Interesting quote on Inherited TS

[P_Mom]

"Tourette syndrome is yet another neuropsychiatric disorder that may be associated with antineuronal antibodies… [After investigation, Swedo and Kiessling have said,] ‘it is possible that a single process of antineuronal antibody-mediated neuro-immunologic dysfunction could result in some patients in such diverse symptomatology as chorea, tics or other abnormal movements, hyperactivity, and obsessions and compulsions. A strong genetic component is thought to be involved in OCD, TS, and tics, but what is inherited might be an inability of the immune system to distinguish between neural tissue and certain components in the cell membrane of group A beta-hemolytic streptococcus.’"

 

"Autoimmunity and Neurologic Disorders," Medical Sciences Bulletin, September 1994

http://www.traders/co.uk/insulintrust/autoimmu.htm

 

 

 

Also, on another note...... I read recently (I'll post quote later..gotta run) that the CDC has long acknowledged the connection between autoimmune disease and vaccines...and that more and more research is coming out that these disorders...TS,TICS, OCD, Anxiety disorders, Autism spectrum disorders, etc., are indeed autoimmune diseases....I believe in the next decade, the whole treatment of these disorders will change and cures are on the horizon.

[michele]

Thank you for the link. We can only pray better clarification on treatment is on the way.

 

Michele

"Tourette syndrome is yet another neuropsychiatric disorder that may be associated with antineuronal antibodies… [After investigation, Swedo and Kiessling have said,] ‘it is possible that a single process of antineuronal antibody-mediated neuro-immunologic dysfunction could result in some patients in such diverse symptomatology as chorea, tics or other abnormal movements, hyperactivity, and obsessions and compulsions. A strong genetic component is thought to be involved in OCD, TS, and tics, but what is inherited might be an inability of the immune system to distinguish between neural tissue and certain components in the cell membrane of group A beta-hemolytic streptococcus.’"

 

"Autoimmunity and Neurologic Disorders," Medical Sciences Bulletin, September 1994

www.traders/co.uk/insulintrust/autoimmu.htm

 

 

 

Also, on another note...... I read recently (I'll post quote later..gotta run) that the CDC has long acknowledged the connection between autoimmune disease and vaccines...and that more and more research is coming out that these disorders...TS,TICS, OCD, Anxiety disorders, Autism spectrum disorders, etc., are indeed autoimmune diseases....I believe in the next decade, the whole treatment of these disorders will change and cures are on the horizon.

[Caryn]

Am I reading this wrong, Kelly, or is Swedo suggesting that all cases of T.S. are really PANDAS cases, because the trigger is in the autoimmune response against the strep bacteria?

 

The same can be said for celiac as well. I have been saying this for a long time, but often feel like it is falling on deaf ears.

I read a study which featured two teens with OCD whose symptoms stabilized on a strict gluten free diet. I have posted info about the study (albeit small) before. The more I study about gluten intolerance the more I am understanding that celiac is such as small piece of the puzzle. I just recently read that 90% of nacoleptics have a particular non-celiac associated gluten intolerance gene, meaning these folks would never test positive for celiac and so docs would tell them that they have no problem with wheat/gluten and they would continue to eat it and continue to have sleep disturbance issues thinking there was no connection at all.

Conversely, my FIL has sleep problems, although he is not dx'd with narcolepsy, he has some symptoms (nodding off several times during the day, waking up confused, falling into deep sleep w/in minutes, not sleeping well all night long.) Gluten is a major part of his daily diet.

 

We had my dh and middle son tested for celiac and both came up negative. We did the genetic screen on them as well and it turns out both second son and husband have the gene that is associated with 90% of narcoleptics. Do you see my point here? Celiac is associated with only two of nine known gluten intolerance genes. What if T.S., PANDAS, tics, whatever you all what to call this, is associated with one of the nine other genes, specifically? We will never know that until there is a study and we all compare our kids genetically. No one wants to do that, because, let's face it, gluten free diet doesn't require drug therapy or antibiotics.

