Are there any PANDAS kids thriving?

[Broo100]

Are there any PANDAS kids out there that have outgrown their symptoms? That are in school getting good grades and thriving and living happily amongst the non-PANDA world? Are there mild cases of PANDAS or can a mild case turn into a bad one? My son got caught very early and treated and now just has some vocal tics but I am in fear that "the next one" could be worse. Any happy stories out there? Love to all fellow Panda parents

[colleendonny]

My DD6, is doing well right now, and is in a flare. She had overnight onset back in October 2011, when she was 4. She stated abx 6 weeks later, so we caught it relatively early. (I knew what it was 5 days in, but waited for our appt. with Dr. B.). This is her 3rd flare. She became sick with what I think was the flu on Christmas Eve, and by the day after Christmas, she said that her PANDAS was coming back. (Intrusive thoughts and her brain repeats "bad words" repeatedly). We immediately added in azithromycin in addition to her treatment dosage of Augmentin. And now, 1 week later, her symptoms are still mild. She will only mention her bad words or thoughts if I mention them. Which I don't often ask, but I like to know, just for my records.

 

For what its worth, I think things do and can get better. Just many of the kids who are doing well, their parents aren't here or on the FB pages as often. They are trying to move on and not be reminded of pandas.

[beeskneesmommy]

YES! We went thru ###### for agaes - he was dx at 2.5, but fell apart really badly after a a T&A just before his 4th birthday. He has been on daily abx, the best of which is a combo of Augmentin and Azith, for over 2 years. He turned 6 in Sept. Although he was doing very well, he still had some symnptoms and flares were pretty bad when he was exposed to Strep and other illnesses. We did a round of IVig in Sept. and he is much better. He still has mild flares, but the overall improvement is huge. His vocal tics have practically disappeared, except when he is really tired. He is in kindergarten and reading on a 4th grade level. his teacher says he is way ahead in all academics. he has a great peer group and when I drop him off at school I hear several boys say "Brooks is here"! as they run over to greet him. He is happy, well adjusted and on his way. We continue the abx and will start tapering off in the spring. We may do another round of IVig as he still has evident flares when he is exposed to infection or gets sick himself. However, if IVig was not available, we could live with the current situation. Warm wishes for 2013! -Kath

[dcmom]

YES!

 

I have two daughters with pandas. Both had overnight onset almost four years ago. They are ages 12 and 9. Both have had pex, abx and steroids.

 

Both are happy, well adjusted, blossoming, with great grades and lots of friends. They are happy at home and at school. When "healthy" they take no meds, no supplements.

 

Both still have pandas, and flare with illness (and once and a while for unknown cause). During a flare, they get abx, and motrin or steroids. Thankfully their flares are less often and much, much milder. We also have done fairly extensive, quality therapy- and have learned better ways of dealing with pandas as a family.

 

I have come to the acceptance that pandas may always be with them (although, thankfully, my older dd hasn't had an episode to speak of in well over a year). I have grieved over this, a lot. But we are in a much better place. They are and will, live totally normal lives despite the pandas. We liken it to living with food allergy, or diabetes. Yes, it sucks, but it is the reality for a lot of kids, we deal with it and we live our lives.

 

My advice, is to treat each exacerbation as aggressively and quickly as possible, AND not to accomodate them.

 

Hang in there- for us the first year was the worst.

[MomWithOCDSon]

Yes! Unfortunately, my DS was diagnosed pretty late in the game . . . at age 12 after having suffered since at least age 6 and we think considerably earlier than that . . . 3 years old, likely. It's just that the OCD didn't show up recognizably/clinically until he was 6, and because he's asymptomatic in the classical sense with regard to strep, it took us another 6 years to establish a relationship and get someone to take us/PANDAS seriously.

