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eljomom

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Posts posted by eljomom

  1. MomWithOCDSon---I am glad to see that you replied to this first. I DO NOT know firsthand the answer to this situation, but I feared that there would be immediate posts about NOT putting a pandas child on and SSRI for any reason whatsoever. I have heard about the negative responses, and fear them myself for my child. But at the same time, if IVIG or other pandas treatments are not helping, it makes you wonder. I know there are people here who feel very strongly opposed to SSRI's, but we have to remember that all kids are different and react differently. If we all reacted positively to the same treatments for pandas (antibiotics, steroids, ivig, etc..) then we wouldn't need this forum.

     

     

    Hi Lisa --

     

    My DS was put on low-dose Lexapro when he was 8. At the time, the diagnosis was strictly OCD (we didn't successfully get anyone to even consider PANDAS, let alone treat it, until age 12). Whether it was coincidence (early exposure exacerbation and DS successfully fighting off the strep over the next couple of months) or the Lexapro, or a combination, we thought at the time that the Lexapro was a miracle for him. After about 2 months on the dose, he was back to being a "normal" kid and remained that way for the next 4 years, more or less. We had a couple of "bumps" of returning OCD behavior during that time, but nothing major.

     

    Now DS is on low-dose Zoloft, and we believe that has been helpful to him, also, through antibiotic treatment and now beyond. We hope to get him off that eventually, but for now, we're leaving it in place.

     

    I know some others have had negative experiences with Lexapro and SSRIs in general, so I'm only giving you our experience. I would also strongly advocate that, if you do decide to try it, you begin at a very low dose and refrain from increasing it until at least 4, preferably 6, weeks have passed on the initial dosage. They tell you that with SSRIs it can take 4 to 6 weeks to reach full efficacy, and unfortunately, I think some docs make the mistake of increasing the dosage too quickly when our kids don't respond quickly. Then they get too much and they get activated (increased behaviors rather than decreased), and we get a bad taste in our mouths about these potentially helpful meds and become afraid of them as a result.

     

    Good luck to you! In our experience, a combination of PANDAS and "conventional OCD treatment" has been the most potent, successful combination with the best results. Perhaps it will help your DS, also.

  2. I e-mailed our insurance agent a couple days ago. I can't take the $6000 in-network high deductible plan anymore. My husband and I are arguing about it. He says for $304 a month and $6000 deductible, it's way cheaper than going to a more expensive "co-pay" plan. I just don't know.

     

    Anyhow, our agent gave us some quotes based on my dd having a "Level 4" rating. Level 4 people can't even get life insurance rider! We have not gone through underwriting yet, but she said she put her in as a level 4 just based on her "situation." I thought Level 4 was for life-threating (high liability) people. What about pandas is level 4? Heck, what about "chronic tic disorder" or "post-infectious encephalitis" is level 4??

     

    Also, anyone have any advice for filling out questions for underwriting, so we are not giving more info. than we need to?

    Thanks!

  3. holy cow---soooo interested in this. I spent most of yesterday going over some of my zillions of scribbled questions and notes about pandas/pans/pitand/cans.....and what you pose is really what I have come up with too. The cytokines (which aren't an abnormal thing in and of themselves, I dont think, but the BBB being opened because of them is the issues. But then what. I fear the ivig, etc are a band-aid too. I am curious who diagnosed your daughters illness? Have you asked them about cytokines, and BBB?

    We had a really bad time after dd had a deep skin avulsion at the end of the summer. Within 4 days of it, her tics were through the roof for close to 2 weeks before going downward toward her normal baseline of tics. I know that an injury and immune response/inflammation (from healing) can cause pro-inflammatory cytokines, so to me, this was diagnostic in and of itself.

  4. In 2011, how many articles disputed PANDAS? One or two? In 2011, we had 26 news articles, a handful of case studies, a resurrected NIH study, various articles in respected journals including the Journal of Pediatrics (same journal this is in), and represtation at various conferences all acknowledging the existence of infection triggered neuropsychiatric symptoms. These guys have to play catch up. They are being forgotten. They don't like that.

     

     

    I agree - CANS you say "we need to pretend we are in the lead again and give this thing our own name before all the folks who have been working tirelessly to move forward say that it can be triggered by any infection and call it PANS"??

