tpotter

Hi Yanni, Sorry to hear about your problems. Perhaps this has been done, but have you had him tested for lyme disease? Lyme is known for causing a "herx" every 4 weeks in many people, I think it has to do with cycles of the spirochetes. My daughter age 11 was also a PANDAS kid until Igenex tests came back positive for lyme, bartonella, and then she was later diagnosed with babesia. Coinfections common with tick bites. Since being treated aggressively for lyme, she has made huge strides. We narrowly avoided IVIG and PEX, stumbling onto this diagnosis just in time. Before that she did test high for anti dnase B titers, but we now know that her PANDAS was not clearing due to lyme underlying. So, just thought you might look into that further, or again if it has been awhile. I am going to also back what laure said. My DS was also getting "sick" every 3 weeks. Since finding out that he also has Lyme, bartonella, erlichiosis and babesia (strep is also a big issue though), we have been treating aggressively. Unfortunately, he still gets sick often, but more because he keeps getting re-exposed to strep, mycoplasma pneumonia and other things. But, the lyme and co-infections are not totally cleared from his body (it can take 1 1/2 to 2 years or more for really bad infections. Unlike Laure, though, we have done PEX and multiple IVIG's; we even did about 6 IVIG's after finding out that he had Lyme and co-infections, because we decided that we wanted to help the immune system fight it. I am not sorry we have done that, but we are also treating aggressively with multiple antibiotics (a Lyme specialist called an LLMD helps us with that), and we have also been using a lot of supplements (like vitamins, herbs, etc.) I would encourage you to look for other infections in addition to the strep, because if you don't clear all infections, you can't clear the symptoms. This is why the name is being changed to PANS, rather than PANDAS, because we now know that it's not only strep that can cause this disorder. You may want to look at that Lyme forum for additional information, as well.

Madison, Given that you are a college freshman, and presumably living in a dormatory, not to mention around a lot of people every day, I would suspect that you may be sick, or got sick with sometihng (there's a lot of strep and mycoPlasma pneumonia going around all over the country right now.) I suspect that you might have PANS (PANDAS), which is post-infectious autoimmune issues. One of the very major symptoms is OCD, and those of us who have children with it, as well as the doctors who are actually treating it, now realize it is way more common than anyone ever thought. We also know that it is not always triggered by strep, but can be triggered by strep, staph, lyme, pneumonia, mycoplasma pneumona, viruses, flu, allergies etc. Additionally, once you've gotten it, any other infection and/or allergies can trigger it. Another thing to ponder is, did you get any immunizations this year...flu, meningitis, gardisil, etc? If you already had PANS (which you may have since 5 years old), these immunizations could trigger a relapse as well, plus if you were both exposed to infection AND had the vaccinations...well you probably know what I'm thinking. There are 2 additional forums on Latitutudes...PANDAS/PITAND (most are starting to call it: PANS...Pediatric Acute-Onset Neuropsychiatric Syndromes), and Lyme. I would suggest that you look through both of these, if you want more information/doctors who actually know what to test for and how to treat, and any other questions, you can also PM me. Good luck. I hope this all works out for you. He sounds nice.

My DS19 who we now know had PANS since at least 1st grade (and I highly suspect since the MMR which he had an allergic reaction to, and possibly longer than that), had his first major episode (that we identified) at 15. He became suicidal, and ended up in a hospital. He had just had the flu and 2nd chicken pox vaccine together. The next time he became suicidal (after being sick with something...don't remember what, specifically), we had already figured out the possible connection, and Dr. K. put him immediately on abx. The suicidal ideations were gone within hours. Same thing the next time! This family is now vaccine free (except DH, who keeps insisting on getting the flu vaccine, but I told him in no uncertain terms that he is absolutely not allowed to get any live vaccines of any sort.)

