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Now that I dug deeper into Caryn's posts..I see that her son was complaining of a sore throat around the time of initial onset....and then she herself contracted strep shortly there after. So, strep possibly in him but definitely in the house plus varicella vaccine.... I don't know guys.... It seems whenever I dig into histories...I find a mention of sore throat, strep, fever, illness, vaccine, etc., in the mix of it all. Just look into old posts yourself...you'll see there is almost always a mention of these things with onset of tics/behaviors. But also a lot of the time...a connection is unfortunately never made.

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Now that I dug deeper into Caryn's posts..I see that her son was complaining of a sore throat around the time of initial onset....and then she herself contracted strep shortly there after. So, strep possibly in him but definitely in the house plus varicella vaccine.... I don't know guys.... It seems whenever I dig into histories...I find a mention of sore throat, strep, fever, illness, vaccine, etc., in the mix of it all. Just look into old posts yourself...you'll see there is almost always a mention of these things with onset of tics/behaviors. But also a lot of the time...a connection is unfortunately never made.

Kelly,

Please don't diagnose my child over the internet.

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Hi Kelly and all,

Just wanted you to clarify... when you say chicken pox vaccine/chicken pox itself is a no-no in a PANDAS situation, do you mean an unvaccinated child should try to avoid contracting chicken pox?

 

My daughter has never been vaxed for chicken pox, and never will be, as far as I'm concerned. I've always planned for her to get it naturally, sometime before around age 10. She is six now. I think having natural immunity is stronger, and chicken pox is far more serious as an adult. I have read that we may have some serious problems down the road with this group of chicken pox vaxed kids who will grow up and may not have a very strong immunity to it, and then catch it, possibly with serious consequences. Even now, a fairly high percentage (can't remember... maybe 10%) of vaxed kids will still get chicken pox anyway if exposed to it.

 

So, I've been hoping to get my daughter exposed sometime soon, before she gets much older. There has been a lot of discussion lately here about how Tourette and PANDAS may in fact be essentially the same thing, so I am concerned how my daughter might react to the actual chicken pox disease. (She is not PANDAS as far as I know, but who really knows with these things!!) Do you think it will be a problem?

 

Thanks for any insight you can give me on this.

 

Calicat

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Caryn,

Please don't jump the gun...I by no means diagnosed your son over the internet...I never said..."Your son has PANDAS. " Nor do I ever say to someone that their child "has PANDAS." I may say it sure sounds like it to me.. or highly suggest the possibility, but never do I nor will I ever give a "diagnosis." I was just referring to the trend I see alot with this disorder..that is all... and I just pointed out that I saw it in your situation as well. I believe what I do and suggest as far as PANDAS goes is in no way any different than what you do in suggesting the gluten/food issue connection. You always see gluten/food intolerances in the kids, I always see PANDAS. I NEVER tried to state you were wrong... just giving my point of view... I think we should all be able to take the advice of others and give respect to what each of us sees in each others case.. as well as give it.

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JUST MY THEORY (please don't flame) :)

 

I think most of our kids have unusual immune systems. Everyone has antineuronal antibodies to some degree. Maybe our kids have a tendency to attack themselves when their immune systems are activated. Any flu, cold, or stressor overactivates their immune system. Exposure to very bad infections (strep) heighten the response even more. Suffering a childhood disease, even higher. Vaccines that contain both virus/bactreia and adjuvants (a chemical that basically screams BOO! at your immune system and purposely stimulates it to overreact) do this too.

 

It doesn't surprise me that antibiotic use often helps. It is like adding troops to your army. Antibiotics are probably better able to direct their attack on the enemy instead of committing friendly fire.

 

I do believe there are real cases of PANDAS, but I would assume that non-PANDAS kids would respond unfavorably to a strep infection, as well. (Cheri, would your son have exaccerbated symptoms during a strep infection?)

 

I also believe that antibiotics help a lot of kids. They prevent them from getting sick, therefore keep their dysfunctional immune systems at bay. I have been tempted to try a course, but the long-term effects are unknown and scare me. Building up a resistance and needing more scares me too.

 

For me, after a lot of consideration, I think the answer is to try to modulate the immune system naturally. I think that by providing optimum nutrition specific to the individual, removing their known allergens, and reducing the unnecessary stress in their lives, they may not overreact so much when they are sick. They may be less susceptible to getting sick too.

 

Annonymous

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hi lurker

 

I noticed you had asked

 

Cheri, would your son have exaccerbated symptoms during a strep infection?

