confused about PANDAS

[michiganmom]

Hi,

 

I was told I should put this in the PANDAS section, so here it is:

 

Thank you so much for your help, by the way, but I guess I'm a bit confused about PANDAS. The bit of searching on the PANDAS forum I did really didn't answer my questions....unless I didn't look hard enough.

 

What does it matter if he has PANDAS? Is it treatable? Would the tics go away for good? Is the treatment for tics brought on by PANDAS different then what people do for tics brought on by allergies?

 

My son's doctor said that if he had done the bloodwork for PANDAS it wouldn't have said much other than my son had a strep infection. I got the feeling he wasn't sure about the whole PANDAS thing.

[dut]

Hi - if you haven't already, this faq

 

http://www.latitudes.org/forums/index.php?showtopic=6266

 

is a good place to start.

 

In answer to your questions.. PANDAS is treatable, different kids need differing levels of treatment.

 

IMO, you don't cure PANDAS but it can go into remission, although Dr Kovacevic in Chicago and others believe that a cure is possible for many kids with IVIG. You can manage future epsiodes, in part, with antibiotic prophylaxis. Many children appear to grow out if it by adulthood, so for us and our dd it is a matter of aggressive management until we get to that point.

 

The treatment for PANDAS would be different than that brought on by allergies as you would want to check for current infection and treat that and attempt to keep future infectious triggers away. However, some PANDAS kids respond to both infectious triggers and other environmental triggers such as allergies.

 

I had it explained to me in terms of these kids' immune systems getting poked until they overreact to many things. The job then is to calm it back down by giving it reprieve from pokes eg using abx to clear infections and then limit future infections, avoiding allergic triggers etc. If that isn't enough, then immune suppression/modulation may be necessary such as steroids/IVIG/PEX/plasmapheresis.

 

Hopefully others will repsond more fully (and better ). Good luck...

[Buster]

What does it matter if he has PANDAS? Is it treatable? Would the tics go away for good? Is the treatment for tics brought on by PANDAS different then what people do for tics brought on by allergies?

 

PANDAS is thought to have a different pathogenesis (cause) than traditional tic or Obsessive Compulsive disorders. The cause for Tourettes Syndrome and other tic disorders is not known and thus symptoms are generally treated for these disorders rather than underlying condition. PANDAS is thought to be a disease (i.e., defined cause) where Tourettes and OCD are syndromes (i.e., collections of symptoms whose cause is not known).

 

Studies in since 1998 (see PANDAS FACT Sheet) indicate that PANDAS has an auto-immune component that is not present in traditional tic and OCD presentation. Research by Kirvan indicates that in genetically susceptible individuals, the immune system produces an inappropriate response to GABHS with antibodies targeting the GlcNAc carbohydrate on the GABHS cell wall. These antibodies appear to cross react with neuronal tissue causing fluxuations/interference with dopamine levels and neuronal signalling.

 

My son's doctor said that if he had done the bloodwork for PANDAS it wouldn't have said much other than my son had a strep infection. I got the feeling he wasn't sure about the whole PANDAS thing.

That sounds odd on multiple levels. If it said your son had a strep infection, then he should treat the strep infection to head off possibility of ARF or SC. What an odd comment. However, usually a throat culture is an effective first level test to check for active strep colonization. Throat colonization is typically treated since in most cases (>90%) it turns into an infection.

 

PANDAS does not have a recognized blood test. Swedo found elevation in ASO titers in some children that presented with sudden onset and severe OCD. Other studies have shown the ASO titers rise in only 64% of children who had culturable GABHS.

 

Kirvan and Cunningham have found an elevation in CaM Kinase II activation in children who fit the PANDAS profile. However, this is a research trial and the sensitivity and specificity of this test is not known. Today, PANDAS must be diagnosed from clinical symptoms and the correlation of clinical symptoms with a GABHS infection precursor.

 

Bottom line, exacerbation with GABHS infection and remission with antibiotics is a pretty strong indicator of PANDAS. Similarly, for severe cases, remission with a burst of pred or remission with IVIG/PEX strongly implicates an auto-immune component.

