New to Pandas

[kcdc3]

Please forgive me if this info is already posted, but we have been struggling with a possible PANDAS diagnosis for several months now. Can someone please tell me - what is the absolute standard for measuring a PANDAS diagnosis? Does my child absolutely HAVE to have elevated AntiBNase Titers and/or a positive throat culture?

[dcmom]

Hi, welcome, and I am sorry you are struggling with pandas. There are many helpful parents on this board, that I am sure will respond to your post.

 

I can tell you what I know.

 

There, unfortunately, is no standard test to determine pandas. Titers definately do not give you the answer, they have no relation to pandas, actually. Strep titers are done to indicate if there has been a strep infection in the past. They are high in some, and low in other pandas patients.

 

Pandas is really a clinical diagnosis. It is based on a child's symptoms, typically looking at a sudden onset of psychiatric and physical issues. These are not limited to, but include: urinary frequency, bedwetting, tics, choreatic movements, ocd, sensory issues, rages, restrictive eating and/or anorexia, anxiety and separation anxiety. In a simple, straightforward pandas case (like my child), there is a sudden onset, with gradual worsening of some (not all) of these issues, coupled with a strep infection at some point. Unfortunately, there are many cases where the onset is slower, less "overnight", and where there is not a documented case of strep. Many/most of our kids manifest strep without the typical sore throat, fever, etc. I think what happens is, at some point they have strep- but that infection may resolve before they are tested, or it is missed with the swab.

 

That is the bad news. Here is the good news:

 

To really figure out what is going on there are some simple things you can do. First (the hardest), is find a decent doctor who will work with you. Tell us where you live... Second, get your child on daily dose antibiotics for at least a month. Many of us on the forum prefer zithromax. This is the only med that will get to the strep if it has gone intracellular. It is very important to completely eradicate the infection. Third, you can give your child a steroid burst (2 weeks of treatment, 2 weeks of tapering off). This will address the brain inflammation. It can be a great diagnostic tool for some, and for others it can jumpstart healing.

 

The last thing, is to have a blood test done by Dr Madeleine Cunningham. She is a researching Dr who has developed a test for anti neuronal antibodies. You can email her for a kit, have blood drawn locally, and send it to her. This should be done in an exacerbation, before steroids.

 

I know it is hard, but the faster you get all of this done, the faster your child can heal.

 

Oh- and please share your story....

[kcdc3]

My story- well it spans a period of 4 years, so I'll try to make it brief ..... My dd - now 10, started showing signs of OCD in 1st grade after an episode of a very bad sore throat. I did not piece these pieces together until recently. I pulled her medical records and was astonished to see that the onset of this bizarre behavior started around the time of this sore throat incident. The ped. was so sure it was strep that he administered antibiotics despite a negative throat culture being sure that it was going to culture positive overnight. It never did culture positive - therein lies my struggle with getting a Dr. to diagnose this. She has been bedwetting consistently overnight - every night. She has never been potty trained at night. She has been clinically diagnosed (last year) with OCD. Her OCD symptoms started in 1st grade and waxed and waned to the point that we did not get them checked out -thought they were stages in development as they were not too severe. Just last year her OCD became debilitating and we had to go to psych. to have her seen and diagnosed. She has an extreme sensitivity to her pants and how they touch her stomach. She has been diagnosed with "borderline ADHD" due to some focusing issues and impulsivity. She was put on SSRI's which did absolutely NO good - they made her WORSE. She failed the 4th grade and is having to repeat it this year because of the OCD. She has developed Tics - she grunts and performs movements with her wrists that I'm not sure she is always aware that she is doing. She has frequent rages - one of which I got on videotape just yesterday. When she is in a rage, she speaks without any coherence. She is afraid of getting fat and is experiencing some food obsessions. She has only had one instance of separation anxiety that I remember last year and it lasted for several weeks. She currently is afraid of the dark and has to have the light on to go to sleep. Her psyh. totally dismissed PANDAS. I took her to her ped. who believes that PANDAS exists but will not treat her without something concrete, such as a positive strep blood test or throat culture. She did go to him a couple of months ago and she DID test positive for strep. He was able to give her a 30 day course of Amoxicillan, which helped for about 3 or 4 days -all symptoms gone, but then it returned, although less in severity. Right now, we mainly experience rages, bedwetting, tics, movements, sensitivity and some OCD. Not as bad, but still there. I live in the Raleigh /Durham triangle area of N.C. - any help would be appreciated!!!! I feel like no one is listening!!!!