 

as far as we know, and backed by the strep antibody testing we had done at Shands, my son with TS has never had strep, and we also did not notice any waxing of younger son's symptoms when our older son had strep throat.

 

however I have confirmed many times that any illness has always been a major tic/OCD trigger for my son, once of the reasons we have such a delicate balancing act at present with him having the Crohn's coupled with his TS...the one can set the other off very easily and so he does take extra special care to try to keep both stabilized

 

((((((((Kelly and Caryn))))))))))

 

message boards so often lead to misunderstandings. sometimes our written words just dont convey our meaning, sentiments or good intentions etc well and we are all sometimes stressed out with all we deal with and that adds to our interpretation of posts sometimes

luv ya both :)

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We do not consider ourselves a PANDAS case. I just want to point that out. Yes he had the chicken pox vax along with the Hep B vax about six weeks before we saw behavioral problems at school. Within three months we saw our first sniffing tic, and then an eruption of tics over the holidays that never waned until we went gluten free. I need to clarify this fact because I feel that every person signing on to this board lately is heading directly toward a PANDAS diagnosis without considering that there could be a multitude of reasons for the rise in symptoms and onset of the condition. I'm sorry, but not strep titers in my mind means no PANDAS. Let's not forget that this is a clinical diagnosis. A doctor's best guess at that. The antibiotics work in many cases. Yes, that is obvious. Why do. they work? Why aren't we asking that question? Why are these kids getting neurological complications when being subjected to normal childhood illnesses? What is it about their IMMUNE SYSTEM in general that is causing the outburst and breaking down their little bodies?

This is why I can't stress it enough.

Look at the food you are feeding your child, the toxic soaps and lotions they are lathering on their bodies, the fact that genetically speaking 10% of the population cannot eat wheat because they are celiac. Upwards to 30% are in someway intolerant. Enter the GMO food factor here, the high sugar diet, the MSG issue, etc....

Ugh.

I just am exhausted trying to explain myself.

We are not PANDAS. Our child is functioning normally and has no symptoms since after Christmas. We eat according to his gluten and corn free needs. We have never used antibiotics to treat our son. We quite certainly may have gone down that road, we almost did. His titers came back normal and his blood work showed he had been fighting an infection.

Let food be your medicine.

Candida is an evil thing to have growing in the body.

Constant use of antibiotics will not kill candida

 

 

I missed this post earlier...I am just going to reply to some of my thoughts regarding this and keep in mind, Caryn, I do respect your opinions, as I am sure you respect mine. :)

 

As far as strep titers meaning no PANDAS, well, I was told by staff at the NIMH (I spoke with them twice regarding PANDAS) that "it doesn't work that way." This is in regards to the question I posed regarding the whole PANDAS and strep titer question..so, basically she told me to not go strictly by titers for a PANDAS diagnosis. I was also told that by my own Doctor and I see it myself personally with my kids. Take Michelle's son Andrew, he is a perfect example of this. She happened to take Andrew to see Dr. Murphy at the perfect time, his titers were elevated and he received a PANDAS diagnosis from Dr. Murphy. Now, I know subsequently she had his titers run and they were normal. Now, had she have waited a bit to go see Dr Murphy, would she get the PANDAS diagnosis? No, she would have probably missed it. What if she went now and Dr. Murphy sees his strep titers are normal? Would she retract the diagnosis? Timing is crucial in regards to strep titers and PANDAS. You just can't go any random time and base your diagnosis on the results..there is a particular time frame. Now, it seems the only kids getting a PANDAS diagnosis are the ones who have titers that stay elevated for many, many, months..even years..or the ones fortunate enough to get the tests at the right time. Titer levels can rise dramatically in PANDAS kids, then fall relatively quickly or stay elevated for some time. It varies tremendously.