 

Recommend looking at the PANDAS fact sheet at: http://www.latitudes.org/forums/index.php?showtopic=6265

 

Best regards,

 

Buster

[thereishope]

Welcome. I think I may need more background from you. I'm guessing your child's allergies have kicked in and you are seeing an upswing in tics and possible other behavior changes?

 

With my son, allergies is a trigger for PANDAS symptoms. With PANDAS and PITAND, it's like once the Pandora's box opens with an infection, such as strep, it never fully closes or at least it sure takes a long time to close. Meaning, every time the immune system kicks in with a virus, allergy, infection you might see an upswing in the tics or odd behaviors. For my son...once I get the allergies under control with allergy medicine, I see the behvaior changes ease up because his immune system isn't in overdrive anymore. Allergies are hitting early this year.

 

So...I am also getting from you post that he has had bloowork that shows a current or past strep infection. when was that bloodwork done? If by chance he has a strep infection AND allergies are kicking in AND it is PANDAS...that could really send a child over the edge. That immune system is just going crazy.

 

PANDAS does remain a clinical dignosis. Meaning a doctor in the office cannot do a blood test andsay it is a test for PANDAS.

 

As for antibiotics, if there is an infection, the right antibiotics is given (this is trial and error) and you see an improvemnt in symptoms, that is a good sign of PANDAS.

 

However.....if your child does NOT have a strep infection, has PANDAS, and allergies have surfaced....antibiotics would not improve the symptoms. Controlling the allergies would. But that's only if there's no infection.

 

Not that I've probably confused you even more. Post any follow up info or questions:)

 

I agree to click on the link of the fact sheet Buster posted. Print it out and read it. There is a list of other possible symptoms of PANDAS. Note..a child does not need to have all symptoms listed to have PANDAS.

Edited March 20, 2010 by Vickie

[michiganmom]

Yes, I will be looking at the website given. Thank you all.

 

My son was tested for allergies last week and everything came back normal. Iga levels normal as well.

 

He did have strep throat....when....I'm not sure. I'm trying to remember if it was before the onset of the first tic when he was 2 1/2. He is now 5 and hasn't had a strep infection since......His tic started out as eye blinking then went away for awhile, then came back with throat clearing, then went away and came back with another new one, etc. Now he does a mix of them and they haven't gone away. During the past two weeks they have lessened though.

 

I'm not sure if this could be PANDAS. Could he still be having tics from the strep infection several years ago?

 

My brother and brother in law appear to have one not so noticable tic, but nothing like what my son has.

[thereishope]

He might have undiagnosed strep. Unfortunately, some doctors don't swab kids under the age of 3 for strep throat. They have in their mind that kids younger than 3 can't get it. That is just not true! You can have strep, and strep thraot, without a sore throat, without a fever. Also, strep can occur in other places. It can be in the sinuses, may be the culprit of an ear infection, gut, anal, vaginal, skin. Some diaper rashes are actually strep. People just don't realize how many places it can occur. So, just because you don't have a documented strep infection at 2 1/2, doesn't mean he didn't have one:(

 

If he had strep that was not fully erradicated, it could have been lingering this whole time. If you suspect PANDAS as a possibility, you could start with a simple strep test. Do a rapid test, if that comes back negative, make sure they send out a culture. If that comes back negative, do blood tests. Strep is a very sneaky infection. It likes to hide and PANDAS kids (a lot who do not get symptoms of strep) is the perfect place for strep to hide.

[thereishope]

Here is a link to Buster's flowchart. It may help people through the steps of trying to figure out a diagnosis...

