MomWithOCDSon

Welcome to the forum, but sorry your family has been forced to deal with PANDAS/PANs.
 
As you do some reading here, you'll find that our stories, including treatment protocols, can vary widely. What does seem to be a thru-line to some extent, however, are commonalities among behaviors that we see in our kids when they're sick. There's some commonality in response to various medications and supplements, too, but not always. Time frames vary dramatically, also; I have my suspicions that this variance has to do with age at diagnosis, length of time the child was suffering due to PANDAS/PANs but went incorrectly diagnosed prior to diagnosis and treatment, and similar temporal differences.
 
My DS was diagnosed with "regular OCD" at age 6 and went through a second "flare" or exacerbation at about 7.5 years. We inquired about PANDAS with ped, therapist, and ultimately a psych as well but were told it wasn't "real," and since our DS was classically asymptomatic for strep, we couldn't demonstrate a link, either. So we treated with therapy and finally an SSRI (Lexapro) until he turned 12.
 
At 12, he completely flipped out. Went from being fully functional, funny, social, academically gifted, to a basket case. Couldn't read, sleep, play, eat. Psych kept switching up psych meds . . . different doses, different formulas. Nothing worked, and he just got worse. "Saving Sammy" and subsequent email conversations with its author, Beth Maloney, turned our attention back to PANDAS/PANS, particularly since Sammy was classically asymptomatic also. Ultimately, we were able to prove some atypical immune response through blood tests, and our ped was, gratefully, willing to give us an abx trial. Based on Sammy's protocol and our DS's similarity to Sammy in terms of age, behavior set, etc., we began with Augmentin XR, 1,000 mg., twice daily.
 
When I found this forum and connected with a number of other families and great minds who were deep into the latest research, helping their own families and others, too, we began to explore other supplements that could assist DS with respect to immune balance and behavior; we also found a PANDAS-literate psych and reduced his SSRI dose and changed the med, as well, to Zoloft. We looked into IVIG but did not pursue it for a number of reasons, not the least of which was DS was so positively responsive to abx, we didn't entirely see the need for another, more expensive intervention.
 
DS was on the XR for nearly 2 years; we slowly weaned him off the last 4 months or so. He also continued on Zoloft and certain supplements we found seemed to help him on an ongoing basis: NAC, B6, zinc, quercitin, omegas and magnesium. We also kept him on probiotics (sach b. and a mixed flora) during the abx and for quite some time afterward. ERP therapy was also his constant companion, twice each week for the first year or so following his PANDAS dx, and then edging off slowly as we saw him gaining more traction over the OCD, and as we became more and more literate as parents in terms of helping him beat back the OCD at home, rather than accommodating it.
 
He's now 17 and I consider him a success story. He can now maintain his health -- mental and physical -- even when exposed to strep. He's been off abx for nearly 3 years, though he continues on a low-dose SSRI. I've found a compounding vitamin supplier and have been able to order a custom blend multivitamin for him that contains the things we know help, and leaves out the components we've seen can have negative impacts for him. He is back to his functional self -- funny, fun, bright, in AP and honors classes in his senior year in high school, has friends, etc. He still contends with some OCD; whether or not that's because he was dealing with that for 6 years before we were successful in getting PANDAS intervention I can't say for sure, but that's what I suspect. His brain was being wired those 6 years, so undoing that will likely continue to take some time.
 
I wish you all the best, and from our experience I will offer two key perspectives: 1) time is an important component in the healing process; and 2) don't ever give up!

