My thoughts on PANDAS and related conditions

[thereishope]

Many doctors don't realize that not everything follows what they have learned in the text books or even in their practices. They need to understand that PANDAS is covering new ground. It is something that does not follow classic definitions or rules. Doctors need to see that they are witnessing new discoveries of the body, brain, and bacteria. As doctors, I wish they would get little excited about being part of it and want to help how the future will diagnosis and treat this disorder. You think that would be something they would be proud of.

[Dr_Rosario_Trifiletti]

Many doctors don't realize that not everything follows what they have learned in the text books or even in their practices. They need to understand that PANDAS is covering new ground. It is something that does not follow classic definitions or rules. Doctors need to see that they are witnessing new discoveries of the body, brain, and bacteria. As doctors, I wish they would get little excited about being part of it and want to help how the future will diagnosis and treat this disorder. You think that would be something they would be proud of.

Vickie,

 

I think you hit an important point. From the vantage point of a doctor who is seeing about 100 PANDAS or PANDAS-like cases a month nowadays, I'm learning a whole lot about this disease very quickly. I'm learning something new every day. This is what makes this fun; playing some part in curing a child in need is also very gratifying and keeps you going.

 

The sad thing is that, although I have tried really hard in academic settings to get med students and colleagues interested in this disease, I haven't been very successful. So at times you feel like a lonely quack. But then another "zithromax miracle cure" comes along and it keeps you going. Awe and wonder at the complexity of the human body and disease. How little we really know.

 

Parents are far more interested in this disease than the doctors. I always bum out when I hear that a parent is told by a doctor that it can't be PANDAS if a throat culture is negative. The parents observations on this board are so much more sophisticated and accurate than 99.99%. You guys are the experts.

 

You learn medicine from patients, not books or papers, but you still have to use the books and papers. Mostly, you have to think - who does this patient in front of me remind me of? Where have I seen this before? How did we get that previous child better? So you creep your way to an optimal protocol.

 

So if we had to make a movie about PANDAS, one story would be parents empowering and educating themselves, using modern technology, to challenge and educate their doctors. In a sense, it's a shame it has to be this way! But in another, doctors should be ever open to be educated by their patients.

 

Dr. T

[Ashlynsmom]

Many doctors don't realize that not everything follows what they have learned in the text books or even in their practices. They need to understand that PANDAS is covering new ground. It is something that does not follow classic definitions or rules. Doctors need to see that they are witnessing new discoveries of the body, brain, and bacteria. As doctors, I wish they would get little excited about being part of it and want to help how the future will diagnosis and treat this disorder. You think that would be something they would be proud of.

Vickie,

 

I think you hit an important point. From the vantage point of a doctor who is seeing about 100 PANDAS or PANDAS-like cases a month nowadays, I'm learning a whole lot about this disease very quickly. I'm learning something new every day. This is what makes this fun; playing some part in curing a child in need is also very gratifying and keeps you going.

 

The sad thing is that, although I have tried really hard in academic settings to get med students and colleagues interested in this disease, I haven't been very successful. So at times you feel like a lonely quack. But then another "zithromax miracle cure" comes along and it keeps you going. Awe and wonder at the complexity of the human body and disease. How little we really know.

 

Parents are far more interested in this disease than the doctors. I always bum out when I hear that a parent is told by a doctor that it can't be PANDAS if a throat culture is negative. The parents observations on this board are so much more sophisticated and accurate than 99.99%. You guys are the experts.

 

You learn medicine from patients, not books or papers, but you still have to use the books and papers. Mostly, you have to think - who does this patient in front of me remind me of? Where have I seen this before? How did we get that previous child better? So you creep your way to an optimal protocol.

 

So if we had to make a movie about PANDAS, one story would be parents empowering and educating themselves, using modern technology, to challenge and educate their doctors. In a sense, it's a shame it has to be this way! But in another, doctors should be ever open to be educated by their patients.

