tpotter

I think you should also check yourself for lyme and co-infections. That could cause the joint pain, too. And, many of us have found that PANS (even with elevated strep titers) includes more than just the strep in our kids and in ourselves.

Found it!

Just heard on the news yesterday...1 in 50 kids are now dx with Autism!!!!! And, then they said "it appears that doctors are just better able to dx!" Wow...what does it have to get to? 1 in 2 kids? But, I guess by then, there won't be anyone that's not autistic to figure all this out. And, scarier...who's going to take care of all of these kids? When are we going to change all these requirements for vaccines, and such. Just truly, truly scary.

Interesting...because I'm allergic to bactrim, but I have no problem taking NAC, ALA or any of the others. Then there's my children who don't have a problem with either one.

DS also had stuttering followed by sudden inability to speak. Could be verbal tics, but also, DS turned out to have (besides strep), lyme and a lot of co-infections and viruses. So, yes, I do believe it is part of PANS (not necessarily PANDAS).

Exactly...thank you.

A few weeks ago, someone posted a link to an article by the NIMH that some kids were having their dx removed. Where would I find that article, please? Thanks.

Someone recently noted that the NIMH had completed a study where they found that some Autistic kids were able to have their dx removed. Where would I find that article? Thanks.

This one is more recent than the NYSOTA one.

You have to treat the virus. Do you see a LLMD, ND, DAN doc, ART or someone like that? They understand that treating the viruses are very important. Good luck.

I would check for 3 things: 1) Mycoplasma Pneumonia 2) Bartonella 3) Babesia MycoP is walking pneumonia, and Bartonella and Babesia are tick-borne diseases (sometimes called co-infections of lyme), and some people are beginning to believe that mycoP may also be tick-borne. All 3 can be responsible for causing rages. Both my children have all 3 along with other issues. BTW, my older son is also dx with Asperger's, but I believe that it was probably PANS all along. Definitely got worse in mid-teens. Tx for all 3 above helped tremendously.

This is so great to hear.

Yes. But, actually even more. Rages are not a part of the PANDAS picture, but they are part of mycoplasma pneumonia, bartonella and babesia. By younger son had these as some of his primary symptoms...even before the OCD and tics and other symptoms started. All 3 can be a part of tick borne diseases. Turns out I was the one that was + for mycoP (IgM), and it was Dr. B. testing the whole family for strep and mycoP that figured that one out (both boys and DH were seriously high for IgG for mycoP.) BTW...I was extremely symptomatic, but pulmonologists and immunologists did not even consider testing for it, and just kept treating my unremitting asthma with steroids (which makes lyme worse...btw). Now, all that being said, yes, even the NIMH says that Lyme is possible with PANS. And, that's why they came out with PANS. PANDAS and PITANDS are part of PANS. Dr. J. is wonderful from everything I've heard, but if you want a possibly quicker appointment with another LLMD, I can PM you the name of one in MD. You might get in quicker. Totally up to you.

But, if you're dealing with lyme, you don't want to use steroids. Makes the lyme worse. There was a post just recently on the lyme forum about having cleared lyme 2 1/2 years ago from both her kids. Can't remember all the details, but just in the past week or so. Since you're dealing with immune deficiency, lyme and strep (at least), I would definitely be also looking at co-infections, such as bartonella, babesia, erlichiosis, etc, as well as viruses, and parasites. You really have to clear all infections, plus see if there's heavy metals that are impeding the process, and other problems. Browneyesmom, are you working with an LLMD? There are specific protocols for each type of infection, and they definitely do help. I would also recommend that you consider alternative treatment (in addition to the LLMD, abx, etc.) We have gotten a lot of benefit from LLMD tx plus ART (helps figure out what is going on) plus my kids really like chiropractics, and I've gotten some great results with acupuncture. Although abx, IVIG and PEX helped my kids a lot, they just weren't holding. That's where the alternative tx has helped.

