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BeeRae22

2weeks back on Bactrim- dd still spiraling

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Shortly after removing Bactrim, dd started struggling... Excessive hand washing, fear of getting sick, complaining of not feeling well, etc. she was off for about 4 weeks. Now back on full dose for 2 weeks. I thought she was improving but she's not. Breathing tic (never had this before), skin picking again, doesn't want to do anything or go anywhere, failed play dates (calls to go home soon after being dropped off saying she doesn't feel good), some separation anxiety (from me) mild aggression (particularly when bored, but she doesn't want to do anything except go to dance, which she has M-Th evenings, so the long weekend is awful, and the summer classes are ending this week, so I don't know what I'm going to do with her after that).

 

I am so down, frustrated and tired. I just don't know what to do any more. Usually around the 2 week mark we see improvement and I don't feel like I'm seeing any yet. I feel like nobody has any answers, I don't know what to do, and this summer which we have all been waiting for is just becoming a very long, drawn out mess. I'm seeking counceling for myself and can't find anything decent, and all day today I just wanted to get away from her which really makes me sad because I love her so much and have been waiting for the school year to end so I could spend more time with both of my kids. Why can't anyone help and fix this? :(

 

I guess I don't really have a question here, just needed to vent. I also need to stay off of Facebook sites for pans/pandas, because if I read one more post of someone "offering hope" from someone who had their child on 10 days of abx and now they're fully recovered I'm going to loss it completely. I hate feeling this negative.... I'm just so tired of this, I really can't stand it! :(

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I'm so sorry, Beerea! I know you've been hanging in there for a while, and you'll find the strength to hold on yet longer now.

 

I can totally relate to the envy/frustration over the "10 days of abx and done!" stories; happy for them, but it only stokes our own self-pity and frustration. And for me, it stoked cynicism, too. What do they say? "Misery loves company?" Not really, but it does help to know you're not alone. And for every one of those "instant success stories," there are at least 5 stories here on the forum of folks/families who have to continue to keep up the vigilance against this PANDAS/PANS beast. YOU ARE NOT ALONE!

 

I know you've been around the block on this a few times, so I don't mean to insult you by making suggestions, but: 1) have you tried a different abx besides Bactrim? Maybe its not fighting whatever your DD is fighting currently? 2) did you pull the Bactrim all at once, or did you wean her off of it gradually? Our DS always snapped back like rubber-band the first 3 or 4 times we tried to pull him off the abx (Augmentin XR in our case), so we finally left him on it for nearly 2 years straight and then weaned him off, very slowly (over the course of about 3 months). We saw a few backward steps now and then behaviorally as we were going through the weaning process, but then we would just hold firm on the dosage for a little longer, and the behaviors would settle down again.

 

I hope you find some supports locally that you're seeking; I know this sucks, and it can suck the life out of you over time, too. Take care of yourself, and I'm wishing you some good days during what remains of the summer so that you can enjoy yourself and your kiddos!

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Thanks for your understanding... Last nights was particularly frustrated, and then reading the recent posts about Rogers also touches the nerve that maybe I shouldn't be keeping her on all these abx, and just bring her for CBT instead. But she clearly started struggling after we removed Bactrim. She is also taking zith. We successfully removed Minocycline (last year?) with no problems, but this is at least the 3rd time we tried removing Bactrim unsuccessfully. She had ZERO issues for about 5 months straight before this, and now she's having so much difficulty :( We didn't wean her off slowly, but if I ever get up the courage to try this again I think that's the way I'll go. It's just so frustrating and I get so worried when I think about all the meds she's been on for the past 2 1/2 years.

And I'm going to mention the posts about Rogers again because one person mentioned that "even when their child gets a cold now, they see no behaviors" ie: their child is cured. So with that said, can a child be "conditioned" to have OCD behaviors when they have a cold, and it's not actually an autoimmune response, but solely a psychiatric one? I'm feeling so unsure about everything that I'm at the point where I'm questioning everything- especially myself. :( but when I think back to how severe she was, and how great she was doing just 2 months ago, and where she is now, I just find it hard to believe that this is "just psychiatric". I don't know, I go around and around about trying CBT again, but we did 5 months at Yale and that didnt do a bit of good. .... As an experienced pans/pandas mom (and I know it's all very individual) - do you think these kids have "residual" or "learned" behaviors, or are the flares an autoimmune response?