 

In the depths of the PANDAS, at 12, he was completely non-functional, curled up in the fetal position on the floor of his room, fearful of everything and everyone. Not attending school, had no relationships outside of family and doctors, couldn't undertake the most innocuous task -- showering for instance -- without having a meltdown because of all the mental and physical rituals he felt compelled to undertake while, at the same time, knowing that he wasn't supposed to. He was a blubbering, insomniacal, fragile, shell of who he really is.

 

Today, he still has some OCD and maybe, on some level, he always will. But he is happy, healthy, doing well in school, has good friends. He is incredibly intellectually fast, quick-witted, has a great sense of humor, and a good sense of self: who he is, his strengths, his challenges. He sleeps soundly, is enthusastic and positive-minded about each new day and his future.

 

We continue to support his fight against the remaining OCD, and every day we see him gain a little more ground, a little more control over his own life. It's rewarding and heart-warming to watch him excel and achieve his goals.

 

I feel positive that everyone can get to a healthy, functional place, even if "100%" isn't eminent or has to remain a long-term, rather than a short-term, goal. Some folks get there more quickly, and some of us have a slower slog, but in the end, we're all moving the dial in the right direction!

[NYCMom]

Yes! Us too!

 

PANDAS caught within a week of sudden onset, 4 years ago. Treated with abx only (mild diet adjustments here and there when I could). Been off abx for over a year now, caught strep and then lyme during that time! But we made it through both. DS10 still has flares but milder and milder every time. We do not treat flares, just beef up probiotics and vitamins and try to keep him away from sugar. My kid is also incredibly intelligent, well liked by teachers and peers, tons of friends, no school or social issues.

 

It still amazes me that no one else, including immediate family, could tell that anything was wrong. I however had gut wrenching panic attacks as I watched my child tic away, battle strange anxieties and have soul searing melt downs with every flare. So a mild case, caught early? Or a mild case because it was caught early? I couldn't say.

[Pandasphilly]

Yes! Unfortunately, my DS was diagnosed pretty late in the game . . . at age 12 after having suffered since at least age 6 and we think considerably earlier than that . . . 3 years old, likely. It's just that the OCD didn't show up recognizably/clinically until he was 6, and because he's asymptomatic in the classical sense with regard to strep, it took us another 6 years to establish a relationship and get someone to take us/PANDAS seriously.

 

In the depths of the PANDAS, at 12, he was completely non-functional, curled up in the fetal position on the floor of his room, fearful of everything and everyone. Not attending school, had no relationships outside of family and doctors, couldn't undertake the most innocuous task -- showering for instance -- without having a meltdown because of all the mental and physical rituals he felt compelled to undertake while, at the same time, knowing that he wasn't supposed to. He was a blubbering, insomniacal, fragile, shell of who he really is.

 

Today, he still has some OCD and maybe, on some level, he always will. But he is happy, healthy, doing well in school, has good friends. He is incredibly intellectually fast, quick-witted, has a great sense of humor, and a good sense of self: who he is, his strengths, his challenges. He sleeps soundly, is enthusastic and positive-minded about each new day and his future.

 

We continue to support his fight against the remaining OCD, and every day we see him gain a little more ground, a little more control over his own life. It's rewarding and heart-warming to watch him excel and achieve his goals.

 

I feel positive that everyone can get to a healthy, functional place, even if "100%" isn't eminent or has to remain a long-term, rather than a short-term, goal. Some folks get there more quickly, and some of us have a slower slog, but in the end, we're all moving the dial in the right direction!

Nancy,

Can you share what steps you took for recovery? We've done ivig, abx, pex, therapy but I love to hear others stories and in what time frame to expect improvement.

[MomWithOCDSon]

Nancy,

Can you share what steps you took for recovery? We've done ivig, abx, pex, therapy but I love to hear others stories and in what time frame to expect improvement.

 

The turning point was abx, definitely, and we had him on Augmentin XR for almost two years; when we finally decided to take him off, we weaned very slowly because each time we'd tried to reduce the dose or remove it entirely before, he'd regressed badly. Finally, after about 20 months on, we were able to wean him off over about 4 months, and he's been off ever since (just over a year now).