 

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

[Stephanie2]

PANDAS/PITAND is so much more than having a simple strep infection and then "poof" you take antibiotics and it's gone (well, I take that back, in SOME cases it is that simple). Like vickie said, once you get the initial strep infection that triggers the pandas symptoms, many kids go on to have exacerbations at the slightest provocation. For example, exposure to a strep carrier (even a dog) can flare up symptoms, even if the child does not "GET" a strep infection (Buster can explain this better), exposure or acquiring of a virus/cold, and the list goes on. In my son, these are the triggers: strep, allergies, viruses, yeast and bacteria in the gut (brought on by too many antibiotics), being around a dog/friend/brother who has strep or carries strep. Just recently both my kids fell apart over a staph infection. It took me a long time to understand all this. Beware of the docs who do a strep culture or blood test (which come back negative) and they tell you that there is no way your child has pandas. There are few docs who understand all the ins and outs.

 

Then you've got such complications as antibiotic intolerance (both of my kids). When they take high-dose antibiotics they get bacterial/yeast infections which cause symptoms that are just as bad as the original infection. OCD, violent rages, etc...

 

A good website to read: www.pandasresourcenetwork.org

 

Our doctor is on the medical advisory board: Scott Smith, PA. He has two pandas sons of his own...trust me he gets it (his website: www.icdrc.org)

 

Best of luck!

Stephanie

[EAMom]

He is now 5 and hasn't had a strep infection since

He hasn't had a strep infection that you know of!

 

Many PANDAS kids get strep infections with no symptoms other than behavioral changes (sensory issues, anxiety, tantrums, ocd, adhd, urinary frequency, handwriting deterioration) and/or tics...in other words, no sore throat, no fever. But, if you do a throat culture, it will be positive. Also, strep can linger in non throat locations...skin, sinuses, gut...in these cases the throat culture can be negative.

 

Does your son have just tics...or other symptoms as well?? If your son has tics has is only symptom, I would tend to be somewhat less suspicious of PANDAS.

Edited March 22, 2010 by EAMom

[Fixit]

He is now 5 and hasn't had a strep infection since

He hasn't had a strep infection that you know of!

 

Many PANDAS kids get strep infections with no symptoms other than behavioral changes (sensory issues, anxiety, tantrums, ocd, adhd, urinary frequency, handwriting deterioration) and/or tics...in other words, no sore throat, no fever. But, if you do a throat culture, it will be positive. Also, strep can linger in non throat locations...skin, sinuses, gut...in these cases the throat culture can be negative.

 

Does your son have just tics...or other symptoms as well?? If your son has tics has is only symptom, I would tend to be somewhat less suspicious of PANDAS.

 

Not trying to argue with people who've done so much and know much more than alot of doctors out there...but i don't want to be left out of the life boat.

My ds is currently dx with Ts

of the 2-3 times a year he would get strep, he would tic, that's it...yah oppositional but in our case i really don't want to over react and i think for my son it was do to the fact he was cranky and sick. His tics would go away with abx in 4 weekish. Last 2 years no recorded strep but with abx complete remission from tics. This last onset 4/6/09....my theory is, he has horrible allergis..pollen count that day 3000ish....presented at docs the day before(and every visit)presented with swollen glands etc... I was able to get abx but was wrong one, and not a strong enough dose. Also son has Mycoplasma P. that i would never have thought to look for. It has now been a year, and i am concerned that the MULTIPLE strep infections reallyd did some voodoo on his t'cells.

We have very recently started on a new regime...and things are mildly better, of course we are being slammed with dental work about 2 weeks in and the pollen count here is Very High....DS is completely clogged up...can't catch a break!!

 

And let's not forget Lauren...the sneezing girl....i just think tics are harder, hardest to reset, hence harder to figure out trigger as recovery will not be as immediate as ocd perhaps and peolple aren't waiting long enough to see if and what works!!!

 

JMHO

 

PS and as doc t's chart...as kids get older they move into a pandax catagory(his system) where the course of multuple infectins let any "irritant" create the same type of exasperaton(if i worded that right)

Edited March 22, 2010 by Fixit

[EAMom]

He is now 5 and hasn't had a strep infection since

He hasn't had a strep infection that you know of!

 

Many PANDAS kids get strep infections with no symptoms other than behavioral changes (sensory issues, anxiety, tantrums, ocd, adhd, urinary frequency, handwriting deterioration) and/or tics...in other words, no sore throat, no fever. But, if you do a throat culture, it will be positive. Also, strep can linger in non throat locations...skin, sinuses, gut...in these cases the throat culture can be negative.