I'm so sorry, Lordchallen.  That all sounds awful.  But, unfortunately, these sorts of "rages" appear to be part and parcel of some kids' PANDAS behavior set.  Usually brought on by severe and unrelenting frustration, knowing that their behavior isn't what it once was, isn't what it should be with respect to age-appropriateness, but to a large extent out of their control because their brains are so disordered currently, their executive functioning so challenged.
As for why those behaviors seem to get worse or more extreme in the evening as compared to the morning?  I had a psychologist give me a metaphor once that painted a pretty good picture.  Your kid gets up in the morning and it's a new day; everything yesterday is behind her, and she has a chance to "do it right" today.  So the morning is about as full of optimism as the day is going to get.  And then she goes to school or goes about her day, and because she's around peers or non-parent adults, she's doing her best to keep it all together.  So she sucks up her anxiety and distress for much of the day, trying to "be normal."  And like a glass that's slowing filling up with all of that angst and frustration, she's got those reserves, under the surface.  But by the end of the day, that glass is full, and at the next incident that's frustrating or anxiety-producing, it's overflowing because there's just nowhere to stuff it any longer.  And she's in a "safe" space at home and with her family, so she's not forced to suck it up any longer like she is at school or around her friends or their families.  And she probably couldn't by that time of day anyway, even if she tried, because the glass/her reservoir is full, tapped out.
It's really hard because you don't want to excuse these rages as acceptable, but at the same time, you know there's an extent to which she can't control them.  And she clearly doesn't want to have them, either.  I would maybe try a few things.  1)  Is there any chance she might have some excessive yeast growth going on due to antibiotic use?  I know you're using probiotics, but sometimes that doesn't do the trick for all kids.  Excessive yeast can make some kids more combative/ragey.  2)  Maybe during a weekend morning or mid-day, you could have a "family meeting" and talk through some strategies with her, while she's calmer and she's in better command of her behavior and her emotions.  Let her know you know she doesn't like those rages and is as distressed by them as you are, so let's figure out ways to de-escalate the situation, rather than fuel it.  Maybe she can go into her room for a bit and listen to music or just sit by herself or with you quietly for a few minutes until she feels calmer?  Maybe find a few things or activities that she finds pleasant and calming that could be brought in when she's overwhelmed or "topped out," if only for a few minutes at a time. 3)  Have you tried using an anti-inflammatory in the evenings, like an Ibuprofen?  We found that using this as a medicinal therapy after dinner seemed to help my DS to muscle through evening activities (homework) without getting quite so worked up or frustrated.  I think it helped tamp down the inflammation enough so that he could think a little more clearly and not have quite such a quick trigger for frustration.
WIshing you the best.

I like "The Explosive Child," also, and while it's not specific to PANDAS, necessarily, one of the authors has worked with Dr. Swedo in her research at NIMH, so he's at least familiar with PANDAS presentations.
I'm not sure it matters whether the disrespectful behavior is uncontrollable because of PANDAS, or if it's uncontrollable because your kid is so far out of his self-control that he can't stop himself from blurting out rude words or making rude gestures or whatever.  I mean, yes, PANDAS can definitely mess with your executive functioning and make it more difficult to display age-appropriate behaviors.  But most behavior of that kind comes from a lack of self-control, irrespective of the genesis of the lack of control.  Either his brain is physically impacted so he acts out, or his "mind" is emotionally impacted so he acts out, the results are the same.  And maybe the same tactics are applicable for the behaviors, as well.  "The Explosive Child" has some great strategies you could try, but as I recall, pretty much all of them suggest that you de-escalate any unpleasant exchanges by dis-engaging, taking a few minutes to calm down and dial everything back, and then re-engaging again in a calm, controlled tone of voice and body language to resolve the dispute.  Seems to me that could work whether PANDAS or non-PANDAS.
I personally think that pretty much ALL non-age-appropriate behaviors (meltdowns, tantrums, etc.) our kids may display during this illness is at least partially -- if not wholly -- attributable to the illness.  But then again most "normal" kids will test their limits during the natural course of growing up, too.  So, in your shoes, I might ask myself, "Is this behavior I could expect to see out of a 'normal' XX year old?"  If the answer is "yes," then maybe you deal with it as you would with any kid behaving that way.  But if the answer is "no," I think you still address it, but maybe with a little extra compassion and patience, adding into the discussion something along the lines of, "I know that you're feeling especially out of sorts right now while we get the inflammation in your brain and the other PANDAS stuff under control, but you have to know that speaking/acting that way is still unacceptable.  Let's try and brainstorm some things you could try instead of yelling at me/your dad next time you feel this way."
My son hated being told he was not acting his age when he'd meltdown over something pretty minor or lose his patience in 0.2 seconds during his PANDAS.  But I've got to be honest; I didn't do it to be cruel, but I felt like it was somewhat important that I hold a mirror up for him because I didn't want him to dig a deeper and deeper hole for himself socially.  I wanted him to have some outside perspective as to how his meltdowns looked to his peers in the hopes that it would give him some incentive to work with me on some of the "Explosive Child" strategies for dialing things down so that he could "save himself" in some of those outside world situations.  It was tough, and we weren't always successful.  But I do think it helped him maintain some perspective, especially when he got out of that intense moment and could look at things a little less emotionally.
All the best to you!

