KLW

My gut is definitely telling me we need to try the Augmentin XR before going IVIg.

As I aggressively pursue a local, insurance-friendly provider to order IVIg for DS (12yo), I couldn't help but think that we really haven't fully vetted all antibiotic options. History: When he was five we began naturopath which included supplements with natural antibacterial properties and then in Jan 2013 I switched to a medical route due to a positive H.Pylori test. In the midst of multiple rounds of H.Pylori protocol (amoxicillin, clarithromycin and prevacid) we found that when he finished a round he could not be off the antibiotics without very troublesome behaviors. We then began using 500mg amoxicillin 1x/day but troublesome behaviors returned in afternoon. Doc told me to use amox in morning and clarithromycin in afternoon - clarithromycin was as good as sugar pill. So went to two 500mg amox per day until Sept 2014, then switched to omnicef 300mg 2x/day until Aug 2015, when we did a 21 day round of xifaxan. After that he was off all oral antibiotics for 64 days, when this past Wednesday I told doc I thought I was seeing behaviors that warranted antibiotics. In addition, folliculitis flared badly while on the xifaxan (it is not absorbed, therefore it wasn't addressing anything but the GI tract). I thought was largely under control with topical clindamycin but it was beginning to get out of control again even with the topical, so he said put him back on the omnicef. The result was immediate and I didn't realize what bad shape he was in until he felt better...the slow decline was gradual. But the folliculitis disappeared overnight and he looked and felt like a different person, bless his sweet heart. He reacts so well to antibiotics, but it has NEVER gotten us even near where we need to be. We are right back where we were before we did the xifaxan. I've never heard of omnicef used in the treatment for PANDAS and I've argued with docs more than once about the fact that we can't be thinking of "normal" dosing - more is often needed. Any time I've even mentioned Augmentin XR it is met with "that's too strong". I've been reading more and more here about people having success with antibiotics alone without having to do IVIg. Given the history above, do you think we've really given all of our antibiotic choices a chance? I think length of time on antibiotics has been fully vetted, but I'm not convinced we've tried the "right" antibiotic at the "right" dose. We don't know what bug is causing this, but clearly there is bacteria involved or the omnicef wouldn't touch it at all. Although I don't fear IVIg (maybe I should?), I can't help thinking that perhaps we should explore more antibiotic options at least in the short term. He is a tough and rather severe case that has been going on for over a decade, so I don't want to waste time if I should just go ahead and jump directly to IVIg per Dr. L. Thanks - K

Thank you Nancy - I'm trying not to let my baby boy see me cry! I'm so sorry you went through it, too. I can totally relate. I'm in it for the long haul and whatever he needs he will get. I feel he was at his sickest around age 4-5, then we brought in naturopath that really, really improved his and our quality of life. At the five year mark I just felt like we had hit an insurmountable brick wall and Yasko protocol wasn't going to move us past that point. I still have a lot of the supplements and vitamins in place and they will remain there. The hard part is the constant bacterial and yeast assault that renders him unable to be without antibiotics and antifungals but we still haven't breached that wall. Perhaps this next step will get us a little closer.

Oh, sorry, my last response was responding to Mom23boys - the subsequent post from Nancy came while I was typing

I wonder that, too. I'm having to learn and catch up on my own in order to understand the recommendations being made by the two doctors that I'm juggling (one is the integrative doc that first suggested it may be PANDAS and then I took the step further to see Dr. L). As I read more I wonder about some of the decisions that have been made in the past year and a half, very specifically why the Atlanta doc has us doing weekly subQ Ig since Jan and then why Dr. L has allowed it to continue since May when I understand frequent low dose Ig is rather contraindicated and certainly not going to treat PANDAS with the "resetting" of the immune system. There is never enough time to discuss these decisions on phone consults - too expensive to allow conversations that may go too long. She is recommending IVIg now as his Ig levels are not increasing very quickly. Its just nauseating to know what I know now and think that we've basically wasted an entire year. I know PANDAS is complicated, but the treatment options are pretty straightforward...not sure why this has to be such a winding road. He is low Ig, so plasmapheresis isn't going to remedy that. I just said the word plamapheresis to our ped and he did a "whooooaaa". If the IVIg doesn't produce the desired results, we may be headed there but like everything else, it will be an uphill battle..

