Does my other son have PANDAS?

[Rain]

Hi all,

 

My DS11 has PANDAS (exact onset unknown - can recall urination issues going back several years - definite OCD symptoms in October 2010 - debilitating OCD by December 2010 - diagnosed PANDAS April 2011 - got IVIg in August 2011 - doing relatively well currently - knock on wood).

 

I don't know what is wrong with, or what to do about, my DS9. Here is his story.

 

Early on in third grade, probably around October 2010, his teacher called us in for a conference because of his poor performance in school. Prior to that he always did fine - never outstanding - but solidly "OK." The teacher claimed lots of things were going on, but most obvious was his handwriting was completely illegible. He never had good penmanship, but this was really really bad. With all the issues going on with our other DS (who in hindsight was having a PANDAS exacerbation at that time), we basically thought he was just trying to get attention. Also, he is young for his grade, and we have "always" questioned our decision to send him to kindergarten early, versus holding him back a year. But, we think he is really smart, and very social.

 

The third grade teacher demanded learning disability testing. The test came back showing that his IQ was high, and he the testers found him to be very cooperative and capable, "Yeah his handwriting is bad, but when he takes his time he does fine - he's just a typical boy, blah, blah." We smugly looked at the teacher, reassuring ourselves that it was a bad teacher, not our kid. With all that was going on with our other PANDAS kid, we considered the exercise an annoying, unnecessary sideshow.

 

Now, in fourth grade, things are just as bad if not worse. He has a teacher that we really like (who taught our other son during last year's PANDAS stuff with him), so we know it's not the teacher this time.

 

DS9 had his tonsils out when he was 5 - not because of infections, but because they were really big and interfering with his breathing during sleep. He has no known strep infections. In July 2011, we had his strep titers tested, which were sightly elevated, but nothing alarming. December 2011, three weeks ago, his titers had declined to the normal range. He has had on and off urination issues his whole life. But, with both kids and urination issues, we sort of just decided it was "normal." We just wash a lot of underwear. ;-) He has always had seasonal allergies and takes Zyrtec during spring and summer (we never "tested" for allergies, but they are obvious, so his Dr. recommended the Zyrtec without tests).

 

Behaviorally, he is getting worse - he has started banging his head in the wall when really frustrated, usually about school work. He has started getting lots of anxiety about his school work. Today, we had to get him from school because he got in "trouble" and panicked about what our (his parents') reaction would be, and refused to go to lunch. We're not that hard on him. We suspect (due to a partial confession) the real issue was that he was worried about what his peers would say about the incident at lunch and did not want to face them. Whatever the cause, it was an uncharacteristic disruption to his (and our) day.

 

He is in occupational therapy for his writing. I can't tell if it is helping. He enjoys it, so certainly there is no harm! His handwriting is better when he slows down, and his grip is improper. (BTW - I gave the OT the "PANDAS and OT" article that someone on this forum posted. She was appreciative and interested, but it really does not affect what she does.)

 

Anyhow, his self esteem is so low, and declining. I need to help him.

 

What should I do? I'm thinking of asking for a litany of test: lyme, mycoplasma, allergies. What else? Do we look for strep in the gut or on his skin - or are watching the titers enough? Do I need to take him to Dr. K? Acupuncture? Diet? Is it PANDAS? Is there another reason a kid would suddenly be unable to write legibly (is it just a poor grip and the fact that he tries to go to fast)?

 

Any suggestions are appreciated.

 

Thanks!

[smartyjones]

hi rain. there are quite a few of us on here that have multiple pandas/pans children. for us, ds7 presented 3 yrs ago as pretty classic. ds9 weathered the storm for about 2 yrs as far as reacting to all that was going on with his brother. then he started with separation issues (would follow me from room to room almost on my feet), bad thoughts at night, exercise-induced asthma. he had high titers. i remember saying to dh, 'are we just waiting for him to fall apart before we take him to specialist". i guess we were b/c the next week, his nighttime bad thoughts were extreme.

 

around that time, at a support meeting -- i think the numbers are right -- we had meet about 6 months prior about 1 child, that next meeting 3 of 4 of us were discussing siblings also.

 

ds7, my pans child, would likely have been treated only behaviorally if we never discovered the real causes. ds9, definitely would have been and possibly would have suffered even more b/c he was flying more under the radar.