 

I guess what I am saying is that there has to be an underlying catalyst that would cause the autoimmune disorder to awaken in folks. I really believe we are what we eat and if we are genetically unable to digest and process certain foods then our bodies will start to go haywire when we are exposed to them in the long term. Vaccines, in my opinion are a small and significant part of the equation as they tip the balance in most, if not all cases, but as many scientists have discovered, kids who develop autism spectrum disorders have metabolic issues that often stem from infancy but go unchecked until the stuff hits the fan. And we all know that for a large number of them the gluten free casein free diet is a key factor in improving their quality of life.

 

One final note. I am now studying the effects of low HCL on food allergies and digestive issues. This may also play a role in the development of autoimmune disorders as low HCL can cause the proliferation of bacteria like h-pylori which I know has been discussed before on this board. I guess my point here is that I am not willing to jump on the strep bandwagon right now. I think there is way more to the story and I would love to see scientists and docs look deeper into the matter before I buy into it lock, stock, and barrel.

 

Just my opinion. Take it for what it is worth--

 

Caryn

http://healthy-family.org/caryn/289

(our story, for those that don't know us)

[samsmom]

Caryn

I find your viewpoint really interesting. We have no obvious family history of TS or anything like it and I absolutely believe that Sam's immune system holds the key to all of his issues. One thing I don't understand - what does HCL mean?

Sue

[lurker]

Samsmom,

 

Hydrachloric acid, I think (stomach acid).

 

I like the theory too, with the generalization that the issues are brought on by an aberant activation of the immune system, of which one cause may be strep.

[P_Mom]

Nothing is falling on "deaf ears," I believe everyone on this forum is quite capable of "hearing" what you are saying...it is just that we all have different experiences with our kids and we all post according to those experiences and beliefs. You are dealing with celiac/gluten intolerance, and that is what you post about, and I have read no posts that disput your claims or that say you need to be careful of "pinning" everything on gluten. The parents who are interested in that approach, or feel that their kids have food issues..they are the ones listening and probably greatly appreciate your posts. I almost feel like you are "anti-PANDAS" and get offended/defensive at our posts. Would you sugggest we stop posting our views and beliefs? WE ALL KNOW there are several causes and factors to these disorders...nobody has ever suggested PANDAS is the only way, nor has anyone asked you to "jump on the strep bandwagon," or to buy into the strep connection "lock, stock, and barrell." Quite frankly, I really don't care who agrees with me or not...I post my experiences and beliefs in the event it may help someone. I am not naieve enough to think that everyone is going to agree with me. On the otherhand, I would tend to feel that everyone "jumping on the celiac/gluten bandwagon" can't be expected either. I do respect your opinion and and fully believe you have found what has helped your son and family.....and you post to help others..... and your help and insights are appreciated by many! However, your posts do not apply to me (except this last one, which seemed to be directed to me), therefore, I do not respond to them........I do respect them though, and I would never try to dispute your claims.

My whole point is that these disorders, I believe, are autoimmune...being "set off", or "triggered", by strep, viruses, immunizations....in genetically predisposed individuals. This is something you seem to be in agreement on. My point is trying to indentify these kids so we can TRY to avoid the "triggers" in the first place, which COULD result in avoiding these disorders (celiac, food intolerances, TS, PANDAS, etc.) to begin with.

And what about the infants with Autism? How many of these newborns had the Hep vaccine at birth?(not to mention the many other shots in the first 6 months of life?) Could this have been the "trigger" that set off their metabolic issues that are now helped by gluten/caesin avoidance????

 

 

Quote:

"The exact cause of celiac disease is autoimmune. The development of celiac disease requires a genetically predisposed person who is eating wheat, rye, oats, or barley. Even if these two factors are present, celiac disease may not develop until a "trigger factor" starts the abnormal immune system response."

 

 

Kelly

[Caryn]

Kelly,

whoa!

I apologize if you think this is a personal slight toward you.

It most definitely is not and there is no need to be defensive.

I am absolutely not against the PANDAS diagnosis. I am sorry that my message offended you, put you on the defensive.

I do not suggest that the answer is either gluten intolerance or PANDAS. I think you misread my post.

I simply looked at the quote that you referenced and begged the question--

Does Swedo think that all cases of T.S. are inherently brought on by step bacteria? This is what I think you meant by the quote, is it not? Or what, exactly does Swedo mean here? This is the "bandwagon" that I am not willing to jump on, lock stock and barrel. I am referring to that notion in particular, not the notion that PANDAS doesn't exist. There is a tremendous difference in semantics here.

