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ibcdbwc

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  1. Like
    ibcdbwc got a reaction from MaureenL in Request for success stories please!   
    Also to the success storytellers - please don't leave the forum! For those of us still in the woods, we desperately need your wisdom!
  2. Like
    ibcdbwc got a reaction from MaureenL in Request for success stories please!   
    P-Mom, what treatments did you use?
  3. Like
    ibcdbwc reacted to bobh in Caught in a Loop   
    I agree with MomWithOCDSon that ERP when in the worst of PANS/PANDAS symptoms not only doesn't work, but is counter-productive.  It certainly has helped some people with OCD, so it might still be helpful when he is not as anxious - but that is not when you need the help the most.

    I am also sure that some ERP practioners will disagree with this kind of advice and point to very severe cases that they have helped.  But, they might be different if they don't have the PANS/PANDAS trigger.
  4. Like
    ibcdbwc reacted to MissionMama in Take a little break....and give some (fun) feedback   
    I knew it!! It is just miraculous that people can feel her words!
     
    For anyone that has liked it, and has become hooked (yep, you ibcdwc!) make sure to sign up on the blog post itself for notifications. When an alert for a new post hits my inbox it feels like Christmas! I will also come "here" and post an alert...
     
    Thank you so much to each of you for taking the time to read it - and to give feedback. I know it breathes life into her plight to share her experience with others. It is also good therapy and inspiration - for all of us!
     
    Kristi
  5. Like
    ibcdbwc got a reaction from MissionMama in Take a little break....and give some (fun) feedback   
    Okay. I am also hooked. What happens next? Of course we are all hoping for some grand, magical happy ending.
  6. Like
    ibcdbwc reacted to Rachel in Working Memory Deficit   
    Maybe this article would be helpful. OCD is hard to deal with.
     
     
    http://www.balancingbrainchemistry.co.uk/peter-smith/35/MTHFR-Gene-Mutation-and-Treatment-Resistant-Depression.html
  7. Like
    ibcdbwc reacted to Pandacubmomma in Working Memory Deficit   
    Interestingly, the new PANDAS clinic in Arizona is actually called "Postinfectious Autoimmune Encephalopathy (PAE)" clinic. Link is here. We have filled out paperwork at this clinic as it is the closest comprehensive clinic to San Diego. http://peds.arizona.edu/steele/cpae
  8. Like
    ibcdbwc reacted to jan251 in Working Memory Deficit   
    Whether to do IVIg is such an individual decision. For us, the only angle I've worried about is lingering infection (especially lyme&co), which is the only scenario I am aware of for IVIg making things worse. Fortunately, we are not seeing anything worse at this point with IVIg in spite of known infections (including lyme, which had been treated beforehand to no apparent avail), though we have ramped up IVig dose quite slowly. No side effects for ds. I have no plan to take our ds out of school as he's actually doing better with school at this point, with better organization. He had another infusion yesterday and might come with us to a party this afternoon (I'm sure his OCD will be on full display, but that's another story).
     
    I see the concerns over the high school transcript. With our ds in 8th, this is our last year before everything counts and I so hope we can get to a better place before high school starts; the clock is always ticking.
     
    Speaking of clocks, is AE a possible direction to explore? I wonder. I recently discovered that there is a doc (or two) at our local research university who is supposedly interested in AE. Aside from reading Brain on Fire, I don't know much about it or what the usual treatments might be, as if there's such a thing as "usual."
     
    I keep going back to the big picture, infection and/or inflammation driving anxiety. My goal I guess is to address those and then add in whatever supplements or meds might take the edge off in the meantime. For another one of my kids who is sort of pandas-ish lately - meaning increasing anxiety and a little tiny bit of ocd, that I wouldn't even notice if it weren't for his brother - I added a few supplements, a little bit of B6 and methionine in the morning, Walsh-like, and a tiny pinch of ashwaghanda in the evening for sleep and general anxiety - I haven't tried to give it to him in the day yet. These things seem to take the edge off. Zinc seems to set my pandas kid off though I don't know why as he ought to need it.
  9. Like
    ibcdbwc reacted to MomWithOCDSon in Anxiety/psych meds   
    Re. GeneSight . . .
     