 

Does your son have just tics...or other symptoms as well?? If your son has tics has is only symptom, I would tend to be somewhat less suspicious of PANDAS.

 

Not trying to argue with people who've done so much and know much more than alot of doctors out there...but i don't want to be left out of the life boat.

My ds is currently dx with Ts

of the 2-3 times a year he would get strep, he would tic, that's it...yah oppositional but in our case i really don't want to over react and i think for my son it was do to the fact he was cranky and sick. His tics would go away with abx in 4 weekish. Last 2 years no recorded strep but with abx complete remission from tics. This last onset 4/6/09....my theory is, he has horrible allergis..pollen count that day 3000ish....presented at docs the day before(and every visit)presented with swollen glands etc... I was able to get abx but was wrong one, and not a strong enough dose. Also son has Mycoplasma P. that i would never have thought to look for. It has now been a year, and i am concerned that the MULTIPLE strep infections reallyd did some voodoo on his t'cells.

We have very recently started on a new regime...and things are mildly better, of course we are being slammed with dental work about 2 weeks in and the pollen count here is Very High....DS is completely clogged up...can't catch a break!!

 

And let's not forget Lauren...the sneezing girl....i just think tics are harder, hardest to reset, hence harder to figure out trigger as recovery will not be as immediate as ocd perhaps and peolple aren't waiting long enough to see if and what works!!!

 

JMHO

 

PS and as doc t's chart...as kids get older they move into a pandax catagory(his system) where the course of multuple infectins let any "irritant" create the same type of exasperaton(if i worded that right)

 

Yes! good point. Once the "wheels of PANDAS" are set in motion, non-strep illnesses (viral, other bacteria/mycoplasma, allergies) can trigger exacerbations. This further complicates diagnosis. Our dd is currently (since feb) in an exacerbation (has been on Azith. long-term, also had IVIG) from (we think) a virus (1 day Fever plus cough). We are upping the Azith to 500mg/day (just in case, also gives us more immune modulation) and will repeat a course of steroids in 7-10 days. If that doesn't really settle things down we will repeat IVIG. She doesn't have full-blown anorexia, but is restricting eating, has food questions, irritable...mood (so far) is improving on the higher Azith. dose.

 

In the past dd has reacted to H1N1 and fifth's dz with an increase in PANDAS symptoms.

 

And some "symptoms" (eg. tics) are harder to eliminate than others (mood improvement seems to be an early sign of improvement).

Edited March 22, 2010 by EAMom

[EAMom]

of the 2-3 times a year he would get strep, he would tic, that's it...yah oppositional but in our case i really don't want to over react and i think for my son it was do to the fact he was cranky and sick. His tics would go away with abx in 4 weekish.

 

IMO oppositional beh. is a big PANDAS symptom...it was for us!

 

There were a few parents that have posted that didn't even "know" their real kids personality was until treatment...they didn't realize that oppositional/difficult beh. was part of the dz, just assumed it was their kids personality!

Edited March 22, 2010 by EAMom

[peglem]

He is now 5 and hasn't had a strep infection since

He hasn't had a strep infection that you know of!

 

Many PANDAS kids get strep infections with no symptoms other than behavioral changes (sensory issues, anxiety, tantrums, ocd, adhd, urinary frequency, handwriting deterioration) and/or tics...in other words, no sore throat, no fever. But, if you do a throat culture, it will be positive. Also, strep can linger in non throat locations...skin, sinuses, gut...in these cases the throat culture can be negative.

 

Does your son have just tics...or other symptoms as well?? If your son has tics has is only symptom, I would tend to be somewhat less suspicious of PANDAS.

 

Not trying to argue with people who've done so much and know much more than alot of doctors out there...but i don't want to be left out of the life boat.