 

 

 

 

 

 

Hi, welcome, and I am sorry you are struggling with pandas. There are many helpful parents on this board, that I am sure will respond to your post.

 

I can tell you what I know.

 

There, unfortunately, is no standard test to determine pandas. Titers definately do not give you the answer, they have no relation to pandas, actually. Strep titers are done to indicate if there has been a strep infection in the past. They are high in some, and low in other pandas patients.

 

Pandas is really a clinical diagnosis. It is based on a child's symptoms, typically looking at a sudden onset of psychiatric and physical issues. These are not limited to, but include: urinary frequency, bedwetting, tics, choreatic movements, ocd, sensory issues, rages, restrictive eating and/or anorexia, anxiety and separation anxiety. In a simple, straightforward pandas case (like my child), there is a sudden onset, with gradual worsening of some (not all) of these issues, coupled with a strep infection at some point. Unfortunately, there are many cases where the onset is slower, less "overnight", and where there is not a documented case of strep. Many/most of our kids manifest strep without the typical sore throat, fever, etc. I think what happens is, at some point they have strep- but that infection may resolve before they are tested, or it is missed with the swab.

 

That is the bad news. Here is the good news:

 

To really figure out what is going on there are some simple things you can do. First (the hardest), is find a decent doctor who will work with you. Tell us where you live... Second, get your child on daily dose antibiotics for at least a month. Many of us on the forum prefer zithromax. This is the only med that will get to the strep if it has gone intracellular. It is very important to completely eradicate the infection. Third, you can give your child a steroid burst (2 weeks of treatment, 2 weeks of tapering off). This will address the brain inflammation. It can be a great diagnostic tool for some, and for others it can jumpstart healing.

 

The last thing, is to have a blood test done by Dr Madeleine Cunningham. She is a researching Dr who has developed a test for anti neuronal antibodies. You can email her for a kit, have blood drawn locally, and send it to her. This should be done in an exacerbation, before steroids.

 

I know it is hard, but the faster you get all of this done, the faster your child can heal.

 

Oh- and please share your story....

[dcmom]

I am so sorry.

 

I can tell you that, to me, it seems 5 or 6 is a huge time of onset for these kids.

 

My daughter had a ton of clothing issues. It got to the point where she would only wear pajamas to school. She wet the bed at night. She also restricted her eating. Many similairities to your daughter.

 

There are a few other parents on this board from NC- maybe they can help you with doctors. You may (if it is at all possible) end up coming to DC to see Dr Latimer. She definately likes the Cunningham test, so my advice would be to get that done immediately. If you email them today for a kit, you could get a blood draw early next week from a local lab or doc, and have the results a couple of weeks after that.

 

In the meantime, maybe someone can recommend a local doc to get you started on antibiotics....

[sf_mom]

I would recommend getting a phone consultation to speak with Dr. Kovacevic or Latimer this week while pursuing Cunningham's test and long term antibiotics. You daughter appears to have all the clinical presentations of PANDAS and should be considering IVIG treatment or PEX to rid her completely of underlying infection and swelling in the brain. I wouldn't waste anymore time with Dr.'s that aren't familiar PANDAS due to your daughters age. For some reason, the older they get the more treatment resistant they become.

 

By the way, my son is 5 1/2 and his ASO titers were only 244 and anti-DNase-B negative. I'm not sure if he would have tested positive for strep at time of illness: June 24th but it sure looked like strep. I do know he got drastically better after antibiotics, every time he went off antibiotics he got worse, he was about 95% better after about 35 days of straight of antibiotics and just complete IVIG 5 days ago. He is a different kid then he's probably been in a year and 1/2.

