kakrpa

I'm so sorry to hear of what your daughter and you all are going through - it sounds tough and incredibly frustrating. I won't say you're doing anything wrong as I think we are all doing the best we can given the circumstances.
I truly feel for your daughter as I have dealt with those horrible OCD thoughts myself - I was dx PANS almost 5 yrs ago (young adult onset w severe anxiety that immediately took hold as the pureOCD subtype). It wasn't strep that triggered it for me either (my guess is it was brought on by the pneumonia I battled immediately before this illness).
While I would typically second anyone refusing psych medications, I will tell you that I would not have made it to today without their help along w the help of a great psychiatrist. I guess I'm saying please don't shut the door on the potential for her to find some relief in even just one medicine, if it gets to that point. I know there are potential risks and benefits to each approach, just please keep an open mind.
Have you heard of TRS by Coseva, before? I just placed an order this morning and would like hear from anyone who has tried this. If you haven't heard of it nor tried it give it a search. It's premise is interesting and I'm curious to see if it will help me. Btw, I am in no way advocating nor endorsing.
Wishing you and your daughter the best. Please give her extra hugs as what she needs most right now is love and acceptance, and to know those thoughts are not HER THOUGHTS, but rather manifestations of the illness itself. They do not define her. She's likely very scared inside - it's hard to understand what's going on (even for an adult, let alone a child).
(((Hugs)))

I contacted PANDAS Network right after the episode.  This morning I received this response from Diana Pohlman:
"We heard from lots of parents and 600 innundated the producers email.  We are following up with an email to the producers as well.  Happily 20-20 is doing a great story on REAL TREATMENT mid May and that will be on ABC."

NBC is the producer for Chicago Med.
 

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.

What I like about that line above, is that it emphasizes what you directly control - your own reaction to the behavior.  A major problem for me was my own frustration.  I could regularly see that I was not patient enough.  But, if the OCD drives us nuts, it is even worse for the child, and he's just a child - without adult faculties.  So intellectually, I always have to tell myself "cut him some slack, it's not really him."  What I am talking about is not what behavior is allowed or not in the house, but about our reaction to them, in particular the severity of consequences for behavior that we impose.  We shouldn't treat each child identically, but rather according to their needs and abilities.

I don't draw a distinction between rages caused by PANS, and "behavior".  It's all behavior, I didn't think that I can truly separate the two as long as PANS remains.

There are a couple of possible factors (if not infection or immune dysfunction based):
1.  SSRI "poop-out" is real, unfortunately; you can find first-person accounts of it in forums and discussion groups all over the world, and I've seen it first hand in family members.  That said, just anecdotally, I think some are more prone to it than others.  Though the science is still not fully researched or documented, it seems to have something to do with the particular receptors that each SSRI affects; pretty much every SSRI has a different formulation that impacts different receptor sites (whether dopamine, serotonin, 5H-T, norepinephrine transporter receptors, for instance), even though there's typically some crossover among all of them.  At any rate, if the receptor sites become unresponsive, which they can do, then the med doesn't work as well.  Weight typically has little to do with SSRI dosage.
2.  We had a psych (and she's actually somewhat versed in PANDAS/PANS and certainly doesn't dismiss it) note for us that a component of our DS's increased challenges at an older age, as compared to when he was younger, were a factor of the expanding "gap" between what were age-appropriate expectations for behavior and what his jumbled brain could manage for him at the time.  It's one thing for a 3 or 4 year old to melt down in public, but when a 12, 14 or even 18 year old can't manage all the stimuli coming in and melts down, it's a whole different animal!  So, even if nothing dramatic changes in terms of environment or demands, just the fact that she's getting older and so society, friends, outside world and maybe even you tend to expect more "self-management" of her, that's a kind of pressure all on its own that might result in increased anxiety.
Sorry you're continuing to go through this; we've been there (a protracted "story"), so I know how frustrating and demoralizing it can be at points.  All I can say is that, in your shoes, I would probably first try to rule out any physical (infection or immune) component to the decline, and once having done that, maybe look into the mental health options available to try and improve the quality of your DD's life (and yours by extension).  I don't know if you've considered it, but there are now the genetic testing options available (like Genomind) that hone in on genetics and any mutations that may interfere with the effectiveness of various medications, including SSRIs.  That might be one route to pursue, particularly if the others aren't fruitful.
All the best to you.