 

Dr. T

 

 

 

Ok Here goes. I read this stuff night after night trying to make sense of it but have never posted. Dr. T please don't ever allow yourself to be second guessed and by all means never stop helping us!! I searched and searched and searched for help for my 11 year old dd and you are certainly our angel.. Without you Ashlyn would have not stopped sneezing two days shy of 13 weeks and that was that continous sneeeze every 2 seconds as long as she was out of her concious sleep!! She had been doing this on and off for 6 months before that. That was a total of 8 months! Just to think of all the doctors visits, medicines, hospital stays, and test she had to have been handed off from one doctor to the next. Even the team of doctors that studied her for a week at Texas Childrens Hospital in Houston could not help her. With your work as well as the other special doctors out there and us pounding doors of doctors I believe one day soon we will convince doctors this is really not something to 'sneeze' at (sorry couldn't help that one ) And to think I work in health care and have access to all kinds of doctors here in Louisiana but still need you every step of the way! Thank you for all you do! If ever my dd story is needed to help others please contact me. I am now a true believer in PANDAS and am educating as many people as I can along our way! You will never know how many people you have educated with Ashlyn alone. How could anyone not be convinced with her story.

[Bat_Sheva_Myllys]

Dear Dr T.

 

I jump onto the wagon as Vickie's message was a follow of my most recent on this thread, in which I complained about the past 5 horrendous years Sandra and we have been going through, I would like to ask if you think that a Zithromax (with or without other treatments) could still take place in her case. CAN WE STILL SAVE SANDRA?

I wrote on list and to you off list and told her story. She had no immunomudulary since December 2007 when all specialists gave up on her (because they would not devote time and attention to study the condition) and had a disastrous episoe with Risperdal. Her current condition is terrible and she is bed-ridden.

Following the new enlightment obtained by the Saving Sammy book our VOLUNTEER and FRIEND GP started her on 500mg Zithromax a day with the intention to go on long time and is helping me fight the system to get other, more sophisticated immunom. therapies if needed, which she cannot herself prescribe or give.

We do not really know how to go on and hope to have some guidance.

 

At the time Dr K thought her age and duration of the condition (starting at 15 and lasting then for 2 years, now 5) were a very negative factor in the prognosis. Do you think we can still save Sandra and what can we use to do that?

 

Bat-Sheva

 

 

 

Many doctors don't realize that not everything follows what they have learned in the text books or even in their practices. They need to understand that PANDAS is covering new ground. It is something that does not follow classic definitions or rules. Doctors need to see that they are witnessing new discoveries of the body, brain, and bacteria. As doctors, I wish they would get little excited about being part of it and want to help how the future will diagnosis and treat this disorder. You think that would be something they would be proud of.

Vickie,

 

I think you hit an important point. From the vantage point of a doctor who is seeing about 100 PANDAS or PANDAS-like cases a month nowadays, I'm learning a whole lot about this disease very quickly. I'm learning something new every day. This is what makes this fun; playing some part in curing a child in need is also very gratifying and keeps you going.

 

The sad thing is that, although I have tried really hard in academic settings to get med students and colleagues interested in this disease, I haven't been very successful. So at times you feel like a lonely quack. But then another "zithromax miracle cure" comes along and it keeps you going. Awe and wonder at the complexity of the human body and disease. How little we really know.

 

Parents are far more interested in this disease than the doctors. I always bum out when I hear that a parent is told by a doctor that it can't be PANDAS if a throat culture is negative. The parents observations on this board are so much more sophisticated and accurate than 99.99%. You guys are the experts.

 

You learn medicine from patients, not books or papers, but you still have to use the books and papers. Mostly, you have to think - who does this patient in front of me remind me of? Where have I seen this before? How did we get that previous child better? So you creep your way to an optimal protocol.

 

So if we had to make a movie about PANDAS, one story would be parents empowering and educating themselves, using modern technology, to challenge and educate their doctors. In a sense, it's a shame it has to be this way! But in another, doctors should be ever open to be educated by their patients.

 

Dr. T

[P_Mom]

Bat-Sheva,

 

I think in order to obtain medical advice for your child with Dr. T, you are going to have to obtain a phone consult. I think he kindly comes on here to share thoughts and opinions, but, personal help will be obtained by making an appointment.......

