TexasDad

That was very helpful, Tami. Thanks! I hadn't thought of a nurse advocate and we certainly weren't told anything like that was available. I know there are options out there that we're not aware of.

Nancy, you bring up a good point. I can say we discussed that before deciding to proceed, but the risk is real, as you say. There are so many facets to managing this disease, i.e. doctors, courses of treatment, insurance, etc. So much of it is left up to your gut instinct. There are few, if any, concrete answers. We'll continue to explore options, but if in the end we get shut down, maybe it was a blessing.

If any of you were denied treatment, fought it, and won, please reply. I'd like to know on what grounds it was denied and what data, arguments, and/or tactics were used to win a reversal. Without going into a lot of detail, our DS16 who I've posted about several times before, is doing quite well (80-90%) post IVIg back in December of last year. He still deals with some residual OCD and minor flare-ups occasionally (tics, which he suppresses), nothing serious or debilitating. It's very manageable for him, but our Ps doctor recommended a 2nd round of IVIg earlier in the summer on a out-patient basis. Aetna denied the 2nd IVIg, now saying the same old "it is experimental and investigational" for Ps. What's odd is that the dx code the hospital used before was not specific to Ps (there still isn't one, right?) and they claim they used the same code again. The letter from Aetna specifically refers to PANDAS, though. The hospital thinks the difference may be out-patient vs. in-patient and the severity/acuteness of his initial onset. Whatever. On one hand we could just leave well-enough alone and be grateful for what he got. On the other, the next or equally important front for battling this disease is with the insurance companies and why should we settle for anything less than the best chances for getting back to 100% at the advice of his neurologist? We're lucky that ours is not a critical case at this time, but I am fed up with these insurance companies denying coverage for our children. So, if you can provide some encouragement by sharing a success, please do so. If we can go into this thinking we have a fighting chance, I think we're ready to give it our best effort. Please feel free to PM me if you prefer.

Aetna covered ours. Dx code 294.8CN.

Don't know anything about Scarlatina, but Pen VK was prescribed to fight our son's Strep infection and he is on a prophylactic course still today. He has not had a recurrent infection. We're in Dallas, TX.

Our son had a spinal tap as part of his treatment, too. He was partially sedated ("twilight sleep"), really didn't feel it, and was perfectly still. He isn't one to freak out over needles, though. Point is, they can make them really tolerable for the children and I don't think you have much to worry about. The only risk I can remember was some minor nerve damage, but it's very rare. I'm sure whoever administers it will have the proper experience.

We were using Ibuprofen for a while there to control inflammation post-IVIg to help keep things in control and promote healing while the IVIg worked its course. A couple of months ago we switched to fish oil, having read about its anti-inflammatory properties. He takes 6 x 1000 mg capsules per day. All I can report is that he maintained his level to baseline after the switch and continues to improve to this day, even with exposure to Strep and contracting two viral illnesses. It has performed equal to or better than Ibuprofen. We just use the Kirkland brand, although I'm sure the pharmaceutical grade is much better. He tolerates it well and it works for us. Reducing inflammation may also promote a healthy BBB, which I think is important in achieving and maintaining some form of a "cure."

I think it's pretty consistent across the board that steroids need at least a week to kick in. That has been our experience too. Hang in there! : )

Aetna covered ours. I have the dx code, if needed. United Healthcare is very good about covering it, I hear. BCBS is mixed.

DS16 presents the same way minus the anger (fortunately). At it's worst, he would have severe anxiety bordering on psychosis. As he was healing, he would have bouts of sadness (just felt sad and would cry, no real reason). I'll substitute sadness for the anger/rages I've read so much about any day.

Stephanie, I've appreciated reading about your results with homeopathy and the information you've shared. Long term, I would feel much better about that approach vs. abx, steroids, Ibuprofen, etc. Thing is, as challenging as it seems to find the right PANDAS treatment with traditional medicine, I think it's even more so when it comes to homeopathy. It just seems to be all over the place with everyone specializing in something different with completely different approaches. Wouldn't know where to begin to find the right one for any given situation. I don't blame you for ditching the abx to see what happens. Everything is an experiment on some level with PANDAS. Our "mommy gut" did very well for us too, so I would trust it. Prayers coming your way.