No local support group. No autism diagnosis (which I believe is correct). Proper diet and supplementation is already established through years on Yasko and use of integrative doctors. I'll look at TACA, never heard of it. Thanks.

Hi, I've only posted a couple of times as I'm new here and only recently DS dx with PANDAS by Dr. Latimer. He is 12.5 years old and while the dx has only come very recently he has been sick basically his whole life. I know no one here has a crystal ball and everyone is different, but is there anyone here with a successful story of a child who had to live with PANDAS for as many years as my DS and was able to be healed at least to the point where it was manageable? He probably had first autoimmune reaction as an infant and there was no way to see that "dramatic change" in personality. I've been chasing a correct dx his whole life, seeing doctors all over the country, most of whom threw up their hands and said they didn't know what was wrong and sent me on my way. Five years of Yasko protocol probably helped keep him from being even sicker than he is now. Something I learned he needed when he was 3.5 years old probably helped preserve his brain from debilitating brain inflammation (it's a long story) and therefore preserves my hope that he will fully remit despite years of undiagnosed PANDAS (I don't say "untreated PANDAS" because he has been treated in many helpful ways over the years). He is one of the immune deficient kids as well (significantly low total IgG and subclasses IgG 1 and 3). Although his is a severe case (according to how severity is described in the overview section in pandasppn.org), it isn't extreme (no anorexia, self-injurious or other dangerous behaviors), but the anxiety and impulsiveness is severe, attention span is non-existent, tics and OCD is moderate, and his major motor issue is severe apraxia (he is basically completely non-verbal but communicates in other ways very well). He was on amoxicillin then omnicef for the past 2.5 years after I determined Yasko was not going to move us forward any longer. Once on the antibiotics he couldn't be off without very troublesome behaviors. Did a 21 day round of xifaxan in Aug as a very well-educated guess suspected small intestine bacterial overgrowth as infection source. It worked well and for the past 64 days he was off all oral antibiotics...until yesterday as I had begun to see a backslide in behaviors and a bout of severe folliculitis was no longer being controlled topically. After one dose of the omnicef everything went back to "our normal" behaviorly and the folliculitis was 90% better overnight. He responds to antibiotics and prednisone immediately. A high dose pred round in June was amazing - tics disappeared with the first dose and dysgraphia, swim stroke control and other motor function improved dramatically and immediately. We are in the midst of finding the right provider for IVIg. I'm praying, praying, praying that the immune system "reset" will be just as dramatic as his response to other treatments. His CamKII was 187, so I don't think antibiotics alone are going to do the trick and unless we weren't on the right antibiotic or right dose...2.5 years on them proves it isn't going to do the trick alone. Unfortunately we haven't ID'd a specific culprit (titers are all normal). I'm beginning to worry about bartonella, though, as he has bad stretch marks that could easily be attributed to fast growth (they are most all in areas where you would expect and stretch marks in a rapidly growing and large boy, except there are a couple of stray ones that have recently appeared in the small of his back that seem out of place. We've never tested for bartonella and I'm not confident the Lyme test was done per the one that is most reliable). Regardless, he may be so past the titer stage that we'll never know the culprit, but I do know that omnicef helps a lot and strep is often indicated with folliculitis. I know that any number of days, weeks, months and years of PANDAS is more than difficult. Twelve years is a very, very long time to live with this and not know what is going on and now that I do know, it is hard to get past the thought of "are we too late?" especially when I read things like the PANS/PANDAS Fact Sheet 2015 that states "untreated PANS (PANDAS) can cause permanent debilitation and in some cases can become encephalitic in nature". I do believe that would have been the case had we not provided the intervention we have all these years, but I'm so scared we won't be able to get to 85-90% at the least, if not fully remit. My only prayer is that he has a shot of being an independent adult. He is so smart and funny and has an incredible memory and is independent in so many ways, but the anxiety and OCD holds him back from so much. I know Beth Alison Maloney cited in Saving Sammy that a child with PANS (Lyme) went undx for 10 years and healed very well. Any long-term illness success stories is appreciated. Thanks for reading this long post - I needed to unload. - K

