tpotter

So...I wonder if immunizations might have topoisomerase inhibiting factors?

Doesn't sound like the ND is padding anything, give the fact that something you weren't looking for showed up, and certainly wasn't something that he could treat himself, and also recommended a form of tx he normally stays away from. But, also sounds to me like ped has no clue what to do, either. Can you go to a gastronenterologist? Do you think there's a good one in the area? Also, we are seriously treating gut issues at this time with alternative tx, and having good luck. PM me if you want more info, but it does sound like abx may be warranted.

Ophelia, are you still going to see Dr. N? All those psych meds are probably making you worse. Also, I really recommend to anyone talking to standard docs anywhere, they you all start talking about post-infectious or autoimmune encephalitis instead of PANDAS/PANS. They don't understand PANDAS/PANS, and they don't understand what infection, et al can do to us and our kids. So, speak in their terms. They do understand post-infectious and autoimmune encephalitis. In fact, I've started listing post-infectious encephalitis (dx given by Dr. L. prior to doing IVIG and PEX) as my childrens' dx rather than PANS, and doctors have been intrigued to the point they ask: "what infection?" I then explain about strep, lyme, bartonella, etc, but also explain how once the immune system is so affected, my kids are more susceptible to anything, so encephalitis/encephalopathy could be triggered by many things, and that's why the "behaviors" are there. Had no problem at all since I started doing that. PIK...did you ever get blood tests?

Just found this reference when googling...interesting that they say that enterrococcous avium was previously referred to as Group Q Strep! http://www.ncbi.nlm.nih.gov/pubmed/21667269

There have been several times my DS(now 17) has told me that either he felt disconnected or was depressed. Would start suddenly. Each time I associated it with having run out of 5-htp or tried to back off to see if it was making a difference (but didn't tell him), and sure enough, when I started him back on 5-htp or upped the dose, he was fine again. So, could 5-htp help (we do 2 in the pm, and 1 in the am), or something like it?

Very possibly does play a role in your son's condition.

BTW, I just want to clarify that according to the NIMH, Lyme is a possible trigger for PANS, as are all infections, metabolic, and environmental triggers (Dr. Swedo does mention Lyme in her list of possible triggers.) T.Anna, I am glad that you're getting such good help from Dr. S. and Maimonodes.

If you can't get someone in-network (preferred provider) to provide the HD IVIG, I believe insurance is required to pay out of network. Several years ago, I got a neuropsych eval paid that way (they didn't have an in-network provider.) I am not certain about this, but certainly worth a look.

Yes.

OMG Beeskneesmommy...this is EXACTLY what I went through today. I even got really upset and was yelling at my husband about it all. But, I think mine may be PTSD. And, T.Anna...I totally agree with what you're saying. But, I wonder if she's just so tired of dealing with it, that she's shut down? It's too bad for the child, because the quicker she gets on it the better her child will probably get.

While looking into lyme, I would also check for bartonella, babesia (these are parasites, and affect the red blood cells), and other tick borne diseases. Do you have animals around? If so, 2 things...1) get them treated...they may be carrying the same infections, and our vet had no problem giving my dog a huge shot of penicllin in the beginning, and now leaving him on azithromycin every day, because he even gets the PANS symtpoms. Plus if your animals are sick, they will spread it to everyone else. 2) Cats can carry bartonella (cat scratch fever), but so can ticks, mosquitoes, etc, etc...just like lyme. Then, speaking of treating your animals...have you tested your whole family for infections? Turns out I was the one that was carrying around the mycoP in our family, and although very difficult to treat, it's been critical in decreasing flareups of my children. Also, whenever my older son would come home from college, my younger one would "feel" him being sick, and would flare. We've spent the whole summer working on his gut with an Ayurvedic doctor (only to find out today that he might actually have Chron's disease). So, we're still working on that, but diet has made a huge difference. Make sure that you test for giardia, c-diff (my DS20 has had several recurrent infections...probabably from the abx), and h-pylori. Although PEX and IVIG did help my children immensely, it was all short-lived. I am not sorry I got that treatment for them, because I do believe it helped with the horrible flareups they were in. But, it wasn't until we started getting to the bottom of what was going on (gut, parasites,strep, lyme, bartonella, babesia, erlichiosis, c-diff, and even congenital heart surgery for my older son), and really started working on the immune systems, and treating the other problems, that we have started seeing more improvement.

Have you checked for infection? My son's tics (mostly vocal, as well), cleared when we treated with abx and natural supplements, and also treated the immune system.

I totally agree. Pen VK did nothing for us. Not strong enough. ASO titers of 1500 are just massive, and you don't want to mess around. I would also look into seeing if you have other infections, as well. PANS is an autoimmune condition, which means the immune system is messed up. That leaves you wide open to picking up other infections, such as mycoplasma pneumonia, chlamydia pneumonia, viruses, lyme, bartonella, babesia, etc. I like the idea of getting in to see Dr. B, and also to get in to see a good LLMD. Lyme is a clinical dx in the absense of positive titers. I'd get on the lists if I were you. Just way too much involved. And, you don't want to mess around with strep + other infections. Good luck.