  5. I had the same thought T. Mom!!! Too bad most specialists think they are higher up than God and can't take a phone call to answer these questions. But you have a great point....maybe we could all just "use" them for the blood workups, and then move on.......dun dun dunnnnnnn.......

     

    quote name='T.Mom' timestamp='1325891488' post='128589']

    I vote we just call it *#@* and leave it at that!!!

     

    I have half a mind to take my d up to Singer and have a work-up -- just to see what he would suggest!

     

    Maybe THAT is the answer, start flooding his appointments with Ps kids from the mid-atlantic region -- with our histories and reactions, just to see what the heck he says!

    Send him the articles from the last three years, the interviews, etc.

     

    Who are the co-authors (Wolf seems to be a colon-guy !?! maybe just in training...)

  6. Kimballot got me thinking in a post reply to the CANS stuff....about how they don't address the kids who do NOT show a rise in titers with strep. I guess immune deficiency would be a reason a child might not have a rise in titer. But what if they are NOT immune deficient and still don't get a titer rise. Is this possible? Or maybe the rapid was false-positive?

     

    Other question from the CANS article....is the NDMA test proposed by these guys the same as the methylation gene people have talked about?

     

    Sorry to post 2 topics at once....on a very slow laptop right now, and don't have the patience to post twice...

  7. PowWow--just said this exact thing to my husband earlier today: "but if some of these doctors were to wake up to PANDAS nightmare in their own children or grandchildren tomorrow- they might see it differently." I was telling him about being the laughing stock at the pediatricians because when i took dd in for throat culture with no symptoms other than tics going into overdrive for a good week.....and told her that our pandas specialist told me to tell them to "do an aggressive culture and do the nose too"---well, she was aggressive all right. I jokingly told her the joke (also relayed by a pandas specialist!!!) that if you don't see a speck of blood on the swab you probably weren't aggressive enough. Well, she about fell on the floor, and after she swabbed my dd, she held the swab up and said "sorry, no blood." So the next time we went in for a culture, the nurse says "don't worry, I remember you......dr. so-and-so was joking with me as I was walking in here" CHAPS MY you-know-what. thing is, if it was their kid, not only would they have spare rapid tests in their own medicine chest at home, they would probably have had their kid darn near cured by now....

    sorry...i digress...

     

    I will agree that I am really, really concerned about the autoimmune term disappearing from the description. Whether it is PANS or CANS (and whether it is a PANDAS doc or an "anti-PANDAS" doc saying it)-- it is ignoring the CAUSE of the disorder. My children did not lose their normal functioning and sanity due to NOTHING. It was not even due, directly, to an infection! It is due to the fact that they have an AUTOIMMUNE problem that attacks their brain. This has been proven due to their excellent response to pex, steroids and IVIG. This is really frustrating.

     

    UUGGHH. more to stew over. just what I needed.

     

    If CBT or SSRI would work for my kids (and we have tried and trying again!) I would fall on my knees in gratefulness. And only, only, if it was because I was a rotten parent! (not saying that I am not, but that would be an easier answer)

     

    I would not wish this on anyone- not even my worst enemy-- but if some of these doctors were to wake up to PANDAS nightmare in their own children or grandchildren tomorrow- they might see it differently. Life is not black and white, unfortunately, no matter how much scientific brains would like it to be.

  8. LaurenK--I keyed in on that same quote----I would be THRILLED to find a doctor (or to have FOUND a doctor, I should say...) who would have done a "comprehensive history and exam, blah blah blah....". So sure, if HE is actually going to do that, and not have blinders on to possible autoimmune causations, then great! He can take the title of "The Doctor Who MANDATED Thorough Evaluation and Appropriate Treatment of CANS..."

    Seems to me almost like a way for him to slink his way back in to the Pandas world, without entering Pandas...so he had to change the name to save face...I think MAYBE he wants back in :ph34r:

     

    Hm, but they say " Although inclusion in CANS requires only the acute dramatic onset of symptoms, we mandate a comprehensive history and examination, consideration of a differential diagnosis, an active search for a specific etiology through appropriate laboratory testing, and treatment with the most appropriate therapy. "

     

    They don't say "don't use immunosuppressive therapy," they just say use the most appropriate therapy.

