Jump to content
ACN Latitudes Forums

Confused about the definition of Pandas


Recommended Posts

I've been reading a lot about PANDAS lately and I'm a bit confused about it. Most articles state "a sudden onset of behaviors (i.e.tics/ocd, etc.) after a strep infection. Does this mean that the PANDAS actually created these symptoms for kids?

 

My son has several DX's including tourettes and ADHD but he's had it for a while. We've noticed problems with our child since the age of 2. In his case, are these 2 seperate entities and PANDAS might just be exacberating his conditions? His problems did not come on suddenly however sometimes they become much worse suddenly. Andrea

Link to post
Share on other sites

I don't think there is a straight forward answer to that question. My PANDAS daughter is 15 and severely autistic. We didn't recognize her problems with strep until she was 10 years old. Once the pattern of behaviors associated with strep episodes became obvious, I was able to look back to episodes from very early in her life when we never knew she had strep, and I could see that they were the same behaviors. So my personal opinion is that PANDAS, if it starts at a very young age, can interrupt and pervert normal development. So, I think its possible that these other "diagnosis", which are really just observed symptoms, can be caused by PANDAS. But, i don't think anybody can say for sure.

Link to post
Share on other sites

Hi Andrea,

 

Glad to see you jumped right in to the forum! You will find a lot of support and information here.

 

As I mentioned, our son had a sudden onset of OCD, but he has had problems all/most of his life with attention, sensory sensitivity, separation anxiety, transitions and behavior. But I believe there are at least a few other parents here who did not see the sudden, overnight onset of OCD/tics.

 

It's possible that the initial onset of PANDAS happened at age 2 and he's been dealing with it every since. Can you remember if anyone in the family had strep around that time or in the months before you started seeing symptoms. Also, it's possible that you have a carrier in your family, so someone had strep at the time and you never knew it. This seems to be relatively common among PANDAS families.

 

One thing I forgot to mention yesterday was that you may want to get an immunology workup on your son. Many here have found that their kids have immune deficiencies - it's worth looking into.

 

Again, glad you are here - keep reading and asking questions!

 

Jennifer

 

I've been reading a lot about PANDAS lately and I'm a bit confused about it. Most articles state "a sudden onset of behaviors (i.e.tics/ocd, etc.) after a strep infection. Does this mean that the PANDAS actually created these symptoms for kids?

 

My son has several DX's including tourettes and ADHD but he's had it for a while. We've noticed problems with our child since the age of 2. In his case, are these 2 seperate entities and PANDAS might just be exacberating his conditions? His problems did not come on suddenly however sometimes they become much worse suddenly. Andrea

Link to post
Share on other sites
Hi Andrea,

 

Glad to see you jumped right in to the forum! You will find a lot of support and information here.

 

As I mentioned, our son had a sudden onset of OCD, but he has had problems all/most of his life with attention, sensory sensitivity, separation anxiety, transitions and behavior. But I believe there are at least a few other parents here who did not see the sudden, overnight onset of OCD/tics.

 

It's possible that the initial onset of PANDAS happened at age 2 and he's been dealing with it every since. Can you remember if anyone in the family had strep around that time or in the months before you started seeing symptoms. Also, it's possible that you have a carrier in your family, so someone had strep at the time and you never knew it. This seems to be relatively common among PANDAS families.

 

One thing I forgot to mention yesterday was that you may want to get an immunology workup on your son. Many here have found that their kids have immune deficiencies - it's worth looking into.

 

Again, glad you are here - keep reading and asking questions!

 

Jennifer

 

Thanks again Jennifer, you've been a tremendous help!

 

I've been reading a lot about PANDAS lately and I'm a bit confused about it. Most articles state "a sudden onset of behaviors (i.e.tics/ocd, etc.) after a strep infection. Does this mean that the PANDAS actually created these symptoms for kids?