1. Likely a drop in efficacy of the med(s) - needing now a higher dose and/or augmentation with diff meds.
2. Any additional stressors? School/life balance??
My two cents

Wombat140 - yes, I've dealt with this too (especially fear of the color red, which is my favorite color)! If u can't go down the med route, I'd highly suggest treatment with a therapist trained in ERP (exposure response prevention).

First, please know that not all kids produce strep titers and when you test titers, they peak at specific times after an infection. An ASO titer peaks 1-3 weeks after infection onset. Anti-DNase B titers peak 4-6 weeks post infection. So if you don't test at the right time, you can get normal titer results even if you have/had strep.
 
Second, a research paper out of Columbia University was published in December that proves that infections other than strep can trigger the autoimmune response behind Pandas. So EBV, mycoplasma, Lyme, staph, bacterias that cause upper and lower respiratory illness - can all be culprits. So kuddos to you doctor for being willing to consider this.
 
You can try steroids but know that if the infection is still active, any improvements you see probably won't last because the thorn is still in the lion's paw, causing inflammation. They helped my son immensely, but he had undiagnosed Lyme in addition to strep-triggered Pandas so the miracle never lasted. A tonsillectomy/adenoidectomy also helped a lot - especially with his tics, because his tonsils were chronically infected. Ultimately, my son had three triggers for his tics - Pandas, Lyme and mold in his classroom. We had to tackle all three before his tics left but he's been healthy and off all medication since. The tics were because his body couldn't get rid of the toxins that the dying bacteria and fungi were throwing off.
 
My daughter had EBV - l-lysine worked wonders for her. Monolaurin is also a good option.

From personal experience, I can say it's really important to test your genetics before you treat methylation. Guessing is not a good idea.
To start, read POst #18 here http://latitudes.org/forums/index.php?showtopic=3928&page=2
 
If interpreting is too overwhelming, there's a company called Livewello that helps with interpretations, reports. I've never used them but if you search the forum, you can find posts from people who have and maybe PM them for their experiences. You can also PM me if you'd like more links or experiences.
 
Hang in there. Just like Thomas Merton wrote about there being many paths up the mountain of faith, there are several paths toward health. We all just need to find the one that works for us. It isn't always the same path for everyone. But keep at it and you'll find the one for you.

Has anyone had experience with minocycline for myco p? When our journey began and we started the abx routine, my ds 14 was on azith. We saw results pretty quick and saw the OCD stuff ramp down significantly. We stayed on azith for couple of months and just kept on hand for flare ups (which we did have a couple of big ones). For the last few months, we have been stuck on scrupulosity ocd and we just started a new abx, biaxin, to try and bring down this flare. After one month..it has not done too much. I don't know if we could go back to azith since we had been off it for awhile or if we should request mino. Any feedback appreciated.

Thanks to everyone.
I will certainly post an update once we have a determination.
 
@Gpookie and @Tj21 -- which specific subclass deficiencies did your kids have, and did they have low total IgG and low response to pneumococcal vaccine challenge as well as clinical symptoms?
 
Tj21, thanks for the link to your other thread. Very helpful! I skimmed it and will read in detail tonight.... but I think I'm asking for info you didn't give there. And since you have BCBS as well, and got high dose IVIG approved, this info is especially relevant.
 
@Gpookie, how well (if at all) do your kids' PANS symptoms respond to the high dose and the monthly low dose IVIG?

My DS only has IgG3 (and partial IgA) deficiencies, with borderline normal response so does not fit CVID despite tons of sinusitis illnesses. I need to review the pneumovax rsponses to see if they really could fit, unfortunately the MD didn't order tests for all the 23 subtypes, and the pre and post weren't even the same sets (different lab), so it's a bit confusing.
 
My update:
 
Until this week I've been waiting for the MD who's willing to take on our case to have the blocks of time she needs time to review all of our son's records and write the letter of medical necessity. ... I just heard from her that she will start this week. Frustrating, but I know she is thorough, kind, and overworked, and that this is a thankless task for any MD. So I'm really trying to focus on the positive.

Not specifically, but frankly any atypical "stress" on the body or mind seems to inspire more OCD thoughts or behaviors in someone who is predisposed. My DS needs well-regulated meals (so that would go to low blood sugar) and sleep for optimum mental health. I realize that's no "light bulb moment" but is, rather, pretty common sense. But I think some people are just more likely to be impacted by dysregulation in the things that most people accept as good common practices.
 
I would think thyroid issues would be similar, though I have no experience with that.
 
