how accurate is pandanetworks.org page?

[madisonjar]

I am curious I have been researching chances of relapse and this page seems to indicate that if given treatment for a year (did I read that right?) or is it the stats were taken a year after treatment...that there is a very small chance these children will have relapses if the original strep or whatever bug is taken care of..I believe she said 25% had a very minor pickup in symptoms with only 2% of the 200 have a complete relapse...so how accurate is this? does anyone have facts and percentages of what the chance of a relapse is? I am doing everything I can for my boy and just am looking at the future....hoping. He has come back around to pretty much 100% normal, we have completed one month of Augmentin with at least 3 more to go...This has worn me down and made me depressed...I pray for all your childern and hope we can put an end to this and let these kids get back to their lives without ocd and tics.

Edited February 27, 2015 by madisonjar

[nicklemama]

I'm not sure about the accuracy. The big if is IF the infection causing the PANS is taken care of. Very small chance of relapse? Mmmmmmm, not so sure about that. Maybe in a child who had PANS caught and treated right away. If it goes long enough to become autoimmune, I believe you are stuck with it. 2% with complete remission sounds right to me. 25% have minor symptoms, I agree. Most of us here are the rest. We are the 73% who have not found complete remission or have only minor symptoms. It has taken me 5 years to get my son to have only minor symptoms. That's the reality of this disease.

[fuelforall]

I can only say this, if you are seeing progress with abx, then you can expect to have long term abx prescribed prophylactically. Any arguments here?

 

Who gets better, who gets well? We are all individuals and treatments may have partial success and make us complacent. I speak from experience there. You just have to be vigilant.

[madisonjar]

I'm not sure about the accuracy. The big if is IF the infection causing the PANS is taken care of. Very small chance of relapse? Mmmmmmm, not so sure about that. Maybe in a child who had PANS caught and treated right away. If it goes long enough to become autoimmune, I believe you are stuck with it. 2% with complete remission sounds right to me. 25% have minor symptoms, I agree. Most of us here are the rest. We are the 73% who have not found complete remission or have only minor symptoms. It has taken me 5 years to get my son to have only minor symptoms. That's the reality of this disease.

sorry I miss wrote that, it is 2% probability of relapse I have since edited it, 73% is the percentage of non relapsing patients.

[mommybee]

My understanding is that PANS is a misfired immune response so all cases are autoimmune in nature.

 

It's also important to make the distinction between the words "relapse" and reinfection. Susan Swedo talks about the illness as one that relapses and remits, rather than one that waxes and wanes (as is typically the case with OCD and Tourettes when kids are stressed). When reinfected, a child in the PANS cohort can experience symptoms again.

 

This has certainly been our experience. When healthy (or uninfected), my child has no PANDAS symptoms. NO OCD. NO tics. No separation anxiety. No behavioral regression. But when he catches strep, his symptoms return in spades-- and typically overnight. He will wake up in the morning a complete basket case after being perfectly fine for months, or even years. The last time this happened, we had the benefit of experience and got him on antibiotics right away. We turned the worst of the symptoms around quickly (in about 48 hours). However, executive function, short term memory deficits and slowed processing took about four months to resolve completely. Because of the recurring pattern, we made the decision to treat prophylactically.

 

According to the research, the use of prophylactic antibiotics prevents reinfection in almost all cases.

 

Here's the link to a recent talk Dr. Swedo gave on the subject for those who are confused.

 

[nicklemama]

2% chance of relapse after first treatment? I'm wonder where they got those stats. I'd say they are way off. Of course we are a mostly homogeneous group here with relapsing kids.

[mommybee]

I suspect that the 2% relapse rate may reflect not only the strict diagnostic criteria used for selecting the PANDAS cohort, but also the use of prophylaxis. Just the same, PANDAS doesn't wax and wane. It remits and relapses. This really is an important distinction for diagnostic purposes.

[MaryAW]

You have to distinguish between PANS and PANDAS. PANDAS is caused only by strep. If diagnosed with PANDAS and treated immediately, maybe those numbers would be accurate. But how many children are actually diagnosed and treated immediately? I agree with everyone else, this is ongoing. I have heard that the blood brain barrier is breached in these children and in order for them to heal, the BBB needs to repair itself. Also, Dr. Swedo said at a conference that our children will outgrow this. I asked her when, and she said by their early 20's. I'm assuming that's if you are treating them, and they are not just spiraling downward.

 

FYI - My DD's best benefits came from getting her vitamin D level up in the recommended 50 - 80 range and supplementing with the Omega 3's. Use high quality supplements only. My DD is well on her way to healing. We have many months symptom free and the flares now are very minor.

[airial95]

It's important to remember that the "stats" you're quoting are based on a parent survey that was initially done by pandasnetwork, with a follow up survey a few years later. This is not based on any peer reviewed, double blind, scientific research.

[mommybee]

Dr. Swedo's information doesn't come from parent surveys. She followed the initial cohort and those children got better, most with antibiotic therapy alone. However, a small number needed immune modulating therapy, CBT and/or psychotropic medication to maintain full functioning.

 

I spoke to her yesterday and asked about whether my child who is now in remission would outgrow the illness and she said that he would not. Because he so closely fits the Rheumatic Fever model, she said that we could assume that future strep infections could trigger an encephalopathic reaction. She suggested that we follow the Rheumatic Fever protocol which is prophylaxis until age 21 and villigelence there after. She said prophylaxis is necessary for people who go into fields where they work with children (medicine, teaching, etc.) and for parents of young children.

 

Also of interest from the medical conference on PANDAS was the advice from Dr. Cooperstock to use prophylaxis for PANS. He said that he prescribes tamiflu to his PANS patients when a member of the household gets the flu.

Edited March 15, 2015 by mommybee