.

May zoo, are you seeing any positive changes?

Mayzoo, how did you administer it?

Mayzoo, my son, prior to pans, was diagnosed with a mixed expressive receptive language disorder. When pans hit and when he flares, he can be apraxic, aphasic, whisper, and just have trouble speaking. His language came back significantly while on steroids. Dr l says he has selective mutism, not the other language disorder. T Anna, what's a vapor pen?

Mayzoo, how are you administering it to your child? (I also have a child whose speech is effected by PANS)

I was unsure whether to post this to the need to vent or success stories thread. After an embarrassingly long period away from school because he was put on medical leave, my son started school again this past wed -- he is on day 4. Its not the same school he left for medical leave, but...im shocked and flabbgergasted by how well it is going. I set everything up for the return to school as if there will be phone calls to me and problems and...there just hasn't been. THings are going well. My son seems very happy to be there. I have been afraid to write this for fear that something will go wrong. It is a weird feeling when your day-to-day has been defined for so long by PANS-related problems and...then they seem to be fading (I was going to write gone but that seems too optimistic at this point).

Yes'm interested in the questions above as well

Hmrz -- what you describe sounds like my son after his first Ivig, w the bad backslide abt 5 weeks out, then a beautiful week wcthe change in abx. Agree w the other responders that each kid's journey is very individualized, and it's only truly significant if things remain really bad for a long stretch.

Having been to a doctor once like you described (in our case, a psychiatrist), I found that the non-believers basically ignore all the signs that bolster the autoimmune argument and cling to the signs that point against it. So if you have evidence of your kid improving with antibiotics or steroids, but they are still not back to baseline -- the improvements are ``coincidence and irrelevant'' because the treatment has not cured them. Just like a neurologist told me once she concluded that when she found herself reciting the hypocratic oath to the insurance company, it was time to move on, these kinds of doctors are not worth sapping your much-needed energy. Your goal here is to help your child, not change minds. If this dude isn't helping your child, don't think about him anymore. Sorry you had to waste your time and were disappointed.

It does seem like you have a slam-dunk case for a lot of IVIG. I hope the insurance advocate is helping you.

My son was shown to be having irregular activity on a EEG this past December. Since learning of this, I can't tell you how many families I have heard about who have been able to control their kids seizures with traditional anti-seizure medications

mpatti -- i first heard of pandas from my son's developmental pediatrician at the Pediatric Care Center in Bethesa. So its not NOVA but in the area. The doctor there tested the titers and put my son on abx and referred to a pandas specialist. I'd say she is pandas friendly but does not have the kind of expertise you would get with a pandas specialist (to which she referred us)

joan pandas mom -- out of curiousity, were your 7 monthly ivigs covered by insurance?

I live in DC, so NOVA is close to me

I live in DC. My understanding is that there is a LLMD at NIHA named Dr. McCabe who usees natural remedies for some of this stuff

Cara615, don't lose your mind over this. In the time I have been dealing with this, I have seen there are a LOT of people dealing with this, and worse. As scary as your situation feels right now, I guarantee you there are other families dealing with worse. You will get through this, I promise. I know that sounds like a lot of unspecific platitudes, but I'm constantly amazed by families dealing with the worst of this who pull their children through it -- even if it takes a really long time.

mamaluvsyou, who prescribed this for you?

mayzoo -- it looks like there is an opportunity to put this question directly to Obama next week (if you want); he's going to be doing a q&a on webMD http://www.whitehouse.gov/blog/2014/03/07/ask-president-obama-your-health-care-questions-webmd

Why was she put off by the cellcept?

Ophelia, When we were appealing a denied IVIG plan for our son, the rejection letter said that after the first appeal is denied, you can chose to appeal it to an outside board which is not run by the insurance company. You have this option after a second appeal to the insurance co as well, but a health insurance advocate through my employer said we'd have a better shot if we went straight to the outside board, which is more apt to consider and weigh the evidence rather than reading from an insurance company script. My understanding is that this is the process for all insurances. The insurance advocate gave us a 50-50 shot in our appeal to the outside board, saying we had a pretty solid case. Yours sounds even more compelling/evidence based/solid. IVIG appeals do win. I will repeat waht was told to me when I was wasting a LOT of energy being angry at/depressed by insurance company ridiculousness -- don't think about it. It's not worth your energy. Please put your energy into making sure you win this appeal. The lady at the insurance path said the same thing to us as she said to you -- mayvbe you can try a different path. You know you can't and don't waste your time dwelling on their party line. Have you gotten any insurance advocates involved?