    There's another one of these genetic tests called GenoMind which is focused upon neurotransmitters and other brain-oriented genetic activity. It has to be ordered by a doctor, and the cost is generally not covered by insurance. We had several conversations with the folks at GenoMind as to our costs/liability, and the bottom line they told us was $300, although it is a $5,000 test. Supposedly, they are very aggressive with the insurance companies and handle all of that haggling on their end, but if all else fails, the most they'll bill the patient back for is $300. Unfortunately, we couldn't get them to put that in writing (said they can't do that because it might be construed as "advertising"), and our DS was doing well on his current regimen, so we didn't do it in the end.
     
    That said, I love the idea of testing for this purpose, and I'm glad to hear about another option to GenoMind as I think competition will go some way toward keeping the costs down.
     
    Good luck!
  10. Like
    ibcdbwc reacted to LNN in Anxiety/psych meds   
    Beerae - right there with you re:not wanting to use SSRIs because it feels like you can never stop. But when my DD11 restricted her eating to 350 cal/day in Aug and couldn't function due to panic attacks, I relented. It seemed cruel to withhold something that had the potential to take the edge off such intense fear and pain.
     
    She started on Lexapro 5mg. It had the immediate effect of making her tired at night - and since her anxiety was keeping her up until 1 am and not allowing her to sleep after I woke for work at 5:30am, this in itself was a benefit. By making her tired, it also significantly cut down on panic attacks, since 90% of them happened at bedtime. But that said, I don't think it made a dent in the OCD, general anxiety or any other issues. She continued to fall off the cliff with other symptoms and continued to lose a dangerous amount of weight. Thankfully, we saw Dr M and he put her on steroids and 2 bx and within 36 hrs, she was a different kid - in a really good way.
     
    Because she still has issues, albeit far more manageable, I find myself in a position where I don't dare pull the Lexapro, or anything else, until she's back to her normal weight and much more steady. So yes, we are sort of stuck with it, even if it's not the thing that turned her around. I do wish I'd done things in a different order and avoided putting the SSRI in the mix, since it does complicate the picture. But...here we are and even if all it's doing is helping with sleep, that's not a bad thing. But once things have been stable for some time, probably next spring/summer, the SSRI will probably be the first thing I look to remove.
     
    You need to do what your gut tells you. If it doesn't help, you'll know you tried. If it does, then that's a good thing. But I totally get your concerns.
  11. Like
    ibcdbwc got a reaction from MomWithOCDSon in Anxiety/psych meds   
    There is a test called Gene sight that you might look into. I honestly don't know much about it as I haven't done the research. But i was willing to buy into the idea to eliminate some of the trial and error mess.
     
    We were prescribed zoloft at age 8. It was horrible. Sent him into a frenzy and we took him off after a week. This was pre-pandas diagnosis of course and we didn't start the dose "obscenely low." The pill also has dye - which we later found out causes hyperactivity in my son. So it could have been other things that caused his negative reaction.
     
    Fast forward to age 12 when we tried Prozac. It had almost an immediate calming effect which was wonderful. However, he became oppositional and somewhat suicidal within a few weeks. We were at very low doses -- but he also had just had a fever and some terrible stomach virus at the same time. Again - may have been other things that caused the negative reaction. But...
     
    We recently did GeneSight which confirmed that we should stay away from several of the SSRI meds due to a gene that has trouble with serotonin transport. However a few of the newer SSRIs and some of the SRNI's should be okay for him. We have not tried that class again yet, but we are on low dose lamictal. I am not sure it is helping but it is also not hurting. The Gene Sight test can at least help you narrow down the choices.
     
    I am not against psych meds at all IF you can find the right one to offer relief. I think they've helped a great number of people.
  12. Like
    ibcdbwc reacted to MomWithOCDSon in OCD or Anxiety?   
    If you are truly "obsessively" worrying, I would tend to categorize that as OCD, given the "obsessive" part of it. Not to mention, obsessive thinking seems to be a very common manifestation of OCD, particularly for older, adult sufferers as your intellect provides more vulnerable fodder for the OCD beast to exploit.
     
