A draft of a flow chart on PANDAS

[Buster]

I thought I'd try to capture the steps folks have been taking in trying to diagnose PANDAS. Please check it over...

 

Probably folks have lots of suggestions to improve, but thought this was a good start

 

EDITED **

Modified : http://pandasdad.home.comcast.net/pandas_diag2.pdf

 

Buster

 

NOTE: This is not intended to be medical advice, but more a documentation of the steps that many of the patients discussed on this forum have followed...

 

[dcmom]

Buster- followed our path and it worked out really well. My only thought is possibly the initial box should be expanded. I had no experience with ocd- some of the behavoirs can appear to be other things until you really break them down. Possible add something more eloquent, but the idea of sudden onset of uncharacteristic issues that could include: sensory, adhd, temper tantrums, emotional lability, restrictive eating. Depending on what you are proposing this chart for- I wouldn't want someone to be turned away because their child doesn't have the "handwashing" type issues that many think of as ocd.

[Buster]

Buster- followed our path and it worked out really well. My only thought is possibly the initial box should be expanded. I had no experience with ocd- some of the behavoirs can appear to be other things until you really break them down. Possible add something more eloquent, but the idea of sudden onset of uncharacteristic issues that could include: sensory, adhd, temper tantrums, emotional lability, restrictive eating. Depending on what you are proposing this chart for- I wouldn't want someone to be turned away because their child doesn't have the "handwashing" type issues that many think of as ocd.

I'm sort of hoping folks will have read the Signs and Symptoms list at:

http://www.latitudes.org/forums/index.php?showtopic=6265

 

which includes the list:

• Obsessions (e.g., preoccupation with a fixed idea or an unwanted feeling, often accompanied by symptoms of anxiety)
  
• Compulsions (e.g., an irresistible impulse to act, regardless of the rationality of the motivation)
  
• Choreiform movements (e.g., milk-maid grip, fine finger playing movements in stressed stance)
  
• Emotional lability (e.g.,irritability, sudden unexplainable rages, fight or flight behaviors) (66%)
  
• Personality changes (54%)
  
• Age inappropriate behaviors particularly regressive bedtime fears/rituals (50%)
  
• Separation anxiety (46%)
  
• Oppositional defiant disorder (40%)
  
• Tactile/sensory defensiveness (40%)
  
• Hyperactivity, impulsivity, fidgetiness, or inability to focus (40%)
  
• Major Depression (36%)
  
• Marked deterioration in handwriting or math skills. (26%)
  
• Daytime urinary frequency/enuresis (12%)
  
• Anorexia (particularly fear of choking, being poisoned, contamination fears, fear of throwing up)
  

Buster

[thereishope]

I'm a little confused. Is this suppose to be the order of steps someone should take following the yes or no?

 

I have another question in regards to the steroid burst. Are you using that only as a diagnostic tool for seeing if the child is a candidate for IVIG? Some have used it as part of their treatment.

[motherofamichael]

Buster- followed our path and it worked out really well. My only thought is possibly the initial box should be expanded. I had no experience with ocd- some of the behavoirs can appear to be other things until you really break them down. Possible add something more eloquent, but the idea of sudden onset of uncharacteristic issues that could include: sensory, adhd, temper tantrums, emotional lability, restrictive eating. Depending on what you are proposing this chart for- I wouldn't want someone to be turned away because their child doesn't have the "handwashing" type issues that many think of as ocd.

 

Buster - this is GREAT. Wish I had this 12 years ago when my son first started! I agree that the initial box should be expanded. My son started with PANDAS symptoms as a toddler and the main symptom was non-stop biting whenever he went from high dose abx to low dose abx. He later told me that he bit because he felt like he "couldn't breathe" if he didn't bite, which I interpreted to be a compulsion. I can see your point about hoping people will have read the the signs and symptoms list. Maybe you could either reference the list in the box or embed the URL in the box?

[Buster]

I'm a little confused. Is this suppose to be the order of steps someone should take following the yes or no?

 

I have another question in regards to the steroid burst. Are you using that only as a diagnostic tool for seeing if the child is a candidate for IVIG? Some have used it as part of their treatment.

Hi Vickie,

 

Yes, this is intended to capture the "steps" that people take -- i.e., how did they reach a conclusion -- whether PID or non-PANDAS or likely PANDAS.

 

With respect to the steroid burst, it's being used here as a diagnostic tool. There are severe adverse reactions for long term treatment with prednisone (see issues discussed in treatment of MS and Lupus) and as far as I know there is only one controlled study of pred for SC and none on pred for PANDAS.

 

Buster

[thereishope]

I understand stating the steroid burst here as a diagnostic tool. I wasn't saying to use long term steroids for PANDAS but since my son received it early on in antibiotic treatment, even the 5 day burst helped him in recovery. But, I understand what what the steroid is representing on the table.

 

I am nervous having the Cunningham blood drawn listed prior to starting abs listed. If someone read that I don't want them thinking they should hold off on starting antibiotics until they get their kit.

 

If you don't think that would happen, then it's all good with me. I just get nervous someone would interpret it like that.