I'm glad you decided to ask these questions...good ones. Here is my opinion, based on experience. If there was mold in your house, I would suspect that mold very well may be part of the problem. We used cholestyramine for the mold. I don't know if the clay would work (we used that, too, but not for mold). And, I agree with S&S. Given the mood issues (I'm going to guess probably ragey-type moods?) that you probably are dealing with bartonella...at least. My whole family had/has it (DS20 who just had open heart surgery turned out to still be positive for bartonella...we had him tested because it could cause damage to the aortic valve, which is what he had.) My younger DS, though, is the one who had the bartonella rash (looks like stretch marks), but we didn't know for several years that that's what it was. I had foot pain...also a symptom. If you want to know for sure, Galaxy Dx is a good place to get tested for bartonella, and I would suggest that you do the 3-draw blood test (3 separate draws over a 5 day period to take into account the life cycle of bartonella.) If we had not done the 3-draw, DS20 would have come back negative, as it was only one of the tests on the 2nd day that came back positive. But, your Lyme literate NP might be willing to tx for bartonella without the cost of testing...for us, that consisted of azithromycin + flaggyl or tindamax + rifampin. And, tx went on for a very long time. Also, I would highly suggest that you consider adding in ART, because there could be other things that are keeping DS#2 from getting well, such as parasites (if babesia is also in the mix, it is a parasite.) ART is a great way to find out what is going on. It's quite expensive to treat, but it might be a good way to use it to at least diagnose what is still going on.

My children always had difficulty sleeping as a symptom of strep. I now know that when they suddenly start having trouble sleeping, I check for infection! Remember, though...if adding a psychotropic med..."go low, go slow" (Dr. Swedo.) Also, my DS17 has had seizures (not epileptic, but significantly abormal) since he was 8 years old...when he first got sick. He is on seizure meds (lamictal and trileptal), and 3 different neurologists have said that they do believe that the seizures are related to the PANS. Just keep that in mind. But, these are neurologists who are familiar with PANS.

JoyBop...where is this ID doctor who "gets" PANS? Just curious. I didn't know they existed

This can be caused by strep (think rheum. heart disease,) and by bartonella (can affect the mitral and aortic valves.)

It was my son who had the aortic valve replacement in June. But, the damage was a congenital defect (partially fused cusp, giving him a functionally bicuspid valve...aortic is usually tricuspid.) It was stretched out, which led to it being a severe leak (possibly stress and/or really poor college diet caused the worsening of the leak). Anyway, we also found out that his blood was positive for bartonella (did the Galaxy test), but his tissue sample was negative (so we don't believe that the bartonella played a role). This is significant, because bartonella can damage the aortic valve.

Have you checked in lyme and other co-infections? Also, has your doctor done a full panel of viral tests? If they suspect it is viral, they should be able to find it. Lyme and co-infections can also cause all the symptoms you are describing.

I do actually know of several kids who were at 4 winds quite a few years ago...before I knew what PANDAS/PANS was. I know nothing about it now, but I will chime in along the same lines as MomwithOCDSon. When one of my DS was 15, he was hospitalized (we didn't know he had PANS, yet), because he became suicidal after a severe flareup of an OCD issue that we didn't know was OCD. Now, maybe it was just a horrible hospital, but he wasn't allowed to change his clothes for 2 days, the kids did nothing at all during the day, except lie around, and they didn't even give him a blanket the first night, because "we don't have any clean ones." He also told me that his room mate told him how to build a bomb! Wonderful! I don't trust these hospitals, and honestly there are so many other things you can be doing. First thing is to check for any and all infections, such as residual strep, lyme, bartonella, babesia, erlichiosis, viruses. Both my children had PEX, and multiple IVIG's, and there's no question they helped calm things down. But, we also did years of abx, and now are entrenched in alternative tx (ART, homeopathy, etc.) I have really seen the most long term benefit from the alternative tx. Personally, I would do the alternative next, IMHO. The hospital will go the psychotropic route, and that just scares me (DS only had negative reactions to that stuff!) PM me if you want more information.

My DS's strep levels were high, and stayed that way for about 9 years, and lots of tx, including PEX and IVIG. We were all tested, and the dog was also treated. Looks like the levels just came down this year...only thing we did differently was ART. Just wanted to mention that.

ART = Autonomic Response Testing. Also look up Klinghardt, as he is the one who came up with it.

I was just looking over your DD's list of symptoms, and noticed that it was positive for bartonella (which is what I was going to suggest you check). Did you completely treat for that? Also, did she test positive for mycoP? The reason I ask is that she sounds remarkably like my DS, who was positive for both (actually the mycoP was "only" high in IgG, but I had the high IgM, and everytime my IgM went up, his IgG would skyrocket, which meant that he had it, too. My DS has had all the same symptoms you list, but we really started getting more solid gains when we started ART and homeopathy. So, here's my suggestion (and it's only my personal opinion.) If you haven't already tried ART or homeopathy, I would do it. The thing with ART is that, although we have found much more expensive, they do take you through step by step, so the herxing was way less severe for us. Also, ART can tell you what you've actually got. But, that being said, homeopathy also works really well if done right. PM me, and I will give you considerably more of my personal opinion. Not that I don't think Dr. N. is wonderful, but from personal opinion, I think there may be other things you can do.

I think you should call all the news stations, and ask to speak with the director. And, then tell them what you think.

Sounds like bartonella to me. I had it, and it cleared up with abx.