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Everything posted by tpotter

  1. I, too, would check every single possible infection, and I would also look into alternative treatment, as well. We did not know our DS, who was dx with Asperger's, really had PANS until he was 15, and ended up in a psych hospital, destroying the house, etc. And, the only reason we put 2 and 2 together, was because of his brother's sudden onset 5 years earlier (and still took 4 years to get a dx.) I would look at the possibilty of strep, viruses (don't let them tell you that IgG doesn't matter, because it does when it's high), lyme, bartonella, babesia, erlichiosis, rocky mt. spotted fever, immunizations, giardia, h-pylori, c-diff, mycoplasma pneumonia, and more. Do you have, or know of an LLMD? So many of us have found that lyme is involved, and honestly, they are the only ones who can really know what to do if it is lyme and co-infections. It's terribly important that you deal with possible yeast (caused by methylation issues and abx). I was going to PM, but looks like there are several people here who are new, so here are my recommendations: 1) Test for the above infections...you might be able to get your PCP to do the testing. 2) See if your PCP will do an immunological workup, if not get an appointment with a PANS friendly immunologist (listed at the top of the PANS forum) 3) Consider seeing an LLMD to make sure that lyme and co-infections are not a part of this. Remember that, even if Lyme, bartonella, babesia, erlichiosis, RMSF test negative, there are lots of false negatives, so sometimes it needs to be dx clinically. If your child is in and out of psych hospitals, it's important to cover all bases. 4) Consider alternative medicine. We have used ART, chiropractics, homeopathy, acupuncture. Not only do these help treat the underlying conditions, but they also help with the immune system. These alternative treatments have made a HUGE difference for my family, but you don't need to do all of them...just one or 2. While you're at it, consider the methylation...how the body is able to rid itself of toxins...is important. Your PCP can run a simple MTHFR test, and if it comes back positive for the mutation (which i suspect it might), post it on the PANS forum, and members there can help you figure out what to do next. 5) Make sure you really, really support the gut. The gut is the 2nd brain, and actually there is brain tissue in the gut. So, probiotics, good diet, all will make a difference. This is where I would suggest you start, based on personal experience.
  2. We have to do another blood draw as well but DD won't go out the house. She is not afraid of the needle, she's just afraid of the anxiety that comes once she is out. I have to ask the doctor to get them to come to the house. I will keep you and DS in my prayers. DD's doctor wanted us to admit her in the Hospital so they could do all the testing while she is raging but the regional district won't do the one on one service needed for developmentally disabled patients unless we dial 911. I told them there is no way we are going to put her through that kind of trauma. Ridiculously stupid rules! made up by people who I think have no real clue. We been approved since June 1 for in-home services that has taken us since November to get setup. It's about a week and still nobody from regional is moving. I'm thinking I have to make some craziness of my own to get some behavioral help. OMG...idiots. They have no idea what a rage entails. Trying to draw blood during a rage is about the dumbest thing I've ever heard. Then again, DS's school (when he was in 6th grade) thought it would be "interesting" to see what his rage looked like I would make sure that the blood draws are looking for mycoP, and also see if you can get testing for bartonella and babesia. They can all cause rages. Even if the bart and babesia don't come back positive, I would definitely consider trying to get LLMD to treat for it.
  3. Thank you all. Still waiting...4 1/2 hours and counting.
  4. Need lots of prayers. Getting aortic valve repaired (hopefully) or replaced, and also bypass of one of the arteries that grew on the right side (should have been on the left.) I have already sent in a triple-draw blood test (over a 5 day period) for bartonella, and the surgeon has the test kit for a tissue sample if the valve is actually replaced. I have also asked that they test for rheum. fever. The surgeon kept arguing with me this a.m. that if he had a "hx" of the 2 infections, it won't show up anymore in tissue sample, because the infection is gone. I tried to explain that we need to find out if it wasn't successfully treated, and so is still there, but my son got upset, and yelled at me to just stop discussing it. At any rate, the surgeon had me give the kit to the OR nurse, who was way more interested. She hadn't heard of bartonella, but had heard of cat scratch fever. It's going to be a long day of waiting here.
  5. As I've said previously, I know kids who have had severe psychiatric symptoms from PANS. That includes hallucinations, hyper-anxiety, and more. Think "Brain on Fire" (which certainly sounds like one cause of PANS to me.) I know kids with PANS whose OCD possibly coupled with other things like medication, vaccination, hallucination, etc. makes it not so far-fetched to think they might be able to plan out, such an incident. Unfortunately, not all our kids are perfectly behaved. Anything and everything is possible with this horrible diagnosis. I don't think we need to get personal with individuals who have done a tremendous amount to get the word out. Honestly, I've been on this board for more than 4 years, since before any of the websites were made, since before Beth started getting the word out, etc, etc. And, if it wasn't for each and every one of these people and entities who have done everything they could to get the word out in their own unique way, we wouldn't have much of the research we now have, and so much of the knowledge we now have.
  6. My children do not use psychotropics at all. DS20 used them, but it always made him violent or just didn't work. Being that this is a neuropsychiatric disorder, SSRI's, and psychotropics frequently are not needed, and if you do use them, Dr. Swedo cautions to "go low, and go slow."