 

Thanks to this forum, predominantly, along with the Augmentin, we started supplements, the best/most influential of which (for him, anyway) we've stuck with: probiotics, D3, fish oil, zinc, coconut oil, B6 and NAC. When we stopped the abx, we also started giving him olive leaf, which really does appear to have helped protect him from catching many of the bugs his friends and classmates have come down with for the past year. I attribute some of that to the NAC, as well.

 

He's also still taking a low-dose SSRI: Zoloft. We hope to wean him off in the next year or so but feel it still supports him, especially when school gets demanding with respect to workload, testing, etc.

 

Another turning point was adding low-dose Lamictal, an anti-seizure med that is also a glutamate modulator. It didn't "fix" his OCD, but it enabled him to look at it more objectively; it allowed his intellect to preside over his emotional response so that he could really participate in ERP and let things go more readily.

 

Once he started to come out of his "OCD fog" some via the abx, we had him in therapy 3 days per week for a couple of months; it was either that or take him somewhere like USF, and it was less disruptive for us to stick with his current therapist and just go more frequently. As he got a grip and we learned some new strategies for supporting him, as well, we scaled that back to once a week, and then once every 2 weeks. We're now checking in with the therapist about once a month, generally, unless something comes up.

 

His healing trajectory was dramatic after the introduction of the abx; it was like going from 0 to 60 in about 48 hours, and that continued for about 3 weeks. Then he plateaued and we started to worry that he wouldn't continue to improve. Truth is, he did, and still is. Sometimes when he hits a fresh bump or "stalls out," I have to pull out my journal and read through a bit to remind myself that, even though his improvement has been slower and more subtle as time has gone on, he has continued to improve, nonetheless. Only now it's a steady creep instead of a dramatic "BOOM!" The list of behaviors he used to display, though, versus what he displays now, is longer than I am tall. Somebody else once described it sort of like peeling away the layers of an onion, and that image really works for me. He's shedding the layers of the illness and the coping behaviors/mechanisms he'd built up over many, many years to contend with the assault on his thinking, his feeling. For him, it just hasn't been overnight.

 

We considered IVIG, but Sammy Maloney's story resonated so strongly for us . . . particularly given the physical and mental parallels between our DS and Sammy, that we elected to ride it out with the abx. Perhaps IVIG would've gotten him better, faster, but perhaps not.

 

Sincerely, nearly every day is better than the day before. And you read Sammy's story and realize it took him not months, but years, to fully heal. And then there's the more recent story of Susannah Cahalan ("Brain on Fire") who, struck in her early 20's with a similar auto-immune assault, required years to heal, as well. I know there are many here who've thankfully had much faster paths and for whom a tale of "years" of healing is a horror story, rather than a hopeful one. For us, though, it's the opposite because we're just so happy to see him continue to improve rather than getting "stuck" in the place he began, tangibly, at age 6, washing his hands until they bled. I guess that's just a perspective that says, if your course is not a short one, a fast one, that doesn't mean it's for naught or that things won't still continue to get better.

 

Thanks for asking! Near and dear to my heart, obviously!

[Kayanne]

My PANDAS daughter is also thriving. She's not 100%...but the OCD we see would most certainly be considered sub-clinical. She continues to do great in school, is in the gifted program, has friends, and is just an overall amazing girl.

 

She's had 3 exercerbations, each time treated with a monthly taper of prednisone and returned to 100% within about 2 months from stopping the pred (there is a time element here that healing needs) Since 2009, she has continuously been on antibiotics either full-strength or prophylaxis. Sept 2012 was the last time she tested positive for strep with no physical symptoms at all. I took her in to see if I could get titers ordered because the night before we just knew her symptoms were returning. I didn't think she would test positive since she was on 150mg of Omnicef daily. I was very shocked when the doctor said she was positive.

