PANDAS: Link to another tourettes/ocd article

[EAMom]

He says that 80 to 90 percent of those with OCD and Tourette's are strep carriers. "They may not get a sore throat but they can shed the bacterium," he explains. "Something is different about their immune system."

 

http://www.umdnj.edu/umcweb/marketing_and_...fall2005/11.htm

[P_Mom]

Bravo!! What a great read, EAMom! Thanks. That is what I have felt for awhile now....that we are on a verge of a "cure" for these childhood neurological disorders...TS, OCD, etc. I do feel in my heart that TS and PANDAS are the same thing....dr.K has told me that he believes that "TS is PANDAS that does not go away" (and transient tics are PANDAS that does) He also made the comment to us while we were at his office that "it is all strep"....... bipolar, ocd, TS, depression, etc., etc.

There are so many, many factors that develop once set in motion...and the kids vary tremendously on their triggers...food sensitivities develop, allergies, sensory issues, etc.....all which we all see with our kids...whether we claim TS or PANDAS. And different parts of the brain get involved...and different "pathways" get affected.....hence the vast symptom presentation and severities. TS/PANDAS waxes and wanes, I believe, because the immune system waxes and wanes after onset due to strep, viruses (colds etc.), allergies, food issues, etc...whatever sets the immune system off. Then, we all scramble to treat the symptoms of the disorder and avoid triggers, foods, etc., to "manage" the symptoms...when we should, I believe, be treating the cause and "fixing" the immune system. (antibiotics, immune supressive drugs and procudures, etc)

 

I am so encouraged to read the article you posted....I hope to see many more docs get "on board." These children deserve proper treatment.....wouldn't it be great to see TS "cured" with simple antibiotics and immune modulating drugs? Things we have all had in our cupboards?

 

Bravo to dr. K and Dr. Trifiletti (sp?)....we could use more of them!!!!!

 

Kelly

[Chemar]

sorry but I find it very hard to believe "80 to 90 percent of those with OCD and Tourette’s are strep carriers"

 

I feel the same when any docs start attributing everything to vaccines, or diet or.... or...... or.........

 

my son has full blown genetically inherited Tourette spectrum and was evaluated for 6 months at Shands under dr Murphy's care and showed no positive strep cultures or elevated titers. They classified him "not PANDAS" He has never exhibited any strep symptoms and when his brother had strep throat some years before his TS manifest fully, we had him checked too and culture then was also negative

 

now

do I think a microbial involvement could be at the root of things....very possibly. I do feel my son my have a PITANDS component to his health issues.

But I dont believe it is necessarily just strep bacteria ....there are many other microbes that have negative neuro effects

 

there are many factors at play, including genetics and where the strep connection may be a big one, I feel a lot more research is needed before such a claim can be made in such an emphatic way. theories and opinions abound. this is just one of many

[lurker]

I am at a loss for words here. In fact, I cannot find anything to say that will not get me flamed here; so to state it mildly, I will just say that I feel the statement "It is all strep" is a gross exaggeration.

[EAMom]

I don't think Trifiletti necessarilly means that 80-90% of kids with tourettes are carrying strep at any given time...just if they were to get strep, they would "carry" it...their body wouldn't mount a "normal response" and get rid of the strep on it's own in a couple of weeks (without antibiotics)...thus their immune systems behave differently from that of other people.

 

And, I don't think he is saying that 80-90% of tourettes are PANDAS...but what I think he is saying that kids with tourettes and PANDAS kids both have a "different immune response".

 

Nonetheless, I actually would be interested to know where he gets his 80-90% figure from.

 

At least he's a refreshing turnaround from the many Neurologists who claim PANDAS doesn't exist!

 

Yes, tourettes can be inherited. PANDAS (which could look like tourettes) can be inherited as well (plus lots of kids with PANDAS seem to have family members with "different" immune systems...MS, ARF, etc.)

 

Chemar...your son was lucky to have a comprehensive workup to rule out PANDAS. Unfortunately, most kids with tics fall into the hands of Neurologists who won't even run a simple throat culture (because PANDAS doesn't exist--grrrr)! Until the majority of Neurologists/pediatricians start looking for PANDAS we'll never really know how many tourettes cases are actually PANDAS. Also, if a child with chronic tics doesn't get a throat culture until months after symptom onset it's unlikely the culture would still be positve, even if strep was the inciting cause of the onset of tics. Yes, at that point one could run titers, but as Buster so clearly explained, those can be misleading as well.

 

When I told my ped that my dd had tics (this was a few days after I had called her about the sudden onset of behavior changes, not eating, not sleeping, tantrums) I was told that "lots of kids get tics, no big deal." I don't think this is an unusual situation...esp. if the other symptoms are less severe. The parent gets blown off and no throat culture gets done...the gears of chronic "tourettes" are set in motion. In a way, we were lucky that dd's symptoms were so severe...otherwise she might have flown under the radar and we might have never figured out what was going on. (We were also "lucky" that she cultured positive 2 mo. after the strep infection since her titers were so low.)