Sorry if I'm talking in circles. Just....so....tired :(

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:( I hear you, Beerae! Tired, tired, tired!

 

All I know about "residual" OCD or behaviors comes from our personal experience. I know how you feel, though, definitely. You read and hear about other families where the kids come away from treatment "back to baseline" or "100%" or "completely OCD-free," despite having been deeply and thoroughly dysfunctional just prior, and you wonder if maybe you're doing something wrong, or if your kid is somehow a "rarity" in this regard because they're NOT 100% "cured." Please understand I don't wish relapse or exacerbation on ANYONE, but I can't help but wonder if some of these folks only think they've dealt with the monster for the last time, but it is still lurking.

 

Again, for myself, I wind up feeling a little cynical about it. From our experience, I've come to believe that this PANDAs/PANs stuff is a mix of genetics and "invader," and so if you're genetically prone to anxiety or OCD or tics -- whether that's because your methylation cycle is inhibited by one gene mutation or another, or because your whole family has a tendency toward high histamine, or if your body doesn't regulate dopamine or serotonin like a "normal" person -- then successfully ejecting the invader and quelling the autoimmune cascade isn't necessarily going to "cure" you. You're still likely to need some tools -- if not permanently, at least periodically -- to help you deal with levels of anxiety or other behaviors that can creep in, whether inflammation inspired or genetically "wired."

 

My DS still deals with anxiety and OCD from time to time, and it doesn't appear to be microbe, allergy or specifically inflammation related. Generally, I've attributed that to the fact that he was diagnosed/misdiagnosed with OCD at age 6, and we weren't able to document the strep link or get PANDAS treatment until age 12. So he'd had 6 years to develop behaviors, "habits," based on OCD and anxiety as coping mechanisms, even though he was in therapy off and on all those years, as well, and took a low-dose SSRI for a portion of that time, too.

 

Therapy has definitely stood him in good stead for a number of reasons: it helped both him and us (his parents) separate the behaviors from the person so that his self-esteem remained relatively intact; it gave us all tools for confronting the beast when it would rear its head again (and until recently, it did, though never again to the magnitude it had before PANDAs treatment); it helped him to see that these behaviors were just that, behaviors, and not really a "normal person's way" of confronting/dealing with situations or obstacles -- once identified, as he matured and got healthier all the way around, he set about tackling them, one after the other, to mindfully eradicate them.

 

My DS is naturally high in histamine, and he has environmental allergies. In short, his body is almost always leaning toward being in an inflammatory state. So whatever's behind the inflammation, yes, I think it has a lot to do with the "flares" or increase in behaviors. So that's what we fight/guard against now, for the most part. Adequate sleep, anti-inflammatory supplements, some medications which have either anti-histamine properties or glutamate-modulating properties or both, and the bag of therapy tools. Knock on wood, he's been "well" since he was about 16, but in terms of dealing with anxiety and OCD impulses, he's continued to improve, year after year. I think his mind has matured, I think his immune system has matured, I think we're managing inflammation, and I think he's decided for himself that putting effort toward doing the things he wants to do, rather than time-consuming things the OCD/anxiety used to convince him to do, is well worth it in the end.

 

In the end, I'm a "spaghetti at the wall" kind of girl :P . I'm going to throw everything I can source at a problem, see what "sticks," and then continue to stick with that until it doesn't work anymore. From my time here on the forum, attending conferences, etc., I'm come to think that maybe there's an age-of-onset/rapidity of treatment relationship here. The younger the condition is properly identified and treated, the more likely you are to achieve a "100%," and maintain it, because the brain isn't working around the condition/inflammation, building coping mechanisms (behaviors), etc., especially if there isn't a genetic tendency toward inflammation or anxiety (or both). With a kid like mine (and yours?) though, it may take longer, and it may require a wider variety of interventions, to get them to the same place as that "luckier" demographic?

