Struggling to understand...and only a little embarrassed to admit it :)

[simplyshine]

I've struggled to understand how this all works with PANDAS...does it stay around until it's treated, does it go away on its own? Do the symptoms hang around even if the infection is gone? If so, how do you deal with the behaviors that don't go away? I clearly don't understand how this all works. If my child has had moderate to severe PANDAS symptoms in the past - sudden onset coinciding with strep -for about two years with symptoms reoccurring on and off at different severities but now has just mild symptoms with the exception of intense emotional outbursts and defiant behavior as well as attention issues -- do we pursue treatment and if so, what type of treatment? Psychological/behavioral treatment? Or should I follow through with a refer to a PANDAS friendly doctor? I don't know where to turn for the behavioral issues if they are just a left-over from the damage done awhile back...or are these behaviors a sign that my ds is still in the heat of PANDAS? I don't want to waste the PANDAS doctor's time with just an angry, defiant child who can't control himself. Any suggestions would be greatly appreciated.

[awilliams74]

I'm with you in your struggle to understand, I feel we are in a similar place. DS now 11 has been on antibiotics since first diagnosed approximately 1 1/2 years ago, treatment dose then prophylactic. He was diagnosed by the local PANDAS MD (not a current specialist I guess I would say - published some research on it in the early 2000s but does not recognize PANS, did not test for any levels other than symptoms and ASO, antiDNASe). In the beginning at our exorcist moment (I now wonder with his sensory issues and ADHD that seem to have been around forever if PANS has been with him for longer than we thought) antibiotics and local treatment were a lifesaver. He's had flares but I believe they were mostly reactionary to others although we have gone back to treatment antibiotics with each flare. Since we antibiotic treated the entire house last July there hasn't been much in the way of flares or progress - seemed to be stuck in the 80-90% recovery, we completed CBT. In an effort to ease his difficulties with ADHD at school etc. we agreed/asked to try another med (low dose abilify) but we did ask the pediatrician to order several labs first. The labs revealed active mycoplasma, low ferritin and low Vit D despite supplements. We stopped abilify due to side effects, started additional supplements and changed his antibiotic to biaxin from Keflex. He is now probably a good 90%, things went away (quirky mild rituals we never gave much thought to), his handwriting is improving, while other things remain a struggle, I would say his is now in the mild category. We have no idea if we need to be patient and let him heal, if this is the new normal and we need to find the best ways to support, etc., or if there is still something lurking - mycoplasma could have been active for an unknown amount of time. Our pediatrician has been amazing but this is not her specialty. We are going to do a consult with a PANDAS specialist, even if I hear keep doing what we are doing, I will feel we have turned over every stone. The "what ifs" and nonstop reading were starting to paralyze me from making decisions, I need someone to tell me what to do and when to do it for the best outcome. So don't be embarrassed, I think most of us would also like the answer to that question:-)

[babyboo77]

I too am struggling with this. We were diagnosed less than a week ago. By two separate doctors who said my 6 year olds son was a "classic" example of PANS. I consider myself lucky that I specialize in diagnosing mental health in children that I knew after a few weeks of beyond severe behavioral outbursts, OCD outbreaks, self harming, depression, sensory issues, regressions, etc that something was seriously wrong with my happy, cuddly, people pleaser son who had ZERO behavioral issues before this. When symptoms started we treated them behaviorally which set his anxiety level through the roof making things worse. We started an anti-biotic last week, but because there is no strep and its PANS, the MD and pediatric neurologist haven't wanted to do further blood work to determine what bacteria or virus is causing this. So they started us on what I feel may be a "random" anti-biotic, but now a week later I am searching and weeding through information to tell me what the healing process looks like. Do symptoms completely disappear, do they wax and wane, do some symptoms disappear and some don't, do they just change, does a slow disappearance mean the anti-biotic isn't working on that particular bacteria or does there need to be time for the brain to "heal" once the bacteria is gone (or virus) .. . .its one of the things I am really struggling with myself .. . are things really better because of the anti-biotic or just because we have taken away every expectation for our 6 year old because it leads to violent outbursts, and are handling him like a time bomb constantly. It really makes me feel helpless and confused not knowing what to expect.

