Are your PANS/PANDAS kids ever symptom-free?

[jph]

Curious. Thanks.

[rowingmom]

Yes, continuously now except for a suggestible (one time) motor tic, DD is pain/psych/neuro symptom free!

[MomWithOCDSon]

To be perfectly honest, no, mine is not. But I think there are many components that likely contribute to that.

 

He appears to have suffered from PANDAS for at least 6 years, and likely longer, before we found someone who would actually grant or accept a PANDAS diagnosis, let alone treat it.

 

So during some key developmental periods, his brain was being wired to "compensate" for that autoimmune onslaught . . . to suppress his anxiety, to find "work-arounds" for his OCD obsessions and compulsions. Undoing that wiring in its entirety is a tall order, and he's a tough customer.

 

But the rest of our story is this: he went from being an entirely nonfunctional kid to a highly functioning one. He is happy. He's engaged, funny, witty, strong, compassionate and focused. He still contends with some anxiety, especially situationally, and he can lapse into OCD behaviors as he attempts to compensate for that anxiety. But he is, as we've been taught to coach him, "handling it." And generally handling it well.

 

Many in the PANDAS/PANS community are after that "100%" or "back to baseline," and I applaud and celebrate every family that's found their way back to that pre-PANDAS point. But in the interest of being fair to those among us for whom that may not be entirely realistic (particularly in the short-term, though I, too, will continue to hope for 100% myself, one day), I just want to say that life is, nonetheless, rich, joyful and limitless. As is my DS's potential. Most people have some "Achilles heel" as they make their way through the world, and this "residual" OCD/anxiety is currently his. But we like to think that doesn't make him "less than;" rather, it contributes to him being "more than:" more compassionate, more kind, more accepting, more grateful.

[bigmighty]

Yes - except when he gets strep (three times in the past six months). Each time he has been on antibiotics for 10 days and once he was subsequently on steroids for 10 days. By and large, he has been in remission for 2 1/2 years.

[MaryAW]

Yes. It gives you a false sense of security sometimes. We thought our DD might be "outgrowing" PANS, and then the grass pollen brought it back; however, it was not as bad as in the past.

 

We did catch her PANS relatively early, 7 months after onset. I'm sure this helped. I also decided to homeschool her to keep her healthier and let her immune system heal. I feel like the two biggest things that have helped are getting her vitamin D level up between 50 and 80 ng/ml and giving the Omega 3 supplements. We noticed incredible improvements with both of these supplements. (She is also on Zithromax).

[qannie47]

My son has done well for 7 months now. However, I do feel that there are residual...like short term memory not great, bed wetting, and can still excite easily but able to calm himself down.

 

I would like to think pandas is gone forever...but I the research just does not support that. He is only 8...

[jph]

Thank you for your feedback. I'm still wondering if kids that still "have" PANS/PANDAS... kids that are not in remission... are the symptoms chronic? I know there are ups and downs and flares, but... my kid has had this for almost 4 years and although he's doing incredibly well on homeopathy, and I expect him to make a full recovery and get to pre-pans eventually, in four years there were only two one-week episodes early on where he was symptom-free. So, I'm wondering if that's the norm.

[nicklemama]

I don't think so but he's gone longish periods with few minor symptoms, like a mild eye blinking tic. He has some mild anxiety all the time. Is that him or residual PANS? He is recovering from his first bout of strep ever diagnosed. This all started in 2009. Flared in anxiety and OCD after the strep. Hasn't gotten terrible......yet. He's 16 days post diagnosis of the strep.

[dcmom]

Yes! I would say we usually average 3/4 year pandas free.

 

My younger one had about two years of continual low level symptoms, but is 100% now. My older went for 3 yrs with no issues, then had an exacerbation- 100% now.

 

We have found steroids (IV) to be a lifesaver!

[kthomas]

DS10 has had PANS for 5 or more years. In the 5 years, this is the first time that I have seen him 98% tic free, urinary frequency free, OCD free and anxiety free. It has been a long, long time since I have seen him so relaxed. That being said, he normally backslides when school starts in the fall. So Fingers are crossed. To me the big change has been finding the source of the infection. He had been on a daily dose of azithromycin, and it was making his PANS manageable, but he still had urinary frequency and tics indicating an underlying infection. So thanks to this forum and the kind parents who answered my call for help, I got contact information for an integrative doctor that suggested that my son had Lyme. IGENEX testing confirmed the suspicion and answered the riddle as to why he kept getting viruses. DS10 is 8 months into Lyme treatment, off abx and progressing. Treatment now consists of herbal abx and supplements.