 

Good Luck, Wendy

[ShaesMom]

Please forgive me if this info is already posted, but we have been struggling with a possible PANDAS diagnosis for several months now. Can someone please tell me - what is the absolute standard for measuring a PANDAS diagnosis? Does my child absolutely HAVE to have elevated AntiBNase Titers and/or a positive throat culture?

 

My dd did not have a positive throat culture but her ASO titers were off the charts-1200.

 

I have to put my two cents in and recommend that you have an immunological workup done on your child as well. Many of our kids are coming back deficient in some of the Ig subclasses and failing what is called the Pneumococcal Titers test which means they have an underlying immune deficiency disease. This dx is recognized by insurance and IVIG would likely be paid for by the insurance company. Same advice to Allie if she is reading this.

 

Sam

[ShaesMom]

Please forgive me if this info is already posted, but we have been struggling with a possible PANDAS diagnosis for several months now. Can someone please tell me - what is the absolute standard for measuring a PANDAS diagnosis? Does my child absolutely HAVE to have elevated AntiBNase Titers and/or a positive throat culture?

 

My dd did not have a positive throat culture but her ASO titers were off the charts-1200.

 

I have to put my two cents in and recommend that you have an immunological workup done on your child as well. Many of our kids are coming back deficient in some of the Ig subclasses and failing what is called the Pneumococcal Titers test which means they have an underlying immune deficiency disease. This dx is recognized by insurance and IVIG would likely be paid for by the insurance company. Same advice to Allie if she is reading this.

 

Sam

 

Sorry-same advice to Addi if she is reading!

[kcdc3]

If I order the kit and have the test done - do they send the results to me? What should I be looking for? I guess my main question is what is the test looking for? Also - is there any way to tell if there is swelling in the brain by using an MRI or CT scan to definitely confirm a diagnosis??

 

 

 

I am so sorry.

 

I can tell you that, to me, it seems 5 or 6 is a huge time of onset for these kids.

 

My daughter had a ton of clothing issues. It got to the point where she would only wear pajamas to school. She wet the bed at night. She also restricted her eating. Many similairities to your daughter.

 

There are a few other parents on this board from NC- maybe they can help you with doctors. You may (if it is at all possible) end up coming to DC to see Dr Latimer. She definately likes the Cunningham test, so my advice would be to get that done immediately. If you email them today for a kit, you could get a blood draw early next week from a local lab or doc, and have the results a couple of weeks after that.

 

In the meantime, maybe someone can recommend a local doc to get you started on antibiotics....

[dcmom]

If I order the kit and have the test done - do they send the results to me? What should I be looking for? I guess my main question is what is the test looking for? Also - is there any way to tell if there is swelling in the brain by using an MRI or CT scan to definitely confirm a diagnosis??

 

 

 

Contact Madeliene Cunningham, and she will quickly ship you a test kit. It has some instructions. You will need to have blood drawn, spun on a centrifuge to seperate the serum, and then overnight it back to her in the box, with the ice pack, that she sends to you. Ask your pediatricians office where you might get the blood draw done, and that it is for a university study. They ask for a $200 donation to cover the supplies and shipping. Madeleine and her associates are wonderful to deal with.

 

The test looks for elevated anti-neuronal antibodies.

 

It takes a few weeks to get the results. They will email them to you, and send you a copy (along with corresponding research papers). The papers will show if your child is in the pandas range. This, along with the clinical picture, will be enough for doctors who believe in pandas.

 

Typically it is not suggested to do MRI or CT scan, as they frequently cannot pick up the inflammation.

[ajcire]

Is this test only effective only prior to being on antibiotics? Do you need to wait until you are seeing symptoms but before you treat to do it?