Personally, I wouldn't be surprised if the infection could end up being something along the lines of MycoPlasma Pneum. It was Oct/Nov when mine flared, and I'm still fighting it (as is my DS who got strep + exposed to mycoP (his IgG doubled), plus I know of 2 other people who got it at about that time. Granted, I'm not in NY, but this year just seems so much worse than previous years. And, yes, I agree that the environmental piece may be an important clue, and may have contributed to it. I guess we'll just have to see what Dr. T., and hopefully Dr. Swedo (if they take her up on it) come up with. I agree it's so not fair that they have access to all this free service, BUT...think about how all this free publicity is helping all of us get the word out that it even exists. Maybe other doctors will jump on board as a result.

I am so very, very happy for you. This is wonderful news. I completely agree, though with the previous post. She should not be off antibiotics. PANDAS specialists are treating it like Rheumatic Fever, and keeping the kids on a regular daily dose of abx. When they get sick, it's important to raise the dose.

I hope they accept the offer. BTW, Anyone know about the white paper? Will it ever come out?

If you can find a DAN doc in your area, I don't think you'll have a problem. Even if your child is not Autistic, DAN docs think more holistically, and many are against vaccinations, because of the whole autism/vaccination link. We are getting "fired"/"dumped" from our pediatrician, simply because he decided after 4 years of treating my children (and me leading the way completely with PANDAS, which is pretty much everything wrong with them), that he just didn't feel comfortable treating them anymore. And, ours was simply because I asked him to order followup bloodwork for conditions he already has tested positive for (strep, mycoP, lyme, viruses!) So, yes, they can ask you to go elsewhere, and it's pretty sad that it all comes down to that. Personally, if you're already having issues with this doc, I would start looking elsewhere, and see if you can find a pediatrician that's a better fit.

What is Q-fever (is it Bartonella?) And, IgM, means that it is a current infection. Bartonella hides out, and when you start to treat it, it frequently will convert to a positive test (means that you had it all along.)

Beautifully said. Thank you.

Personally, I don't know why Dr. Leckman at Yale isn't being consulted, since he's a specialist in Tourettes, originally didn't believe in the PANS connection, and now is a firm believer in the fact that in some kids with Tourettes it is triggered by PANS. He's also involved in the NIH study.

Peglem, What did you end up deciding to do?

That is exactly it. I am sending off a neurotransmitter test (urine) tomorrow- if anything comes of it, information and supps that help, I will respond back and share. It also makes me think it is inflammation driven? *sigh* It's a hard one. Feels like verbal abuse. I just read this to my 19 yo, because it's exactly what he has been doing for the past 4years! He definitely gets worse when sick, and better when not sick, and also got better after IVIG and PEX. When it gets really horrendous, he says: "I don't know why I'm doing it, can't help it." But, other times, I really question whether or not it is just verbal abuse.

Interesting. I didn't listen...just read, but I listened. If you read the written report, it also stops where his voice stops: "type thing." Also, it looks like the next paragraph about Metchler ruling out PANDAS was added as an afterthought, because it's not in the video.

A local neurologist here did the same with my DS last year when he suddenly developed Parkinson's-like tremors and his balance was so bad that he couldn't walk heel-toe even in the doc's office. This doc actually suggested PANDAS as a dx (I didn't tell him the dx at first, but did tell him the whole hx, including treatments to date.) He also knew that we had seen a prominent psychiatrist at the same hospital. After he brought it up, I told him that she said it was not psychiatric. A week later, he told me it was "conversion disorder." Personally, I think they could get into a lot of medical malpractice suits with trying to make diagnoses like that.

Actually, he's already on a lot of supplements (we see a holistic chiropractor, and that has definitely made a big difference, but truly doesn't get rid of the infections. He's also gotten a year's worth of IVIG (every 6 - 8 weeks). That made a HUGE difference the first few, and then helped keep things calmer after that. But, everyone of his docs (we see Dr. B., Dr. L, LLMD, and a DAN doc, plus 2 cardiologists, and...oh yeah...I forgot, a hematologist (because of the enlarged spleen), have all said we have to get rid of the infections. There's definitely a difference when we do treat aggressively (biaxin now, and then IV abx if we can get the approval,) but it just keeps coming back. It just came as such a straange surprise when the doc pulled what he did...no provocation...nothing, except asking him to do followup blood work for tests that had already come back positive in the past (so even with insurance, it could be justified, because he was already positive for them all!) Still waiting for my family practice docs to get back to me, but they're not open today. I'd be surprised if they say "no", although they might not want to do one or 2 of the things I listed, but I can always work around those. My doc is very open minded, as she was an NP before getting her DO, has an autoimmune disorder, and we've talked about my kids in the past. But, it's just very aggrivating that it came to this, particularly since I thought he was onboard.

