Viruses and Infections post Strep - do they trigger PANDAS Symptoms

[petie_tk]

My son was doing great about 2 months post Strep from Antibiotics, Steroid Burst and low doses of an SSRI and an Anti-psychotic. The PANDAS OCD was gone for about 1 week and then he got a fever and virus that caused the PANDAS symptoms to get exacerbated again. Does anyone know about this syndrome? Do the symptoms recur with every virus post PANDAS even if it's not a strep throat infection. How do you permanently get rid of PANDAS? How do you differentiate between the mental/emotional triggers and the PANDAS triggers?

[dcmom]

Petie tk-

 

You will find a few different answers to these questions. I will give you my experience...

 

I have talked to some parents who have pandas kids that are NOT triggered by other illnesses.

 

We have not found this to be the case for us. I have two daughters who were clearly triggered overnight by strep. They get mainly ocd. They both are able to achieve 95 to 100% recovery in between episodes from a combo of immune modulation and therapy. We have enjoyed long times between episodes: 7 mos, 9 mos, 14 mos- you get the idea. BUT both girls have been triggered by non strep illnesses: H1N1, common cold virus, and sometimes even heavy exposure to illness. Thankfully, the do not get sick too often.

 

When this happens, we see either what we call a "bump", a short lived, mild-ish increase in symptoms. We handle this by increasing antibiotics, dosing regularly with advil for 5 days, rest, routine, healthy food, no stress, etc. Sometimes we see a more dramatic episode, which usually happens "overnight" again, with a continued decline. Things end up getting pretty bad, pretty fast. When this happens we use an immune modulation therapy, ie, steroids, to help pull them out of it- like you did.

 

With a great TEAM of doctors, and quick action, my kids have been able to live mostly happy, normal lives since diagnosis. I certainly worry A LOT more....

[LNN]

I too have a Pandas son who was triggered by more than just strep. In his case, it was lyme. But what I've found for him is that beyond the triggers, he had an underlying zinc deficiency that kept his immune system from working strongly. Now that we're supplementing zinc (and magnesium and a few other things), his overall health is better and his body and brain are starting to work the way they should.

 

I know right now you must feel like you're in the middle of a mine field - you can't possibly protect your child from every germ out there. (I once would've given my last dime for a "boy in the bubble" suit for my son). If you're seeing triggers beyond strep, it's worth working with a doctor who will "look under the hood" and look at the immune system, nutrition, labs to check for vitamin/mineral deficiencies, etc. For my own family, we've only made sustainable (don't know about permanent yet) progress by supporting foundational issues like the zinc (plus on-going antibiotics for lyme).

 

Your best bet is to find a collaborative, inquisitive doctor to help you look at the unique aspects of your situation. (my personal bias is towards DAN! and integrative doctors).

[MMWG]

For us, the answer is definitely yes. Our initial episode (well, probably not, but our episode that led to diagnosis) was triggered by strep--and had a positive strep culture. The second did as well. After that, it was game on. We had a reaction from an ear infection, a reaction when someone we were with had the flu (though our son did not have it, nor did he come down with it)--pretty much anything viral or bacterial can trigger his PANDAS. If you read Dr. T's comment to the WSJ article--thread above---it notes that the docs are finally realizing it is not just strep--it's all kinds of things for many kids.

 

Our doc said the current thinking is that viruses and bacteria are now "toxins" to our son--that he is so sensitive to them that he can detect them before any culture or test would or could. That once his body senses the toxins, he has a neurological reaction.

[tpotter]

For us, the answer is definitely yes. Our initial episode (well, probably not, but our episode that led to diagnosis) was triggered by strep--and had a positive strep culture. The second did as well. After that, it was game on. We had a reaction from an ear infection, a reaction when someone we were with had the flu (though our son did not have it, nor did he come down with it)--pretty much anything viral or bacterial can trigger his PANDAS. If you read Dr. T's comment to the WSJ article--thread above---it notes that the docs are finally realizing it is not just strep--it's all kinds of things for many kids.

 

Our doc said the current thinking is that viruses and bacteria are now "toxins" to our son--that he is so sensitive to them that he can detect them before any culture or test would or could. That once his body senses the toxins, he has a neurological reaction.

 

 

At the TX conference, several of the docs said that it is an autoimmune reaction that causes the symptoms, not the bacteria itself. Basically, an abnormal response is created to the strep (or other infections if it is another infection that is triggering everything), and the antibodies attack the basal ganglia instead of the antigen. This autoimmune reaction appears to occur with any and all infections, colds, viruses, flu, etc. once the initial reaction has occurred (the body's memory cells remember the basal ganglia as "the bad guy.")

[T_Mom]

gee, I hate to have to reply to this thread, but YES our two daughters both react (OCD symptoms and ticcing at times) to any illness.

tpotter has hit the issue -- "It" is an auto-immune reaction which causes the symptoms.

 

In our case, my two daughters have clearly escalating symptoms when simply exposed to strep. Primarily OCD. As with DCMom's kids, they have gotten better with immune modulation treatments and antibiotics.

We even had one year (out of the last 4) in which they both had essentially no symptoms...

 

Both girls have been triggered by non-strep illnesses, and by strep illnesses (much more severe and long lasting reaction when it is strep) in others.

Note: neither of the girls have had a pos-strep test that we have "caught".

[EAMom]

Our PANDAS dd has reacted (PANDAS symptoms) to:

1) strep (when she herself is positive)

2) a family member with strep (even an assymptomatic carrier) and even when PANDAS dd has been on full-strength prophylatic antibiotics

3) many other non-strep illnesses including H1N1, fifth's, other fever type illnesses

4) and finally, to her sister's illness. Sister was sick with a viral illness fever for several days this fall. PANDAS dd did not get sick from her sister but she did have a spike in PANDAS symptoms (mainly tics in that situation), so her immune system was responding, even though she herself did not get "sick" from this fever/virus.

 

Daily Azith. has prevented our PANDAS dd from repeating the horrendous PANDAS experience of 2nd grade (hospitalized for acute food refusal/malnutrition thanks to PANDAS). However, over the past 4 years, she since she has reacted to viral infections so we have done a few HD IVIG's to help get her back to baseline. So far, she is pretty good (90%) and functional, but not symptom free. She is in the 6th grade now, and hopefully she will be one of the lucky ones that will outgrow PANDAS.