[pr40]

it is a condition. your child, if it is going to be only pediatric, may outgrow it. is he/she going to be completely w/out symptoms? My guess is no because you are dealing with an autoimmune condition. Immune system may mature but it will remain prone to autoimmune issues -- that's at least how I understand it.

it is best to start abx early. after two years, you seem to know what you are doing and can manage w/out them. I would have a plan in case it all goes south again and count my blessings.

usually, in the later stages, CBT is helpful with outbursts and other behavioral issues.

Edited January 20, 2015 by pr40

[nicklemama]

Here's my two cents. It does not go away on its own. Each time it comes back, it's worse(if you don't treat). If allowed to go on, untreated, it can become permanent. That's what Swedo said at ground rounds. If you have symptoms, it hasn't all gone away. It's taken me five years of treatment to get to near symptomless for my son. The most important part of treatment was discovering exactly what was causing continued behaviors and that was undiagnosed lyme.

[simplyshine]

Thank you for all your helpful response. We are really struggling with behavior issues and now feel we have to move forward on something, just not sure how since our dr won't prescribe abx. Also, how do you get your doctor to test for Lyme?

[HopeinHIM]

I've struggled to understand how this all works with PANDAS...does it stay around until it's treated, does it go away on its own? Do the symptoms hang around even if the infection is gone? If so, how do you deal with the behaviors that don't go away? I clearly don't understand how this all works. If my child has had moderate to severe PANDAS symptoms in the past - sudden onset coinciding with strep -for about two years with symptoms reoccurring on and off at different severities but now has just mild symptoms with the exception of intense emotional outbursts and defiant behavior as well as attention issues -- do we pursue treatment and if so, what type of treatment? Psychological/behavioral treatment? Or should I follow through with a refer to a PANDAS friendly doctor? I don't know where to turn for the behavioral issues if they are just a left-over from the damage done awhile back...or are these behaviors a sign that my ds is still in the heat of PANDAS? I don't want to waste the PANDAS doctor's time with just an angry, defiant child who can't control himself. Any suggestions would be greatly appreciated.

Oh!! are we right there with you. Our Ds 11 has PANS/Bartinella. The meds make him sick so he herxes from the kill off PLUS he also has PANS like reactions along the way. So behavior and mental issues all the time pretty much. SSRI's and Psyche meds haven't worked well and forget therapy. Our PANS doctor tells us that his patients don't respond well to therapy or psych meds. He tells us to keep pushing along and be patient and when he stabilizes much of the behavior leavers as well. Hey it been 1 year. But with flares we can expect some of it will return!!!! SO HOW DO YOU RAISE THESE CHILDREN?? We also are letting sooooo much bad behavior go because he is so fragile. One correction can turn into an hour of tears and sadness. Yes, and hour of vgames and no chores with little school responsibility. OR any responsibility for that matter. These PANDAS kids just cant seem to handle much. God bless them all. Everything overwhelms my son so we just have to turn away and let it pass. WE just scheduled 3 weeks of intensive at the Rothman Center in Florida. Its several weeks away and we are hoping the Bart and PANS are somewhat under control so we can begin to show him healthy VS unhealthy behavior. WE need professional help and sadly there is just so much confusion and speculation. Just wish the Docs would come along side a bit more and confidently tell you what to expect with encouragement and support. We are all in this together but apart. I am sad to read your post but relieved to know I am NOT alone and neither is my boy!!

[mama2alex]

Thank you for all your helpful response. We are really struggling with behavior issues and now feel we have to move forward on something, just not sure how since our dr won't prescribe abx. Also, how do you get your doctor to test for Lyme?

The best way is to see a Lyme-literate MD who will know ALL the infections to look for, what symptoms map to what infections, what lab tests are most accurate, and how to treat. These kids often have multiple infections, including bacterial, viral, fungal, and parasites. A pediatrician or other "mainstream" doctor won't be able to sort this all out properly. At this point, pretty much any good Lyme doctor who treats children has seen multiple PANS/PANDAS cases.