Hi, I know of something you could read that may help make more sense of your genetics and may help you sort out which direction you should go with testing and supplementation. I'm an alum of Dr. Amy Yasko's protocol having done that for my son five solid years. I'm positive that helped save him from what could have been a rather miserable life before finally recently learning that PANDAS is the correct diagnosis. One of her books is available free for download at http://www.dramyyasko.com/ then find the little blue link at the bottom of the page that says, "Get the Book". It will download as .pdf immediately upon clicking and you can view from the internet. It is not her most recent book but it is still very relevant. Please look beyond the "autism" title - that isn't what it is all about. One part in particular you may like to see beginning around page 139 of the book is a good explanation of MTRR and MTHFR the role of B12 and methyl groups. Actually, this book has explanations of all of the mutations you listed in your signature plus others. In case you don't know, people with COMT+/+ cannot easily handle methyl groups (I'm thinking you may know that since you are using hydroxycobalamin). But until you get enough consistent B12 levels (which are probably low due to your MTRR's) it is difficult to introduce methyl groups. It takes a while to get past the problems that ensue when you begin to give the body something it desperately needs (like B12). It took months to get my son in a place where he was not detoxing from the tiniest amount of it. But we got there. Low and slow wins the race in this case. Anyway, I think the book will help you understand the mutations better and what you can do to support yourself despite having the mutations.

I don't really have an answer to your question, but I was able to get my DS off of diflucan by instead using a product called Biocidin to treat candida/yeast. It is now in my category of "best stuff ever".

Hi, new here. Twelve yo DS recently dx with PANDAS by Dr. Latimer. He fits into two subsets - 1) he has been sick since day one (not a sudden dramatic change after an infection/exposure) and 2) he is immunoglobulin deficient. I've been searching for answers his entire life and finally got them after twelve years. Thankfully, he has been treated somewhat consistently with treatment for PANDAS...we just didn't know what we were treating and it wasn't quite enough. I believe it kept him from being in much worse shape than he is. Now we are on the right track. We've been doing weekly subcutaneous IgG infusions for 40 weeks. I'm juggling two doctors - one in Atlanta that first suggested PANDAS to me but then really isn't up on things enough to know how to aggressively treat it (e.g. she had never heard of a Cunningham panel) and then Dr. Latimer who we began seeing last May. The Atlanta doc began the subQ infusions as a treatment for PANDAS and believes that treating with low dose subQ is equal to treating with IVIg for PANDAS - it just takes longer. (I know that the subQ was for PANDAS treatment as initially she wasn't even going to take baseline Ig sample - I insisted after reading risk of anaphylaxis if IgA was low.) After educating myself on this subject, it appears the two are apples and oranges. His IgG numbers have increased after 40 weeks (baseline was 449 and most recent is 818). But at this rate it will take another year to get his levels where they need to be at around 1300 to 1500. I don't take well to being told to be "patient" anymore...twelve years is long enough to be patient. And besides that, I understand that the higher dose IVIg is what is needed to reset the immune system. I find nothing that says low dose subQ Ig infusions over two years is going to have they same "reset" effect. He responded immediately to prednisone with tics completely resolving with the first dose. His CamKII was 187, anti-Tubulin was 1000. OK, so much more to the story, but here is my current conundrum - I had a Facetime appt with Dr. L last Friday. She wants to switch from the subQ IgG to IVIg and I agree. She wants to do a high dose (2g/kg) first and then monthly 1g/kg after that. Since he has the confirmed immunodeficiency, I don't think it is going to be a problem with our insurance to switch his weekly subQ prescription to a monthly IVIg - but they may balk at the initial 2g/kg. So my question: If insurance balks at 2g/kg but approves the monthly 1g/kg, does the fact that he will get several 1g/kg infusions make up for not getting the initial 2g/kg? Or is the 2g/kg imperative for the "reset". Dr. L thinks it is best just to go through her office, spend $20K out of pocket for the initial 2g/kg and then try to get "some" back through out-of-network claim reimbursement. Because of his immunodeficiency, our insurance will cover and it will only be $35 out of pocket per month with prior approval. I think the math is pretty simple here, but I just don't know if they'll go for a 2g/kg and if the higher dose is the only thing that is coming between him and his road to health, then it will be an easy decision. If any others that are in the immunodeficiency camp have any experience (and hopefully success stories) with multiple, consistent monthly IVIg without an initial 2g/kg infusion, I'd be grateful for your insight. Thank you - K