My ds is currently dx with Ts

of the 2-3 times a year he would get strep, he would tic, that's it...yah oppositional but in our case i really don't want to over react and i think for my son it was do to the fact he was cranky and sick. His tics would go away with abx in 4 weekish. Last 2 years no recorded strep but with abx complete remission from tics. This last onset 4/6/09....my theory is, he has horrible allergis..pollen count that day 3000ish....presented at docs the day before(and every visit)presented with swollen glands etc... I was able to get abx but was wrong one, and not a strong enough dose. Also son has Mycoplasma P. that i would never have thought to look for. It has now been a year, and i am concerned that the MULTIPLE strep infections reallyd did some voodoo on his t'cells.

We have very recently started on a new regime...and things are mildly better, of course we are being slammed with dental work about 2 weeks in and the pollen count here is Very High....DS is completely clogged up...can't catch a break!!

 

And let's not forget Lauren...the sneezing girl....i just think tics are harder, hardest to reset, hence harder to figure out trigger as recovery will not be as immediate as ocd perhaps and peolple aren't waiting long enough to see if and what works!!!

 

JMHO

 

PS and as doc t's chart...as kids get older they move into a pandax catagory(his system) where the course of multuple infectins let any "irritant" create the same type of exasperaton(if i worded that right)

 

Yes! good point. Once the "wheels of PANDAS" are set in motion, non-strep illnesses (viral, other bacteria/mycoplasma, allergies) can trigger exacerbations. This further complicates diagnosis. Our dd is currently (since feb) in an exacerbation (has been on Azith. long-term, also had IVIG) from (we think) a virus (1 day Fever plus cough). We are upping the Azith to 500mg/day (just in case, also gives us more immune modulation) and will repeat a course of steroids in 7-10 days. If that doesn't really settle things down we will repeat IVIG. She doesn't have full-blown anorexia, but is restricting eating, has food questions, irritable...mood (so far) is improving on the higher Azith. dose.

 

In the past dd has reacted to H1N1 and fifth's dz with an increase in PANDAS symptoms.

 

And some "symptoms" (eg. tics) are harder to eliminate than others (mood improvement seems to be an early sign of improvement).

I'm so sorry you guys are having PANDAS symptoms again....you've already been through so much!

[Fixit]

of the 2-3 times a year he would get strep, he would tic, that's it...yah oppositional but in our case i really don't want to over react and i think for my son it was do to the fact he was cranky and sick. His tics would go away with abx in 4 weekish.

 

IMO oppositional beh. is a big PANDAS symptom...it was for us!

 

There were a few parents that have posted that didn't even "know" their real kids personality was until treatment...they didn't realize that oppositional/difficult beh. was part of the dz, just assumed it was their kids personality!

 

yah...i don't know....he wasn't pleasant, and sometimes i felt like i was on eggshells, but when i hear of some cases here, i feel like i cant' really count that as one...

and on the mood thing....i wouldn't say he was miserable you know what, just seemed more pubesant??/ but since starting new regime....he can still be like a teenager, but there are more easliy gotten "good moring mom"'s and stuff like that....that was the first thing we noticed in the first week...

and that was hard to gauge because they are such a mild side product,

 

I'm getting a little distraut, as we are a good 3 weeks into clarith, 20 days post burst and 5 days into augmenton

sleeping has improved, that might be a big one for us,(more solid)

about 2 weeks in we had to refill a tooth and at that time our pollen counts were in the 400's already..

even though we had a worsening by end of 1st week things seem slowly a smidge better

than we started aug about 5 days ago and w/i 24 hour we had a noticable gain again(and i want to attribut that to the aug(not the burst), as in past he reacted well to abx's.

but now i feel like we plateauing....maybe sawtooth , not sure if they are getting worse again...pollen is only going to go up!!

dr k said it might take 4 weeks to seen benefit from burst...but we've had so much interference, even dr t said that....

And i wonder if it's the myco p, if that is just a longer slower haul with tics

and one more,,,if you remember we found out my dh has eleveted aso and antidnase!!!! he starte abx 2 days ago

[Fixit]

I'm so sorry you guys are having PANDAS symptoms again....you've already been through so much!

 

ditto