I'm a little late but have to respond because our symptoms change meant that we - who were experienced with PANDAS - completely missed the "after puberty relapse" for 2 years.  Our son was diagnosed in 2010 or 11 at age 11.  We, the parents found this and worked to show and educate his pediatrician about PANDAS.  The symptoms at 11 years old were obvious - vocal and facial tics, tapping and counting, repetitive phrases and eventually only those phrases.  But he was a happy ticcer.  CBT did nothing as they said he was not anxious or depressed, but he had to do things his brain told him to do.  We had this thing "licked" after a year of high dose abx.  
Flash forward to Spring and summer 2016 - my kid after sophomore year of college - top 5 school, national athlete - suddenly is so anxious he can't interact with high school students at a summer camp.  He feels everyone is "putting him down" or "out to get him".  Every interaction is stressful and eventually he would not leave the house.   His personality changed 100%. He alternated between despair and optimism but often felt completely apathetic. He begged for help, kept saying "something is wrong - this is not normal"  but to us the signs were invisible - no tics, no repetitions, nothing you could see.  He talked to a counselor (no value).  We never, ever thought PANDAS.  There was no similarity to his previous diagnosis.  However, his mental anguish was horrible and waxed and waned over the next two years until finally last June, after a case of strep that went untreated because he did not have a fever and was refused a swap test,  he completely fell apart with intrusive thoughts and irrational behavior.  Suddenly his dad said "this is completely irrational - it must be PANDAS"  The ASo titers came back at 932, Cunningham Panel (now existed) was 3/5 positive.
I'm telling you we had not forgotten about PANDAS but the second time looked so completely different we, who were looking, completely missed it.  We're on it now but feel like he has suffered two extra years and we hope we are not too late.

I recommend the book, “The Explosive Child”.  It’s not PANDAS specific, but it definitely can apply.  

Maryangela
I had my daughter on the "Renewed Life" (I think) and I noticed a couple of interesting things.
Like her anxiety seemed to almost disappeared (compared her usual) and I was really excited. I was calling it her "rage" but I could tell it was her inability to cope with frustration. Like I told her "put it away" and she got mad. Then her older sister came and lectured her (I had left) and she got even more mad. All of this followed the school nurse grilling and interrogating her in the hallway. She couldn't process the frustration.
She has had a "sensory processing disorder" diagnosis since she was 2. We are constantly trying to help her process things. This might be talking, tossing things, squeezing things, pro-prescriptive exercises, reflexology, etc. She is a good kid. She is very loving, kind, thoughtful, blah, blah, blah. But there times when she gets really mean, but then she feels really bad afterwards.
But this last week, I totally see where a stomach imbalance can cause inappropriate behavior.
MomWithOCDSon,
Thank you so much for all of your insight. I have tried a couple of different probiotics.  I am using the Pro-Kids (Pro-15) and she seems like a million bucks. They seemed to work almost instantly. She said she loves her probiotics, she hasn't had stomachache in 2 days. She is good. She is a little moody, but after everything that has happened I find it very acceptable. But not crazy. If she gets upsets with a friends, she just walks away and does something else.
I am very excited, I just hope things continue in this trend.
Thanks for everything and I will be around for more insight.

I don't see a link to the page, but highly doubt that there is a valid conclusion that treatment for a year provides assurance of no relapse. 

Relapses are very common, and there have been trials of abx that document relapses or flares, even after a year of prophylactic doses.  I hope this comment doesn't depress you further, but if so there is still hope.  Our child improved dramatically with puberty - though not all do.  I have found that the job becomes chasing all the triggers (including non-strep), as we don't seem to have a cure for the immune dysfunction, except possibly puberty.

Funny I just got a notification from this response.  I have not been on this forum in a very long time.  I am so happy to report that I have a very healthy happy 16-year-old daughter who is no resemblance to the child that was in such turmoil. I will however say it has contributed to the person she is kind, compassionate and confident. I just went for an IEP meeting today which we did not even try Start one until eighth grade where things got worse before they got better but I have to say once  over the hump of entering puberty things really started to balance out. She has not used one accommodation from her bare bones IEP she has good grades healthy social relationships and almost no residual OCD. I hope this gives hope to the parents that are going through this. My main advice and one of the hardest lessons I learned and she actually helped me see it was not turning her into something that needed to be fixed with all the desperation  of trying to find her help she did feel like that for a time. Funny once I excepted exactly how she was whether it was going to last forever or not is when she started to get better. Sending love and good vibes to all of you and hope for a better day. 

Many years after posting, I'm checking through old accounts and thought this deserved a reply to give others hope. I notice that I had deleted my messages, but I just want to say that the very typical and rather full-on symptoms typically associate with PANDAS (OCD, inability to speak, eventual inability to walk)  eventually went away, but it took a couple of years. He is absolutely fine now and I see this as fitting into how PANDAs can impact some children at a very specific time in their lives.
The parents didn't ever get much help. 'Social services' for a while thought that he may have been mistreated (something I knew wasn't the case).. then the doctors switched to a diagnosis of Chronic Fatigue and never shifted from that. It really did appear to match PANDAS though and now he's fine and thriving and it all seems like a nightmare or a dream of old. It's in the past. I hope that others here, feeling desperate due to the condition and lack of help, reach the same place. Thanks.

Donald Raden, MD is an Integrative Psychiatrist in Highwood, IL.  His practice is called the Raden Wellness Center.  My son (age 13) has been under Dr. Raden’s care for 1 year. He saved my son’s life.  He treats many young adults with PANDAS.  My son’s case was severe.  