 

My son has several DX's including tourettes and ADHD but he's had it for a while. We've noticed problems with our child since the age of 2. In his case, are these 2 seperate entities and PANDAS might just be exacberating his conditions? His problems did not come on suddenly however sometimes they become much worse suddenly. Andrea

Link to post
Share on other sites
I've been reading a lot about PANDAS lately and I'm a bit confused about it. Most articles state "a sudden onset of behaviors (i.e.tics/ocd, etc.) after a strep infection. Does this mean that the PANDAS actually created these symptoms for kids?

 

My son has several DX's including tourettes and ADHD but he's had it for a while. We've noticed problems with our child since the age of 2. In his case, are these 2 seperate entities and PANDAS might just be exacberating his conditions? His problems did not come on suddenly however sometimes they become much worse suddenly. Andrea

 

"sudden onset" is the definition of "classic PANDAS"...but there is a more chronic form. There is also the possible scenerio (which my dd and others on this forum have experienced) where there may be low grade undiagnosed symptoms (such as sensory stuff, anxiety, low grade ocd, urinary issues, maybe adhd) for years until something happens (perhaps another infection) that brings everything to a "head" and the symptoms become full-blown (which in my dd's case resulted in severe ocd/anorexia nervosa/hospitalization).

 

Plus...detection can be complicated if a strep infection goes undiagnosed since not all pandas kids get the classic red sore throat with strep (my dd didn't!), so docs don't even bother to test/culture for strep. Additionally, many pandas kids get strep (which may not only be in the throat but can be elsewhere...vaginal, sinuses, perianal, gut) without any symptoms expect beh. changes/tics.

 

It's possible you son had an undiagnosed/untreated strep infection at an early age (assuming he is PANDAS) which set the wheels of this autoimmune dz in motion.

Link to post
Share on other sites

Hold on folks! Look - the current definition is ABSOLUTELY sudden onset of ocd, sensory issues. It is a horrible catastrophic onset. THIS IS THE CURRENT DEFINITION OF PANDAS! PERIOD. It is true that some kids could have been struggling for quite some time. Then - these kids should get their titers checked. Often they will be elevated sometimes not. So then what is next to do?

 

If a child has PANDAS - truly has this - they should see some level of improvement in approx. 2 to 5 days on antibiotics. This indicates a bacterially induced infection --- which is the DEFINITION OF PANDAS.

 

A lot of problems: autism, tourettes - they can have autoimmune links, of course. I created the pandasnetwork.org website only with the sudden onset cases in mind. EAMom's observations about her daughter definitely show it can be a longtime in coming - the catastrophic onset. But make no mistake about it --- EAMom's daughter did have a sudden, debilitating onset. THIS IS THE PANDAS SYNDROME.

 

Any other definitition - is just not there yet. You can consult with the few specialists there are but folks --- this is beyond the capacity of parents you are discussing this with. It is conjecture and it is unfair.

Link to post
Share on other sites

Don't forget that Dr. T. discuses "Chronic pandas" in one of his papers (this one...unfortunately the full-text isn't available for free online) http://www.ncbi.nlm.nih.gov/pubmed/16970875 . Hopefully one day Dr. T. will write more about this...because i agree with him that it is possibly more common than "classic PANDAS"...esp. since many kids develop PANDAS at an early age and the strep "carrier state" (or whatever you want to call it, intracellular strep) goes unchecked (because nobody bothers to check these kids for strep)for years.

 

Perhaps we'd have a lot less "chronic pandas" if docs knew to throat culture kids when they first start with the "typical" childhood tics (or other behaviors). From Dr. T's paper:

 

