Do you think more kids are diagnosed with TS or PANDAS?

[Tattoomom]

Do you think children are incorrectly diagnosed with Tourette's when it's really PANDAS or vice versa?

[Chemar]

Hi tatoomom

 

as it is so hard to get many conventional doctors to even acknowledge that PANDAS is a real clinical diagnosis, I think there are likely more kids who are dx with Tourette who in fact have PANDAS

 

there are likely also kids who DO have genetic TS, but also have PANDAS, so I dont think a dual diagnosis is out of the question

 

it would surprise me if it were any more than a tiny minority who are dx with PANDAS incorrectly when in fact they have only TS and not PANDAS

[Tattoomom]

Hi tatoomom

it would surprise me if it were any more than a tiny minority who are dx with PANDAS incorrectly when in fact they have only TS and not PANDAS

 

Really? Because I am in such a confused state right now. I personally think my ds would fall under the TS category more so than PANDAS, however, we have no confirmed family history of TS and his tics did start co-in-siding with an illness (not conformed strep)

 

And I have to wonder.... does it matter if it is PANDAS but chalked up to TS? Is there harm in not finding out for sure and treating it?

[Chemar]

you dont have a PANDAS diagnosis yet, right?

 

leaving TS untreated is something many people do as often the tics are so mild, or not bothersome, and tend to stabilize a lot when people pass those hormonal years. It really depends on how the tics, and especially the possible comorbid disorders are impacting one's life

 

but leaving PANDAS untreated can be very serious from my understanding, as it involves brain inflammation and from what I have gathered, can ramify to more serious issues.

 

dont forget that there are also other reasons for tics apart from TS and PANDAS, and that tics after illness are not necessarily always PANDAS /PITANDS

[Tattoomom]

you dont have a PANDAS diagnosis yet, right?

 

leaving TS untreated is something many people do as often the tics are so mild, or not bothersome, and tend to stabilize a lot when people pass those hormonal years. It really depends on how the tics, and especially the possible comorbid disorders are impacting one's life

 

but leaving PANDAS untreated can be very serious from my understanding, as it involves brain inflammation and from what I have gathered, can ramify to more serious issues.

 

dont forget that there are also other reasons for tics apart from TS and PANDAS, and that tics after illness are not necessarily always PANDAS /PITANDS

 

 

Nope. No diagnosis. I just don't know what to do. We are 3 years into on again and off again ticcing. He was tic free over 6 months and now they're back. I'm just not sure I feel comfortable "assuming" it's TS or transient childhood tics. I feel like we should rule out PANDAS but our Ped. feels we already have with a neg. throat swab and negative ASO and DNASE-B back in 2007.

 

I guess I just worry that it might be PANDAS and we are ignoring it! By we, I mean the doctors!!

 

What are some other reasons for the tics?

[Chemar]

as I mentioned before, the tic remission for 6 mths at his age just isnt usually characteristic of TS, but that doesnt mean it is impossible...just unusual

 

we have had parents here whose kids have tics related to a wide variety of issues ranging from those undefined"transient tics", post vaccination tics, food or environmental allergies, photosensitivity, pyroluria , Lyme Disease, and recently some who feel that TMJ is the cause of the tics. sometimes it is a combination of factors, but we have had parents whose kids have stopped ticcing when they discovered the trigger and treated for it

 

if you have the means it may be worth doing that CAM kinase thing with Dr Cunningham that the PANDAS forum has info on. It isnt yet "scientifically proven" but it seems many have a high regard for the accuracy

[Tattoomom]

but we have had parents whose kids have stopped ticcing when they discovered the trigger and treated for it

 

if you have the means it may be worth doing that CAM kinase thing with Dr Cunningham that the PANDAS forum has info on. It isnt yet "scientifically proven" but it seems many have a high regard for the accuracy

 

 

So, if you find that for instance, gluten causes your child to tic, and you remove it from their diet and the tics stop, what does that mean?! Is it still TS? Or just a symptom of a food allergy? The reason I ask is because we're pretty sure gluten affects our son, at least in some way shape or form. Not sure about dairy but we're going to do an elimination diet with just gluten for now and see how it goes. We've done both gf/cf before and he did extremely well, no tics at all while on the diet, but I'd like to play with it and see if one more than the other helps.