 

Since she's had 2 exacerbations while on prophylaxis, we don't feel it has been effective. In December, in consultation with her pediatrician, we decided to take her off of the antibiotics. She was 100%, but after taking her off, some worry and anxiety came back...but not enough to make us feel she's backsliding. Also, we are finding that keeping with the good vitamins, fish oil and occasional L-tryptophan at night is really helpful.

 

Over the holiday, she started to read "What to do when your brain get stuck," and I think she's really liking the intellectual approach to keeping her OCD in check. I cannot tell you how proud I am that she goes into that school building every day even though she is worried about being sick or someone else getting sick.

 

I agree with Dcmom, treat each exercerbation quickly and aggressively. This is manageable. For some silver lining--my daughter will have skills and empathy that many adults never acquire.

Edited January 3, 2013 by Kayanne

[StillHopeful]

MomwithOCDson-

 

Do you mind sharing the Aug XR dosage that your son was on and did you take it once/day?

 

Glad to hear lots of postivie stories.

[pr40]

acceptance is a big factor in living a "normal" life. we are learning how to manage it and live with it. it's interesting that so many PANDAS kids seem to have above average intelligence. (is it because of the age of their parents, who, if older when they had kids, might have higher education?)

[MomWithOCDSon]

MomwithOCDson-

 

Do you mind sharing the Aug XR dosage that your son was on and did you take it once/day?

 

Glad to hear lots of postivie stories.

 

1,000 mg., 2x daily (morning and evening)

[oivay]

My now 13 year old daughter is now pretty much normal. It was sheer ###### for almost 2 years though, but the PEx made a world of difference for her.

 

Her grades never came back up to what they were though, but I think that's because she has become almost hypersocial lately, especially since she started middle school. I think this is because she missed so much school and social activities/sports, etc. Also, she spent most of last year "catching up". Her school nurse told her that they had actually considered holding her back in 6th grade because she had missed so much school (about 60 days), but didn't because she was in the gifted program and they thought she would catch up, which she did.

 

I probably should be more vigilant about monitoring her academics, but at this point I'm so glad she hasn't had an episode in a while, I've become far less diligent.

[Pandasphilly]

My now 13 year old daughter is now pretty much normal. It was sheer ###### for almost 2 years though, but the PEx made a world of difference for her.

 

Her grades never came back up to what they were though, but I think that's because she has become almost hypersocial lately, especially since she started middle school. I think this is because she missed so much school and social activities/sports, etc. Also, she spent most of last year "catching up". Her school nurse told her that they had actually considered holding her back in 6th grade because she had missed so much school (about 60 days), but didn't because she was in the gifted program and they thought she would catch up, which she did.

 

I probably should be more vigilant about monitoring her academics, but at this point I'm so glad she hasn't had an episode in a while, I've become far less diligent.

Olvay

We just did pex with little change 2 months out. How long did it take to see improvement? Was it slow and gradual or immediate? Also what dose and which antibiotics and for how long after pex? This post and all these stories are so inspiring & beautiful!

[bigmighty]

DS 14 is doing wonderfully. He had overnight onset just over two years ago. Went through 17 1/2 months of the worst possible symptoms. Had two IVIGs via NIH, but got strep immediately after the 2nd treatment, and symptoms became worst ever (3-4 hours of OCD rituals every afternoon, etc.). Eventually saw Dr. B and after switching to Aug 875 and a 21 day steroid taper, light switch simply turned back off. Overnight full recovery a couple of months after the steroids. Just switched to Aug 500, which will be continued through the remainder of the school year as prophylactic antibiotic. DS has better cognitive competencies than ever in his life. Just started high school & grades are great. He's growing and gaining weight for the first time in years. He has been 8 1/2 months symptom free. He does not remember ever having been sick. We have no idea what will happen if/when he gets strep again. We have a prescrip in hand for a steroid taper. If he gets strep, we will immediately ramp back up the antibiotics and start steroids immediately. I feel that we are in a good place with a good plan. I have nearly stopped waiting for the other shoe to drop.