Can a Pandas or Pans episode cause permanent regression?

[Plum99]

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Edited September 23, 2016 by SSoda

[jan251]

I don't think anyone knows the answer to this question, but I'd be inclined to think that a rapid regression into autistic symptoms may well be a PANS/PANDAS exacerbation. That would make much more sense to me than permanent damage. (thinking for a moment, what would we even mean by permanent damage? Nerves that couldn't be regenerated? Antibodies or infections blocking other molecules from attaching as in molecular mimicry, but permanently? Or something like levels of neurotransmitters?)

Edited August 18, 2016 by jan251

[Plum99]

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Edited September 23, 2016 by SSoda

[MomWithOCDSon]

I have to join Jan251 in echoing an "I don't know" with respect to some of your questions, but I can also offer this. In the depth of my son's worst/pivotal PANDAS exacerbation, many of his behaviors, sensitivities, etc. looked very, very much like an increasingly severe type of autism.

 

Perhaps like your kiddo, he had previously (along about the age of 3) displayed some "processing differences" that a few doctors and caregivers likened to a functional level of Asperger's, but nothing like what the PANDAS "unearthed," is the best way I can describe it. As a preschooler and through grammar school, he had some of the Asperger traits: intense focus on things of his interest, lack of tolerance for things/subjects that didn't interest him at all, general disinterest in social interactions with peers but an exceptionally strong ability to articulate thoughts, ideas and even feelings with trusted adults, high physical sensitivity to clothing labels, sock seams, etc.

 

With the PANDAS came an inability to look people in the eye when talking with them, a "kinetic" sort of need to move and talk at the same time -- if you asked him to sit or stand still, the words wouldn't come out, odd speech patterns in which he would repeat words or even full phrases over and over again, without being able to complete an articulate thought, lack of muscle tone to the extent that he couldn't sit up for long periods, was forever lounging and slumping, dramatic meltdowns over tasks or requests that, before, had been simply and confidently accomplished. My dad developed Alzheimer's about the same time, and at one point fairly well into his healing, my son told me that sometimes he "felt like Grandpa" because while he could remember a beloved vacation that we took two years ago, he couldn't remember what he'd had for breakfast that morning, or even if he'd brushed his teeth less than half an hour ago.

 

Personally, I think ALL of this is brain assault . . . microbes, inflammation, neurotransmitters tilted off-balance by inflammation or microbes or both . . . But it DID all get better over time with PANDAS treatment, therapy, supplementation and some "psych" meds, as well.

 

Within about 2 years' time, all of his caregivers/doctors had dropped any reference to "autism" in his diagnostic profiles, and he's a happy, successful, largely independent college sophomore today. That's not to say that he doesn't still have some "quirks" or some periodic episodes of anxiety and/or OCD, because he does. I think he's wired this way, honestly. But he is fully functional which, during the PANDAS, he couldn't have been further away from.

 

All that's to say . . . don't give up! The answers don't come easily, nor do they always come quickly, but they WILL come!

[jan251]

So the OCD and tics left with antibiotics, but loss of language, loss of motor skills, and anxiety remain. If it were me, I'd still be blaming PANS/PANDAS here and assuming this is not permanent, but treatment may not be straightforward or quick.

 

We've been working on this for two years now. Funny thing is that before PANDAS, my child had developmental delays, low levels of sensory stuff going on, speech and language issues, etc., but it wasn't until PANDAS that there were relatively short moments of overwhelming anxiety where he really "looked" autistic, even to the professional we saw for CBT. In those moments, it's downright disturbing for me to try to look at him as an unfamiliar observer rather than the mom who knows exactly where he's at underneath the compulsions or whatever. For us, there are layers to the puzzle, and antibiotics provided very little in the way of symptom relief. We're working on IVIg and if we get improvement, at some point hopefully we'll be in a place where trial and error with methylation, etc. will help us do the fine-tuning I expect will be necessary.

 

Good luck with the PANDAS doc. I know the waiting is hard.

[Sirena]

Our dd5 had major delays and sensory processing disorder (no pandas dx. I was just starting to feel like we were getting out of the weeds when our DS7 (then 6) got pandas. We have seen significant and measurable regression in his neurosensorimotor integration. Many of the descriptions you all shared have fit my son (especially momwithocdson) Interestingly, we had by chance gotten an MNRI assessment done on our son one month before the major pandas onset--really just bc we were doing MNRI as an intervention for our daughter and it was helpful for us to do it as a family. This spring we were able to get him OT with an MNRI trained OT and she was able to see specific reflexes which have been hit hard by the pandas --including one affecting his gait--which were developmentally normal before!

I think that when brain assault is severe, it wreck havoc on the reflex integration and you may have to do some reprogramming/reintegration to get back on track. Ssod, your post reminded me of my dd and how we (ha ha-I) finally figured out that she had a retained Moro reflex and once we addressed that she made great gains-my point being that some reflexes have to be integrated before others can work correctly. So if the neurological foundation is damaged, you have to rewire/reorganize at the foundational level first. Please keep up the hope and remember that neuroplasticity is real.

[Plum99]

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Edited September 23, 2016 by SSoda

[MomWithOCDSon]

SSoda --

 

I can almost literally hear the desperation and frustration in your voice, and I do, truly, remember how that feels.