 

I am not disputing the strep connection at all, just suggesting we look at the bigger picture here.

Why are these kids constantly getting strep? What is breaking down their immune systems on a regular basis leaving them susceptible to constant attacks?

I am not looking for a fight, only pointing out the obvious need in the medical community to look at this from another angle.

Please reread my post with an open mind.

 

 

Quote:

"The exact cause of celiac disease is autoimmune. The development of celiac disease requires a genetically predisposed person who is eating wheat, rye, oats, or barley. Even if these two factors are present, celiac disease may not develop until a "trigger factor" starts the abnormal immune system response."

Yes, I agree with the quote. Now what if there is a genetic predisposition for PANDAS/T.S., tics, whatever you want to call it, that is also tied to another, different gluten intolerant gene for a majority of kids who suffer from this condition? Yes, celiac is autoimmune. Doesn't Swedo think PANDAS is autoimmune? The particular celiac gene my son has is associated with the development of other autoimmune disorders like M.S., Diabetes, etc..... What if his other gene is associated particularly with T.S./ PANDAS, or tics-- whatever you want to call it?

 

Do you understand my point? I am not criticizing those that are treating there kids for PANDAS. I am just merely pointing out that may be a common underlying factor for a large percentage. (Thus my reference to the narcolepsy gene).

 

My DAN doc told me that they were making discoveries that connected autism to Alzheimer's. He said that they now believe it is the same gene only it is getting turned on in childhood rather than old age. He also said it is regressive, meaning that the treatment has to occur quickly or there would be permanent damage to the child's brain development.

 

Not all kids will benefit from diet with terrific cures. Some will need drugs, some will need supplements, some will always have symptoms as we all have kids with varying degrees of affliction. What I am saying, is that if you have a newly diagnosed or recently afflicted child, get the food intolerance testing done and try that first, in the chance that it might work and the child could recover without the use of expensive treatments and ongoing antibiotics. If it doesn't work, then do, by all means go the other route.

 

We thought we had a PANDAS case in the beginning because our son's symptoms were sudden and drastic. That was not the case. I am afraid that many folks here that are new to this might be reading about PANDAS and thinking that their child has it when really they may not. After all, it is a clinical diagnosis and needs to be done by a medical doctor, and second opinions are also important. There are folks reading these posts thinking they may have to fly halfway around the country to get treatment when what they may need to do is just clean out the cupboards and change the menu.

 

It is the cheapest cure, in the long run.

 

Do you understand my point?

 

It doesn't devalue or undermine your experience or knowledge.

[Chemar]

just a gentle reminder that sometimes the written word does not convey the meaning as much as a face to face discussion can and misunderstanding can come from misinterpretation of what another has posted

 

one of the things that makes this board so special is that we have so many and varied experiences and dx, yet a common theme of caring for one another and wanting to share in the hope that someone else can be helped along the way.

 

I dont think we should ever see that as being anti one thing or pro another, but rather just the expression of different experiences, that in the end serve to help us all see a more holistic picture

[P_Mom]

My defensiveness with you, I will admit, started way back when I had mentioned that I found it interesting that your sons symptoms started after his shots. That statement was not a personal slight against you, nor was there a reason to be defensive.....but, somehow, that statement was turned into me "diagnosing your son over the internet." Before that, there were no issues.

 

I posted that quote because I found it interesting, just like my topic said....I can't even begin to tell you "exactly" what Swedo meant by it....that would be presumptuous of me.

 

My kids have never had chronic strep...they have had it only twice...my older son is almost 9.

 

I agree that are many possibilities of different "genes' being involved...my point is that whatever gene is involved....I believe it is an inherited autoimmune problem "triggered" by environmental assault. "What if his othere gene is involved in the development of TS, tics, PANDAS, etc.?" What triggered it? What triggered the celiac gene? Could we avoid those triggers and avoid the disease to begin with? I have read that Alzheimer's is starting to be recognized as an autoimmune disease...makes sense to be tied to Autism. But, what is turning on the gene?