 

Hope your daughter gets well!

[EAMom]

Hi Bat-sheva,

You definitely should try Azith (ha ha, sorry my advice, not Dr. T.'s)....the problem would be (seeing how you are in Finland) getting someone to rx it. The big question is that if you did do a phone consult with Dr. T, would you be able to get a rx? Or are you and your dd able to travel to the US?

 

Also, have you seen this post by Michael?...Dr. K. thinks he has mycoplasma http://www.latitudes.org/forums/index.php?showtopic=6659 .

[deby]

Happy New Year. What a great writeup and outline. I can't wait to read your new paper. Your paper with Pavone from 2006 was excellent and I love the reference to the Exorcist variant since I think many parents on this forum can relate to what seems like demonic possession.

 

The classification seems good and it might be worth a poll to see where we'd each put our kids. The treatments are really consistent with what many of us have tried.

 

What's been a bit unusual on the forum is that we've seen:

• kids who have ASO/Anti-DNAse B associated with exacerbation (i.e. Swedo classic - ASO/AntiDNAse-B )
  
• kids who seem to react to others in house who have culturable strep (i.e., seems like more an allergic reaction - elevated IgE or Eosinophils)
  
• kids who have non-pharyngeal strep A (e.g., vaginal or skin strep -- no ASO but elevated Anti-DNAse B )
  
• kids who seem to react to non-strep triggers (e.g., viruses, other bacterial infections, ...)
  

In addition, we seem to have two camps of those with primarily tics and those with primarily OCD.

 

All seem to respond to antibiotics or short term prednisone bursts. The exacerbations seem to last 4-6 weeks (i.e., an episode) but if another trigger comes in, they last longer...

 

My wife and I wonder if perhaps this is really a blood-brain barrier problem and all the variants are really just different manifestations of how the BBB gets inflammed -- or how antibodies cross the BBB.

 

It sure seems like the antibodies that are causing CaM Kinase II activation are in the blood stream for some time. Some trigger then opens the BBB and symptoms emerge. I appreciate this is still not proven, but it sure seems to explain things.

 

One of the other symptoms we've seen (don't know if you've seen it) was elevated monocyte counts and elevated CD4/CD8 ratios. This made us wonder if perhaps the immune system is just confused about whether the bacteria is extracellular or intracellular and choosing the wrong type to attack. This would have the same effect of not being able to clear an infection. This seems to us to explain the carrier state, the folks with low IgG, and those with CD4/CD8 imbalance with no ASO rise. Those with carriage aren't clearing the colonization leaving what is essentially a low-grade infection. Those with low IgG aren't clearing the infection leaving a low-grade infection. Those with elevated CD4/CD8 ratios but have an intracellular strain of strep wouldn't clear the infection and wouldn't have the elevated ASO/AntiDNAse B. We wonder if this is the common theme. None of this, of course, changes your recommendations, but it's something we've been wondering if others have seen.

 

I love the "Idiopathic antibiotic-responsive neuropsychiatric disorder" -- and even if that was a "separate syndrome" it sure seems a ridiculously good risk/benefit argument. If it cures kids, try it. If it doesn't, then move on to other stuff. It sure seems less risky that these anti-psych drugs that seem easier to get than a 30 day supply of antibiotics.

 

Anyway, I share the enthusiasm of others on the forum about your outline, post and advice.

 

Best regards and thank you for the post,

 

Buster

 

 

 

Dear Buster,

I read your reply to Dr. T and I saw that you talked about

"kids who seem to react to others in house who have culturable strep (i.e., seems like more an allergic reaction - elevated IgE or Eosinophils)"

 

I am interested to know if this is a common case, since this is exactly our case.

My husband and other non pandas son were tested positive for strep. My pandas son has extremely high titers, elevated Eosinophils, IGe on the upper limit.IGg sub 4 elevated.

Do you know how to interpret this combination of indicators and how to treat this.

My son is on abx (zytromax) for ~40 days. There is some improvement but very far yet to be 100%.

Thank you!

[KaraM]

Does anyone know if Dr. T. published this paper yet?