Mountainmom,
My son had Lyme/Pandas and a month-long steroid taper helped him immensely twice, and did nothing once, over the 5 years he battled his illness. Our LLMD isn't a huge fan of prednisone but does recognize it has it's place for Pandas kids.
Like your son, my daughter was in her darkest days yet had no definitive infections. She did have Marcons - you may want to ask about that. I may never know what exactly she was fighting, but I do know that a combo of bactrim and zith and prednisone saved her. Low dose naltrexone was also helpful. She has struggled immensely from mold issues - mold in her elementary school and now her Jr High. Prednisone isn't recommended for mold situations either, but desperate times called for desperate measures. She recently started Zoloft and although I've tried everything I could to avoid it, she does get relief and is glad she's on it. Inositol, Ashwagandha, Bacopa and looking into how your genetics affects methylation are also options for reducing anxiety.
Cognitive behavior therapy wasn't hugely helpful for my daughter, but now that she's a little older, she's having great success with EMDR. So something to keep in mind as your son gets older, if he continues to struggle with anxiety.
I know it feels like this will never end - and it is a grueling journey. But my son "grew up with" MomWithOCDSon's son - and he's now the healthy, obnoxious teenager I always hoped for, while her son is enjoying college. My daughter's journey has been harder and more complicated, but she too is making progress. So don't lose hope. Our kids do get better. But first they need to eat

Full immune panel (IgG, IgA, etc.), ASO (strep), anti dnase B (longer-term strep titer). I think methylation issues are a VERY worthwhile trail of exploration for someone your age dealing with these issues, and it appears from your signature line that you done that. So none of the interventions you're trying for the mutations has been effective?
 
Wombat, I don't want to discourage you from exploring every available avenue, but as the mom of a now 18-year-old who was first diagnosed with OCD at age 6, didn't get a PANDAS diagnosis until age 12, responded very well to abx (brought him back from a totally dysfunctional brink), but continues to deal with some ongoing OCD and anxiety issues (though manageable) . . .
 
I just want to encourage you to perhaps not get hung up on the testing and interventions tied to traditional PANDAS/PANs (rapid onset, pre-pubescent expression, abx, IVIG, etc.) and perhaps lean toward more "lifestyle" type interventions that will hopefully help make life more functional, more fun, and help you push away more of the OCD that interferes with your everyday life. If you do yet have underlying infection, be it lyme or strep, etc., then abx, IVIG, etc. will likely help you to an extent. (How long were the course of abx you've tried in the past? Can you get a longer-term prescription for them and journal your behavior patterns for a period of months? We found that, after the initial "burst" of palpable benefits, abx tended to yield more subtle improvements over time . . . perhaps unnoticeable to a majority of people, but by reading back through our journaling of things our DS used to do but didn't need to do anymore, or things he'd given up to the King OCD but had begun to resume as he improved).
 
But just from our experience, having contended with OCD for as many years as you have, I would not want to lead you to believe that abx or IVIG will be a panacea -- a cure-all. And if either of them is to be effective, IMHO, given your age and the term of your dealing with this condition, I'd wager that that you would need a longer and/or more repetitive course of these medical interventions than might be the case for a younger, more recently diagnosed case (our DS took abx for about 2 years). Additionally, I would suggest dietary, supplements, ERP/CBT and perhaps even some prescription medications to help you gain more leverage over the OCD, even if only as temporary measures.
 
In the end, the PANDAs tests and interventions turned our DS's life around, but even so, he continues to need supports. Whether that's because he was older and the anxiety/OCD was more entrenched by the time we determined the immune condition, or if it's because it's genetically part of who he is and the PANDAS just made it worse, I can't tell you. But I've made my peace with throwing everything at this monster that's at our disposal, and that methodology, in the end, has given my DS his life back.
 
Keep fighting, keep searching and never say never! All the best to you!

To a great extent, the medical science is beyond me.  But as a recall, the actual magnitude of the titer count (whether anti-dnase-b or ASO) matters as some "highs" are, in the end, essentially statistically insignificant while others are truly indicative of something amiss.
My recollection is that the anti-dnase-b titer test measures a strep infection exposure that was at least 4 to 6 weeks in the past; if your son's exposure was 3+ months ago, then the fact that his titer level is still "high" by his doctor's standards would suggest that, potentially, some molecular mimicry has taken place in which the strep has exchanged some molecular material with body tissue, tricking the immune system to continue to produce antibodies to attack the "invader" which is actually "self."  This is my simplistic understanding of what can happen in this autoimmune condition.
For the "devil's advocate" view and some decidedly more scientific responses on these topics, I would drop "anti-dnase-b" and/or "molecular mimicry" into the forum search box and then thumb through the resulting topic threads.  These topics have been discussed in some detail during previous years here, but it's been a while.  And it's fairly complex, at least for someone like me.  But there is a wealth of information here, if you have the time and inclination to dig through it!
Good luck!
 