Why do antibiotics work? It has been told to me and it is my understanding that the antibiotics work by supressing, and/or modulating the immune system..thus, preventing the continued attack to the brain. I have asked that question. These kids are getting neurological complications when being subjected to normal childhood illness because they are born with the genetic predisposition for it. Our doc told us this...these kids are born with these genetically altered autoantibodies..and after continued assault from early on with way too many vaccines etc., these antibodies are strengthened and get activated and many times show mild symptoms, sometimes, not always, early on that are completely missed. These antibodies are lurking waiting to assault, and then one day they are prime and then something comes along to set them off big time..so far, strep has been recognized because it causes the most dramatic response, but, vaccines and other illness etc., are implicated. Once this happens, these kids develop food intolerances, sensitivities, allergies, other triggere etc, where before they could handle it. So, the food intolerances etc., come AFTER the initial strep/vaccine etc., assault that really got things going. Yes, I do look at why, trust me. The ROOT cause of it all is the genetics, but, what can you do about that? After that, insult by vaccines/infections that then result in food intolerances, sensitivities, allergies, etc., that also make things worse. That is why I try to stress to look at PANDAS first, as I believe it is the next step in these conditions that can be addressed if it be the case, and then, you could prevent these food problems altogether. If the foods kids eat and the soaps they use are the CAUSE of these neurological problems (I agree that a kid who has these problems can greatly benefit from diet changes)...then I believe we would have a national epidemic on our hands. We are the minority (even though it does not seem like it when on this forum). The vast majority of kids get their vaccines and eat junk galore and use all kind of crazy products daily with absolutely no problems. I personally know of no other kids with these problems...everyone I know has kids that eat junk all day..no problem. It is in our genetic make-up that does not allow for this. I do not believe the foods are the initial cause of it. Just my opinion!

One last thing...with or without treatment, a PANDAS childs symptoms will wane down over time (and sometimes it can be a very long time), and either completely go away or become almost unnoticeable, antibiotics are not necessary but definitely help out and can prevent further complications from strep. If strep is present and not detected, a child can have symptoms which will eventually go away after their body naturally fights off the infection and the titers come back down....no one would ever know strep was even present.

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Lurker,

I totally get and agree with your theory. Have you seen Dr. Demio? It is funny he refers to the battle and the troops also. It all make perfect sense in my mind. He also wanted us to modulate the immune system. He suggested using Actos. (some risk involved as it is an off label use) However, Chemar has suggested a more natural remedy with monolaurin. I agree the antibiotics help keep the strep and infections at bay not causing the immune system to kick into high gear. I love the dialogue here. It is so interesting and informative. Yes we all have our opinions and that is what is so great! We are trying antibiotics and meds for the emotional tic issue now. All I can say is my son is more pleasant then he has been in years. So far no side effects either.

 

Michele

JUST MY THEORY (please don't flame) :)

 

I think most of our kids have unusual immune systems. Everyone has antineuronal antibodies to some degree. Maybe our kids have a tendency to attack themselves when their immune systems are activated. Any flu, cold, or stressor overactivates their immune system. Exposure to very bad infections (strep) heighten the response even more. Suffering a childhood disease, even higher. Vaccines that contain both virus/bactreia and adjuvants (a chemical that basically screams BOO! at your immune system and purposely stimulates it to overreact) do this too.

 

It doesn't surprise me that antibiotic use often helps. It is like adding troops to your army. Antibiotics are probably better able to direct their attack on the enemy instead of committing friendly fire.

 

I do believe there are real cases of PANDAS, but I would assume that non-PANDAS kids would respond unfavorably to a strep infection, as well. (Cheri, would your son have exaccerbated symptoms during a strep infection?)

 

I also believe that antibiotics help a lot of kids. They prevent them from getting sick, therefore keep their dysfunctional immune systems at bay. I have been tempted to try a course, but the long-term effects are unknown and scare me. Building up a resistance and needing more scares me too.

 

For me, after a lot of consideration, I think the answer is to try to modulate the immune system naturally. I think that by providing optimum nutrition specific to the individual, removing their known allergens, and reducing the unnecessary stress in their lives, they may not overreact so much when they are sick. They may be less susceptible to getting sick too.

 

Annonymous

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However, Chemar has suggested a more natural remedy with monolaurin.

Michele

 

:)

 

just wanted to post a very clear disclaimer here...I am *not* a medical doctor and so I do try to always qualify that. I post on *our* experience, not to recommend or advise what others should do

 

I would never advise anyone to take my posting on what I have learned from helping my son to mean that they should not follow their own doctor's recommendations. Quite the opposite. I try to always urge that people work with a qualified professional.

 

we use monolaurin as a natural antibiotic, but I am not suggesting that someone with a PANDAS dx should not take the antibiotics recommended by their physician, and rather use monolaurin!

 

I know you werent suggesting that Michele :) but just need to be sure that everyone understands that:)

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A doctor (DO/ allergy and immunogist) pretty much explained it the same way to me. It begins with the immune system and then affects the digestive system. I guess I am wanting to stop the process so Kelly- you are saying that you can prevent it from affecting the digestive system and prevent food intelorences: Is that with antibiotics? Is that what stops it? Also, according to Dr. Murphy's assistant, you are also right about the titer levels. She said they do not have to be raised to be considered PANDAS. It is the pattern. I just wish that the doctors would read the posts that we are all discussing. Or if they could come up with a way to stop the cycle. I hope they do and we will all be looking at these old posts one day and go, "Oh look, we were on the right track when we said ....."

