PANDAS question?

[Laurensmom]

Often times, a few days before my daughter exhibits classic signs of illness, she develops an increase in tics. Is this common in PANDAS? Or is this just a TS thing?

[emmalily]

Often times, a few days before my daughter exhibits classic signs of illness, she develops an increase in tics. Is this common in PANDAS? Or is this just a TS thing?

 

I'd say that it's a pandas thing because my OCD symptoms seem to increase as i'm coming down with something.

[thereishope]

With PANDAS and PITAND, for some kids once that initial exacerbation occurs, other subsequent assaults on the immune system will make PANDAS symptoms increase.This includes viruses, other infections, allergies, etc.

 

To quote Swedo...

 

Two clinical notes should be made. First, not all

symptom exacerbations were preceded by GABHS infections;

viral infections or other illnesses could also

trigger symptom exacerbations. This is in keeping with

the known models of immune responsivity—primary

responses are specific (e.g., directed against a particular

epitope on the GABHS), while secondary responses

are more generalized. Thus, the lack of evidence for a

preceding strep infection in a particular episode does

not preclude the diagnosis of PANDAS.

 

I think some PANDAS kids' PANDAS reaction is more sensitive than other physical symptoms of illness. Last year, my son's PANDAS increased a week before the physical signs of allergies. The allergies were the trigger.

Edited April 25, 2010 by Vickie

[Laurensmom]

Vickie, I also wondered about allergies because my daughter gets an increase in tics every spring. Thanks all for the info.

[simplygina]

Often times, a few days before my daughter exhibits classic signs of illness, she develops an increase in tics. Is this common in PANDAS? Or is this just a TS thing?

 

Pretty common with PANDAS. My son's last exacerbation started with a sudden increase in tics. He always had some tics and some OCD going on, but it is usually very mild and manageable. In February he started exhibiting pretty much every tic he's ever had all at the same time (usually he just has one or two and seems to cycle through them). I didn't know what to think. That was on Saturday. Sunday night he told me his throat and ear hurt. Monday morning we went to the dr. and he had an ear infection and a sinus infection.

[kimballot]

Do behaviors precede the infection? They did for us.

 

When my son was younger he always started with bedwetting, then it went to hyperactivity and biting (which we later determined was due to compulsions), then night terrors, then gagging on breakfast... then stuffy nose. Rarely a fever. It always turned out to be sinusitis. After the first few rounds of this I started calling the ENT when the bed wetting and biting began. On ENT exam his sinuses looked fine, but then a few days later - bam - stuffiness and sinus infection. One time when I called with bedwetting and biting the ENT met us at the hospital and we did a sinus CT scan and, sure enough... sinus infection. After that they started moving him from prophylaxis to high dose Augmentin when his behaviors became unmanageble. We did not know it at the time, but we were treating his PANDAS by trial and error.

 

Now that he is 13 I am seeing the physical illness first. Perhaps because he is better at managing the PANDAS symptoms (and hiding them) himself.

Edited April 25, 2010 by kimballot

[kimballot]

Vickie- I don't want to hijack this thread, but could you tell us where that Swedo Quote was from? I need it! (We have never had high strep titers or a positive throat culture)

 

 

 

Two clinical notes should be made. First, not all

symptom exacerbations were preceded by GABHS infections;

viral infections or other illnesses could also

trigger symptom exacerbations. This is in keeping with

the known models of immune responsivity—primary

responses are specific (e.g., directed against a particular

epitope on the GABHS), while secondary responses

are more generalized. Thus, the lack of evidence for a

preceding strep infection in a particular episode does

not preclude the diagnosis of PANDAS.

[thereishope]

I'm sorry. I usually include links with quotes...

 

http://intramural.nimh.nih.gov/pdn/pubs/pub-3.pdf

 

It's her landmark paper "Pediatric Autoimmune Neuropsychiatric Disorders

Associated With Streptococcal Infections:

Clinical Description of the First 50 Cases"

[thereishope]

With us, it goes both ways. When he had H1N1, it was H1N1 symptoms first, then a PANDAS blip about 3 or 4 days after the fever broke. When it was allergies, it was vice versa. PANDAS first, then allergy symptoms. It seems with my son the further he got from the last strep infection, the PANDAS as a result of non-strep calmed down. In 2009, when he was only a couple weeks into recovery, those allergies really sent him overboard.

 

I am happy to say that he handles viruses and allergies better now with no PANDAS surfacing. I pray that it stays that way!

 

 

Do behaviors precede the infection? They did for us.

 

When my son was younger he always started with bedwetting, then it went to hyperactivity and biting (which we later determined was due to compulsions), then night terrors, then gagging on breakfast... then stuffy nose. Rarely a fever. It always turned out to be sinusitis. After the first few rounds of this I started calling the ENT when the bed wetting and biting began. On ENT exam his sinuses looked fine, but then a few days later - bam - stuffiness and sinus infection. One time when I called with bedwetting and biting the ENT met us at the hospital and we did a sinus CT scan and, sure enough... sinus infection. After that they started moving him from prophylaxis to high dose Augmentin when his behaviors became unmanageble. We did not know it at the time, but we were treating his PANDAS by trial and error.

 

Now that he is 13 I am seeing the physical illness first. Perhaps because he is better at managing the PANDAS symptoms (and hiding them) himself.

Edited April 25, 2010 by Vickie

[kimballot]

Gracias I knew I had it somewhere and I need that for tomorow!

 

I'm sorry. I usually include links with quotes...

 

http://intramural.nimh.nih.gov/pdn/pubs/pub-3.pdf

 

It's her landmark paper "Pediatric Autoimmune Neuropsychiatric Disorders

Associated With Streptococcal Infections:

Clinical Description of the First 50 Cases"

[T_Mom]

With PANDAS and PITAND, for some kids once that initial exacerbation occurs, other subsequent assaults on the immune system will make PANDAS symptoms increase.This includes viruses, other infections, allergies, etc.

 

To quote Swedo...

 

Two clinical notes should be made. First, not all

symptom exacerbations were preceded by GABHS infections;

viral infections or other illnesses could also

trigger symptom exacerbations. This is in keeping with

the known models of immune responsivity—primary

responses are specific (e.g., directed against a particular

epitope on the GABHS), while secondary responses

are more generalized. Thus, the lack of evidence for a

preceding strep infection in a particular episode does

not preclude the diagnosis of PANDAS.

 

 

 

I sure wish THAT Swedo quote was on the NIMH website! It is in direct contradiction to what so many doctors told us...time again, that our d "couldn't have Pandas" since she did not show active strep at the time of that particular exacerbation (which ever exacerbation she was in at the time!) ... We had to try to explain and explain the above as it contradicts the NIMH website--

Edited April 26, 2010 by T.Mom

[Laurensmom]

Such a wealth of info here, thanks very much guys.

[EAMom]

Often times, a few days before my daughter exhibits classic signs of illness, she develops an increase in tics. Is this common in PANDAS? Or is this just a TS thing?

 

For us PANDAS symptoms sometimes precede other signs of illness, not always. For example when dd was 4.5 years she had a dramatic onset of daytime urinary frequency (Urinalysis/urine culture was neg, so no urinary tract infection) about 3 days before several days of high FEVER (in hindsight, I realized this was likely strep, but no throat culture was done b/c the doc didn't see a red throat.)

Edited April 26, 2010 by EAMom