I just tried to write a response about the fact that strep can be anywhere in the body...not just the throat (and that's taught in medical school), plus the fact that it's not just in pre-pubescent children. But, it appears that I can only comment on facebook, and I don't have (and don't want) a facebook account. So, if anyone want to respond, feel free to use my comments above. Mechtler is a complete idiot!

Definitely not in remission. DS19 is doing much better, and I'm holding my breath (although he does keep having some fairly short-lived flairups.) DS-16 is still having a fair number of problems (resistent strep, lyme, and has high IgG to about 6 viruses, and mycoP.) So, he's chronically sick, but nowhere near as bad as prior to PEX and IVIG. When you say "much better" what do you mean? Does he still have OCD and tics? Prayers that he gets better soon. Thank you for the prayers. He still has some OCD...nothing even close to as bad as it was. He still gets some rages, but he feels them coming, and runs to his room. Occasional tics, but doesn't take his breath away. BUT, he has a lot of chest pain, just started having palpitations (2 cardiologists think it's related to infection), enlarged spleen, fluctuating tone, and fluctuating memory and executive function. He definitely has strep (ASO titers keep jumping way up), was exposed to mycoP by me (and I'm still fighting it after 1 1/2 years), has the bartonella rash, and tests positive for erlichiosis. We're desperately fighting infection, and it's just getting terribly frustrating. 2 cardiologists, 1 pediatric neurologist, 1 immunologist and 1 LLMD all say he needs to treat the infection. Well, in order to treat the infection, we have to test for it, and treat it properly, and if oral abx aren't work, then we go to the next step. But, our pediatrician dumed him, because I asked him to do followup blood work, and give him shots of bicillin, so I don't have to travel 3 hours to get it....that just makes me even madder. I really have to question the whole hippocratic oath, because it seems like too many doctors just don't seem to "get it."!

I mentioned about the Hippocratic Oath in my response email this morning. I didn't think about the whole insurance thing. It really does make a lot of sense, but still so incredibly ridiculous. Especially since he is in the position he chose to be in, because he would help me in the first place. He did write me saying I should find another doctor, because he can't keep treating my son, but never gave me the 30 day notice. My fingers are crossed, though that my personal doctor will take him on (I spoke with their office today, and also sent her a fax with details on what I need.) I guess I will need to address the issue of paying for the injections privately if necessary. This is so utterly ridiculous. They'll pay for tons of oral abx, even when it's clearly not working, but then not pay for the next level...argh!

Definitely not in remission. DS19 is doing much better, and I'm holding my breath (although he does keep having some fairly short-lived flairups.) DS-16 is still having a fair number of problems (resistent strep, lyme, and has high IgG to about 6 viruses, and mycoP.) So, he's chronically sick, but nowhere near as bad as prior to PEX and IVIG.

That's what I want to know. The worst part, is that he has several kids (that I know of...how many that I don't know of) on his caseload with PANDAS. Everything he knows about PANDAS, he learned from me, and he very well knows the specialists we use (Dr. L, Dr. B, and the DAN doc.) He's spoken with them all, and has even corresponded with Dr. C. We've had our moments in the past (that's when I found the DAN doc, because DS had super high strep titers, enlarged spleen, elevated liver enzymes, and doc refused to treat, because he had no clue what to do.) Basically, I'm not going to give him the option to dump us this way. I'll keep going there to get DS's bicillin injections (just too far to go to the DAN doc once a week.) If he tries to refuse, I'll tell him that he's abandoned my DS. This is totally unbelievable. All he had to do was tell me he wasn't comfortable ordering all the blood work. But, it is kind of scary that he's not willing to order blood work! Let's just let those kids keep suffering.