Okay, Vickie. I can see you've been on the forum for a while, so I'll take your suggestion. So, if I'm not breaking any rules of etiquette, here are the links. Like you said, those who are interested can view them. If not, no harm done. I hope some on here benefit from them the way I did. http://lds.org/general-conference/2011/04/the-atonement-covers-all-pain?lang=eng&media=video http://lds.org/general-conference/2011/04/more-than-conquerors-through-him-that-loved-us?lang=eng&media=video

In spite of the fact that we are doing so well right now, I have been especially weighed down recently by the suffering of others. Of course, it wasn't always this good for us. PANDAS is ALWAYS painful, draining, and debilitating...at best. At our lowest points, I became intimately associated with the feelings of loss, despair, and hopelessness that we all seem to experience. On many occasions I asked myself, "Who or what is in control here?" I recently came across two uplifting messages of hope that have helped tremendously. During times of trial, it seems one of the first things to go is proper perspective. These messages are religious in nature, so I won't post the links to them here. Faith is either your kind of thing, or it's not. If you're interested, please reply here or PM me and I will PM you the links to the messages. Just know that all of you are in my thoughts and prayers. I believe healing and happiness can come to all who are affected by this disease.

I'm happy to share with you our experience and take this opportunity to throw in an update our our DS16. The first onset of our son's symptoms were the day before Thanksgiving last year. His neurologist wanted to nip it in the bud, so to speak, and went right to IVIg a week later. Today, just over four months, he is at 90-95% to his original baseline and continues to slowly improve every day. I just did an "assessment" with him before writing this. From the outside, he looks and appears to be 100% normal, as what he is left with right now is very manageable for him. Currently, his PANDAS is not interfering with his normal activity at all. This is HUGE and an absolute miracle to us given how debilitating his symptoms were at onset. Within, however, and everything that PANDAS does to their minds and emotions, he still deals with intrusive thoughts and periodic bouts of ADD. I mention this because I've learned how important it is to ask THEM how they feel and what they want to do for their own healing. They know where they are, how taxing it is, and what they're willing to do to get that healing. It's not always obvious to even us parents. So, obviously a "thumbs up" from us. His next appointment with the neuro is in June and if there are any remaining symptoms/struggles, we will consider a second IVIg to see if that gets us to 100%.

Welcome! Our experience has shown, and it seems generally, that the Prednisone can take 1-2 weeks to kick in and, yes, they can continue to progress and get worse during that time. My recommendation would be to stick with it for 2-3 weeks before giving up.

Thanks for sharing this. Always good to read about other cases. Not sure how much I can offer. All the testing we've done on our 15 yo son to monitor his condition is active infections and titers for Strep. His symptoms have steadily decreased along with his ASO since he was diagnosed and received treatment back in December. I'm pretty sure Cunningham's results are mostly for confirming PANDAS with some clinical support. Never hurts and "hats off" to you for being so thorough with all the testing. From what I've heard, you will be in good hands with Dr. K and he will be the best one to answer your questions about all the testing results. I know Dr. K is not afraid of IVIg and I would guess that is what he'll recommend. That would be my only advice. I like starting with aggressive abx treatment, but wouldn't mess around longer than a couple of months without SIGNIFICANT results before going to IVIg. After treatment in December, our son is 95% and is only on Pen VK, vitamins, and fish oil right now. Have had him on max daily dosage of Ibuprofen until recently, but happy to report he is off that and only on fish oil to control inflammation now.

texas dad -- did you see a video posted by - i think - EAmom? it was very good. it was a young woman discussing her tics and her thoughts on tics. i don't know if there's anything such as studies or thinking in the medical world to back up her theory about differnet types of tics -- but i found it very interesting b/c it described my son. for a while -- i said my son did not have any tics -- i saw eye-blinking one time for about 3 seconds at on-set. however, he has sometimes made mouth noises that may be tics. he's also done a mouth wiping on the sleeve thing. for him, i believe his OCD is more of the "just right" variety -- there's not really a complicated web of thoughts to avert with compulsions. he's basically doing the compulsions b/c that makes things "right" -- w/o much more to it. this woman terms it "autistic tics" -- i guess it would be a type of stimming -- i don't know too much about that term -- but done to comfort or regulate. it's not really an involuntary movement -- although the whole thing is not consciously thought out. if your interested, i can find that link for you b/c i found it very interesting. Thanks. Never saw the video, though. If you come across it, I'd be interested in watching it.

Well, I'm sure you're right, then. It's funny that he responded so well to a very low dose compared to a much higher and longer course after onset. It was actually only 20 mg first day, tapering off to 4 mg on day 5. I'm always concerned about steroids as they are so temporary. Did you see a prolonged benefit? At least for him the colds and poison ivy are all cleared up. We're hoping this lasts.

Just be aware that at about 6-8 weeks out, you probably will see a flare-up that may last up to a day and certainly there will be ups and downs over the next 3-6 months. Anecdotally, this seems to be fairly common. Don't freak out. Healing from IVIg is sometimes slow, but deliberate. It takes up to 6 months to get about 90% of what you're going to get. After the first year, you have what you have.

