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EAMom

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  1. Like
    EAMom got a reaction from Kathy4Him in Teen accused bomb plot, rare form OCD/PANDAS   
    Yes, I agree with Kathy N, this may or may not be simple untreated PANDAS. More likely it's PANDAS treated incorrectly with psych drugs that just added problems. It's so easy for PANDAS kids to get a slew of psyc drugs rx'd, so difficult to get a proper workup and treatment (long term antibiotics, IVIG).
     
    Who knows how many undiagnosed/misdiagnosed PANDAS kids are out in the system commiting violent acts (esp. with the unpredictable mix of psych drugs on board). Maybe this IS an atypical (or even typical) presentation of chronic untreated PANDAS in a teen boy. I think it is very possible. Heck, it's also very possible he has other complicating factors (Lyme or other tick borne infections).
     
    That said, we don't KNOW it's PANDAS. From what I've heard (which may be wrong) the only "evidence" of PANDAS is a single elevated ASO. We don't know anything more, and we all know a single elevated ASO does not make a PANDAS diagnosis.
     
    Really, what this kid needs is a Cunningham test. If his lawyer was smart, and it was positive, that is something they could use in his defense.
     
    BTW, my dd was violent (rages, screaming, never hurt anybody but she was only 7) when PANDAS was full blown (even before Lexapro). Most of her symptoms were self-destructive (anorexia, depression, considered herself a "bad person") but I see no reason why it couldn't at some point have been directed outward if left untreated.
     
    @LLM I wondered the same thing. I can't help but think PANDAS network was misunderstood or misquoted. It does not sound like something they would say.
  2. Like
    EAMom reacted to JoyBop in Teen accused bomb plot, rare form OCD/PANDAS   
    There are a lot of unkowns in this story. They do not make any mention of whether or not this boy has or ever had been treated. I agree with both sides, that this could be a PANDAS case gone totally wrong, and that this child could also have a different psychiatric disorder all together. Either way, I think publicity will help all of us, and drive the point home that we must address this disorder and allow for research, education and treatments. I dont feel threatened that anyone will judge my PANDAS children (or any other children for that matter) on the basis of the diagnosis alone.
     
    I thought Dr. T. did a great job of saying he has never seen this type of behavior in all his years of research and working with PANDAS patients. It was therefor, in my opinion, a fairly written article. Perhaps it will send an SOS to our society that we do need to raise awareness and start taking this disease seriously, even if most PANDAS patients never cause a threat to anyone but themselves.
  3. Like
    EAMom reacted to nicklemama in Teen accused bomb plot, rare form OCD/PANDAS   
    My son was violent. No meds involved. Fortunately he was 5-6 hrs old then. I'm with MomwithOCD. I can't imagine my son being able to organize, plan, buy or carry out such anything, even if he had thoughts of it in his mind while in PANS exacerbation.
     
    There is more to it. On the other hand, folks need to know this disease needs recognition by the medical community, treatment, doctors getting onboard, research fast tracked and insurance companies paying for treatment.
     
    There will be negatives from this press coverage. It's our job to turn that back against them and press for our children's needs.
  4. Like
    EAMom reacted to tpotter in Teen accused bomb plot, rare form OCD/PANDAS   
    I also know several PANS kids who have had very violent, confrontational behavior when in a flareup, and I have witnessed several such episodes. And, like airial95 mentioned, there are forms of OCD that come down to very meticulous planning. DS at one point in high school, decided he was going to make sure that everyone knew that God didn't exist. He printed out hundreds (unbeknownst to anyone) flyers, and would have posted them all over the school (and I'm sure would have gotten into trouble), if he hadn't told me, and I called the school. Granted that's not homicidal, but what if that "I'm going to print out and put up a bunch of flyers, and then do the next step, etc., was just a few steps further.
     
    Now, what if the PANS was being treated with psychotropics? When DS was put on psychotropics, he became horrendously violent...swing a metal pipe at my head one time. So, yes, unfortunately, I do believe this could be associated, and until we have all the information, we may never know.
  5. Like
    EAMom reacted to airial95 in Teen accused bomb plot, rare form OCD/PANDAS   
    I'm going to offer a differing opinion. My severe PANDA boy is only 5 now, but my husband and I have often discussed that when in a flare, our biggest fear for our son is that he will end up being the next "Columbine kid". Even at a young age, it's something that we have feared is possible for him. As for the meticulous planning, absolutely could be OCD. My son will work out topics he is interested down to the most minor insignificant minutiae when he is in the throws of a flare (of course, not about something like this). The real unknown is would they actually carry it out - or is the OCD satisfied by just the planning? If you've never read the book "Triggered" - I recommend it. It's by a college kid who has pure "O" OCD - just obsessional thoughts, and many of them are violent. It provides insight into this type of OCD.
     
    That being said, we have been treating PANDAS for 3 years now, he just had his first IVIG and is pretty much at 100% (a few blips the last few days with 2 loose teeth, but that's to be expected.)
     