 

 

 

If I order the kit and have the test done - do they send the results to me? What should I be looking for? I guess my main question is what is the test looking for? Also - is there any way to tell if there is swelling in the brain by using an MRI or CT scan to definitely confirm a diagnosis??

 

 

 

Contact Madeliene Cunningham, and she will quickly ship you a test kit. It has some instructions. You will need to have blood drawn, spun on a centrifuge to seperate the serum, and then overnight it back to her in the box, with the ice pack, that she sends to you. Ask your pediatricians office where you might get the blood draw done, and that it is for a university study. They ask for a $200 donation to cover the supplies and shipping. Madeleine and her associates are wonderful to deal with.

 

The test looks for elevated anti-neuronal antibodies.

 

It takes a few weeks to get the results. They will email them to you, and send you a copy (along with corresponding research papers). The papers will show if your child is in the pandas range. This, along with the clinical picture, will be enough for doctors who believe in pandas.

 

Typically it is not suggested to do MRI or CT scan, as they frequently cannot pick up the inflammation.

[ShaesMom]

If I order the kit and have the test done - do they send the results to me? What should I be looking for? I guess my main question is what is the test looking for? Also - is there any way to tell if there is swelling in the brain by using an MRI or CT scan to definitely confirm a diagnosis??

 

 

 

 

 

We had an MRI done and it came back normal.

[peglem]

My understanding of the Cunningham test:

 

It tests for 3 particular strep antibodies(not ASO or AntiDnase- which are actually antibodies against strep exotoxins, not the bacteria itself) that they believe are "cross reacting" with brain cells. They test for some other anti neuronal antibodies as well. But the crux of the test is they measure the reaction of brain tissue to the serum from your child.

 

Inside of the neurons is a substance called calcium/calmodulin KinaseII (CamKII). This stuff is a kind of catalyst for neurotransmitters-the signalling doesn't happen w/out it. But, what they measure is how active the CamKII becomes when exposed PANDAS/SC serum...specifically how much MORE active it is as compared to normal.

 

Its this overactivation of CamKII, stimulated by the antibodies they test for, that results in the behavioral symptoms we see in PANDAS.

 

Does that make sense?

[Kayanne]

My understanding of the Cunningham test:

 

It tests for 3 particular strep antibodies(not ASO or AntiDnase- which are actually antibodies against strep exotoxins, not the bacteria itself) that they believe are "cross reacting" with brain cells. They test for some other anti neuronal antibodies as well. But the crux of the test is they measure the reaction of brain tissue to the serum from your child.

 

Inside of the neurons is a substance called calcium/calmodulin KinaseII (CamKII). This stuff is a kind of catalyst for neurotransmitters-the signalling doesn't happen w/out it. But, what they measure is how active the CamKII becomes when exposed PANDAS/SC serum...specifically how much MORE active it is as compared to normal.

 

Its this overactivation of CamKII, stimulated by the antibodies they test for, that results in the behavioral symptoms we see in PANDAS.

 

Does that make sense?

 

Great explaination...I think I understand it now!

[Megs_Mom]

I think you will also need an ERP therapist (have you done that yet?) - Exposure & Ritual Prevention. You are so lucky - Duke is so close to you - call PCAAD at (919) 416-2447. They are wonderful.

 

Also, there is a woman at Chapel Hill that treats PANDAS - Chapel Hill

Eliana Perrin, MD Professor of Pediatricis Chapell Hill (did some of the origional work with Swedo)

[pixiesmommy]

Just wanted to say Hello. I am no longer in NC, but from there originally (there are so many of us, I started a thread about a common link being a possibility!)

 

Have you read _Saving Sammy_ ? It was just released a few days ago and there is a great part where the dr tells her that her son only meets 2 of the 5 criteria for PANDAS but that that criteria is only created to have a framework for diagnostics while things are being researched. SO that means if he does not meet all the "markers" then he still may have PANDAS.

 

We are seeing Dr Kovacevic near Chicago and he is fantastic. His website is www.webpediatrics.com and I understand he does free email consults.

 

Hugs,

Manda