  9. A friend just sent me a link to Robbwolf.com. It's about a Paleo diet. I assumed it was just for dieting/bodybuilding, but it is touted as so much more. Afraid to get hopes up on anything as simple (well, it's not simple to eat that way, but simple in terms of more natural and cheaper than drugs, abx, steroids, ivig, pex....), but found this from a blurb written by a parent of an autistic child who was greatly improved on paleo, and you will hear all the buzzwords in it that caught my attention (blood-brain barrier, autoimmune, brain inflammation). Just curious if anyone has tried this.

     

    Quoting, below:

     

    "I had begun reading for a couple hours a day on nutrition for several months, and I decided to attend a Paleo Solution Seminar in Toronto in March, 2011. Robb explained gut health, auto-immunity, the blood-brain barrier, and “brainflammation.” This was what really made the “gut-autoimmune” connection click for me."

  10. You know, I can't even tell you how it felt to have my dd "only have some ocd" type stuff. I say that with NO DISREGARD for those who only have ocd (without tics) and whose kids are in a terrible place with it. In fact, I know and fear that we could be there too some day....this stinkin' illness doesn't play fair. Anyhow, for a few weeks, we saw minimal ticcing. Still the evening up/tapping things, even tapping her nose, squeezing fingers (tic), and nonstop hair twirling (yah, that one gets me for some reason....). But no major, visible tics. I actually thought maybe she was going to back her way out of it all......silly me :huh:

     

    Anyhow, last wednesday, I took 3 of my kids to Great Wolf Lodge for a homeschool deal for 2 nights. The second night, our best friends, who moved to Tennessee over the summer, met us, then followed us back to VA for the weekend. They came up to pick up one of our puppies from our litter (yes, I AM about certifiable at this point -- adding a litter of puppies to my list). Of course it was exciting, and I let her watch a movie in the car on the way there (I restrict TV b/c it makes her tic like crazy). I was worried about the tics getting worse b/c of the excitement. There were late nights too.

     

    The second day there, some of the kids were really itchy from the chlorine, and especially the eyes. So Thursday night I (begrudgingly) gave her Benadryl. I am so afraid of any meds at this point. I can't remember what i heard on this forum, but benadryl is good for some pandas, and bad for others. Friday we headed home, and Friday night was loud (6 extra people in our house of already 6 people)....and early rising the next morning. repeat saturday night.

     

    Sunday morning, I saw it. The blinking. Like being shot in the gut. Then it was back. Nonstop again. Just like in SEptember after her deep knee flesh wound. It's like someone hitting the "go into depression now" button.

     

    Anyhow, trying for the life of me to figure out what happened. If it was just the excitement, then why didn't it happen before Sunday? If lack of sleep, why is it still going on, after she's gotten a few good nights of sleep again. Could the benadryl thursday night be giving her a paradoxical reaction (delayed)? could it be delayed response to a respiratory illness she had a few weeks ago? took her for throat culture today....neighbor's boys just tested positive, and we were with them monday and tuesday all a lot. (but she was ticcing again prior to this exposure)

     

    just curious for some insight.

    thanks

  11. yes, pandas16...though I thought you were looking for adults. I believe most here are moms or dads with kids of varying ages (although a few parents who believe they HAD pandas...)

     

    pandas16...have you found many who had a severe case and are NOT living normally? this is what scares me. is it that you can't find ANYONE who was severe and aggressively treated, or just anyone at all.

     

     

    Look at everyone on this forum. Not many of the old members seem to have caught it early. I like reading some of the newer members stories though. They are uplifting.

  12. emmalily---thank you for your honest thoughts here. I'm sorry I don't remember, but can you nutshell what your symptoms were, for how long, and what treatment you received. You can PM me if you'd like. Thanks!

     

    I think this is very important and, as the PANDAS patient, I have a very firm opinion on it. *I do not mean to offend anyone and this is only my opinion and experience*

     

    Please, please, please consider not forcing the ERP until you are quite sure you have done everything possible to address the medical side.