 

this yr, ds7 has had trouble with school -- basically b/c they were thinking he was a regular kid b/c 90% of the time he is, with 10% extreme anxiety. but it's a 10% that cannot be glossed over. at the same time, ds9 had a sinus infection and was on abx twice. with all going on with ds7, ds9 began acting troublesome -- trouble with some schoolwork, impulsive activity, social anxiety. it's impossible to separate out what may be biologically/infection based and what may be psychologically situationally induced. from our experience, i think it's dangerous to lean into solely one -- it should be looked at as likely affected by both.

 

i definitely advise to take the sibling to your pandas dr if you have ANY concerns, even subtle ones. (JMO -- i don't think the concerns you describe are subtle)

[3boysmom]

We have 3 boys being treated and if it weren't for the extreme overnight disfunction of our first child, then I would never had known why the other 2 boys were having issues. We caught them early before the train wreck. Dr. B and Dr L are the ones that forced us to be honest with ourselves and pointed out a high sibbling rate. Each son had very different things going on. Also, tonsils and admoids can and do often grow back...maybe I'm wrong about tonsils, but I know our son had his admoids grow back and removed again. Ok about those sinuses / alergies.... One son was found to be carrying strep in his sinus cavities and the 3rd child tested negative for strep in his throat but Dr L asked us to culture the removed tonsils and..... Positive for strep. Your issues don't seem mild especially if you believe he has a compitent and reliable teacher. Our other 2 boys are doing GREAT with antibiotics only! I wish we would have known about this illness for the 1st son as he needed / needs IVIG

[Rain]

Thank you so much. I'm still not sure what to do. I don't really have a PANDAS doctor. I took my DS11 to Dr. K, but then he received IVIg treatment (based on dr. k's recommendation) at our local hospital - under our pediatrician direction. Our pediatrician wants to help, but just doesn't know what to do (and may think I'm a little nuts).

 

My DS9 has been great this weekend - totally 100% his old, sweet, compliant self. DS11 also continues to do great. Part of me want s to leave "good enough" alone. But, you're right, we need to nip this in the bud - or we're just waiting for the train wreck.

 

Oh, I did not mention my DS3, who had uncharacteristic separation issues this weekend. Here we go again? Is PANDAS/PANS everywhere, or do you just imagine it is everywhere once you know about it...

[airial95]

I too have 2 PANDAS kid - my son is the more extreme, we've been dealing with him for about 2 years now. We suspected my daughter about a year ago, but it wasn't until last summer that her symptoms became prominent enough (and with corresponding positive strep cultures thanks to our being diligent about getting the whole family tested whenever my son tested positive) that it went from me being paranoid about it happening again to our pediatrician concurring that it was happening.

 

Dr. Muprhy's group confirmed our pediatricians initial dx just a few weeks ago.

 

I'm not as up to speed on all the research papers as some of the other moms on here - but I'm fairly certain it was Dr. Muprhy (from my recollection of discussions with her) that made a correlation between siblings. If I remember correctly, it relates to a family history of autoimmune disease, RF or recurrent strep. The research of hers that noted this is what got our pediatrician to ackowledge that it was possible to have two.

 

In our case, our daughters symptoms were so mild, had our son not already been dx with PANDAS and we were so well versed in the particulars, we might have missed it. (I'm not going to lie, we may have missed it sooner b/c her symptoms were so mild they were manageble - compared to our son - who is NOT!)

 

Her symptoms tend to clear with a 30 day course of abx with little to no residual symptoms until another infection comes along - which was 4 times last year!! With our son's most recent infection - she's reacted to his exposure - which is a first for her, our son is very sensitive to exposure, it's the first time we're seeing it in her.

 

What I would tell you is this - it IS possible that both of the kids are struggling with PANDAS, or PITAND/PANS - whatever you want to call it these days. There is research out there supporting multiple cases among siblings (maybe someone could post the reference?)

 

Go with you're gut - if you think something's up, investigate it. Definitely start journaling your other son's symptoms and behavior. It helped usdetermine what was going on with our daughter when we were able to see the symptoms correspond with the strep infections. You may be able tio identify another cause for the flares absent of strep (allergies, for example, which can make PANDAS kids worse.)

 

My son DOESN'T cleare with abx, it takes him quite some time to come out of an episode long after the strep is cleared - so also consider that this may still be the immune response to an infection that was treated but has been cleared (my son has never had an elevated titre, even with multiple positive cultures.)

[Rain]

Thank you everyone.