Chronic PANDAS

Rather than the characteristic explosive onset typical of

PANDAS, in which parents can often point to the day and even

hour when symptoms began, many patients with tics and/or

obsessive-compulsive disorder have a much more gradual onset

and chronic course, with waxing and waning of symptoms over

the course of days to weeks. D8/17 antibodies have been

demonstrated in patients with PANDAS16,17 and patients with

chronic tic disorders.5,6,125–129 Anti–basal ganglia antibodies had

also been demonstrated in patients with tic disorders and/or

obsessive-compulsive disorder, well before the PANDAS concept

was proposed, and strongly confirmed in a recent large study.130

Could some patients with less explosive onset of Tourette

syndrome/obsessive-compulsive disorder have a more persistent

streptococcal infection? We recently found evidence of a

streptococcal carrier state in 72% of patients with Tourette

syndrome–obsessive-compulsive disorder surveyed over a 3-year

period (Trifiletti, manuscript in preparation), some 3- to 10-fold

higher than the general population. We propose that this group

be called ‘‘chronic PANDAS.’’ Chronic PANDAS might prove to

be much more common than classic PANDAS.

Link to post
Share on other sites
My son has several DX's including tourettes and ADHD but he's had it for a while. We've noticed problems with our child since the age of 2. In his case, are these 2 seperate entities and PANDAS might just be exacberating his conditions?

 

Of course it is possible that your son does have PANDAS plus some other issues (that PANDAS may not be the sole cause of). But, PANDAS does typically have tics and/or ADHD as a symptom.

 

My dd has PANDAS and (we suspect) also some non-pandas (underlying) social anxiety (although PANDAS makes the any anxiety way worse). Of course, it is can be difficult to figure out what is Pandas and what isn't if your child isn't really getting 100% back to "baseline" after each exacerbation.

 

Another example would be that there are some kids with Autism that also have PANDAS. There are other kids that have been diagnosed with Autism...but when the PANDAS is treated (with IVIG etc) the Autism goes away as well, so it turns out it was all PANDAS (Dr. K. mentioned this in a radio interview) causing the "autistic" symptoms. So, it can go both ways.

Link to post
Share on other sites
Hold on folks! Look - the current definition is ABSOLUTELY sudden onset of ocd, sensory issues. It is a horrible catastrophic onset. THIS IS THE CURRENT DEFINITION OF PANDAS! PERIOD. It is true that some kids could have been struggling for quite some time. Then - these kids should get their titers checked. Often they will be elevated sometimes not. So then what is next to do?

 

If a child has PANDAS - truly has this - they should see some level of improvement in approx. 2 to 5 days on antibiotics. This indicates a bacterially induced infection --- which is the DEFINITION OF PANDAS.

 

A lot of problems: autism, tourettes - they can have autoimmune links, of course. I created the pandasnetwork.org website only with the sudden onset cases in mind. EAMom's observations about her daughter definitely show it can be a longtime in coming - the catastrophic onset. But make no mistake about it --- EAMom's daughter did have a sudden, debilitating onset. THIS IS THE PANDAS SYNDROME.

 

Any other definitition - is just not there yet. You can consult with the few specialists there are but folks --- this is beyond the capacity of parents you are discussing this with. It is conjecture and it is unfair.

Diana,

In her radio interview last week on voiceamerica, Dr Latimer addresses the fact the the definition of PANDAS is changing as more clinical cases are evaluated. For instance, she says that 2 strep infections are not considered necessary anymore because doctors are realizing it's dangerous to wait for a second episode just to have a clear diagnosis. She also said that though most cases are sudden-onset, it's not an absolute criteria. Other factors such as choreiform movements, urinary changes, behavioral changes...need to be considered as part of the whole picture. She didn't make "sudden-onset" a black and white criteria, just that it's a "classic" symptom.

 

I also can't say my son improved on 2-5 days of abx. Sometimes we saw improvement this quickly, but after he'd been sick a long time, this wasn't the case. PANDAS episodes frequently take 6 weeks to resolve once the strep is cleared. Lots of us will attest to how 10 days of abx isn't enough to do this.