Fiddlegrl -- Welcome to the forum, though I'm sorry for all you've been through and the issues you're still fighting.
I will say that I've been with this forum for many years now...first during my DS's illness and healing, and then somewhat less frequently for the last few years, checking in to follow up on old friends and any new research, and to chime in when something resonates with my experience.  Pretty much ALL of the symptoms you've described, unfortunately, have been discussed here as part of the PANs/PANDAs continuum.  It stinks.
I don't have any practical experience with respect to Lyme and its co-infections; my DS's syndrome was clearly strep-related, though seasonal allergies exacerbated inflammation and the immune response for a number of years, once the PANDAs had kicked into high gear.  Like you, though, we believe his behavioral issues were tied to atypical strep infections potentially as young as 3 years of age, though certainly by the age of 6 when he was officially given an OCD diagnosis.  But he never tested positive (via swab and culture) for strep at the time, and no local doctors would give us the time of day regarding PANDAs then, either, so he went without any real treatment until he hit 12.  That's when the PANDAs brought him to an absolutely non-functional state, the research coming out of NIMH, Columbia and Dr. Cunningham had progressed, and we were finally able to talk someone into an antibiotic trial.  It was a long road, but the rest, as they say, is now thankfully pretty much history.
As a result of our experience, though, I do think it likely that PANDAS/PANs sufferers who are at a more advanced age before receiving immune and/or anti-inflammatory therapies may have a harder road with respect to healing and "bouncing back;" not sure if that's because the brain "wiring" has matured more in the interim, or if the chronic inflammatory and auto-immune responses in the body are somehow more entrenched and therefore harder to reverse.  In the end, it took my DS about 5 years in total to return to pretty much full functionality, and that was with auto-immune, therapeutic and psychiatric interventions all thrown into the mix.  He continues to contend with some OCD and situational anxiety now and again, and I'm not convinced that this will ever disappear completely.   But those issues remain at manageable levels (knock on wood), and he's happy and healthy and constructive and functional.  Pretty much all we could ask for, after what he went through.
I'm not sure how to advise you on any possible next steps, really, except to suggest that perhaps exploring some additional genetic markers and methylation issues might help you for the long term?  You mentioned genetic testing for porphyria, but did you get a full work-up?  A search here on the forum for "methylation" and "mutations" will lead you to multiple discussions regarding the methylation cycle and how genetic testing has helped point some families to a regimen of supplements and/or medications that proved to be more effective for them in light of various mutations and genetic predispositions.  Perhaps that's worth a try?  Finding a well-versed LLMD and/or integrative physician who could be your partner in working through these issues would be a bonus.
Your post was very well-written, so I'm picturing an intelligent, capable and fairly "together" young woman, so I sincerely hope you're finding moments of joy and contentment in your everyday life, despite this tremendous burden.  All the best to you!

Where are you?  What hospital is your daughter currently in?  Any more new with respect to test results?
Did these symptoms come on suddenly?  Is your daughter otherwise neurotypical, or has she previously presented with autism or another neural disorder or "difference"?
Yes, these symptoms are ones that can show up in severe episodes of auto-immune disorders, but not every medical professional is going to recognize the signs for what they are.  When you had blood tests, what tests were included?  You mention having an "immunity test."  Via blood panels?  What testing is included there?  Make sure you're testing for ASO and anti-d-nase b (strep antibodies).  Catatonia (even narcolepsy) has been associated with untreated strep infections, and many people are classically asymptomatic for strep -- no fever or sore throat, but raging antibody levels nonetheless.
If you're spending time in the hospital, waiting, you might try getting a copy (it's available in digital format as well as paper) of a memoir by Susannah Cahalan called "Brain on Fire."  Susannah suddenly developed all sorts of bizarre neuro symptoms, some of which your daughter is also displaying.  She was studied and poked and prodded and tested, and they couldn't find the culprit; a set of doctors decided that she had a multitude of illnesses, both physical (seizure disorder) and mental (psychosis), but then one out-of-the-box thinking doctor noticed a few atypical behaviors and kept studying her and ultimately determined that she had developed some auto-immune reaction to some unknown microbe.  It's been a while since I read the book, but I don't think they ever found out definitively what it was.  I believe Susannah was treated with multiple interventions, but infusions were definitely in the mix, and she recovered. She was in New York, and the doctor who essentially saved her was Dr. Souhel Najjar.