  7. Very even handed article. But, interestingly, they mentioned CANS but not PANS.
  8. I also know several PANS kids who have had very violent, confrontational behavior when in a flareup, and I have witnessed several such episodes. And, like airial95 mentioned, there are forms of OCD that come down to very meticulous planning. DS at one point in high school, decided he was going to make sure that everyone knew that God didn't exist. He printed out hundreds (unbeknownst to anyone) flyers, and would have posted them all over the school (and I'm sure would have gotten into trouble), if he hadn't told me, and I called the school. Granted that's not homicidal, but what if that "I'm going to print out and put up a bunch of flyers, and then do the next step, etc., was just a few steps further. Now, what if the PANS was being treated with psychotropics? When DS was put on psychotropics, he became horrendously violent...swing a metal pipe at my head one time. So, yes, unfortunately, I do believe this could be associated, and until we have all the information, we may never know.
  9. DS was admitted to the hospital yesterday...symptomatic. Cardiologist wants this done ASAP. We all agree, but there's still the issue of bartonella. I got a response back from Galaxy Labs, so now I just have to make certain that part of his valve is sent in for testing. The surgeon who did the consult today looked at me like I was crazy. But, we did ask for a different surgeon, anyway (the one who did my DH's mitral valve 2 years ago.) And, while I'm on that subject...trying to get him to get blood tested for bartonella is like pulling teeth. I keep telling him that it can be contageous, but he just won't follow through. This, time though, it's going to get done, because I've about had it! And, there's also the issue that we know his IgG for mycoP is chronically high, as my IgM and IgG just won't go down...been treating it for 2 1/2 years. Today, my DS was having to make the decision of whether to get a pig/cow's valve (apparently they are now doing cows), and have to get a replacement in 5 - 15 years, or get a mechanical valve, and have to deal with coumadin and the risk of blood clots/bleeding for the rest of his life! This seriously is so bad.
  10. Can be caused by lyme and co-infections. Google disautonomia + lyme
  11. I agree...outrageous. If there was a medical form for school or the like, I could see them charging up to $20, but a lab form should be part of the visit. What are they going to charge for next...prescriptions? I also think you should call the office, and ask them if a mistake was made.
  12. Luckily, DS has been off abx for a very long time, so that shouldn't be too hard to do the test. I will see what I can find out about a lyme literate cardiologist.
  13. Thank you. This sounds EXACTLY like everyone in my family.
  14. Thanks for the prayers. How did they find the lyme in her heart? What is the aneurysm related to...do they know?
  15. Unfortunately, I think this is correct...that is the surgery. We know the cardiologist and the surgeon, as DH had mitral valve replacement 2 years ago (I have always suspected all the infections for him, too, but he REFUSES to accept it, even though his Lyme test is the only one in our family that actually came back CDC positive. The rest of us were based on clinical symptoms, and even his clinical picture is quite positive. The decision on my son's valve was made by doing an echo...found that the leak had increased to moderate/severe, and then doing a MET test (stress test) to confirm it. I asked the dr. if he could just repair the valve, but because it is a bicuspid, instead of tricuspid, he said there's really no way to truly repair it. I trust his opinion on this part, but not the infection part, and there's no way I'm not going to absolutely confirm beyond a shadow of a doubt that this was not caused by infection. I like the idea of trying to get hold of Dr. Fallon, and will try to call him. I've also now got an email into Galaxy Labs, per MDMom...thanks. I've also sent an email to our dr, and asked him to check into doing the lab, and I have a call into the vet to see if the bartonella test he did on our dog (the vet says it is VERY accurate, unlike the human tests) can be done on our son. Don't have much time to do this, but I'm doing as much as I can. BTW...I have to thank our ART dr, who did a test that sent up red flags, and told us to get him to the cardiologist. Otherwise, we would never have known. Can you imagine if the cardiologist knew that the test that found this was done by and "alternative" dr? (lol)
  16. Cardiologist said he doesn't think it has anything to do with infection, even though I pushed, and pushed and pushed. Wouldn't even consider testing. Said that there's no evidence on the heart. I even asked our PCP, and pointed out that we had been told for years that my kids didn't have PANDAS, even though it turned out that they did (plus a whole lot of other infections, too.) I am especially concerned, because bartonella can cause the aortic and mitral valves to fail, and he had to stop abx tx early 2 years ago, because he developed c-diff (so I pulled him off the abx, and overall, he seemed to be doing ok.) But, now his functionally bicuspid aortic valve (should be tricuspid, but apparently a congenital defect), which only had a mild leak as late as 2 years ago) is now a moderate/severe leak, and needs to be replaced as soon as possible! Anyone know anything about the following test for bartonella? http://www.galaxydx.com/web/human-health/faqs/ I want to insist that they test, because he doesn't need a new valve failing. We are all reeling, and it's very scary.
  17. Happened to my son, and it was babesia. After treating with IV abx, it improved. Also, his liver enzymes had gone up.
  18. I cleared mine in response to your message, but now apparently yours is full
  19. Agreed. I believe that if it's e-coli for instance, abx can make it worse.
  20. DS now 20's symptoms improved within hours, actually, so you might get lucky and have that happen. That's how I knew for sure that what we were dealing with was not bipolar and possibly even the asperger's.
  21. If you do ibuprofin, make sure the stomach is protected with food.
  22. I would also check out Costco if there's one near you. We got our dog's seizure meds there that cost over $100 at regular pharmacies, for only about $11.00!
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