 

This is such a crazy journey, and it's demoralizing and angering to have medical professionals try to twist it around on you, suggesting or outright telling you that you're a delusional mom who just can't accept that some kids develop autism or some other condition and who spends too much time poking around on the internet . . . But that story, too, is all too familiar.

 

Like you, I got most of my help, ideas, research leads, etc. from here on the forum. Moms and dads who are smarter than me, more connected than me, more experienced than me -- all contributed to what I'll call my "throw-spaghetti-at-the-wall-and-see-if-it-sticks" approach to trying to find the most effective combination of all possible things to help my son heal. On top of which -- I won't lie -- I think we were exceptionally lucky. Basically, I ruled very few things out altogether as we went along, based on how well I knew him and trusted my read on how he responded or reacted to various interventions, and the other families here helped me trust my gut when I didn't feel fully supported by my spouse or family or friends. At times, to them, I'm sure I sounded like a completely wacked out person who saw aliens everywhere and Bigfoot in my back yard!

 

Are those new supplements you just started giving causal to the small improvements you're seeing in your kids this morning? Maybe. Maybe not. Maybe, even this early, they triggered something in their brain chemistry that had been sorely missing up to this point, and even though the gains may not hold entirely or grow exponentially from here on, you've got one potential clue as to possible successful interventions. For us Augmentin XR was that "aha" substance that, the first day we gave it to our DS, his behavior began to turn around. It wasn't 100% consistent and the gains did not continue at an exponential rate, but they did continue. So we stuck with it.

 

I hope you have some close-by support system (sounds as though your sister is in your corner?), and you can always count on the folks in this forum, too. And you DO need to take care of yourself, as well, so do what you need to do in that respect. This stuff is not easy. It can be painful, grueling and unbelievably frustrating. But you'll get through it . . . we're all here to help, if we can.

[Plum99]

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Edited September 23, 2016 by SSoda

[qannie47]

I don't know if this will be helpful, but I came to a point where while I knew that my ds had Pandas, I realized that there were co-morbid issues. I separated out those issues as best I could and treated those individually. For example, for my son food sensitivities played a big role for behaviors that seemed inconsistent with fitting into a neat tidy box Pandas presentation. Another example was the Right Brain Auditory Processing Disorder that we uncovered after more digging. There were other co-morbid things as well.

 

AS I learned, what I came to believe for my son was that no one DX could explain or solve all my son's issues. However, they all were interwoven into my own child's unique fabric, playing there own roles, yet connected and exacerbating each other...including Pandas.

 

I found that when each problem was addressed singularly, everything got better as a whole.

[MomWithOCDSon]

We took a similar approach to Quannie, especially once we realized that we would encounter resistance among the professionals that we felt certain could help DS with certain needs, but wouldn't willingly buy into others. For us, the pediatrician was willing to prescribe the abx that ultimately jump-started his recovery from The Exacerbation to Beat All Exacerbations. The school staff was ready to help us with the behaviors that were birthed by all the anxiety that the PANDAS drove. The therapist and psych were ready to help us with the toughest of the OCD. And the wonderful folks on this forum helped us develop our own integrative approach in putting all the pieces together as best we could, for what became the full circle care program for our son.

 

I've always wanted to find that needle-in-the-haystack professional who would be willing to treat my son from A to Z, but I've never been successful. And even among the most experienced professionals within the PANDAs world, or the ASD world or CBT/ERP, treatment protocols and recommendations can vary widely. So you really are, ultimately, I think, left with following your gut to some extent and recognizing that you know your kiddo(s) better than anyone else on the planet, and so you're in the best possible position to assess what is working for them, what isn't working for them.

 

As for "clearing" a doctor's file, no, I don't know of any way to accomplish that, unfortunately. Though I do think, given HIPPA, if you request a copy of the records be delivered directly to you, they are required by law to do that. We had to pay our doctor for the time and photocopy costs (I think it was like a $10 fee), but they did provide them to us. Then I made a binder that I took to future doctor's and professional's appointments with us that contained the records, research, writing samples, PANDAS information and resource, etc. I wanted each caregiver specifically to have.

[Plum99]

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Edited September 23, 2016 by SSoda

[Plum99]

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Edited September 23, 2016 by SSoda

[AmbersMommy]

My daughter was diagnosed with PANDAS in 2010. She had autistic type symptoms at the onset. Eye contact was virtually gone, language regressed. I could go on. She has had IVIG and many different antibiotics. The autistic type symptoms have come and gone and come back again. They did get better with IVIG and antibiotics. Then they got worse even though she was still on antibiotics. I have been wondering if some of the symptoms I have attributed to PANDAS are permanent. I wish I knew. I know she has pandas because she had the Cunningham panel done. I just don't know for sure if she has autism on top of it. I have a hunch that PANDAS and autism are two different sides of the same coin. It is hard to figure out what to do when you question whether a symptom is permanent or not. Should your focus be on trying to find the cause so you can seek a treatment or should your focus be on alleviating the symptoms?? I am right there with you. It is 6 years later and I am still trying to figure out how to help her. She is better overall. Just this past 6 months her muscle strength and stamina have gotten a lot better. However her eye contact has gotten worse. Go figure. Keep on trying. Trust your gut and be good to yourself. Good luck.

[Plum99]

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Edited September 23, 2016 by SSoda