[riffleshell]

jumping into the conversation...

 

simplyshine: Intense emotional outbursts + defiant behavior + attention issues = your child is still struggling with something. A PANS specialist should help you figure out what to do next. Glad you've had so much healing already! My bet is that your child can get even healthier.

 

babyboo77 - sounds like you also need a specialist. Regular docs, even really good ones who believe in PANS, are not super helpful. Many people describe the healing process as "saw-tooth." That was also my experience.

 

Awilliams: You wrote "I now wonder with his sensory issues and ADHD that seem to have been around forever if PANS has been with him for longer than we thought" -- YES YES YES so much more research is needed here.

[bigmighty]

While you are figuring things out and finding the right doc, consider trying ibuprofen or some other anti-inflammatory (I believe some use turmeric). With my DS, there are clear issues caused by the brain inflammation that can remain well after a flare. Give ibuprofen a few times per day for about four or five days - the same as you would do if he had the flu or a fever - and see if the behavioral symptoms reduce in intensity.

[airial95]

Haven't read all of the responses, but having been through this for a while, I'll say this based on your initial post.

 

If you feel PANDAS is part of the equation, definitely get a PANDAS doctor on board. You will not waste their time even if your child is not at their worst when you see them. They understand the waxing/waning of this condition better than anyone. It may take time to get into see the doctor of your choice, so keep that in mind.

 

When choosing a PANDAS doctor, think about what your goal is. For example, are you looking for aggressive treatment? Are you looking for more conservative/maintenance kind of treatment? Are you looking for someone who can support your local pediatrician? Are you looking to find underlying triggers/infections? There are lots more questions, but each doctor has a different approach/different focus. Having an idea of your goals (at the moment - they can change) will help you choose a doctor that is a good fit.

 

If you are dealing with more minor behavioral symptoms but the worst of it has passed, I would seriously consider CBT (Cognitive Behavioral Therapy). It has been the biggest factor for us maintaining functionality - even with recurring flares.

 

Many folks will tell you that if your child is in the peak of their flare - at their worst- starting CBT isn't a good idea until they are a bit more stable and you've addressed the medical side of it. And I agree with that. But it sounds like you are not in the worst of it right now, and while you still need to address the medical side, your child may be open to CBT.

 

We started CBT with my son when he was just 3 years old. At that point, a lot of the techniques focused on OUR reaction to his issues, vs. his actually behavior. We were taught how to respond "properly" that wouldn't make things worse.

 

We found, especially with the young ones we had, that many of their worst "behaviors" became bad habits once the worst part of the flare was past. They would continue to do rituals, seek reassurance, etc.. because it was "normal" to them, and they knew if they didn't it would make them feel bad (one therapist equated it to drug use - the abuser may no longer need the pain pills for real pain, but they know if they don't take them, it makes them feel bad, so they continue to use). It was the same for us as parents, we knew the wrath that follow if we didn't give in to these rituals and habits, so we did just to keep the peace - further reinforcing the behavior after the flare had passed.

 

The hardest question for us was always when was the worst of the flare really over? (Answer - we kept detailed logs and journals and were able to see clear patterns).

 

Is CBT hard. Yep. One of the hardest things we ever did. I felt like we were torturing our child at times, forcing him to have meltdowns so he could experience his fears and learn to deal with them. I felt like it went against every parenting instinct I had.

 

But it worked. For both of my kids.

 

My daughter just tested + for strep 2 weeks ago. And she has only missed school 2x in this flare - which is huge since separation anxiety is huge for her. How have we managed to stay this functional even though she is flaring (and yes - she is flaring) - using the skills she learned through CBT.

 

We know use our CBT skills even in the peak of the flares (but we still wouldn't start a new round of therapy until the worst of it passed)

 

We are getting ready to go for a 6 week intensive outpatient program with Dr. Storch at Rogers in Tampa (formerly of the Rothman Center) this summer to help reinforce both of their skills (and hopefully tackle some stubborn skin picking she has).