Interesting quote on Inherited TS

[P_Mom]

Speaking of autoimmune disease in general.........check out this site.....it has tons of great info. on autoimmune disease.

 

http://cidpusa.org

[Toms_Mom]

Bonnie,

We are so tired of the diet! It's really impossible to keep all junk out of the house with 3 teenagers. Even if I don't buy it, they will buy it themselves and bring it home. They make an effort to help me, but my son is now really bad about sneaking whatever he can get his hands on. The first year he would refuse anything he knew he wasn't supposed to have, but not anymore! I get sooo frustrated, but I really can't blame him. In school the other kids order lunches which is either

chick filet, moes, pizza hut or quiznos and he has to smell their food everyday. We are definately a lot healthier eating family and I wouldn't go back to pop tarts and doritos but... I really would like to ease up and not have him feel left out when we are eating outside the home- school, parties, sports etc. I am wondering now if his tics are more related to the allergy seasons because fall and spring seem to be the times he tics more and we had a tic free winter last year.

 

Kelly,

 

Thanks so much for your opinions! I know what you mean about not showing classsic strep symptoms because when my older children were younger they NEVER complained of a sore throat! The only way I knew they might have strep was because they would usually get a temp. and feel/act sick and sometimes vomit. I will take your advice and wait for now, but if he has an increase in symptoms I will have him checked. I just wish we would have done this when this all began! He does complain of a sore throat occasionally, but never gets really sick from it. Also, when he was an infant he had the Prevnar vaccine which is supposed to prevent ear infections and strep. Could this be connected in any way? I really regret getting that vaccine now, because it was optional and my dr. recommended it and I had no idea back then of the dangers of multiple vaccines.

 

Thanks,

Mary

[momto2pandas]

Totally agree with you, 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)

[EAMom]

Swedo is not suggesting that all tourettes cases are PANDAS cases. Those that interpret the quote that way are reading too much into it. Swedo has always described PANDAS kids as a small subset of those kids with ocd/tics. What they are saying is that 1 process (ie disease entity or syndrome=PANDAS) can result in many different sets of symptoms (tics, hyperactivity, ocd etc.). She's not saying that PANDAS accounts for all of tourettes cases. (Also, IMO when she is refering to the "strong genetic component" she is in the mode of talking about the subset of kids with PANDAS. )

 

This discussion does beg the question however, how many cases of tourettes would exist if there was no such thing as GABHS. I my mind there are at least 3 groups of tourettes/possible pandas kids.

 

1) clear cut pandas cases: kid is "normal", changes overnight (tics and/or OCD) due to strep infection, child becomes "normal" again after appropriate antibiotics (or possibly IVIG)

 

2) quasi (not clear cut) PANDAS cases: where child has had longer term tics/tourettes/ocd and/or other beh. changes(adhd, etc.) but symptoms worsen with strep infection. Are these kids who had a "baseline change"(brain damage?) due to chronic PANDAS (and would have been "normal" if strep never existed) or are these kids that would have had tourettes (etc.) even if strep didn't exist, but strep happens to be one of many "triggers" that set these kids off.

 

3) clear cut not PANDAS: kids with tourettes where strep is not a trigger (a little tricky to say with 100% certainty since many kids get strep with no symptoms).

 

I would also like to be the devil's advocate re the theory of early childhood vaccines acting as a trigger to make a child suspectible to PANDAS...since that didn't seem to be the case with acute rheumatic fever. There was plenty of ARF before kids started getting so many vaccines. I guess in my heart of hearts I feel that my dd's PANDAS had nothing to do with her previous vaccines. Of course now that she has PANDAS (she is catagory 1...in remission on azithromycin) I am nervous about future vaccines (among other things!)

[EAMom]

Warning to Mary, or anyone else considering PANDAS as a possible cause of their childs symptoms...PLEASE do not let a doc declare your child "does not have PANDAS" based on antibody titers alone. I am constantly amazed that these docs, many of whom do not even bother to run throat cultures, will rule out PANDAS based on the titer numbers alone. (Please refer to Buster's post "A bit about ASO titers" for more technical facts/details!)

 

My (at the time) 7.5-year-old daughter had full blown psychotic PANDAS (tics, anorexia nervosa, OCD, emotional lability, insane behavior, defiance, off the charts anxiety, severe sensory defensiveness) and her titers were normal/low both times they were checked (2 and 3 mo. after initial strep infection). Her titers (ASO and anti-dnaseB ) were "normal" even though her throat culture was positive (and we think had been positive for 2 mo., since she had the FEVER and her beh. changed and other kids in her class were sick with strep).

 

Some kids just don't make a lot of titer, so even when their titers have risen, it's still within "normal" range. Other kids have titers that drops very quickly, so by the time blood is drawn (even just a couple of months after strep infection) the titers are "normal". Other kids have a very low baseline, so even when their titers rise the numbers are still "normal". Take titers with a grain of salt. Just as high titers don't "prove" PANDAS because many entirely normal kids (who have had strep) will have high titers, low titers do not rule it out. Titers do serve the purpose of demonstrating that there has been a strep infection (if your child makes enough of them!) if the child is no longer culturing positive. Titers can be a useful "piece of the puzzle" in diagnosing PANDAS but there are so many other factors to consider such as cultures, symptom pattern, history of strep exposure, response to antibiotics (not all kids respond to antibiotics, mine didn't respond to the first 3), response to steroid burst, etc.