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Hi,

I have been reading the replies and I am grateful to all of you for your concern about my grandson. I am also concerned about your children and I am praying for all of us. I would like to say to Chamar that I know you are not a Doctor but you should be, you and all the members here seem to know more about PANDAS AND SYDENHAM CHOREA. Then the Doctors that I have taken my grandson too!

But I also know that we have to put our trust in the hands of the God and pray that he guides us to the right doctor. In my case we got the run around by so, Meany doctors that I could not understand what was happening. All doors where being closed on us!

And then like a light went on I remember God will close doors,becuase you are going the wrong way.

Now I don't know if the doctor in Vegas is right about it being PANDAS. Or Dr Scott is right about it being SYDENHAM CHOREA.

My heart is saying it is CHOREA. AND all the research I have done says it is CHOREA.

The CLONIDINE that the Dr. prescribe scares me. It knocks him out at night and I mean it KNOCKS HIM OUT.

To night I am going to cut the pill in half and call the Doctor Monday and tell him that I don't like this med.

I have to go give him a bath with Epsom Salt right now.

Because he is jerking his little head so the tics are back:(

Thank you all Chemar,bmom,michele,DERESmith,calicat. if I forgot anyone I also Thank you for all your help and please keep posting.

You are in my thoughts and prayers.

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A doctor (DO/ allergy and immunogist) pretty much explained it the same way to me. It begins with the immune system and then affects the digestive system. I guess I am wanting to stop the process so Kelly- you are saying that you can prevent it from affecting the digestive system and prevent food intelorences: Is that with antibiotics? Is that what stops it? Also, according to Dr. Murphy's assistant, you are also right about the titer levels. She said they do not have to be raised to be considered PANDAS. It is the pattern. I just wish that the doctors would read the posts that we are all discussing. Or if they could come up with a way to stop the cycle. I hope they do and we will all be looking at these old posts one day and go, "Oh look, we were on the right track when we said ....."

 

Thanks, Bmom.

I can't really answer your question on how to stop the assault that eventually can lead to more problems over time. My best guess would be if we could somehow identify these kids that are genetically predisposed to this from birth...we could then do our best to avoid the assaults on the immune system by being very careful with vaccines and very diligent in regards to infections, etc., and making sure these kids got on antibiotics asap if a bacterial infection were present, and of course doing our best to keep these kids healthy and strong with good diets, exercise, etc. Now that we are in the position we are in, I think the same thing applies. Keep the kids as healthy as possible, avoid any assaults on the immune system that you humanly can, and be very diligent and on the look out for infections and strep, and if present, antibiotics asap. The less assaults on the immune system, the less chance for food intolerances/sensitivities/allergies etc., to develop. That is our plan here, just feed them good whole foods, give whatever needed supplements, and just watch out for stuff. After this last strep and PANDAS attack, my older son was recently re-tested for his inhaled allergies. He went from only being allergic to tree pollen, to now being allergic to tree pollen, grass pollen, all the fall weed pollens they tested for, and one mold strain!!!! My younger son seems to be holding out so far as allergies are concerned..although I am suspecting that some food sensitivites have now developed in him after this last PANDAS episode also. We are in the process of getting IGG testing to be sure. They are doing great in the big scope of things...soooo much better than at onset..actually there is nothing to mention going on here these days. :) They have not developed and major digestive issues, etc., at this point..am I will do my best to monitor them closly and watch out for anything that sets their systems into motion. They are on Pen Vk daily, and that helps me sleep better at night knowing they have some added protection against the bad guys. (we do probiotics also to make sure their intestinal flora stays healthy and the Pen VK doesn't kill off the good guys. Although I am aware any antibiotic can do this..Pen VK is not the biggest culprit for this...the wide spectrum antibiotics seem to carry the biggest risk for Candida overgrowth, Pen Vk is a very narrow spectrum antibiotic.)

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Chemar, sorry for including your suggestion. I just thought Monolaurin is a great drug free supplement for those with immune issues. It is not very widely known about about even at the vitamin shops. I wanted to give credit to you since you were the one who told me about it. All of us here respect all your input and knowledge you provide us everyday. Even if you're not a Dr. it is your experience that we appreciate.