    That being said, and OCD manifestation or behavior doesn't rule out PANDAS/PANS. Personally, I'm of the opinion that, 20 years from now, there will be little, if any, distinction between "regular OCD" and PANDAS/PANS or OCD behaviors born of immune dysfunction or other biochemical processes. In other words, I think all the existing "regular OCD" diagnoses that have been handed out willy-nilly over the last couple of decades are probably mis-diagnoses. Or at least a failure on the part of the "experts" to dig into the root cause of the disorder, rather than just label it, medicate it and move on. Such was my son's story.
     
    Given your history with strep, I would definitely suspect a bacterial/immune genesis of your disorder. I would pursue all medical avenues, while also availing yourself of the therapeutic resources (CBT/ERP) available to you to help keep the OCD compulsions and obsessions in check as you search for and deal with the medical root of your current concerns.
     
    Good luck!
  13. Like
    ibcdbwc reacted to SSS in Igenex Negative for Lyme?   
    Here is my thought:
    Average Joe Blow off the street is not getting a blood draw shelling out a grand for Lyme and co-infection testing to Igenex.
    Igenex is getting blood
    from symptomatic folks who Dr.s have signed off a Igenex blood order test
    because there is a case for Lyme and co-infections.
  14. Like
    ibcdbwc reacted to wisdom_seeker in Igenex Negative for Lyme?   
    My son also tested negative on Igenex, for Lyme and all co-infections. One band on Western blot; that's it. So they don't all come out positive!
  15. Like
    ibcdbwc got a reaction from MomWithOCDSon in Klonopin or prednisone? intense anxiety before tomorrow's school start?   
    I don't know how to help you or your son. But wanted to say my thoughts are with you as you navigate this horrendous journey. Surely there is a lesson for us all somewhere on this path. I'm still looking and learning after all these years.
     
    I just cant imagine how difficult it must be for a teenager (my son is 15) to face these misunderstood debilitating symptoms. As if being a teenager were not difficult enough.
     
    Good luck to your son tomorrow. That first step is indeed a giant leap!
  16. Like
    ibcdbwc reacted to Plum99 in I am so thankful   
    I am so thankful for all the posts that not only give details of symptoms, links to studies, ways to treat, and especially the personal stories that let me find connection and hope.
    I am so thankful for the people who have sent me private messages, even though I have harassed them endlessly with my own meltdowns and questions. And for the people who respond to my posts too. None of you get paid to listen to me or brainstorm, but doctors do. Thank god there are people who just care.
    I am so thankful for the Internet. I realize that if I were going through this 20 years ago, i would have nothing.
    I am thankful that I can see, from my position right now, all of you who have made it at least partially over to the other side, and you're so composed, and knowledgeable. It gives me hope that my own insanity, possible PTSD, and anger that has come out of this whole situation might possibly pass, and maybe I'll be a normal human again someday.
    I am thankful for every time I read something about not accepting diagnosis, or answers, or labels, when I can see what is going on with my child. It makes me feel more and more confident each time I go through weeks of being told nothing is wrong, or nothing that is treatable anyway, that I'm going to eventually get another call telling me that actually there is still an infection. And even though no one wants to acknowledge it, we all know that this is just another time, probably the hundredth by now, that it really means that I should have been listened to, I wasn't wrong, I wasn't making things up, I wasn't spending too much time googling, and if I would have been listened to right away, this didn't have to keep spiraling. I know the message is known, even if it is disguised by criticisms and suggestions that are not relevant.
  17. Like
    ibcdbwc reacted to MomWithOCDSon in Teen: changing to psych drugs   
    He's been taking it for about 3 years now and yes, continuously. We'll likely reassess in the next 12 months or so, given how well he's been doing and the fact that we've now made it through the going-away-to-college transition. But I think we're all still so relieved that he's happy and healthy, we're a little loathe to rock the boat, and his doctors have thus far agreed on that point.
  18. Like
    ibcdbwc got a reaction from BeeRae22 in Flaring again...thought I was done here   
    I just wanted to say you are not alone. We have experienced joyous periods of remission but gut wrenching recurrences. The roller coaster is unreal.
  19. Like
    ibcdbwc got a reaction from jan251 in slow growth   
    My son dropped off his growth curve around age 10. It wasnt dramatic. His weight curve dropped from 75th to 25th and his height dropped from 80th to 45th. The doctors told me it was not that unusual around the time of puberty and to not be concerned. At age 12 he continued to stay in the lower percentiles and he had delayed tooth eruption. Prior to this he was one of the early ones to get teeth -- yet now he was late to lose them. Age 12 was also one of the worst years for his PANDAS - it was manageable with antibiotics prior to this. Age 12 was awful.
     