Oh my, I'm so sorry!  Your son's description of how he's feeling reminds me vividly of Susannah Cahalan's description of her own auto-immune illness in "Brain on Fire."  She, too, experienced paranoia and some other symptoms that many traditional doctors would all too readily dismiss as solely psychiatric manifestations, dispensing with the underlying physical issues.
If your son is a danger to himself or to others, you will need to get him immediate help; if that means the hospital, then it's the hospital.  Unfortunately, I think it likely that you should expect to be met with some psychiatric interventions -- tranquilizers, at a minimum -- if he presents as agitated or full-on delusional at admissions.
You may have reached a crossroads where the abx are insufficient for meeting his illness adequately.  Can you get a PANDAS/PANS specialist on board?  I know a number of families here have allowed short-term and periodic use of anti-psychotics or tranquilizers (Valium, Seroquel, etc.), just to get there kids calm enough to travel for help, and/or to give the kid and the whole family a break and some sleep.  I'm not advocating that, necessarily, but you have to do what works in order to give your kid their best chance at a route which leads to the best healing.
Hang in there.  Hopefully, someone else will chime in with more direct experience that may resonate with your situation.

Oh my, I'm so sorry!  Your son's description of how he's feeling reminds me vividly of Susannah Cahalan's description of her own auto-immune illness in "Brain on Fire."  She, too, experienced paranoia and some other symptoms that many traditional doctors would all too readily dismiss as solely psychiatric manifestations, dispensing with the underlying physical issues.
If your son is a danger to himself or to others, you will need to get him immediate help; if that means the hospital, then it's the hospital.  Unfortunately, I think it likely that you should expect to be met with some psychiatric interventions -- tranquilizers, at a minimum -- if he presents as agitated or full-on delusional at admissions.
You may have reached a crossroads where the abx are insufficient for meeting his illness adequately.  Can you get a PANDAS/PANS specialist on board?  I know a number of families here have allowed short-term and periodic use of anti-psychotics or tranquilizers (Valium, Seroquel, etc.), just to get there kids calm enough to travel for help, and/or to give the kid and the whole family a break and some sleep.  I'm not advocating that, necessarily, but you have to do what works in order to give your kid their best chance at a route which leads to the best healing.
Hang in there.  Hopefully, someone else will chime in with more direct experience that may resonate with your situation.

Fiddlegrl -- Welcome to the forum, though I'm sorry for all you've been through and the issues you're still fighting.
I will say that I've been with this forum for many years now...first during my DS's illness and healing, and then somewhat less frequently for the last few years, checking in to follow up on old friends and any new research, and to chime in when something resonates with my experience.  Pretty much ALL of the symptoms you've described, unfortunately, have been discussed here as part of the PANs/PANDAs continuum.  It stinks.
I don't have any practical experience with respect to Lyme and its co-infections; my DS's syndrome was clearly strep-related, though seasonal allergies exacerbated inflammation and the immune response for a number of years, once the PANDAs had kicked into high gear.  Like you, though, we believe his behavioral issues were tied to atypical strep infections potentially as young as 3 years of age, though certainly by the age of 6 when he was officially given an OCD diagnosis.  But he never tested positive (via swab and culture) for strep at the time, and no local doctors would give us the time of day regarding PANDAs then, either, so he went without any real treatment until he hit 12.  That's when the PANDAs brought him to an absolutely non-functional state, the research coming out of NIMH, Columbia and Dr. Cunningham had progressed, and we were finally able to talk someone into an antibiotic trial.  It was a long road, but the rest, as they say, is now thankfully pretty much history.
As a result of our experience, though, I do think it likely that PANDAS/PANs sufferers who are at a more advanced age before receiving immune and/or anti-inflammatory therapies may have a harder road with respect to healing and "bouncing back;" not sure if that's because the brain "wiring" has matured more in the interim, or if the chronic inflammatory and auto-immune responses in the body are somehow more entrenched and therefore harder to reverse.  In the end, it took my DS about 5 years in total to return to pretty much full functionality, and that was with auto-immune, therapeutic and psychiatric interventions all thrown into the mix.  He continues to contend with some OCD and situational anxiety now and again, and I'm not convinced that this will ever disappear completely.   But those issues remain at manageable levels (knock on wood), and he's happy and healthy and constructive and functional.  Pretty much all we could ask for, after what he went through.
I'm not sure how to advise you on any possible next steps, really, except to suggest that perhaps exploring some additional genetic markers and methylation issues might help you for the long term?  You mentioned genetic testing for porphyria, but did you get a full work-up?  A search here on the forum for "methylation" and "mutations" will lead you to multiple discussions regarding the methylation cycle and how genetic testing has helped point some families to a regimen of supplements and/or medications that proved to be more effective for them in light of various mutations and genetic predispositions.  Perhaps that's worth a try?  Finding a well-versed LLMD and/or integrative physician who could be your partner in working through these issues would be a bonus.
Your post was very well-written, so I'm picturing an intelligent, capable and fairly "together" young woman, so I sincerely hope you're finding moments of joy and contentment in your everyday life, despite this tremendous burden.  All the best to you!