 

I know you won't give up, and you're resourceful. You guys will get through this. If you can, try to take some information from the success stories and focus a little less on the fact that they may have gotten to where you want to be, and faster. We're all going to get there, eventually, even when it doesn't seem like it!

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My heart goes out to you Beerae, as I can sooooo relate to your post! We have had a five year up and down roller coaster trying to heal our son from Pans. We actually drove across the country to come see specialists of which one I believe you see, Dr Moorcroft in Connecticut, as well as get IVIG from Dr Boubolis. I so was hoping for the doctors to tell me what path to take, and what would heal our son...but to no avail. There are so many triggers, genetic predispositions as Nancy states, and so many different routes for recovery. I feel we would be still doing the same interventions and still stuck had my husband and I not decided to make a huge treatment change on our own for our son.

 

I post about my sons turn around at Roger's as it truly was amazing. We really were falling apart before we checked into Roger's and this is after many medical interventions. I am huge proponent of merging the correct CBT/ERP, in conjunction with medical interventions if necessary for healing some kids, not an either or path! We obviously had targeted multiple infections with multiple combo antibiotics and addressed immune deficiencies....but he was still so sick, so dysfunctional! I am not sure he would have excelled at Roger's if these interventions had not been addressed, but we will never know. I also know of a family where IVIG was done during, and antibiotics were used throughout their time at Roger's. I do feel like our specialists as well as others should recognize that good CBT/ERP therapy may be a key component, and they should propose families look into it if their kids become stuck, Dr Greenblatt was the only doctor to say we need to help our son get a break from the "torture" he was experiencing from his OCD, but his field is pyschiatry, although he is very aware of Pans. Dr B and Dr M were saying give it more time, and I don't think either of them have a clue to how much we as "Pans" families put up with and how destructive it can be on the entire family!

 

Neither my son our I feel he is cured! Check out his quote he gave for the OCD movie he is going to be in. https://www.facebook.com/ocdkidsmovie/photos/a.915456028570094.1073741829.914162465366117/981276198654743/?type=3

I know he will deal with OCD and will need to keep it in check for probably his whole life. I also know with illness, stress, and insect bites etc we will need to be aware of how his body may respond abnormally. As most of us we will always have a bit of worry over our child's health....at least I know I will as it was not that long ago he was totally dysfunctional. We decided to go to Roger's because of others from this forum, and it changed our lives! I so hope that maybe the same will happen for others!

 

Please, please feel free to reach out if you would like any more information or questions answered....hang in there!

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For my DS (strep/lyme/mold), behaviors & thoughts were always resolved with medical interventions. But for my DD (staph/mold/methylation), it's a combination of medical to treat infection and environmental, nutrition/supplements for methylation and most recently, CBT.

 

I'm finding that as she enters puberty, I'm having to re-balance her entire methylation regimen, trying to find new balance as hormones take on a bigger role. But she also suffered some major trauma from the neurological damage the mold caused and she actually has true PTSD from it. We've started with a pretty compassionate therapist who's laying the groundwork to do a type of therapy called EMDR, which is a type of exposure therapy that pretty successfully helps PTSD sufferers. After 2 years of serious illness, her system is now hyper-primed to react to stress and she's going to have to learn how to find her re-set button.

 

I share your frustration and exhaustion. I've actually postponed our apt with Dr M because I don't think he can do anything medically at the moment. Our top priorities are methylation (which I pretty much have to do on my own) and therapy. The therapy piece is hard because DD is the one who has to do the heavy lifting on that one - I can't just do tons of research and give her a pill. And it's so hard to see her struggle to do this, sometimes unsuccessfully. I could also use some therapy at this point, and often fantasize about staking out a claim on an isolated beach with a frozen drink. But the funds will go toward her therapy first and then maybe if there's anything left over, I'll get my own scheduled in there. But for now, I'll just find solace in the fact I'm not alone.

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