How Can they diagnose PiTANDS?

[pastacey]

I am new and having trouble understanding my son's troubles. He changed dramatically six years ago after viral infection, possible strep too, and exposures to toxins. He became emotionally labile, had rages, ticks, impulsivity, loss of focus/concentration. Now he has good days and bad days, good moments and bad moments. I never feel sophisticated enough to understand why. He is so responsive to everything -- foods, chemicals, moods -- how can you parse out if it is strep related, viral related, or just autoimmune?? Is this something a specialist could figure out?

 

Thanks,

Patti

[CSP]

Hello Patti,

 

I'm kind-of in the same boat as you right now. My son is 16yo and has a dx of Tourettes. I have been wondering about the PITANDS for awhile now and right now he is on a trial abx to see if he does well. (less ticcing)

 

My son exploded with vocal tics after 2 vaccines 4 years ago, and that is what I'm looking into. We do have a history of TS in the family so I have that to wonder about also.

 

I'll let some of the other moms help with your question, as I'm also wondering myself.

 

Welcome to the forum,

CP

[Phasmid]

Hi,

 

While you can get a huge amount of information from all the parents on this forum, don't waste any time in getting an appointment with a specialist. Act now, read later. There is a list somewhere on this forum of PANDAS/PITAND experts. Get an appointment asap. Two of the top guys are Dr. Kovacevic, and Dr. Trifiletti. There are others. Go to the doc list for someone nearest you.

[thereishope]

Welcome. Perhaps this flowchart will help you figure out some steps you can take in figuring out what is going on ...

 

PANDAS Flowchart

http://www.latitudes.org/forums/index.php?...ic=6688&hl=

 

 

There are only a handful of doctors that parents feel are specialists...

Dr B - Dr Bouboulis

Dr K - Dr. Kovacevic

Dr L - Dr Latimer

Dr T - Dr Triffileti

 

Here is a list of doctor that people on this forum have added to. The doctors listed in this list are not all specialists, but they have helped someone on here. The contact info for the doctors previously stated can be found on that list too...

 

Doctors by State

http://www.latitudes.org/forums/index.php?showtopic=6428

[Stephanie2]

This is how my sons' doc describes it. He says that the "activating" microbe is usually strep. Once the child exhibits pandas from a strep infection then the next exacerbation and all other exacerbations can be from anything that affects the immune system (allergies, viruses, bacteria, even sunburn!!). So if you had sudden onset of symptoms then you should definitely consider pandas/pitands and assume that he either has a chronic strep infection that he is not fully getting rid of or he is reacting to all immune stimulating things in his environment, at which point it is hard to pinpoint the waxing and waning nature of the disease anymore. When it progresses to that point, most ppl have to resort to things that bring down inflammation or modulate the immune system (ibuprofen, IVIG, etc... we are currently using spironolactone).

 

Stephanie

 

I am new and having trouble understanding my son's troubles. He changed dramatically six years ago after viral infection, possible strep too, and exposures to toxins. He became emotionally labile, had rages, ticks, impulsivity, loss of focus/concentration. Now he has good days and bad days, good moments and bad moments. I never feel sophisticated enough to understand why. He is so responsive to everything -- foods, chemicals, moods -- how can you parse out if it is strep related, viral related, or just autoimmune?? Is this something a specialist could figure out?

 

Thanks,

Patti

[kimballot]

I am new and having trouble understanding my son's troubles. He changed dramatically six years ago after viral infection, possible strep too, and exposures to toxins. He became emotionally labile, had rages, ticks, impulsivity, loss of focus/concentration. Now he has good days and bad days, good moments and bad moments. I never feel sophisticated enough to understand why. He is so responsive to everything -- foods, chemicals, moods -- how can you parse out if it is strep related, viral related, or just autoimmune?? Is this something a specialist could figure out?

 

Thanks,

Patti

 

I agree with the information posted thus far and I found the flow chart helpful (once I figured it out).

 

My son (13) was recently diagnosed with PITAND and I can tell you about our journey. We started with a phone consult with Dr. T, who had us get all of my son's medical records and put them into an excel spreadsheet that he sent us. That was one of the most beneficial things we did because it really showed my son's history of behavior problems that resolved with antibiotics. Dr. T also ordered a series of blood tests. All of these blood tests had been done before - but the most recent was about 4 years ago and they were negative for everything. This time, the blood tests were very helpful in finding, among other things, a history of micoplasma infection that was never identified, and current elevation in anti DNASE b titers. Dr. T did a lengthy phone consult with my husband and I and really educated us on what was happening and how my son's history led to PITAND.

 

My son also had mild immune deficiencies that were new. Because of the immune issues and because he was currently fighting a sinus infection, we sought the help of Dr. B, who is currently treating my son. Dr. B also diagnosed PITAND along with immune deficiencies and has ordered several more tests to look for auto antibodies (I believe that is what we are looking for!).

 

In addition, we enrolled in Dr. Cunningham's study. The study is not funded right now (that is what we are trying to get funded with pepsi refresh Project PANDAS)- so we reimbursed her for the test. My son's blood serum came back in the PANDAS range.

 

I don't know if that is helpful - but that is the path we recently took.

[Fixit]

This is how my sons' doc describes it. He says that the "activating" microbe is usually strep. Once the child exhibits pandas from a strep infection then the next exacerbation and all other exacerbations can be from anything that affects the immune system (allergies, viruses, bacteria, even sunburn!!). So if you had sudden onset of symptoms then you should definitely consider pandas/pitands and assume that he either has a chronic strep infection that he is not fully getting rid of or he is reacting to all immune stimulating things in his environment, at which point it is hard to pinpoint the waxing and waning nature of the disease anymore. When it progresses to that point, most ppl have to resort to things that bring down inflammation or modulate the immune system (ibuprofen, IVIG, etc... we are currently using spironolactone).