 

I get that you're trying to limit the definition of PANDAS and that not every kid with similar symptoms has PANDAS. I agree with you. The focus needs to be on getting the right diagnosis, not simply the diagnosis that you "want". Yes, it's the "overnight" bump up in changes that sets off the alarms as opposed to a gradual rise. An 18+ point rise in OCD symptoms on the YBOCS is a good benchmark for those with OCD as a big component. But I also don't want a newcomer to think that low level symptoms that existed previously make it impossible to have PANDAS. It should be explored with the same thoroughness as any other diagnosis - and by a knowledgeable doctor who can do a neurological exam. Parents on a forum can only be a sounding board. But I think that's what this thread is doing - helping a parent sort things out, giving food for thought.

 

Dr Triffiletti will be on voiceamerica today at noon EST to talk about the less "black and white" ways PANDAS can present.

 

http://www.voiceamerica.com/voiceamerica/vshow.aspx?sid=977

 

The shows are archived, so you can go to this link any time from noon today until probably two years from now to listen. Dr Latimer's and Dr Kovacevic's interviews are also here. Dr K is also exploring the "pediatric" piece, as he's seeing a teenage variation and possibly an adult variation. So I think Swedo's definition was narrow by necessity, but it's evolving as more of us add pieces to the puzzle.

 

I hope this post doesn't irk you - I seem to be prone to that this week.

 

Laura

Link to post
Share on other sites

We did have sudden onset at 3 & 6.8. But after that, we moved into a stage that was a remission - but not complete. It further complicated diagnosis, because despite 2 sudden onsets, the doctors got hung up on the next 12 months, where she had low level Sensory Integration issues, mild anxiety (especially social with adults), mild OCD & occassional Panic. She just never returned to her baseline after the 2nd sudden onset. When the 3rd onset happened with an ear infection, that was then layered with a 4th onset with exposure to impetigo, our graph suddenly turned into a nightmare of a slow build (no return to baseline) and then 2 increasing onsets - this took us right back to the nightmare, and in retrospect we (and our doctors) can see the pattern - but at the time, we were ignoring the first 2 sudden onsets and focusing on this year of build. It make it seem like more traditional OCD. I am very grateful that the first 2 onsets had such a long remisison between, and allowed us to see them for what they were. I am grateful that our child was a bold happy kid normally, and I could see the difference so clearly. It seems very important to remember that onset is used interchangeable with exacerbation as well.

 

We did also have an immediate reaction to abx - but mild. It was more of a lessening of anxiety and an ability to process and accept support than a miracle overnight cure. It took about 3 weeks to get back to 95%. The Prednisone on the other hand, was a miracle for the week that we had it.

 

I was reading on another forum about a doctors comments about IVIG vs abx - which directly plays to fears that I have that we are not doing enough for Meg, given her remission. For a moment, I felt my personal fears flood back. I had to take a deep breath and remember that we are still working on this.

 

I try to remember that there is no one voice of authority - and that yes, I might make mistakes, but I am doing all that I can to listen to the evidence, such as it is, and to act in Meg's best interests. Often this disease is so dramatic and so traumatic for the parents, that we find ourselves speaking very strongly on many issues that are not completely proven yet. I see PANDAS everywhere (and despite this balanced post, I totally think I am right!) in other children. I think it is much more common than any medical professional is acknowledging.

 

I also think that the real studies need to be on medically caused Neurological issues. We all know from reading here, that LYME, LUPUS & THYROID diseases can also cause severe Neurological issues that can look very very similar to PANDAS. And that other illnesses besides strep are certainly suspected in onset of PITAND - such as Mycoplasma, which is frankly fascinating to me. And there are other reasons for many kinds of mental illness. We are all on a continuum, and the end goal just has to be to bring peace and joy back into our children's lives. Whatever "disease" gives you the treatment to do this, then I support your efforts!

 

I went to talk to a therapist about this myself, as the pressure of being a PANDAS parent in this day & age is pretty intense. Which option do I pick? Why am I my child's case manager? Why does everyone tell me something different? How do I make decisions in the absense of clear research? How do I accept this uncertainty when I am making such major medical decisions for her? How do I ensure that I am doing the least harm and getting the max benefit.