     

    I agree with Sammy, things improved for my family as a whole when they stopped pushing me to master my OCD while still sick and allowed it to play out. Before that life was h*** for all of us because they kept trying to put me in situations I couldn't handle and got upset when it blew up, and I got upset that I couldn't do it. The damage this did to my self-confidence is truly the hardest thing about all of this and I am still recovering from it, even though we all now know none of it was my fault. I could not even begin to address the OCD until my brain was functioning somewhat normally. Think of it this way: ERP tries to use healthy thoughts to control out of control thoughts. This assumes that the brain is capable of producing healthy, helpful, controlling thoughts. But with PANDAS, the brain literally is not functioning enough to produce healthy, normal thoughts. That's the whole point of it--the basal ganglia is irriated, interrupting the thought processes. So I ask you, where are those healthy thoughts supposed to come from? This could be the mental equivalent of asking your child to heal their broken leg by running on it.

     

    Therapy of some type, whether done just within the family or with a psychologist, is very important to healing. ERP and CBT techniques probably will have to be applied at some point if the OCD was serious enough. And using some in the middle of exacerbation is great if you can manage it. But, in my experience, there is definite shift between OCD caused by PANDAS and OCD that is habit. They feel very, very different. I understand many of you have young children and that it may be difficult to get answers from them about if things feel different but I would urge you to try that before going into the ERP too strong while they might still be physically ill.

     

    Again, I really, really do not want to offend anyone. I just wanted to give the most honest account of my experience as I could. By all means, trust your gut and the professionals you work with; I hope I've offered some insight to bring to those discussions.

  13. pandas16---can you elaborate on the TEXAS conference and the gut involvement? Did they get into specifics? Whenever I have asked our pandas specialist about gut stuff, she says that's all basically hogwash. Even that pandas kids don't have issues with yeast. Were they talking about yeast? gut strep? gut inflammation from allergies? Sorry to jump on this thread, but curious about this.

  14. Lisa--I wish I had words of wisdom here. I am so sorry that nothing has worked. We are in the same position, however, we have not tried IVIG. I know this might not help, but at least you can say you tried it. I can't say that much. I'm too afraid of making things worse for her, but at the same time, it does help so many. But YOU HAVE TRIED. Way to go on that one! I don't know what else you can do at this point. PEX? I do understand your frustration, and I'm so sorry you are having to live this. I wish it had worked for you. I agree that after 4 IVIG and you see nothing but worsening, I would probably drop it. Wish there was another pandas doc you could consult with about multiple IVIG and them not working.

  15. WE have wondered quite a while (years, actually) about allergies with my pitand daughter. She doesn't show "seasonal" symptoms like one of my other kids, who actually ended up with shots, but she does get red cheeks quite a bit, and they are just a little rough. She also had chronic congestion until we took her adenoids at age 5.5. She was a HUGE milk-drinker too. I have run it by our pandas doc a few times, and she basically says that the immune response from allergies is NOT enough to have an effect on pandas.

    Well, yesterday we had an evaluation for orthodontics (yah, that should be fun, given her irrational fear of anything to do with teeth/loose teeth, etc...). The ortho. took one look at her and the first thing he said was "Well, I can tell one thing about this kid which is that she has major adenoid or tonsil issues, or allergies." I told him she has no adenoids, and was recently scoped in an ENT's office, who confirmed they had not grown back, and that her tonsils are small. She used to snore a ton, till we pulled the adenoids. Not it's just a quieter purring sound. Anyhow, he then said that the way she mouth breathes, her mouth shape, and the purple shiners under her eyes are classic allergy symptoms. Suggested I call the ped. and pursue it.

     

    So, my question (FEAR) is: will skin - testing for allergies cause an pandas flair? She seems to react when she is injured (had a major skin avulsion in September, and within 4 days embarked on about 10 days of ticcing to the point people thought she was having seizures). Anyone asked Dr. B (he's also an allergist, right?) about this, or have any insight?

    Thanks!

  16. ugh.....there's the problem that chapps my a$$!!! Those of us with kids who are "not debilitated enough" can't get "EARLY TREATMENT"!!!!! Isn't that what is touted as THE MOST IMPORTANT aspect of treatment? Isn't that why so many of us want to educated our docs, others, etc so that other kids can get early treatment??? Even with a top pandas specialist, we STILL have not been offered IVIG. Not debilitated enough. Funny thing is that there are kids who tic less, less ocd, who actually ARE debilitated. It's subjective. My kid still has adah, tics, ocd, sensory issues, etc......just not debilitated. WTF?? Sorry for the rant. I do understand this is related to a research trial. It still just really aggravates me to hear that statement---"not debilitated enough."

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