 

P.Mom...Dr. K sounds a bit radical...makes me like the guy all the more! It could be that he is doing IVIG on tourettes kids that aren't actually PANDAS but it helps them b/c it "fixes" something else that is abnormal with their immune system?

 

It sure is fun to stir things up around here!

[bmom]

I have thought that too as IVIG can actually cure allergies. So, even if tics were not based on strep, but allergies, could it help as well? It is the digestive process I am looking into. The things I am finding is that it can help with digestion, but this is not for sure yet.

[P_Mom]

Just quoting dr.k..........those were the exact words he used..........it is HIS personal, professional opinion...I guess he is entitled to that.

[lurker]

Kelly,

 

The neurologists that tell you that PANDAS does not exist are entitled to their personal/professional opinions too, but you find those offensive; don't you? No one here disputes that your child/children have PANDAS. Please respect the rest of us by not diagnosing our children with it.

[P_Mom]

Very good point about taking offense to one point but not the other. Really, it was a good point and I can see where you were coming from. Yes, you are right..they are both entitled to their opinions.

 

However, again, I see no posts of mine where I made a diagnosis and told someone their child HAD PANDAS. I was posting a belief and quote made by dr.K!

[Chemar]

I am at a loss for words here. In fact, I cannot find anything to say that will not get me flamed here; so to state it mildly, I will just say that I feel the statement "It is all strep" is a gross exaggeration.

 

I sure hope everyone remembers that I do not hesitate to step in when any form of flaming occurs. I feel this board's strength has always been the mutual respect shown by our members along with the understanding that there is not one answer here. The Forum is for anything related to tics and over the years we have had some very interesting discussions that have sure revealed just how many different issues there are that can cause tics and how treating those issues can often resolve the tics

 

I am sure Dr K is an excellent doctor and I am glad he is so very helpful to those with PANDAS

but it really has to be remembered that this is a board where we have members who represent either themselves or family members with a very wide range of diagnoses and causes for the tics.

 

It most definitely is not "all strep" here ...... just like it isnt all "tourette syndrome" or "vaccines" or "dietary allergies" or any one thing. It becomes very frustrating for those who know they are dealing with other issues when the PANDAS dx is injected into almost every discussion, as has been happening lately.

 

I am really thankful that we can offer a place with so much info for PANDAS parents. But this place is home to others too and so we all need to be able to get along and respect that fact

[lurker]

I really don't know what to say. I sincerely appreciate your last post, and I don't want to antagonize you, but I really did extrapolate from your post (two "bravo's," one "that is what I have felt for a while now," and an "I do feel in my heart that TS and PANDAS are the same thing") that you thoroughly endorsed Dr. K's opinion. Which leaves no logical conclusion except that all cases are PANDAS. Which is fine, I suppose. You are entitled to your opinion, and I am entitled to take exception/offense to it.

 

Ironically, we really aren't that far off. If I had to state my personal belief, I would say it is all immunomodulated. My son had a tic explosion three days after a DTaP shot. Clearly it involved his immune system. I found this site, and within seven days I had the pediatrician run a rapid strep test, a culture, and the ASO and anti-Dnase titers. All were negative. I cannot accept that strep A had any part in triggering that episode.

 

Having said that, now that my son's tic explosion has waned and his symptoms are only rarely and slightly present, I think it is time for me to leave the nest. I really appreciate all the wonderful advice and support I got here. I wish nothing but the best for all of you and your children.

 

Thank you

[Chemar]

((((((((Tami)))))))))))

 

you are way too valuable a member here to lose you.

I am hoping you and PMom can maybe just agree to disagree

 

just remember, there are people who find hope when we share what we have experienced and what you have to contribute is so valuable

 

i always remember that if just ONE child can be helped by me sharing what we have been thru...........

 

deep breath and maybe rethink....the nest wouldnt be the same without ya

[P_Mom]

I really have no issues here........ I was posting under a PANDAS thread that was started by EAMom, who is also clearly a strong PANDAS advocate. I would think the strep connection would be expected to be discussed.

 

Tami...I am sorry if my beliefs offend you.

I respect your opinion which you are 100% entitled to, whatever that opinion may be.

[Chemar]

the statements were kinda emphatic P.Mom and dismissive of any other point of view, and so I can see why feathers have been ruffled.

i have heard from more than one person upset by this

 

however, once again all I can do is ask that everyone respect the fact that we have a forum made up of people with many and varied diagnoses with only tics as the common denominator.

We just need everyone to be careful about trying to negate the diagnoses that others have or to insist that they must fall into one category. It does tend to get people upset when they have been through extensive testing with reputable physicians and know their own children's medical history.

I know that wasnt the intention as such. But it can come across that way.

 

 

anyways, I hope all will maybe reflect on this and try to remember that we all come to this place via very different paths and where they cross each other and we can help each other that is a blessing, but we cant presume that our path is the only one that leads the right way. That is IMO what has gone wrong in so much of conventional medicine and is after all what has brought many of us here in the first place.

 

with much care and respect for all of you

[Indigo]

It's wonderful to see another doctor talking about and recognizing PANDAS! I wonder why he doesn't talk about IVIG as treatment.