 

I do know this...if I had gone the food route first, before the PANDAS route, I would have definitely run the risk of my kids developing a more serious, chronic condition, not to mention the fact they would have had to deal with their symptoms much longer before the natural waning took place and the antibodies/swelling reduced. For MY kids, the strep connection was as obvious as being hit in the head by a 2x4...antibiotics reduced my sons symptoms by about 95%...going from moderate/severe, to almost nothing...within one day! Symptoms resurfaced even more severely for my older son when exposed, merely exposed, to strep 4 months later, he was not on prophylactic antibiotics at the time. Antibiotics, again, took his symptoms away after one day on them. He went on prophylactic antibiotics after that episode and has not had problems since, regardless of what he eats. The concern is if antibiotics are not started early enough, they can become ineffective and/or permanent damage leading to a chronic condition can occur. Seems like it is possible your sons "celiac gene" was turned on by vaccine, and my son's "PANDAS" was turned on by strep, although I must say that my sons both had symptoms of the disorder much earlier after their vaccines...only to hit the fan after strep, but, the signs were there earlier, so, I believe my sons conditions were most likely primed by vaccine.

 

Newcomers my also feel their child has "food issues" because of posts on this board, and needlessly restrict their child's diet. You see how their are two sides to this coin and it can go both ways? My biggest concern with newcomers regarding PANDAS are the people who post that their child does not have PANDAS based on titer results. I guess a doctor may have said it, or someone for that matter, now it just sticks. However, if you research, you will find PANDAS is diagnosed based on diagnostic criteria, 5 of them, non of which includes titer levels. Also, the specific question of whether their is a test for PANDAS...the answer is NO! So, I get concerned when someone suggests their child does not have PANDAS based on titer levels.

There are also readers on this forum who may be eliminating many healthy foods from their childs diet, getting nervous about anything their child puts into their mouth, when all they need is a simple antibiotic.

 

I do understand your point!!! It is just not relevant in MY case. My kids have had extensive testing.

Let's just agree that this can go both ways...and whichever side of the coin your on will determine how you look at things. You and I are on "opposite sides of the coin." Let's just agree to disagree, while respecting each others view.

That is all I need to say....I am throwing in the flag.

 

Kelly

[Chemar]

may I suggest that if any more personal issues need to be sorted out it gets taken to PM rather than posted to the board please.

 

you are both valued members here, each with a very relevant point of view

[bmom]

I do find this conversation very interesting as I have flipped it inside my head many times trying to find the direction in which to take my sons treatment. If I had all the money in the world, I guess I would have all the testing done. I have looked into the Alcat which I believe runs a little over $800. I am still thinking it over. I have done the elimination diet with no success. My son seems to fall into the PANDAS section more although to be honest, he also seems to have signs of everything from Pyloria, food intolerance, to light sensitivity. Anyway, I once spoke to a doctor who said these kids get hit with an infection or virus or vacination which then sets things into motion and disturbs the digestive process. So, I have always thought which comes first? Kind of the chicken vs. egg scenario. We have had more success with antibiotics so I am taking that route for now and considering food intolerance testing and also milling around IVIG. I am wondering if IVIG would take care of all of these issues- food, infectons, etc. It is expensive, and controversial I understand all of that. Anyway, I am also trying to figure out how to keep my daughter safe from all of this. So, it is great to have these discussions and I find it wonderful that moms are very passionate on this. I just wish the docs could figure out how all these pieces fit together. I know it has to be related. If you look at Autism: the MMR possibly sets things into motion and then the diet helps. So again, there is a trigger. Thanks to all the moms that take the time to post what has helped.

[lurker]

I interpreted the Swedo quote the same way Caryn did. I thought she (Swedo) was taking a huge leap in suggesting all cases may be strep induced. I don't think anyone here would agree with that.

 

I think the inherent danger in Swedo's statement is that people may read it and not look into other strategies. I agree that if a child has PANDAS, he needs to be treated quickly and that limiting his diet may be unnecessary or even cruel; but what if the child has undiagnosed gut problems and you not only fail to treat the problem, but you put him on a course of antibiotics? You have actually worsened the problem. I just feel very strongly that people need to be open to all of their options and size them up according to what was/is going on in their own children. The only way that can happen is if all opinions are represented.