There are studies that speak to other properties of various antibiotics.  For instance, beta-lactam antibiotics are thought to have glutamate-modulating properties, and another class (cephalasporins, maybe? my memory isn't what it used to be) are anti-inflammatory.   And if your kid is taking Augmentin, for instance, that clavulanic acid component (Augmentin being amoxicillin plus clauvanate) is thought to have some neuro-protective characteristics of its own.
There are multiple, older threads here about various antibiotic characteristics, and a Google search will give you some answers, too.

Kelly --
I suspect it is a combination of both...an unfortunate marriage of a genetic susceptibility and the PANDAS-related inflammatory response.  And it may not be a "flare" so much as a continuation of the original PANDAs/PANS immune onslaught; many of us find that a "typical" or shorter course of antibiotics is insufficient for fully addressing our kids' conditions, so a two-week course may not have fully addressed the "animal" that is PANDAS/PANs.
Our DS, too, had some mild sensory issues prior to a the full-blown PANDAs episode that sent us into a tailspin.  Once the PANDAs hit full force, we had him professionally evaluated and as with most of his behavior set, the results came back "borderline."  During PANDAs, he was alternately identified as "borderline" a number of things:  OCD, Asperger's, PDD-NOS, Sensory Processing Disorder.  You name it, the poor kid, at one point in time or another, wore a label for it.
What I can tell you is that, with the conclusion of effective PANDAs treatment, the sensory and social issues resolved 100%.  One doctor even took steps to revise his file to remove the former ASD notation he'd made there.
I would say, however, that I don't think you are wasting any effort in giving her access to OT; I think it will only help her as she heals and enforce positive behaviors and coping strategies that will stand her in good stead going forward.
All the best!

Kelly --
I suspect it is a combination of both...an unfortunate marriage of a genetic susceptibility and the PANDAS-related inflammatory response.  And it may not be a "flare" so much as a continuation of the original PANDAs/PANS immune onslaught; many of us find that a "typical" or shorter course of antibiotics is insufficient for fully addressing our kids' conditions, so a two-week course may not have fully addressed the "animal" that is PANDAS/PANs.
Our DS, too, had some mild sensory issues prior to a the full-blown PANDAs episode that sent us into a tailspin.  Once the PANDAs hit full force, we had him professionally evaluated and as with most of his behavior set, the results came back "borderline."  During PANDAs, he was alternately identified as "borderline" a number of things:  OCD, Asperger's, PDD-NOS, Sensory Processing Disorder.  You name it, the poor kid, at one point in time or another, wore a label for it.
What I can tell you is that, with the conclusion of effective PANDAs treatment, the sensory and social issues resolved 100%.  One doctor even took steps to revise his file to remove the former ASD notation he'd made there.
I would say, however, that I don't think you are wasting any effort in giving her access to OT; I think it will only help her as she heals and enforce positive behaviors and coping strategies that will stand her in good stead going forward.
All the best!

We're still around off and on, though DS has been off abx for nearly 3 years now, and -- knock on wood -- things are good! He's happy, enjoys school, enjoys his friends. He's an honor student, and his team won the State VEX (robotics) championship this year, the efforts toward which had him keeping some very irregular hours (staying up late working, getting up early to travel to competitions), to no ill effects. He's now choosing colleges and looking forward to a summer program at one of his possibles . . . three weeks of engineering study on campus, like a real college student. Then back home for high school's senior year.
 
It's been a crazy journey, and it's had its bumps, no question. But I feel pretty confident that we can continue to meet any of the challenges that pop up, what with all our experience, communities like this one, and DS's growing confidence and maturity. And I will say that none of the subsequent bumps, or flares, have been anything like the one that first put us on this road . . . much more manageable, shorter-lived, less intense.
 
I would say know that time is an essential factor in healing, and as Nicklemama and some others have opined previously, consider joining The Church of Whatever Works! We'll all get to the other side, sooner or later!