 

I'd love to do that CAM kinase test but someone posted that it's $400!

[Chemar]

yes, for some parents eg Caryn who posts here on occasion, their kids tics have resolved by removing the offending agent, which in her son's case, was gluten. Just because someone has tics, it doesnt mean they have TS, altho sadly doctors often confuse by handing out a TS diagnosis before exploring other possibilities, again sadly because so many conventional docs do not keep up with the info re tics and other triggers, often negating it as "quack stuff".

It is certainly worth trying the elimination diet again as if you see marked improvement that may be the issue for your child

 

I should mention too tho that many kids who have TS ALSO have other issues going on. Although TS appears to be a genetic illness, yet not everyone who has the gene may manifest tics etc....I believe that the genetics gives the predisposition to tic, but something triggers the manifestation. Commonly, it appears that the androgenic/steroid hormones are perhaps that trigger as TS manifests more in boys than girls and seems to also manifest in the pubertal ie hormonal years. But exposure to toxins, allergens, infectious agents, irritants etc can also be that trigger IMHO

 

 

 

I hear ya re the cost of the tests.....if we were starting out on this journey in the position we are now I wouldnt be able to afford the testing I paid for out of pocket for my son. The last I recall seeing tho was that the CAMK test was $200? which is already steep considering one also has to cover the doctor to get the rx for blood draw and then the lab cost for the blood draw. Has she doubled the price now?

[Tattoomom]

I hear ya re the cost of the tests.....if we were starting out on this journey in the position we are now I wouldnt be able to afford the testing I paid for out of pocket for my son. The last I recall seeing tho was that the CAMK test was $200? which is already steep considering one also has to cover the doctor to get the rx for blood draw and then the lab cost for the blood draw. Has she doubled the price now?

 

http://www.latitudes.org/forums/index.php?showtopic=6314

[Tattoomom]

yes, for some parents eg Caryn who posts here on occasion, their kids tics have resolved by removing the offending agent, which in her son's case, was gluten. Just because someone has tics, it doesnt mean they have TS, altho sadly doctors often confuse by handing out a TS diagnosis before exploring other possibilities, again sadly because so many conventional docs do not keep up with the info re tics and other triggers, often negating it as "quack stuff".

It is certainly worth trying the elimination diet again as if you see marked improvement that may be the issue for your child

 

I should mention too tho that many kids who have TS ALSO have other issues going on. Although TS appears to be a genetic illness, yet not everyone who has the gene may manifest tics etc....I believe that the genetics gives the predisposition to tic, but something triggers the manifestation. Commonly, it appears that the androgenic/steroid hormones are perhaps that trigger as TS manifests more in boys than girls and seems to also manifest in the pubertal ie hormonal years. But exposure to toxins, allergens, infectious agents, irritants etc can also be that trigger IMHO

 

 

Well, I definitely think my ds has food issues so that may be contributing. And I cannot tell you how many times I've asked the doctors about the possible connection and gotten the reply "That's all anecdotal, there's never been a study to prove it." Argh....

[Chemar]

I used to be involved with medical research.....I saw first hand how some "scientific studies" get skewed in many directions depending on the vested interest of the researcher

 

I tend to have far more faith in anecdotal reports borne out by the observations of many people seeing the same thing than I do in "scientific evidence".................

[chap]

we are in the same position. 3& 1/2 years of tics- six months tic free.......

at the stage where I dont think it matters what its called!

[MichaelTampa]

Just as an FYI regarding the Cunningham test, it is possible to avoid the costs of a doctor to prescribe and the costs of the blood draw itself. I asked my doctor to prescribe, and while I waited and waited, and saw the year-end close of the study become more and more imminent, I went to a local outpatient clinic where I had endoscopy and colonoscopy a few months before. The people in the blood drawing section did it for me without a prescription and without any charge. When I told them it was a research study to help better distinguish TS and other tic-related diseases (rattled some off), they reacted that this type of thing was really important and wanted to help. I do believe they remembered me from before as well. Anyway, just want to point out, that is a possibility (for some, anyway).

 

Michael