Our psych, meanwhile, has noted that impacts to the immune system are well-documented with respect to corresponding impacts on the prevalence/pervasiveness of OCD (another sort of "duh" moment for those of us dealing with PANDAS/PANs), but she's been very insistent that it is the case with non-PANDAS/PANS sufferers of OCD as well as those identified with PANDAS/PANs. That perspective has sort of, converse to what she intended I think, fed my suspicion that most/all OCD is immune-related at its root.

We have used mino for pandas. One time it worked extremely well. Another time it had no effect. We are trying it for a month now to see if it helps current ocd issue.
 
While I have at times has thoughts of buying meds online somehow- I would not. Most importantly of course is safety, but beyond that the practical reason that you really have to work in partnership with your doc.

This is on my list to ask doctor about for ds when we go back next week.

Hi Skylar, glad to hear things went better on Thursday, how are things going now? Did she have high streptococcus results? And is she getting better (in sync with the antibiotics, or anyway)?

I agree, it is a guessing game. Its trial and error. If your able to see an llmd that seems like the best and only option. Need to see someone with experience. Otherwise it may not work, and just wasting money and time.
Doxy combined with something else would be recommended. As i have ocd, my ND seems to like combining things with augmentin, as augmentin appears to help ocd symptoms. But best to see what your Dr says.
My next step I think is going to be rifampin and mino combined starting from next week. But need to make sure my liver enzymes come back to normal first. Apperantly I had a rare reaction to one of the antibiotics.

This naturopath is treating me with antibiotics, rather than herbs. So she's more like a regular Dr actually, and that's what I was looking for.
Kakrpa, if you've only used 2 common antibiotics, then thats not enough!
There are potentially so many infective causes. Also it is recommended to use at least 2 antibiotics at the same time.
Combos such as augmentin and azithro, or clarythro, or doxy. Doxy is more for myco.
Then if Lyme or co-infection, then would try rifam, mino, tidemax... And more Etc.
Getting worse when on some antibiotics may be a good sign of herxing. You would want to look for herxing to improve eventually, otherwise perhaps it is just a side effect of the meds? Not sure. Perhaps you need to try a different combo. But just make sure to give each combo some time, as it may take a bit longer for adults to see improvements compared to kids.

Great to read some replies. I find reading these forums so useful, as it helps me think of treatment options.
Wombat, I notice that you only tried a small amount of limited antibiotics. Did you ever try Lyme/Bart/myco treatment?
I haven't noticed much gains on strep treatment either. Although in that 2 weeks being off antibiotics, strangely I feel I may be a little better now compared to 6 months ago. Its hard to tell as its so gradual.
Kakrpa, what did you try in the past? Did you try anything for infections? Did the llmd give any advice?
I'm seeing a naturopathic Dr from Canada, via phone consults. She actually tells me what antibiotics to take and I get a Gp to prescribe them. She seems fairly confident in treating these infections. But I don't have much to compare her to.
Currently she suggests doing igenex testing. It's just too expensive for me. And based on what I read I'm not sure if it will change treatment anyways. Any thoughts on this?
Thanks guys and hopefully we can help each other out!

Im also an adult with ocd, and am experimenting to treat this with antibiotics currently. Curious to hear updates on how people are going and maybe get some advise on what else I should try.

A brief rundown of my situation.
Came down with OCD at age 25 after stressful life events. Im now 32. There has been a gradual improvement over the years, but OCD still effects my life.
In the last 7 years I have tried the following.
- Mary Reed vitamin/herbal treatment for 2-3 years with minimal effect
- gluten free/low carb for 8 months - significant weight loss (already too skinny), with mild benefit.
- heavy metal detox with andy cutlers treatment for nearly a year with possibly no effect
- Anti-strep herbal treatment for about 1 year with minimal benefit
 
Now in the last 6 months I have been trialing a combination of antibiotics including augmentin, azithromycin, clarythromycin, doxy. When I started these 6 months ago I had some significant herx, with much worse OCD, these seem to improve within a few weeks, but I only seem to get back to baseline. I dont seem to make any significant gains. Every time I add or change an antibiotic I seem to herx for 2 weeks, but just go back to baseline.
I had to stop antibiotics last week due to liver enzymes becoming deranged. But I plan to start a different set of antibiotics in about 2 weeks to target possible lyme/bart etc.
All my previous blood tests are clear of any infections. So I have no particular hint of where I should be treating.
 
I personally believe that the majority of adults or children with mental health issues are likely due to an underlying infective cause.
From what I read, it seems some people see no improvement with some antibiotics, but then see gains with others. I am thinking I may have bart or some other infection, and am hoping I will start seeing more gains with different antibiotics.
I would love to hear from others, as I feel this journey is so lonely at times. So little information out there! This forum has been very enlightening and educational, and a lot of my treatment ideas has come from here.