[Toms_Mom]

This is all very interesting to me because we have always gone the diet route and I never considered PANDAS and have not read many of the PANDAS threads. However, looking back I'm wondering if we should have tested for this and why the neurologist did not screen him. When my son first started having symptoms he was 6 1/2 and became obsessive about bad weather and me picking him up on time at school and tennis. Then a month or two later he started having an explosion of tics- head shaking, grimacing, and hand wringing. Now that school year we had strep going through our family 2 or 3 times with my older 3 children. I kept wondering about getting Thomas a strep test, but he never complained of a sore throat or had fever etc. So... we went the feingold diet and IgG testing etc. and he has been doing fairly well with some waxing and waning. After we made the diet changes have not seen any OCD except sometimes gets a little obsessed when he wants us to buy him something- or is that just being spoiled?!

 

Anyway, he recently turned 8 and we decided to check in with his neurologist this week- we went Monday. I mentioned PANDAS- if that was something we should rule out and he said "And what do we do if he has it?" and I said "treat with antibiotics?" and he said "that is controversial - whether it works and everyone has a certain amount of strep in their system-However, if you would like to do it we have all the testing here and we can do it."

 

Could any of you PANDAS moms advice me here? Should I get the strep test? Is there a certain test I need to ask for? Is it too late? Also, besides the sudden problems at 6 1/2 he did have some mild tics when he was 4 or 5 but they were so mild we did not recognize them at the time. Does that maybe suggest its not PANDAS since he did have some very mild habits when younger?

 

 

 

 

Thanks for any input,

Mary

[ilovedogs]

Mary,

I'm in the same boat as you! I don't see dietary changes affecting his tics. They wax and wane whether he's eating a special diet or not. So, I try to keep things healthy but I'm not vigilant when it comes to HFCS or some nitrated turkey from Subway.

My ds started with tics back last November. He has strep in January, went on a 10 day course of amox. and then the OCD started shortly after. The tics were always there during and after the antibiotic. My ds has always been an anxious child and we've had many off and on episodes of separation anxiety, phobias, social anxiety, etc. So, I still wonder if strep could have brought on the OCD or if this was just the natural course of the whole kit and kaboodle we're dealing with!? Maybe I'll just never know or maybe I won't find out until he's 13? I just pray for clarity most days!

Hang in there, you know many of us dealing with the same things!

 

Bonnie

[P_Mom]

Mary,

I am glad members have found the discussion interesting! To answer your questions:

 

The fact that strep was going around your house the same time as your son had increased symptoms would make me highly suspicious of PANDAS.

My sons also started with behaviorial changes before the sudden onset of tics.

There are not any tests to diagnose or rule out PANDAS...it is based on diagnostic criteria. If your child presents with a sudden onset, or worsening of symptoms...and then strep is determined by rapid test, culture, or blood titers...then along with the other diagnostic criteria, if your child meets them..PANDAS can be diagnosed. "They" like to see this pattern with two episodes....we had two episodes. If you check for strep now, via culture or blood, the results are likely to be negative at this point, HOWEVER, it does not hurt to check!!!! At this point, if your son is doing well, I would take a watch and wait approach....I know it is difficult. You can implement diets at this pont to see if it helps. If your son has another sudden increase of symptoms...take him in and get him cultured for strep, if positive, PANDAS is very likely. (titers can't hurt to be drawn) The tricky thing is, some kids have increases with mere exposure to strep, and no culture, blood test, etc., will show strep...even when the increase was due to it. PANDAS is VERY tricky. So, if you get the testing done...take the results with a grain of salt at this point. Also, I can tell you that antibiotics absolutely do work in some cases!

It is very common for PANDAS kids to show no symptoms of strep..the illness goes undetected many times. We would have NEVER known my kids had strep if it weren't for my husband getting it...the doc advised we get our kids tested because he had it. We were not expecting them to BOTH be positive..they showed No symptoms. My younger son had a negative rapid, but, positive culture....always get the culture!!! It does not suggest that your child can't have PANDAS because of the previous mild symptoms....PANDAS is sudden onset OR worsening of symptoms....my kids had mild symptoms too before the sudden increase. Be aware that other viruses/infections can bring about the same response..PITANDS.

 

Hope this helps!

 

Kelly