    If we hadn't had treatment early like we did - he would likely be institutionalized now. And yes, when healthy, my son is the most non-violent, easy going, empathetic kid you will ever know. When he flares, a switch flips - and you can see it in his eyes that he's just gone. It's scary when it happens now, at 5 years old, I'm terrified of what that is going to look like as a teenager.
     
    It's hard for me to acknowledge that we have carried these fears for our own child, but it's the truth. We no longer have those fears as badly now that he's responding so well to treatment, but they were very real.
     
    It's unfortunate that something like this is going to be associated with PANDAS now (like the Newtown/Aspberger's connection) - but we are using this to open a dialogue with our PANDAS kids (ages 5 and 7). We are using it as an opportunity to reinforce the therapy techniques that they have been using to help with the anxiety (and for my son, the rages), and to highlight that while PANDAS may be the reason they act out and do things that they really can't easily control - there are still very real consequences to those actions, as this young man is finding out.
     
    We are also going to try to use this as a stepping stone to try to get local coverage of PANDAS from our local TV/News. Always looking for the silver lining.
  6. Like
    EAMom got a reaction from Chemar in Cunningham Blood Tests   
    Good idea Chemar, done.
  7. Like
    EAMom reacted to LNN in HELP! IVIG for PANDAS $$$$   
    Dr K, like many doctors, treats based on what he sees as "true". If most of his patients do IVIG and get well and never come back, his truth is that IVIG cures them. What he doesn't see is when IVIG doesn't do the trick and those patients move on to other doctors, other diagnoses.
    From what I understand, he does not feel Lyme is a problem and even if he did test, he'd most likely order a standard Western Blot, which is not reliable. If you feel lyme is something to consider, then doing an Igenex test and/or consulting with an LLMD (lyme literate doctor) would be a better avenue. Mycoplasma is another common infection our kids struggle with.
     
    Being new to this forum, I'd browse through the helpful threads pinned at the top of the forum page and then browse through older posts, searching on terms like IVIG, mycoplasma, lyme testing, PANS, co-infections... and get a feel for things beyond strep. As others have said, knowing/treating the underlying infection is key to whether IVIG will be effective in the long run. It's worth researching and testing before dropping $$$$
  8. Like
    EAMom reacted to LNN in HELP! IVIG for PANDAS $$$$   
    First, you may want to contact the NIMH to see if you're eligible for IVIG thru their study. That would be free.
     
    If not, and you are faced with paying a crushing amount for IVIG, I want to let you know that IVIG is not the only path toward remission nor is it any sort of cure. I am not at all bashing the treatment. It has helped a lot of kids. But there are also kids who aren't helped by it or aren't helped permanently by it. I say this only because when I was facing the decision of whether to pursue IVIG, I felt like I "had" to try it or I wouldn't be giving my child every chance he deserved. I was plagued by guilt and vowed to pay for it however we needed to. We did end up doing one HD IVIG (my son was 7 at the time). Because my son had undiagnosed lyme at the time, it resulted in a horrible herx response and put the whole family thru a whole lot of he**. It ended up doing nothing to improve his health or mental state and did not make him less reactive to subsequent bacterial infections. The only good that came of it was that it helped us discover the lyme.
     
    This would hopefully not be the case for your son. But I chime in because we've been able to get my son healthy with long term antibiotics, treating an underlying zinc/B6 deficiency and supporting his health with specific supplements that address genetic issues. Tho my son is still susceptible to flares if he gets an infection, he is back to baseline for most of the time. I know many other families who've also been able to regain health for the long term without IVIG. Again. not bashing the procedure. But for those who can't get it covered and can't go broke paying out of pocket, you don't have to feel like you're denying your child his only chance to get well. You can get there without IVIG.
     
    Dr K has helped many. He has helped the whole community with his willingness to treat our kids. But he tends to not look at other treatment options and/or other infectious triggers. While you may want to look at other, less expensive IVIG options, such as home infusion, just know it isn't your only path should that not pan out. Know that you can get your child well even if IVIG isn't an option for you.
  9. Like
    EAMom reacted to mdmom in HELP! IVIG for PANDAS $$$$   
    I agree with being conservative with IVIG. We have been treating infections and underlying detox and gut issues for 2.5 years now (and quite aggressively with IV meds for the last 16 months) and my 15 yr old son has made slow, steady progress. We added HD-IVIG treatments in Jan. and he continues to make slow, steady progress. It's not a magic bullet.
     
    I would urge you to find a doc that is willing to do thorough testing and look at clinical symptoms for infections (including Lyme, co-infections, etc) before you spend a lot of money on IVIG.
     
    IVIG will not have long-lasting effects if there are underlying infections.
  10. Like
    EAMom reacted to rowingmom in Rifampin   
    Resistance to rifampin develops quickly if not taken in combination with another antibiotic.
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