If PANDAS, what should first step be?

[Familyof5]

Hi,

Been hanging around here for a while, reading more and more. As I've read, I keep thinking, "what if my kids have PANDAS" and I didn't pursue it? First, a short history: I have three kids all with movement and vocal tics. They have also had all kinds of other issues that I read about all the time here. My oldest is 11 and has been ticcing since age 2. She had a PANDAS test run by pediatrician when she was 8 that he said came back negative. So, until now, I never gave PANDAS a second thought. Now, my ds 8, has tic disorder, and dd 6 also has tic with major vocal tics and OCD. My husband and I also became ill about the same time with neurological disorders and more. Found mold in our home of 10 years, moved out, started getting better (been out of moldy home for just over a year). We still all have symptoms, the major symptoms being the movement disorders and OCD for my 6 yr old. Does anyone think this could be PANDAS? All of my children had chronic ear infections, sinus issues, but I don't think that anyone has ever had strep. Once we removed ourselves from the mold, the chronic sinus issues, ear infections, etc. disappeared. In fact, my children barely get sick with even a cold anymore. The movement disorders and the OCD symptoms never came on suddenly, it was definately gradual.

 

So, I ask again, does anyone think this sounds like PANDAS? And if so, where do I start to get treatemet? My pediatrician said PANDAS test on my dd8 was negative, but I've never had the other two kids tested. ANY ADVICE?

[peglem]

Well, there is no "PANDAS test" so no such thing as a negative one. I'm presuming that it was an ASO titer test- lots of PANDAS kids have low ASO titers. Also, many PANDAS kids do not have typical strep symptoms that would alert anyone to check for strep.

 

I can't say if your family (you and hub have symptoms, too?) has PANDAS- its a clinical diagnosis, but the mold certainly sounds like it was an issue! I firmly believe that anyone with neurological issues should try to identify the underlying cause, be it PANDAS, Lyme, mold, or whatever. Sometimes you may end up struck just treating symptoms...but, I'd try to rule out infectious agents that can be treated so health can be restored.

 

Here's a basic flowchart that more or less lays out a strategy for investigating:

http://www.latitudes.org/forums/index.php?showtopic=6688

[smartyjones]

family -- i don't know how much research etc. you've done on pandas . . . but, don't forget pandas is a subset of pitands -- pediatric infection triggered autoimmune neuropsych disorder. you're children may be displaying pandas like symptoms but may not have strep as the trigger -- perhaps it was the mold, or some other infection. or, it could have been strep, but you've never caught it on a strep test -- not done it at the right time or something.

 

this is from the abstract of the article mentioned today. . . The immunologic culprit receiving the most interest has been GroupA Streptococcus (GAS)

 

my opinion from being at the OCD conference and hearing the drs speak. . . strep has the most interest but it's not the only known pathogen to cause neuropsych issues. unfortunately, there are many more.

 

[Phasmid]

One of the other possible culprits is another bacterium called Mycoplasma pneumoniae. It is documented in the literature in several case reports as being responsible for causing serious neuropsychiatric symptoms. In addition to a horrible Strep. pharyngitis history, my son has documented rising antibody titers to Mycoplasma.

 

One great thing our newest PANDAS doc did for me recently was to place my son only on penicillin, thus helping to isolate the causative agent. There is really no way to be certain, but since he has developed symptoms while on penicillin, we now can say that it must not be Strep that he is reacting to AT THIS TIME (it was definitely Strep in previous relapse events). Some say that penicillin alone may not be enough to take care of certain Strep strains. In my opinion, while this may be true, it is also likely, maybe more likely, that a different infectious agent is at work, such as Mycoplasma. The fact that my son responded immediately to Flagyl, vancomycin, and then biaxin (clarithromycin) HINTS at Mycoplasma.

 

My point is that there is evidence as reported in the literature, that other bacteria may be able to trigger en equivalent immune response. Other folks have had luck treating for Lyme bacteria. So... first step would be to bring some literature to your pediatrician in the event he/she isn't already knowledgeable, and to ask for a blood test that could show elevated antibody titers to Streptococcus, Mycoplasma, or a Western Blot for Lyme.

 

The review paper that was just posted here at this forum summarizes what has been published on infection triggered neuropsych. disorders, including Tourette's/tic disorders.

 

 

 

 

 

 

[thereishope]

When I read your post, I thought "what if they are allergic to mold?". Even though mold can lead to problems, if someone is allergic to mold and constantly surrounded by it, that would also worsen any pre-existing disorder, if it should be present. this would also explain why your children improved now that they are out of the house.

 

you say you do not have documented strep, however, ear infection and sinus infections can becaused by strep. Also, how often were they actually swabbed for strep earleir in life? So many PANDAS kdis do not get symtpoms of strep taht they may have had and you simply had no idea and no one really saw a reason to test.

 

As the other have said, there is no test for PANDAS, so your doctor was mistaken. Also, there an be other things causing the symptoms. It is not uncommon to have more than one child with PANDAS either, so don't let that convince you not to look into it.

Edited November 10, 2010 by Vickie

[EAMom]

An easy first step is to get EVERYONE in the household throat cultured (do the 72 hour culture if the rapid is neg). PANDAS kids can get strep with NO OTHER SYMPTOMS (no sore throat, no fever) aside from beh. changes/tics.

 

While neg. throat cultures don't 110% rule out strep (it could be hiding in the sinuses or elsewhere), it is an important first step. Also, PANDAS children (even those on antibiotics) will react if a family member is strep positive (even if that person isn't symptomatic.)

 

It's also possible that your children don't currently have strep but are reacting to other illnesses (Pitands). My PANDAS dd would react (even on abs) after getting non-strep illnesses (fifth's, H1N1). Other PANDAS kids react if they have allergies or vaccines.

 

I should also add that LOTS Of PANDAS kids have low strep titers (ASO, anti-dnase b ). Mine did, despite positive strep cultures (sister was positive too) and PANDAS symtpoms severe enough to require hospitalization. Strep titers are NOT a test for PANDAS (many docs are confused about this. Unfortunately, B. Maloney's book didn't help in this regards.)

 

Where do you live? Maybe someone can rec. a doc.

Edited November 10, 2010 by EAMom