 

Stephanie

 

Well done Stephanie!!!!!!!

[Chemar]

From my understanding, the initial infectious trigger does not *have* to be strep to initiate PITAND ie a PITAND child isnt necessarily also a PANDAS child tho all PANDAS kids are also PITAND (if that makes sense)

[thereishope]

It makes sense to me. But I also speak a little PANDAS.

 

 

From my understanding, the initial infectious trigger does not *have* to be strep to initiate PITAND ie a PITAND child isnt necessarily also a PANDAS child tho all PANDAS kids are also PITAND (if that makes sense)

[Fixit]

would you call it pitpanese...

[pastacey]

THANKS! Did you ever use antibiotics? What decided spironolactone?

 

 

This is how my sons' doc describes it. He says that the "activating" microbe is usually strep. Once the child exhibits pandas from a strep infection then the next exacerbation and all other exacerbations can be from anything that affects the immune system (allergies, viruses, bacteria, even sunburn!!). So if you had sudden onset of symptoms then you should definitely consider pandas/pitands and assume that he either has a chronic strep infection that he is not fully getting rid of or he is reacting to all immune stimulating things in his environment, at which point it is hard to pinpoint the waxing and waning nature of the disease anymore. When it progresses to that point, most ppl have to resort to things that bring down inflammation or modulate the immune system (ibuprofen, IVIG, etc... we are currently using spironolactone).

 

Stephanie

 

I am new and having trouble understanding my son's troubles. He changed dramatically six years ago after viral infection, possible strep too, and exposures to toxins. He became emotionally labile, had rages, ticks, impulsivity, loss of focus/concentration. Now he has good days and bad days, good moments and bad moments. I never feel sophisticated enough to understand why. He is so responsive to everything -- foods, chemicals, moods -- how can you parse out if it is strep related, viral related, or just autoimmune?? Is this something a specialist could figure out?

 

Thanks,

Patti

[EAMom]

Great explanation Stephanie...the only thing I would add is that once kids start to react to other immune stimulating things in the environment/allergies/non-strep illnesses, you need to bring down inflammation/modulate the immune systerm in addition to treating and preventing strep infections.

 

This is how my sons' doc describes it. He says that the "activating" microbe is usually strep. Once the child exhibits pandas from a strep infection then the next exacerbation and all other exacerbations can be from anything that affects the immune system (allergies, viruses, bacteria, even sunburn!!). So if you had sudden onset of symptoms then you should definitely consider pandas/pitands and assume that he either has a chronic strep infection that he is not fully getting rid of or he is reacting to all immune stimulating things in his environment, at which point it is hard to pinpoint the waxing and waning nature of the disease anymore. When it progresses to that point, most ppl have to resort to things that bring down inflammation or modulate the immune system (ibuprofen, IVIG, etc... we are currently using spironolactone).

 

Stephanie

 

I am new and having trouble understanding my son's troubles. He changed dramatically six years ago after viral infection, possible strep too, and exposures to toxins. He became emotionally labile, had rages, ticks, impulsivity, loss of focus/concentration. Now he has good days and bad days, good moments and bad moments. I never feel sophisticated enough to understand why. He is so responsive to everything -- foods, chemicals, moods -- how can you parse out if it is strep related, viral related, or just autoimmune?? Is this something a specialist could figure out?

 

Thanks,

Patti

Edited May 4, 2010 by EAMom

[EAMom]

From my understanding, the initial infectious trigger does not *have* to be strep to initiate PITAND ie a PITAND child isnt necessarily also a PANDAS child tho all PANDAS kids are also PITAND (if that makes sense)

 

Although one tricky thing to consider is that many strep infections are undiagnosed (esp. if the child doesn't get typical symptoms, or the doc doesn't bother to culture and the illness is presumed viral, or the strep is in the sinuses where culture is difficult)...so you might think your kid didn't have an initial triggering strep infection, but that might not actually be the case.

 

To make matters more confusing, many times the first very PANDAS exacerbation is undiagnosed/flies under the wire so to speak...is written off a a normal childhood phase/anxiety/quirkiness. So here you have a possibly undiagnosed strep with possibly undiagnosed anxiety/ocd/urinary stuff/moodiness/ etc. ....the wheels of PANDAS are set in motion and nobody is the wiser.

Edited May 4, 2010 by EAMom

[Chemar]

my understanding from what I was told by dr Murphy was that there would still be at least some evidence of antibodies to strep even if a strep infection had never been "noticed". ie even if the antibody levels were not raised, there would nevertheless be some antibodies if strep had ever been in the persons body

[EAMom]

my understanding from what I was told by dr Murphy was that there would still be at least some evidence of antibodies to strep even if a strep infection had never been "noticed". ie even if the antibody levels were not raised, there would nevertheless be some antibodies if strep had ever been in the persons body

 

But "some" antibodies could still be fall in the "normal" or "low" range. Lots of PANDAS kids have low, or even undectable, ASO/anti-dnse b anti-bodies, even in the face of severe PANDAS symptoms and/or positive cultures...mine certainly did. I also suspect (but of course don't know for a fact) that Dr. Murphy may have changed her thinking on the significance of strep anti-bodies....it seems many of the good PANDAS docs continue to change and adapt their understanding of PANDAS and appropriate treatments. It's a learning curve for everyone!

 

For us, strep anti-bodies have never correlated with positive cultures, symptom exacerbations, or even significantly elevated CaM kinase ll. Also, remember that ASO/anti-dnase b , while being commonly measured, are NOT the actual anti-bodies responsible for PANDAS symptoms.

Edited May 5, 2010 by EAMom