 

Michele

 

 

However, Chemar has suggested a more natural remedy with monolaurin.

Michele

 

:)

 

just wanted to post a very clear disclaimer here...I am *not* a medical doctor and so I do try to always qualify that. I post on *our* experience, not to recommend or advise what others should do

 

I would never advise anyone to take my posting on what I have learned from helping my son to mean that they should not follow their own doctor's recommendations. Quite the opposite. I try to always urge that people work with a qualified professional.

 

we use monolaurin as a natural antibiotic, but I am not suggesting that someone with a PANDAS dx should not take the antibiotics recommended by their physician, and rather use monolaurin!

 

I know you werent suggesting that Michele ^_^ but just need to be sure that everyone understands that:)

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:) oh that's ok Michele...I dont mind the info being passed along. I do just obviously have to be very careful that my sharing of what we experience and discover is never interpreted as "medical advice" ^_^ hence the need to add lil disclaimers every now and then

 

I think monolaurin really is an excellent supplement, especially as research seems to indicate it is truly microbiocidal....acting against a whole range from viruses to bacteria and fungi. I see to recall it was Giselle who first mentioned it here (miss you Giselle and hope you and Hoyt are doing well :) )

 

there are other natural antibiotics too....garlic being a real easy one to incorporate in the diet, as is honey.

 

when my son had epstein barr many years ago, we also learned of the benefits of olive leaf extract

 

we were told to treat these with care tho, remembering not to overuse them as one doesnt want tolerance to develop. I am not sure what the protocol would be for prophylactic use, but we were told 10 days on 10 days off for my son when actively treating infection.

 

hope everyone has a great weekend

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I realised that I forgot to include the links for the articles about the strep and AIDS hanging out intercellularly, on the first page of this thread. Opps. Notice the words cysteine protease in the pubmed article.

 

http://www.pubmedcentral.nih.gov/articlere...i?artid=1326258

 

Background

Group A streptococcal severe soft tissue infections, such as necrotizing fasciitis, are rapidly progressive infections associated with high mortality. Group A streptococcus is typically considered an extracellular pathogen, but has been shown to reside intracellularly in host cells.

 

Methods and Findings

We characterized in vivo interactions between group A streptococci (GAS) and cells involved in innate immune responses, using human biopsies (n = 70) collected from 17 patients with soft tissue infections. Immunostaining and in situ image analysis revealed high amounts of bacteria in the biopsies, even in those collected after prolonged antibiotic therapy. Viability of the streptococci was assessed by use of a bacterial viability stain, which demonstrated viable bacteria in 74% of the biopsies. GAS were present both extracellularly and intracellularly within phagocytic cells, primarily within macrophages. Intracellular GAS were predominantly noted in biopsies from newly involved tissue characterized by lower inflammation and bacterial load, whereas purely extracellular GAS or a combination of intra- and extracellular GAS dominated in severely inflamed tissue. The latter tissue was also associated with a significantly increased amount of the cysteine protease streptococcal pyrogenic exotoxin SpeB. In vitro studies confirmed that macrophages serve as reservoirs for viable GAS, and infection with a speB-deletion mutant produced significantly lower frequencies of cells with viable GAS following infection as compared to the wild-type bacteria.

 

 

http://www.rochestercitynewspaper.com/news...here+it+lives+/

 

Eventually the virus's ability to hide in the body, and replicate itself, allows it to overcome the immune system.

 

Researchers have long understood that HIV has the unusual ability to infect two different types of cells critical to the immune defense arsenal in humans - T-cells and macrophages. T-cells can sense that foreign organisms have invaded the body, and quickly multiply and grow into small armies designed specifically to counterattack the invaders.

 

Macrophages perform a different, but equally important role. They roam the body independently, a bit like scavengers, seeking dead cells and bacteria to engulf and digest. They don't undergo cell division and rapidly multiply like T-cells. HIV's ability to infect both of these dividing and non-dividing cells is the reason scientists often refer to it as an "intelligent" virus. It's also the reason HIV is so deadly.

 

HIV attacks T-cells because every time these cells divide, they create another opportunity for the invading virus to replicate itself. T-cells try to defend the body by committing suicide, and they self-destruct so quickly that HIV would be eliminated if it didn't have the macrophages as a fallback.

 

"The purpose of every living organism is to survive, and HIV has brilliantly learned how to hide in macrophage cells over many years,"

http://www.rochestercitynewspaper.com/news...here+it+lives+/

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