So awesome to hear that, Tammy. I get what you say about the eyes. We can always tell how our son in doing just by looking at his eyes and the expression on his face.

That is a very interessting thought. hmmmmmm but if the brain is always under attack. how do we account for the good days, weeks, months of no symptoms?? It does make sences in a logical way that the brain isn't going away so the antibodies are always there.. but so far with PANDAS there doesn't seem to be much logic in it LOL.. stuff happens that doesn't seem like it should be stuff doesn't happen that seems like it shouldn't ~sigh~ There are a lot of things at play when it comes to the immune system - its relative strength, antigen level, cytokine activity, inflammation, etc. The state of the BBB is also a major factor in the case of PANDAS. Perhaps the BBB is more permeable during exacerbations or "bad" periods.

Yes, there are some that theorize exactly that, which is why thy say it only goes into remission. According to that model, every time the BBB opens up, antibodies are produced to attack the basal ganglia because the B-cells have classified it as an antigen. It is also theorized that IVIg can re-train the B-cells against the auto-immune behavior. Again, the earlier, the better; before it's well-established.

Great explanation. Let us not forget, however, that the biggest factor at play here is a compromised BBB. Strep infections are just about as common as colds and flu, yet only a very few develop PANDAS. Why? It's pretty obvious to me that when the average person gets Strep, the BBB remains intact and the antibodies never gain access to the basal ganglia and the auto-immune response is never developed. Theoretically (and I think practically as well), once the integrity of the BBB is restored PANDAS goes away completely. You can't eradicate Strep and some people are genetically coded to develop PANDAS once and only if the antibodies cross the BBB. If we could pick one thing to fix and that one thing was preventing compromises in the BBB, PANDAS could be cured or prevented in every case. As always, I'm willing to consider information to the contrary. This is the way I see it. Basically, yes. Either the BBB's continue to be at least intermittently compromised or the antibodies that crossed originally hang out for extended periods of time or indefinitely. Even for IVIg to work, it would seem to me that those antibodies would have to cross the BBB to suppress the activity of the Strep antibodies to have any effect. For remission to occur, the Strep antibodies that crossed have to taper off and new antibodies can't be produced or permitted to cross. Who knows? Maybe if any of us got a Strep infection coupled with a compromised BBB we would all get PANDAS. I am not aware of any tests that can tell us if the BBB is compromised or not, when it happened, what caused it, or if it is in the process of healing, etc. A reliable way to monitor all that and heal/prevent any compromises might just get us our cure. Not saying that would be the only possible cure, though. Again, just the way I see it.

Great explanation. Let us not forget, however, that the biggest factor at play here is a compromised BBB. Strep infections are just about as common as colds and flu, yet only a very few develop PANDAS. Why? It's pretty obvious to me that when the average person gets Strep, the BBB remains intact and the antibodies never gain access to the basal ganglia and the auto-immune response is never developed. Theoretically (and I think practically as well), once the integrity of the BBB is restored PANDAS goes away completely. You can't eradicate Strep and some people are genetically coded to develop PANDAS once and only if the antibodies cross the BBB. If we could pick one thing to fix and that one thing was preventing compromises in the BBB, PANDAS could be cured or prevented in every case. As always, I'm willing to consider information to the contrary. This is the way I see it.

What would your oppion be if your child with in a month of antibiotic was at 90% but then got sick again and an incress are antibiotic took her back to 90% only a few months later got sick again and went back down to 75% I think my dd since 1st starting to treat for PANDAS with antibiotics back in May 2010 keeps jumping up and down between 75% to 95% I can't say she ever really got 100% better cuz everytime she is exposed to something she gets mild symptoms.. but even at that time I say she is about 85 to 90% but when she gets sick.. it just goes down hill. Would IVIG stop that??? could she get to 99 or 100% with IVIG and stay there... or would it be like it is on the antibiotic where when exposed she gets mild symptoms and when she gets sick it gets bad??? This is my question... That being said.. her immunologist told me she would be willing to treat her with IVIG if I wanted to go that route(saw this doctor today) Though she has never used IVIG for PANDAS my dd is her 1st PANDAS child.. she said she would want to see what Dr K and Dr C and the others are doing.. but she would be willing to do it for us... Now I don't know what to do... IVIg goes further to get the child back to 100% or as close as possible. As I said, its healing effects are stronger and longer-lasting. To me, my son isn't completely functional unless he's 90%+. Anything less than that and he still has enough ups and downs and difficulty focusing to keep him away from school and other activities from time to time. That, to me, is unacceptable. At 90%+ (really 95%+), he is able to manage it pretty much 100%. We won't stop until that becomes the new baseline and my gut tells me he will eventually get to 99-100%. In your case, I would definitely do IVIg if the abx aren't consistently bringing her back to 95%+.