[Buster]

I am nervous having the Cunningham blood drawn listed prior to starting abs listed. If someone read that I don't want them thinking they should hold off on starting antibiotics until they get their kit.

 

It's a good point. Let me see if I can fix that in the chart. see if revision fixes the problem.

[Buster]

Updated based on Vickie's comments

[Not_the_Same]

Thank you for putting this work in.

I am sure it will be as helpful as your other Posts.

 

-John

[T_Mom]

Hi Buster--Great idea!

In our case Box #7 should read: "suspected" GABHS--as sinusitis showed up on the MRI.

However, it was never determined positive, as sinus cavities were never tested for strep.

 

I would almost feel more comfortable with the flowchart if Boxes 4+5+6+7 were somehow folded into each other, and left the door open for "suspected", without proof.

 

Those of us with raging sudden-onset OCD (and no positive strep "caught" in swabs or titers...) may still benefit from antibiotics and/or steroids trial.

Again, great idea.

[Buster]

Hi T.Mom,

 

I actually thought about skipping the whole "check for GABHS" and just jump to box 9 on the presumption that a 30 day trial of antibiotics is WAY safer and cheaper than any anti-psychotic/anti-tic medication that would otherwise be prescribed. I thought about just recommending in box 7 to "get the Cam Kinase II results and if > 160 treat as PANDAS". This would catch the 31%+ of kids who don't have elevated ASO or Anti-DNAseB response -- particularly for difficult to culture sinus infections and cover the docs who don't seem to know how to take a simple throat culture -- couldn't believe the high-false negative rate because the nurses cultured throat rather than tonsils. Sigh.

 

Unfortunately, we don't have enough data yet to know if the Cam Kinase II test can become a diagnostic test. It sure seems promising, but we'll have to wait till the research paper comes out.

 

I'm happy to add another box after box 7 that says "suspected GABHS infection coincident with symptom onset" as a vague placeholder... would that work?

 

The reason I didn't collapse all the boxes is that I consistently see doctors pulling rapid and ASO together and making the very false assumption that the ASO is more accurate than the rapid. It's hard to believe that the ASO is about the same as a coin flip.

 

Buster

 

 

 

 

 

Hi Buster--Great idea!

In our case Box #7 should read: "suspected" GABHS--as sinusitis showed up on the MRI.

However, it was never determined positive, as sinus cavities were never tested for strep.

 

I would almost feel more comfortable with the flowchart if Boxes 4+5+6+7 were somehow folded into each other, and left the door open for "suspected", without proof.

 

Those of us with raging sudden-onset OCD (and no positive strep "caught" in swabs or titers...) may still benefit from antibiotics and/or steroids trial.

Again, great idea.

[LNN]

Hi Buster,

Thanks for all this work!

Two comments-

1. would it complicate things too much to have a box suggesting an immuno workup - for IG levels, for lyme, etc - it's certainly a "rule out" thing many have done, but I don't want to lose the message by adding too much.

 

2. Box 7 - a) is it just impetigo that doesn't produce elevated titers? I thought carriage and other individual body reactions could cause a non-rise. b- Should there be a note about doing an ASO 3-6 weeks post-infection, as this is the time when the levels would be highest?

 

Nice job of making sense out of a very confusing journey.

Laura

[wornoutmom]

If I'm following this right - I end up at the big red "STOP" box of non-strep trigger, with no where to go but considering the Cam Kinase study. So I have questions about this. What about strep being the original trigger through hindsight, but not the current trigger for exacerbation. Should there be a further path to follow if the Cam Kinase scores end up high? And what about the possibility of intercellular strep that isnt detected by swabs or ASO tests? Should there be a box about this to try 2 weeks of Zith and see if there is positive response?

[LNN]

If I'm following this right - I end up at the big red "STOP" box of non-strep trigger, with no where to go but considering the Cam Kinase study. So I have questions about this. What about strep being the original trigger through hindsight, but not the current trigger for exacerbation. Should there be a further path to follow if the Cam Kinase scores end up high? And what about the possibility of intercellular strep that isnt detected by swabs or ASO tests? Should there be a box about this to try 2 weeks of Zith and see if there is positive response?

 

I had a similar question - some things would be different on this diagram depending on whether you're talking about a first/initial episode or subsequent ones. Somehow, we need to get doctors to understand that the diagnostic criteria and the steps they might use to rule in or rule out a Pandas dx would be a little different if you're looking at a first event vs. a retrospective look at evidence. But the more complex this diagram gets, the less likely it is that a doctor would consider it (imo).

 

My son is now a "canary" - so sensitive that he has a Pandas reaction when his sister is sick but he is not. The Pandas experts get this. But if I had to walk into a pediatrician's office and start from scratch, I'd be up a creek without a paddle. Unfortunately, there isn't much research out there to "prove" the canary reaction is part of Pandas. So if this is something anyone would like to use with their local doctor, it might make the whole flow chart lose credibility if we start adding boxes that aren't supported by anything other than anecdotal evidence.

 

Looking at this, you start to understand why so few doctors get or want to get this disease. It's not as simple as "is bone broken?" Yes ---> set bone and place cast. No easy answers with this disease...