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.