He started DS on Augmentin for 14 days, ordered lots of lab work, and said to take him to ENT to have tonsils evaluated. We were to go back in two weeks but he was out of town that week, pushing it to 3 weeks.
 
We saw a huge improvement on the Augmentin. I was shocked. Has a new symptom of vocal tics, but all other symptoms improved. He finished it 2 days ago, and completely crashed today. Could not get to school, etc.
 
I am anxious to get his lab results. We go back on Tuesday. I've been trying to learn as much as I can. It's overwhelming...

Johnsmom --
 
Colitis is autoimmune, no? So, is it possible his immune system is just plain old topped out? Glass filled up slowly over the last while, and now it's just on a constant state of overflow, what with the colitis and all? Based on our experience (DS on a "low boil" for years until he hit 12/puberty, and then that last encounter with strep sent him way over the edge), hormones might play a role, too. I think they're generally inflammatory, so they more than likely aren't helping, at a minimum.
 
Are the steroids helping?
 
My DS's most dramatic decline was strep-induced, but he's had hyper-immune issues practically since birth: GERD, chronic ear infections, allergies. Chronic state of inflammation that eventually resulted in runaway OCD and anxiety. For us, getting off that merry-go-round was a lengthy odyssey of figuring out how best to head off every inflammatory trigger we could figure out, from strep to the seasonal allergies, and how to keep his anxiety at a manageable level long enough to let his blood brain barrier begin to heal and restore its impermeability so the crap that shouldn't have gotten through it in the first place wouldn't anymore.
 
He's improved and been generally good for a few years now, but we still have to manage his unfortunately natural tendency toward an inflammatory state and situational anxiety which can result in a return to some OCD. I continue to hope that perhaps, in adulthood, his system will finally settle down permanently. But until then, he's happy and fully functional and continually developing better skills and strategies for heading off any approaching anxiety on his own, so I'll take that.
 
Good luck to you. I would hope that between your DS's GI and the immunologist, you'll be able to narrow down the culprit and meet it toe-to-toe!

I think the developing theory behind PANS/PANDAS is that there may be any number of infections triggers that could lie behind the autoimmune cascade that results in the PANS/PANDAS behavior set (anxiety, OCD, tics, etc.). Strep just happened to be the first documented one.
 
Myco pneumonia, Epstein Barr, strep, lyme, lyme-related co-infections, even mono might lie behind the condition, and if a susceptible person were to be subjected to more than one trigger in a short time period? Yikes!
 
The other thing to keep in mind is that, perhaps one illness set things in motion (strep or otherwise), and you thought you got through/past it, only to have a behavioral decline again several weeks or even months later, in the absence of any identifiable illness. That's one of the insidious possibilities with this disorder: that once it has gotten a toe-hold, other, completely unrelated "immune events" such as allergies or mold exposure, can trigger a fresh exacerbation.
 
Have you had immune testing to measure various titers and immune function? Perhaps that will give you some additional information to work with.

Azith originally was prescribed in our PANS journey back in 2013. WE stayed on it for several months and we actually saw good results in bringing down the OCD/intrusive thoughts almost immediately. Our issue turned out to be high myco p and it did bring it down 800 points in the first 5 months and we continued on for a few more months before going off. When we have had blips, we do to azith 500mg for 3-5 days and it seems to help. Last week, we did the same as we started to see a flare up of the intrusive thoughts, but it seems to be making worse. I don't know if it is herx, but we asked for a new antibiotic to see if it could go in an wipe out the rest of this myco p any more effectively. We are starting on biaxin this weekend. Anyone have any experience with this? Also, doing nasal spray, NAC, turmeric and vit c to help with inflammation.

After a 5day course of Azith, 3-4 days after finishing the Abx course, I notice increased anxiety/OCD levels in my dd7. I have seen it atleast two times. Once in 2007, Azith was given for ear infection and 3-5 days later she had sudden anxieties for flies/bugs and after some 2-4 weeks, it subsided. This time, 3 days after 5-day course of Azith, her anxieties for objects being toxic or harmful if swallowed increased a lot with a wax-wane pattern and seems to be evolving with new worries.
 
Does anybody have such an experience with Azith (or any abx) for their kids?
 
MB

Digging up this old thread based on the recent article re: minocycline trial..... Cyberdog - did you have any luck?