My DS was older than yours by the time his PANDAS was such that it really made school an issue, but I can certainly relate to what you're currently experiencing as my DS first got a "regular OCD" diagnosis at the age of 6, just a few months into his first grade year.
Do you have a therapist involved in your DS's overall treatment plan at this point?  Obviously, we had one because we couldn't get anyone to sign on to PANDAS at the time, let alone treat it, but he was a good resource for in-school and at-home strategies for addressing our DS's OCD (mostly perfectionism, which led to either over-erasing or avoiding writing down anything at all, for fear he would get it "wrong" somehow) and attentiveness issues.  Mostly, at the time, we made appointments with DS's teacher(s) and the school psychologist (maybe social worker, too, if there is one), gave them some material about his behaviors and what they might see (you could add "during a flare"), and any suggestions we might have for accommodating him reasonably in the standard classroom but not at the expense or disruption of the other students.  It appears your teacher is doing that with her timer tactic, though you may be right that it might increase his anxiety and, ultimately, he may still fail to "cooperate" because that OCD fear of doing something wrong will typically outweigh the fear of displeasing the teacher, in our experience, anyway.
It would probably be helpful to get the school psychologist and/or social worker involved, if possible, because they can help the teacher with appropriate strategies in the classroom, too; yours is likely not the first kid who needs some accommodations that they've come across, with or without a PANDAS diagnosis.  They might wind up suggesting a 504 Plan which would be something to consider.
I would also suggest the book "Students with OCD:  A Handbook for School Personnel," by Gail B. Adams, ED.D.  I bought copies for myself and for my DS's administrator and psychologist when it first came out.  In remembering that the school is not equipped to "treat" PANDAS or OCD, but that their goal is to give your kid the best education possible, before, during and after illness or a flare, giving them tools to meet the primary behavior set in the school setting, IMHO, is really all that we can ask of these folks.  The ideas and suggested accommodations in this book are really, really helpful, in our experience.  And because they come from a "third party," we didn't get a lot of pushback as though we were advocating for something that was inappropriately lenient or anything.
In the end, it might be that your DS needs to have auditory assessments, rather than written ones, during a flare so that he's not required to write things down on paper for a period.  He might need some alternative assignments, depending on what's at hand; for instance, my DS HATED "coloring" as his small motor skills were never up to par when he was sick and that messed with his perfectionism (staying within lines), plus, he quite honestly thought that the very act of "coloring" was a waste of his time; some kids love it, he hated it.  So the teacher came up with some other options for him that were more "spatial" and less triggering for him.  We were also able to get them to eliminate some of the "busy work" -- tasks and/or assignments of nominal value that were more "crowd control" and "quiet time" undertakings than they were teaching of basic concepts.  So, in other words, if he could demonstrate his mastery of the math by doing 5 problems instead of 10 (many of which were repetitious), then he was awarded grading in accordance with the reduced quantity of problems he was assigned.
Good luck to you!

My DS is now 17 and applying to colleges, never thought we'd see that day. Like BOBH  mentioned my DS reacted to Vit D and O3's like we had given him LSD. Super scary. But he was a paradoxical reactor as so many PANS kids are.
He also was super sensi to Probiotics but I vetted the ones he took like no-tomorrow and keep copious notes on how he reacted to everything. He's the full meal deal - PANDAS Plus who never stopped flaring once he started for almost 4 years, missed almost 4 full years of any type of school he was so impacted, and was also diagnosed with Lyme and POTS. I think he was on Abx for over 4 years straight.
Game changers for him were getting the Strep out (took over 6 months and a tonsillectomy) at the beginning of his illness, then 2 years later him getting Plasmapheresis  (TY Dr. L), and now for the past year HBOT has been UNBELIEVABLE for Lyme symptoms, so we now have one of our own. Look into hyperbaric oxygen therapy for Lyme...
My boy was almost 12 when he crashed, IVIg didn't help at all, Abx kept him from getting Strep again but didn't help him stop flaring, ibuprofen took the teeny tiniest edge off him and he took 3 caps every 4 hours for 12-18 months if not longer. PEX was huge for us, although he got worse before better, but we got the suicidal depression and schizophrenic crazy gone and our boys mind back as a result of it.
He's 17 now talking about perusing an engineering degree. Dec 11th as the 6th year anniversary of his crash. It's like a bad dream we are waking up from finally, thank gosh. I sincerely hope your boy gets well soon.

I'll offer that the younger the child and the quicker the proper diagnosis and treatment, the quicker the recovery.  At least, that's my long-term impression from participating here and other support groups/forums over the last several years.  Conversely, in kids who go longer without the "catch" and/or are older by the time PANDAs treatment is made available, the harder it is for them to "snap back."  Kind of like a rubber band; newer, tighter ones tend to snap back to their original shape, even if they get stretched out a few times.  But older ones lose some of their elasticity over time and can even become brittle so, like bobh said, they might only come back to 90% of their original size/shape or, in the most unfortunate/complex cases, they might even become brittle enough to break.
But even with what may appear to be a full or nearly full recovery, I do think you will want to remain mindful and vigilant for subsequent flares. More often than not, they're part of the package for a kid who's immune system is predisposed to dysfunction.  Employing prophylactic measures should prevent those from becoming full-on "episodes," but they don't always fully offset the new immune injury.
Good luck!