 

I feel for all of us - someday, the research will be clear, and we will be able to look back and know. In the meantime, we are all doing the best we can. You are all amazing parents, living through a nightmare. But I know that you will find answers for your kids, and will contribute in small and large ways to the future "cure for PANDAS", so that our grandchildren don't live through this nightmare - and our children don't have to be PANDAS parents.

Link to post
Share on other sites

I understand both sides of this argument, but the fact is the research isn't anywhere near all there yet. So I don't want Andrea to be discouraged from looking into PANDAS as a possibility simply because they never saw a sudden onset. The diagnosis needs to be made clinically with the help of a knowledgable doctor, not based on current research study criteria. I would definitely talk to Dr. T in Palo Alto, try a course of antibiotics, since your son has high titers, and see if it makes a difference in his tics and behavior. Perhaps try a course of prednisone. Maybe get the Cunningham test.

 

That said, I think it's great that everyone is chiming in with their view. It's all valuable, even if we sometimes disagree.

 

Jennifer

 

Hold on folks! Look - the current definition is ABSOLUTELY sudden onset of ocd, sensory issues. It is a horrible catastrophic onset. THIS IS THE CURRENT DEFINITION OF PANDAS! PERIOD. It is true that some kids could have been struggling for quite some time. Then - these kids should get their titers checked. Often they will be elevated sometimes not. So then what is next to do?

 

If a child has PANDAS - truly has this - they should see some level of improvement in approx. 2 to 5 days on antibiotics. This indicates a bacterially induced infection --- which is the DEFINITION OF PANDAS.

 

A lot of problems: autism, tourettes - they can have autoimmune links, of course. I created the pandasnetwork.org website only with the sudden onset cases in mind. EAMom's observations about her daughter definitely show it can be a longtime in coming - the catastrophic onset. But make no mistake about it --- EAMom's daughter did have a sudden, debilitating onset. THIS IS THE PANDAS SYNDROME.

 

Any other definitition - is just not there yet. You can consult with the few specialists there are but folks --- this is beyond the capacity of parents you are discussing this with. It is conjecture and it is unfair.

Link to post
Share on other sites

So, can a child have a pre-existing disorder (even OCD) but when it becomes horribly extreme overnight along with other symptoms and there is a strep infection, that is PANDAS, correct?

 

If that is the case, then once that child's PANDAS symptoms go into remission, some OCD might remain from the pre-existing disorder.

 

I guess to sum up my question, can a PANDAS child have co-morbid disorders? I thought so, but some on here have disagreed with me.

 

 

Also, the improvement may begin in 2-5 days but it doesn't mean the child will be back to their baseline in 2-5 days. My son has a pattern where he will continue to worsen for an average 3 days after starting abx, then I start to see some improvement. Overall, the first 2 exacerbations took a couple months to resolve and the third one took about 5 months to get back to baseline.

Link to post
Share on other sites

Meg's mom - Oh my goodness THANK YOU for putting into words everything that I feel on a daily basis. I too see a therapist to help me keep my own head on straight in wading through all of this. I don't even know how to explain our course, as my son had issues (GAD, sensory, anxiety tantrums)before his sudden onset explosion of OCD, complicated by the fact that we gave him Paxil a day or two before his onset and the strep showed up a day or two later. Also complicated by the fact that the strep infections came roaring back every 3 to 8 weeks for a year, and just when symptoms seemed to be stable, they'd suddenly spike and here would come the sore throat and fever again. I guess I consider his "baseline" to be what he was like in the years after we finally eradicated the strep - a somewhat shy, anxious kid who worried some and had some subclinical OCD, but was making friends, learning, trying new things and focusing every day on being brave(###### - he even flew in a small airplane during aeronautics camp one summer!). Since the suspected PITANDS kicked in at age 11, we have only seen short glimpses of that kid. When it took him down, it took him down hard. And now with god knows what as the trigger, and him getting sick so often, we may be stuck in somewhat of a "chronic" loop. I spend hours every day wondering what I am doing, and if it is/will be the right thing for him. Thank you for so wonderfully putting it into words!