[chubbermommy]

This is good to know. DS is back on abx after being off them for 3 months and worsening greatly. He's been back on for 1 week today after testing positive for Lyme (before we thought it was just strep and he was on amox). This is really wearing me down. I know it will take time for the abx to start working again and even more time to recover from Lyme but some days feel like an eternity. I'm looking forward to the day where he is (mostly) symptom free. I'm sure he is too.

[rowingmom]

This is good to know. DS is back on abx after being off them for 3 months and worsening greatly. He's been back on for 1 week today after testing positive for Lyme (before we thought it was just strep and he was on amox). This is really wearing me down. I know it will take time for the abx to start working again and even more time to recover from Lyme but some days feel like an eternity. I'm looking forward to the day where he is (mostly) symptom free. I'm sure he is too.

 

Not to hijack the thread, but did you test for coinfections? DD's ticcing was caused by bartonella infection.

[airial95]

I would say yes, my kids are 100% symptom free between infections. Do they still get strep? Yes, and they still react to it, but not as severely as they have in the past. They will flare for a couple of weeks, but remain functional and able to continue with day to day activities - including school, sports, playing with friends, etc.

 

They do not get strep as often now, they tested + just last week for the first time since December, which is a record for us (used to be one or both of them would be positive every 6 weeks or so). The symptoms leading up to the swabs were so mild, we scheduled an apt for my day off last Friday, vs. Tuesday when we first suspected symptoms. And both kids continued with VBS all week with no issues other than my son being a bit hyper (although the sweets shared daily didn't help that), and my daughter being too nervous to perform with the group at the end of the week (which she never enjoyed even pre-PANDAS).

 

Even when we are symptom free, we are always on our toes, looking for signs or symptoms and like I said, flares now vs. 2 years ago are night and day in their severity. Now it's more of an annoying inconvenience than the life altering ###### it used to be.

 

*Edited to add: I will also say that both of my kids have benefitted immensely from CBT for their OCD. My son's onset was at 19 months old/diagnosis at 26 months old - so the OCD really became "normal" for him at an early age - like washing your hands after using the restroom, you don't even think about it - it's just what you do. The CBT was a huge tool in helping us get to 100%. Without it, we would likely still be living with residual, habitual OCD ruling the roost and probably still looking for causes. The biggest thing the CBT did for us though was teach my husband and I how to properly respond to it so we weren't enabling it or making it worse. That was a HUGE benefit. My son is now 6, my daughter is now 8 and both do very well with the CBT techniques that we have learned over the years.

Edited July 17, 2014 by airial95

[chubbermommy]

 

This is good to know. DS is back on abx after being off them for 3 months and worsening greatly. He's been back on for 1 week today after testing positive for Lyme (before we thought it was just strep and he was on amox). This is really wearing me down. I know it will take time for the abx to start working again and even more time to recover from Lyme but some days feel like an eternity. I'm looking forward to the day where he is (mostly) symptom free. I'm sure he is too.

 

Not to hijack the thread, but did you test for coinfections? DD's ticcing was caused by bartonella infection.

 

rowingmom, we tested negative for babesia. And according to my NDs, if we tested for bartonella and it came back negative, it doesn't mean anything. We will treat as if he has it - he will start Biaxin probably in a few weeks, but starting slow on the Augmentin, don't want to hit him with everything at once.

Edited July 17, 2014 by chubbermommy

[riffleshell]

This thread caught my eye, as my son was utterly symptom-free for two months, but appears to be relapsing. Boy am I ever disappointed.

 

My son developed PANDAS in October 2013 after a diagnosed strep infection. A second round of antibiotics took care of all obvious PANDAS symptoms, but DS remained short-tempered and more "ADHD" than before. That went on for months. I was not treating with long-term or prophylactic antibiotics as I thought he would recover more fully with time. But in the spring, he had scarlet fever and regular strep in quick succession. Treating those obvious infections with Cefdinir "cured him" completely--left him 100% symptom free at any rate.

 

Unfortunately, he relapsed this week. I think this disorder is really hard to beat. My son was diagnosed and treated immediately and here we are eight months later still in its grip.