    Eventually, he was screened for celiac and his tissue transglutaminase was very elevated. This is a marker specific to celiac in about 95 percent of cases. It could have been a false positive or a problem with another autoimmune condition -- but it was enough to go gluten (and dairy) free.
     
    Within 6 months, he lost all the teeth he was supposed to lose and launched into his major growth spurt - grew 5 inches that year and is still growing. His PANDAS issues resolved but sadly returned a year later. He still suffers as a result of gluten/dairy/soy contamination/infection (strep) and he's allergic to a host of other things now. We continue to work on gut issues and methylation (some of his supplements we discovered were doing more harm than good). We are in a better place as we get older -- but not healed by any means.
  20. Like
    ibcdbwc got a reaction from SSS in Flaring again...thought I was done here   
    I just wanted to say you are not alone. We have experienced joyous periods of remission but gut wrenching recurrences. The roller coaster is unreal.
  21. Like
    ibcdbwc reacted to wisdom_seeker in I want to know the "why's".....   
    Bump. I wish we could pin this, for there's so much wisdom in this thread.
     
    I love
    Dasu's rant (I can so relate!), ibcdbwc's detailed, heart-breaking (and oh so accurate) description of what a flare is like. Missionmamma's wish that her kid would just go to school, and confusion about why he's not. (Describes our house! DS is brilliant, can crack jokes, play certain videogames, and yet most any schoolwork fills him with terror. I think you two put your finger on why.) the discussion of when/how to suspect and test for Lyme, and, last but not least,
    Albymom's thoughtful description of why she's gone to IVIG + rituximab + cellcept. Interestingly, my son's neurologist just requested rituximab along with IVIG for his first infusion. On recommendation from the PANS clinic, I believe.
     
    Of course, Insurance denied both. IVIG is "not medically necessary for encephalitis/PANS". Rituxan is investigational for this condition.
     
    The clinical notes the MD sent along as documentation included mention of his PANS diagnosis, as well as her diagnosis of autoimmune encephalitis, and that's what insurance is now latched onto . Dunno if we can recover from that.
     
    About the rituximab... I was surprised by the rituximab, so I started reading about it in encephalitides, and the literature I found on anti-NMDA receptor encephalitis also shows better results when rituxan is added early, with suggestions that doctors consider giving the combo as first line treatment. So even though I'm apprehensive, I'd go for it.
     
    Both in autoimmune encpehalitis and cancer treatments, I believe that aggressive treatment early has the best outcomes. Which is why I keep wondering if we should just stop waiting, pay for the Tx ourselves, and hope to get reimbursement if/when he has a great response.
     
    As far as this topic, I'll add as well.
    *I* want to know why (or how come)
    ICD-10 still has no diagnostic code for autoimmune encephaitis?
    MDs treating anti-NMDA R encephalitis or other encephalitides are able to order IVIG and/or PEX and rituximab, since most insurance plans don't cover those?
    it appears that MDs for lots of kids on this forum have gotten HD IVIG paid by insurance, even though immune deficiencies are generally only treated with LD IVIG. How do they justify that?
    And, my newest frustration:
    How come a phone call to insurance is able to trigger an appeal without the patient or MD realizing it! My MD's office insisted she was working on an appeal, yet Anthem heard a verbal request and ... upheld their previous decision.
    How come insurance service reps aren't required to get a positive confirmation, such as "are you requesting an appeal?" "Do you want to add any information, or include any specific questions for us to answer?"

    I believe what happened is that Anthem's provider line took our MD's request for peer-to-peer review, in which our MD asked that "another MD review this" and took it as a request for a 1st line appeal. So now it looks like we've blown that -- with no additional information given to the insurance, and of course, no additional rationale given by the insurance. This wouldn't be terrible if 1st appeal only looks at the plan language anyway, and only the 2nd appeal can rule on "exceptional / extenuating circumstances (like diagnoses w/o an ICD-10 code). In that case blowing the 1st appeal may not matter, but I still would have wanted to at least pose Qs like "what is it that you claim will be more effective than rituximab for his condition?". i'm tired, pissed. Did I say discouraged? Hopefully I'll feel better in the morning, but I've been having a ton of trouble falling asleep. Maybe my kid isn't the only one with intense anxiety and dark intrusive thoughts!
     