yes. treatment dose augmentin. I would be looking for other infections, and reasons. I do believe that strep could be part of this, since you said that she's been exposed at school. But, many of us have found that there is more than just one infection, since the immune system is affected. If there are more infections than just strep, as well as possibly other causes, such as mold, metabolic issues, etc, then IVIG and abx alone are not going to do the trick. I would be looking into getting tested for strep (ASO/AntiDNAse B,) viruses, lyme, mycoplasma pneumonia, bartonella, babesia, and mold, as well as checking MTHFR and more. You mention rages, and the first things that come to my mind as contributing to rages include: mycoplasma pneumonia, barotonella and babesia (I saw something recently in Time or Newsweek or something, that there is a large increase in cases of babesia in the Hudson Valley...I don't know if you're from that area, but that's where I think we actually got sick...we no longer live there.) Never-the-less, there are other places that have these illnesses, too. There's tons more info about all of this on the Lyme forum, as members on that one do discuss many issues more related to PANS than just lyme (although Lyme, of course, is a common subject, as many of the kids have that as part of the whole puzzle.) For the record (I know you're new, so you might not have seen my previous posts), my children have: mycoP, strep, lyme, bartonella, babesia, erlichiosis, very high IgG titers to viruses...coming down, though, MTHFR gene mutation, which makes it difficult for them to detox, and who knows what else. We are working very hard to improve the immune system, as well as trying to stay one step ahead of the infections, and are seeing excellent improvement.

Yeah...right...those docs are still going to tell you to "stay off the internet!"

I agree with everything in the above post. I will add, though, that there may be other infections in addition to all the strep. Keep in mind that this is an autoimmune disorder, in which the immune system is not working properly. So, when exposed to other infections, the person tends to have difficulty fighting those, also. If you don't get rid of all the infections, the immune system will stay in a state of fighting, and it will be very difficult to really improve. I believe that Dr. Rao will test for everything, as possibly will Dr. M. I would also definitely test for parasites and lyme. And, in the meantime, get those shots. DS got monthly shots of bicillin for 3 months...didn't do much. He has now gotten WEEKLY shots of bicillin for the past year, and we saw huge improvement immediately. Now, we also are doing all kinds of other things like ART, homeopathy, supplementation, etc, but honestly, I think you're on the right track at this point, and will stress yourself too much if you try to go in too many different directions. If you do want info about the alternative, stuff, too (we do both alternative and traditional, and have been at it for quite a number of years,) I can PM you more.

I agree with the mama2alex, and would also suggest that maybe it's a virus or flu coming on, and also that maybe it's the high glycemic nature of mac and cheese? My DS has trouble when blood sugars rise (and he's not hyperglycemic, typically), particularly when he's sick or getting sick. I would seriously watch the carbs. Many of our kids have problems with their adrenals not working properly, and adrenaline tends to get used up quickly. Dr. K. told me that 5 years ago when we first went to him, and it makes so much sense. Here's something I stumbled on by chance, that works for my DS when he used to get that way (and I had to use it 1 time since.) If he's not allergic to peanuts, try a small handful of peanuts (doesn't take a lot) or a tablespoon of peanutbutter. I found out several years later that PB is full of tryptophan (the precursor to seratonin), and I figure that the fat in peanuts helps it get to the brain quickly (Dr. K. thought my theory was very plausible.) Also, peanuts are one of the best foods on the glycemic index. At any rate, it would stop the rages within minutes, and he would be back to his normal cheerful self again. If the peanuts work, then you know something is probably going on with his adrenals.

I know there's a lot of discussion about steroid bursts, but if this is bartonella or other lyme co-infection, steroids can make them worse, and lyme et al, like to thrive on steroids. I agree that getting dx and treated immediately is really, really critical. We, too, have been on Rifampin for quite some time. LLMD told me to d/c it for DS17 and myself about 1 month ago, but within about 2 weeks, I realized that some symptoms we were getting might have been related, so I started Rifampin back up again. BTW...just to give you an idea of how long this all takes...we've been getting treated for lyme, bartonella, babesia, erlichiosis, mycoP for 2 1/2 years now. PANDAS tx started 1 1/2 years before that (although DS17 was sick since 8 years old, and DS20 probably got it much earlier, but we didn't know). While you're getting this all tested, I would highly recommend that you also test for viruses, such as HHV-6, Coxsackie, Parvo, and other "common" childhood viruses. Our kids weren't able to clear them, and they're all part of the deal with my family. But, all that being said, as I mentioned previously, the "true" rages that we used to get, are almost gone. And, what is left is able to be controlled. So, there is definitely hope. Big huge cyber hug going out to you and to your children right now!