Link to post
Share on other sites
I understand both sides of this argument, but the fact is the research isn't anywhere near all there yet. So I don't want Andrea to be discouraged from looking into PANDAS as a possibility simply because they never saw a sudden onset. The diagnosis needs to be made clinically with the help of a knowledgable doctor, not based on current research study criteria. I would definitely talk to Dr. T in Palo Alto, try a course of antibiotics, since your son has high titers, and see if it makes a difference in his tics and behavior. Perhaps try a course of prednisone. Maybe get the Cunningham test.

 

That said, I think it's great that everyone is chiming in with their view. It's all valuable, even if we sometimes disagree.

 

Jennifer

 

Jennifer, so elegantly put. If nothing else, it feels good to have some light at the end of the tunnel especially with everything I've been through with my child these past 5 years. With that in mind, I got an appointment with Dr. T. for next week thanks to you! I'll keep you posted with what she says. Andrea

 

Hold on folks! Look - the current definition is ABSOLUTELY sudden onset of ocd, sensory issues. It is a horrible catastrophic onset. THIS IS THE CURRENT DEFINITION OF PANDAS! PERIOD. It is true that some kids could have been struggling for quite some time. Then - these kids should get their titers checked. Often they will be elevated sometimes not. So then what is next to do?

 

If a child has PANDAS - truly has this - they should see some level of improvement in approx. 2 to 5 days on antibiotics. This indicates a bacterially induced infection --- which is the DEFINITION OF PANDAS.

 

A lot of problems: autism, tourettes - they can have autoimmune links, of course. I created the pandasnetwork.org website only with the sudden onset cases in mind. EAMom's observations about her daughter definitely show it can be a longtime in coming - the catastrophic onset. But make no mistake about it --- EAMom's daughter did have a sudden, debilitating onset. THIS IS THE PANDAS SYNDROME.

 

Any other definitition - is just not there yet. You can consult with the few specialists there are but folks --- this is beyond the capacity of parents you are discussing this with. It is conjecture and it is unfair.

Link to post
Share on other sites

Hey Vickie - I always look back to the research on this - they don't say that sudden onset means from nothing to full blown - they say that it means an exacerbation of 18+ points on the y-boc scale for OCD (I apologize, I don't know the system or the scale for tics). I have always thought that you could have mild OCD or ADHD - or autism - and then get hit by PANDAS. Just as any child can have strep or a bacterial infection, then of course, any kid could have have a PANDAS episode. In fact, I would guess that someday we'll understand the immune vulnerability better that makes a child susceptible to PANDAS, and it will make a lot of sense that kids with other issues then get PANDAS. An 18 point swing is a really scary thing. It was understanding the y-boc scale & my daughter's scores that finally helped me understand the difference between "wax and wane" and "exacerbation". Not the same thing at all! But very confusing, even to most therapists!

 

The fact that there could be underlying mild issues is one of the reasons that some, including me, advocate for tools such as ERP that will allow the child to really become fully functional - a combination of great medical treatment through abx and/or IVIG and ERP for coping and bringing the OCD down that much faster.

 

So, can a child have a pre-existing disorder (even OCD) but when it becomes horribly extreme overnight along with other symptoms and there is a strep infection, that is PANDAS, correct?

 

If that is the case, then once that child's PANDAS symptoms go into remission, some OCD might remain from the pre-existing disorder.

 

I guess to sum up my question, can a PANDAS child have co-morbid disorders? I thought so, but some on here have disagreed with me.

 

 

Also, the improvement may begin in 2-5 days but it doesn't mean the child will be back to their baseline in 2-5 days. My son has a pattern where he will continue to worsen for an average 3 days after starting abx, then I start to see some improvement. Overall, the first 2 exacerbations took a couple months to resolve and the third one took about 5 months to get back to baseline.

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...