I am completely blown away right now. I feel like I am going full circle, and ending up almost at square one! This happened, because I dared to ask him to order some followup blood work, so I wouldn't have to go from doctor to doctor to get everything. DS has recently had high titers with ASO, AntiDNAse B, MycoP, Lyme, Erlichiosis, Bartonella, and Viral IgG. He's currently getting weekly bicillin injections, but we are working on getting IV abx through his DAN doctor if it is still needed. This pediatrician is physically giving him the bicillin injections, which were ordered by his LLMD. His excuse? My DS is too complicated, and he's not comfortable interpreting and treating. So, we should take a 16 yo to an internest????? (BTW...I responded with a cc to my DH. I told him that I felt like he was dumping my DS, that there is a white paper coming out in the extremely near future, that he has been treating my DS for several years, that my DS is still a child, and that just because it's complicated is no reason to try to pawn this off onto an "adult" doctor for a pediatric illness. I also told him AGAIN that we have other doctors who interpret and treat, and he knows that quite well, but that I needed one doctor to coordinate, and do things like order the tests and treat acute illness.) I can take DS to the DAN doc, but he's 45 minutes away each way, plus the wait time, and the doc has early hours. So, there goes the rest of my work schedule!

I had one too many of these in the local ER when we would come in with severe pain (one time it was pancreatititis, another time it was enlarged spleen), tics that made it very difficult to breathe, etc.) Because the doctors didn't know what to do, & they know he's diagnosed with PANDAS, they would leave him lying there for extended periods of time. The last time, I got really upset with them, and had reached the point of: "why go to the ER, even with chest pain & severe palpitations...they won't do anything anyway." So, I called the ER department, and asked to speak with the director of the ER. I didn't hear back, and then I called again, and mentioned about the palpitations and chest pain. He called back. I had a very long discussion with him, that I was tired of DS sitting there, not getting help, and the fact that I had actually not brought him to the ER with severe palpitations, because he would't get help anyway. He asked me what the ER could do to help, given the fact that "there are several kids with PANDAS who have been coming here!" This opened the perfect opportunity to discuss our needs with him, how listening to the parents was critical, and that I would send him documents and names of doctors who could give him some additional information. I think it was very supportive (we haven't been back since, so we'll have to see if it helped in the end.)

How do you get hold of Gupta and Anderson Cooper to make comments? I can't figure out how to do it. I think we should all blast him with emails to contact Dr. C., Dr. Swedo (who may not be able to talk, because she's a government employeee...just a thought), Dr. L, Dr. B, etc. Maybe if we all bombard him, giving personal experience, he might actually do another report.. Perhaps there's a certain strain of strep OR, did everyone get A vaccine (any vaccine,) for instance, did some get flu/chicken pox booster, others get gardisil, etc. and then they all got exposed to strep, etc. My older DS became suicidal after getting the chicken pox/flu vaccines (that's when we found out he had PANS.) There's some major stuff going around this year. DS and I have been fighting off strep and mycoP since November (he's missed about 2 months of school.) Almost every one of my clients (children and families) have had strep, the stomach flu and/or pneumonia (I treat babies!!!), and I'm actually thinking of taking off a month or 2 to get over this thing. There's no way they've truly checked out the infection and/or infection/vaccine issue. And, mass hysteria/conversion disorder in which they ALL get the SAME SYMTPOMS is just ludicrous.

Thank you for sharing this. Sounds like psychiatric disorders will go the way of "physical" disorders evenutally, and may even be curable. Won't that be a novel concept?

That's wonderful that you were able to convince the docs. I do agree with Trg grl, though, as Dr. Murphy's article shows that SSRI's can make PANDAS kids worse. Also, if you start on the SSRI's while she is taking the HD abx, you won't know what is causing what (whether she gets better or worse, you won't know whether it's the abx or the SSRI.)