Check for mycoplasma pneumona, bartonella and babesia. MycoP is walking pneumonia, and is an atypical pneumonia. Many people do not know they have it, and even high IgG can indicate current infection (despite what many docs would like to tell you.) It can also be a co-infection of lyme and/or tick-borne. Bartonella and Babesia are being found more and more commonly, and can cause neuropsych symptoms. Incidentally, if you live in the Hudson Valley (where we lived when I think we all got bitten), I was recently reading an article that said that babesia is becoming a big problem there. All 3 can cause the kinds of rages you are describing. My DS has/had all 3, and since starting treatment quite a few years ago, he no longer has the horrendous, sudden terrible rages like he had. Yes, he has periods where he become slightly ragey, but he is able to get himself to his room or to a safe place, and can now warn us that he feels it coming on. You are going to want to have an LLMD and/or ART practioner help dx the bartonella and babesia, because the blood testing is not terribly accurate (just like all lyme testing), and there are lots of false negatives. It may have to be dx by the clinical picture. Here are several things to help make the dx (they are not inclusive, but do indicate possible infection:) Bartonella: heel pain, stretch marks that look like cat scratches...primarily on stomach, back upper arms, but can be anywhere Babesia: enlarged spleen, elevated liver enzymes (babesia affects the red blood cells). Other things we did, which helped a lot (and you can certainly do in the meantime if it turns out your child has any/all of these conditions (while you treat): 1) 5-HTP (tryptophan) (we had to play around with the dosage...we give 2 at night and 1 in a.m. now) 2) handful of peanuts and/or 1 - 2 T of peanutbutter (the best I can figure is it is full of tryptophan + oil, so the oil helps it go straight to the brain.) At his worst, these stopped his rages literally within minutes! We stumbled on this in despiration, when we were trying to find protein options besides only meat. And, my son HATES peanuts, so I really don't think this would have worked if it wasn't really going to work, because I had to threaten to take away priviledges, allowance, etc, if he didn't eat the peanuts I left outside his room (he would have attacked me if I had gotten too close.) Incidentally, we made it a little more tolerant to him, by giving him 2 or 3 M&M peanuts if necessary, and then followed up with slightly larger amount...really didn't take much peanuts. I knew we were making progress when I realized I was no longer carrying peanuts around in a plastic baggie in my purse. 3) Lamictal helped our son, too, but he was originally given them because he was diagnosed with seizures (interestingly, they were not epileptic, but were seizures.) He had multiple eegs over the years, but one where we pulled him off the lamictal, and saw the difference (we found that the lamictal slowed down the suddeness of the rages, so we had time to see it coming on, and could help him realize he had to get to safety and/or we got the peanuts into him 3) When DS was in fullblown rage, CBT would not have worked, BUT, so we would try to completely get away from him. When we had a second or two of reprise, he had just enough ability to run to his room, but would require me to remind him. PM me if you have questions.

PM lss. They use him.

Oh...this is just too funny!!! Love it, love it, love it. Kind of like the "SOT" ("S**t on Toast") thread we had a few years ago.

Do you know how many people were threatened with their jobs if they didn't get the flu vaccine? I know of several working in nursing homes and hospitals! This is the same flu that was only "55% effective" (although how one can determine 55%, when that is pure chance anyway...if I get the vaccine or don't get the vaccine, I have a 50% chance of getting it or not getting it anyway.) This is the same vaccine that there was day or so of reports that it was only 55% effective, because it was the wrong strain, but then we all stopped hearing about it, probably because all these pharmacies has boatloads of pre-paid vaccines in their possession, didn't want to lose all the money, and were protected from being sued, anyway, because they were told by the government and the CDC, and the manufacturers that they were safe. Very scary.

Lyme testing tends to be very inaccurate. That's why it's considered a clinical dx, and why an LLMD is needed to really help determine if lyme and co-infections are present. Also, Norcalmom, you mentioned your thoughts about MS. If that's the case, I would not only be looking at the possiblity of lyme et al, but also looking at viruses, particularly HHV-6. There is some possible correlation with Human Herpes Virus-6 and MS and CFS. Both of my children and I have had very high viral loads. After extensive treatment of lyme/co-infections and the immune system as a whole, many of those viruses that were extremely high (IgG in all cases) have come down to normal levels, although we are still fighting some of them. DS-20 has very high HHV-6 IgG for the past year, and we are now doing a viral protocol.

Really...Dr. C's lab is finally opening? That is so good to know