    So this was both a rant and a real set of questions. Empathy and real answers are both welcome!
  22. Like
    ibcdbwc got a reaction from wisdom_seeker in I want to know the "why's".....   
    I would like to add just 1 cent to this conversation. My son is 14. An interesting development occurred in that he is now able to describe what a flare feels like for him. This never used to be. When he was not flaring, he barely remembered the flare itself. And in a flare, communication was next to impossible.
     
    But a light bulb occurred. He can now describe it. He can now remember it. Unfortunately he also lives in fear of "it happening again." When he is flaring, his brain is swollen. To him, he feels like his head is wrapped tightly in a dark cloth. He can still hear noise and see light but he cannot process quickly enough. It's like everything is completely muffled and filtered. He's present but things are moving along without him. He simply cannot follow along in class. And that makes him feel so sad and so anxious. Because normally, he is sharp and follows right along. In fact normally he's used to being very efficient and at the top.
     
    When reading text in a flare, he must read words over and over and over to make any sense of them. His short term memory in a flare is completely gone. His working memory is also gone. With complex math for instance which is normally easy for him - he still knows how to do the problem but gets lost in the steps. He cant remember which steps he's already completed. And simple math concepts like adding positive and negative numbers are all but forgotten. There is some sort of plug in his brain. Some sort of block. I have caught him a number of times, literally smacking himself trying to figure it out.
     
    The anxiety created from all of this is incredible. He literally loses his mind -- and he now knows it -- and that makes him understandably incredibly anxious in a flare. It's horrific. Add in the OCD and food refusal - ugh. My son isolates in a flare. He knows its not his normal him.
     
    If your son is like mine its no wonder they don't want to go to school when they are flaring. It's painful to not be able to do the things they know they should be able to do.
  23. Like
    ibcdbwc reacted to Albymom in I want to know the "why's".....   
    A highly reactive immune system can have many causes. I have given up searching the internet trying to piece all the clues together. Our PANS expert doctor explained that once triggered, auto-immune and/or auto-inflammatory diseases can take up to five years to fully heal. Our daughter sounds very similar to your child. She has always tested negative for everything but she is classic PANS with onset 1 year ago. They eventually deduced a valid hypothesis for a cause (a rare autoimmune disorder), but her specific situation is still fuzzy and anyway it's not really important in terms of the point I want to make.
     
    Our daughter responded very well to abx at first (even though she had no active infections), then she slipped. They moved her to HD IVIG (she's had 5 since Halloween), and to steroids (both oral Prednisone and IV-infused Solumedrol). Each treatment would return her to normal for a few beautiful weeks - sometimes as many as five in a row -- before a cold sore or a loose tooth or a stupid common virus would sink her again.
     
    Because her relapse and remission pattern was so clear, and because it was clear she is triggered by almost any insult to her immune system, our doctors moved us to the next level treatment in January. We are now doing Rituximab infusions and Cellcept to tamp her super-reactive immune system.
     
    My understanding is that these two treatments have, in the past, typically been reserved for "severe" auto immune / auto-inflammatory PANS cases, but our daughter is quite functional and she is now more behaviorally "normal" than not. When she is in remission, she can reach between 90 - 100% baseline "normal". She attends school daily (unless she gets a virus, a loose tooth, or another type of immune system insult), and when she's well she does quite well both socially and academically. It's amazing to us that she's having such a great year school-wise, despite having missed 30 days due to PANS. If you met her or taught her in your classroom, you might not even notice she was different. Yesterday, one of her teachers emailed us to say it is "truly amazing to see the difference" in our daughter between days she's not feeling well, and days when she is 100%.
     
    I've heard that some clinics are moving to Ritux and Cellcept treatment sooner than they would have in the past for kids with continued, highly reactive immune system responses. I encourage you to look into the next level of treatment for your child. Is it terrifying to consider a form of chemotherapy (Ritux) along with an anti-organ rejection drug (Cellcept) for your child? Absolutely. While is was not a decision we made lightly, in some ways wasn't really a decision at all. When the choice is to continue this push-and-pull heartbreak of remission and relapse, when you live in constant fight or flight mode just waiting for PANS to kidnap your kid at any minute, stealing more days from her beautiful life, and when your child has reached steroid toxicity levels and nothing else seems to "holding" her at well for more than a few weeks at a time, then moving to the next level isn't really a choice.
     
    Our daughter's risk for infection is higher because she is now taking these drugs, however, as our doctor put it: "If she gets an infection, we admit her and treat the infection and she goes home. The number one, most critical priority is protecting her healthy brain." The goal is to suppress the auto-inflammatory cycle long enough to give the brain time to heal. This can take up to five years. Many kids are on this protocol for many non-PANS-related conditions and they live very normal lives.
     
    Good luck.
  24. Like
    ibcdbwc got a reaction from Sirena in I want to know the "why's".....   
    I would like to add just 1 cent to this conversation. My son is 14. An interesting development occurred in that he is now able to describe what a flare feels like for him. This never used to be. When he was not flaring, he barely remembered the flare itself. And in a flare, communication was next to impossible.
     
    But a light bulb occurred. He can now describe it. He can now remember it. Unfortunately he also lives in fear of "it happening again." When he is flaring, his brain is swollen. To him, he feels like his head is wrapped tightly in a dark cloth. He can still hear noise and see light but he cannot process quickly enough. It's like everything is completely muffled and filtered. He's present but things are moving along without him. He simply cannot follow along in class. And that makes him feel so sad and so anxious. Because normally, he is sharp and follows right along. In fact normally he's used to being very efficient and at the top.
     
    When reading text in a flare, he must read words over and over and over to make any sense of them. His short term memory in a flare is completely gone. His working memory is also gone. With complex math for instance which is normally easy for him - he still knows how to do the problem but gets lost in the steps. He cant remember which steps he's already completed. And simple math concepts like adding positive and negative numbers are all but forgotten. There is some sort of plug in his brain. Some sort of block. I have caught him a number of times, literally smacking himself trying to figure it out.
     
    The anxiety created from all of this is incredible. He literally loses his mind -- and he now knows it -- and that makes him understandably incredibly anxious in a flare. It's horrific. Add in the OCD and food refusal - ugh. My son isolates in a flare. He knows its not his normal him.
     
    If your son is like mine its no wonder they don't want to go to school when they are flaring. It's painful to not be able to do the things they know they should be able to do.
  25. Like
    ibcdbwc got a reaction from MissionMama in I want to know the "why's".....   
    I would like to add just 1 cent to this conversation. My son is 14. An interesting development occurred in that he is now able to describe what a flare feels like for him. This never used to be. When he was not flaring, he barely remembered the flare itself. And in a flare, communication was next to impossible.
     
    But a light bulb occurred. He can now describe it. He can now remember it. Unfortunately he also lives in fear of "it happening again." When he is flaring, his brain is swollen. To him, he feels like his head is wrapped tightly in a dark cloth. He can still hear noise and see light but he cannot process quickly enough. It's like everything is completely muffled and filtered. He's present but things are moving along without him. He simply cannot follow along in class. And that makes him feel so sad and so anxious. Because normally, he is sharp and follows right along. In fact normally he's used to being very efficient and at the top.
     
    When reading text in a flare, he must read words over and over and over to make any sense of them. His short term memory in a flare is completely gone. His working memory is also gone. With complex math for instance which is normally easy for him - he still knows how to do the problem but gets lost in the steps. He cant remember which steps he's already completed. And simple math concepts like adding positive and negative numbers are all but forgotten. There is some sort of plug in his brain. Some sort of block. I have caught him a number of times, literally smacking himself trying to figure it out.
     
    The anxiety created from all of this is incredible. He literally loses his mind -- and he now knows it -- and that makes him understandably incredibly anxious in a flare. It's horrific. Add in the OCD and food refusal - ugh. My son isolates in a flare. He knows its not his normal him.
     
    If your son is like mine its no wonder they don't want to go to school when they are flaring. It's painful to not be able to do the things they know they should be able to do.
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