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Everything posted by smartyjones

  1. YES! My son does that. I don't actually have it listed with bothersome behaviors b/c I've had a hard time trying to describe it. During exacerbation, he's too involved with other people in public. He says things to people in a wierd tone, "Hey lady, what'cha doin'?." He is very into what others are doing at a restaurant or store whereas he is not really a precocious kid or interested in strangers at other times. On his report card last year,(preschool) his teacher wrote something about him being critcal of others and provoking them. I think what you describe is it. She said it wasn't malicious but he'd tell them they were doing it wrong and argue about it and not let them figure it out by themselves.
  2. I am so, so thankful to the behavior therapist - an RN with psychology training - who diagnosed him. Otherwise, we would have tried to treat him behaviorally for years! She wasn't so helpful with practical solutions but man, am I happy she was on the ball with a diagnosis. He's 5 and I never would have characterized him as difficult; I said he had a "defiant streak" and "more tantrum prone than your average child." I used to laugh that he was my "bipolar genius". He's always had an stronger than normal attention span and has phenomenal visual discrimination - not to the point of worrisome just noticeable different than his age group. And could get irritated quickly but cool down just as quickly. All this ramped up at age 4.5 with severe separation anxiety, school phobia and odd behaviors - chewing shirt, repeating phrases, nonsense words. He had strep at 22 months, diagnosed only b/c he vomited and his brother had a postive rapid the day before. I question now if he ever really got rid of that strep and those behaviors have been pandas all along just manageable and what we thought within the range of normal for a 2 and then 3 year old. The pediatrician suggested medication "to get stuck thoughts out of his head" and a play therapist. I thought how on earth can medication be the first choice for a four and a half year old. The play therapist saw him a few times and was excellent at watching him and ticking off all the diagnosises she didn't think it was. A friend had suggested yeast. I was discussing this with the therapist who was dismissive of that but then said, "You know, there is this strange thing called PANDAS. I don't know that much about it but it's OCD triggered by a strep infection. The behaviors you describe lean toward OCD but he's awfully young for that." She later told me her own child had had RF probaby 15 years or so ago and she'd had to fight with drs on that. I thought it was not likely b/c he hadn't had strep for 2.5 years and was quite healthy compared to peers. I thought she was just dismissive of yeast. We had his titers checked and they were high, then a positive throat culture. After all that the peditrician said, "I think you'll find the strep and the behaviors are unrelated." I don't think I'll ever forget those words - that was the last time we saw her. Our new ped put him on Keflex and after 3 days he was back to his pre-pandas self. I feel so indebted to that therapist b/c our "not-knowing period" was only about 3 months. We still deal with the illness but at least we have known what we were dealing with. ~Kathy
  3. Happy Birthday Josh! I hold thoughts of much health and wellness of all kinds for your family in the coming years! ~Kathy
  4. Sorry - I forgot to add - I was investigating yeast b/c of the behaviors when the behavior therapist suggested pandas. When on the Keflex both times, he was also on Nystatin. I'm now not sure what role I think yeast has playing in any of it. ~Kathy
  5. I have no advice b/c I don't understand the differences btwn antibiotics. I will tell our experience. Oct2008 - initial intense symptoms. Dec2008 - high strep titers, + culture. Jan2009 - 5 day course Zithromax = horrible ramp up of separation anxiety & neediness - subsided approx 5 days after off antibiotic. Feb2009 - 35 day course Keflex. Within 3 days of starting the Keflex, he was much much better. Not sure when but during abx was 100% back to pre-pandas behaviors. Continued for about 10 weeks until he had a cold. Another course of Keflex saw some improvement but not so dramatic. I'm not sure why but it does seem different abx show different results with different kids. Good luck.
  6. Worried Dad - my heart feels so heavy to hear of your experience. Thank you so much for sharing. Please realize how important and helpful it is for others of us to hear your words. Are you familiar with the book The Horse Boy. It's just out this past spring - it's the story of a father and his autistic son. They actually travel to outer Mongolia to seek help. It's a great story. A documentary film of the trip will be out soon. http://www.horseboymovie.com/ ~Kathy
  7. So what do we make of the non-response to this question? Are there only recent treatments? Are they doing poorly and too frustrated/busy to reply? Are they doing well and not on this forum so much anymore?
  8. I think they don't want to admit it because they just don't know what to do about it. I've been amazed at thinking that as far as "modern medicine" has come, there still are so many things they don't know. It's reminds me of a couple of years ago when my son(non-pandas, now 7) was discussing with my mom, who was the first baby and how did they get here if there were no other people. She told him about Adam and Eve. I was like 'do you really believe that? What do you really think?' And she said, 'well I really don't know.' I said, 'then tell him that'. She said, 'I can't tell him I don't know, he'll never believe me again.' I think the mainstream medical community has trouble admitting there is so much they really don't know about how the body works, health and illness. This is something that brings up so many questions and challenges so many held beliefs that I think many people don't want to open the can of worms. Sad. Once everyone was so sure the world was flat!
  9. We chose PEX because Latimer siad our titers were in the top 2% of all cases and she thought it would take 2-3 IVIG treatments or 6-9 months vs. 3-4 days with PEX So glad your son is doing well! It is so good to hear good stories. I cried the whole time looking at Sammy this morning. Can I ask - what were his titers? Had they remained elevated for a long time? Is this correct - the IVIG injects antibodies to circulate and the PEX takes out the blood, cleans it of the antibodies and injects the clean blood back in? BCBS picked it up. Had you gone for immunological testing or was it based on the titer numbers? Thanks! Kathy
  10. So would you take that instead of probiotics? With probiotics? I haven't tried the kefir you talk about - my son tested with off the chart igg allergies to all dairy -including goat - when all this started. I've had 2 traditional allergists tell me they don't believe that test is worth anything. They agree his immune system is producing antibodies to those foods, they just don't care. Common sense tells me if I'm worried that his immune system isn't functioning properly, I shouldn't have it produce antibodies against food! I've seen a new coconut milk kefir product out and was going to try that. The homeopathic protocol we are currently using recommends no dairy and eggs. Please keep us informed of what you think of it.
  11. Meg's Mom - really helpful info! So how do you do the ERP if you don't know what the initial problem is, you just see the tantrum? We have a psychologist who is next to useless. I think he thinks we have him in a tough school and he's rebelling. He goes to a Montessori school which he loves. It's not too tough, just has things available if kids want it. Danny is 5 and reads fluently and is pretty good at math, too - fits the pandas phenotype. School phobia was part of the problem last year. Psych can't seem to understand it's not really the school that is the problem. I'm searching for someone else to help us and have an appt Oct 13 with someone who sounds promising. Here's Daniel - tonight playing baseball with father and brother before dinner. Dad says each gets one more hit before coming in for dinner. Brother hits home run first. Danny hits base hit last. Danny can't help clean up toys, yelling he needs another hit. Refuses to come in, yelling he needs to hit it in the bushes. Just yelling and getting himself worked up. I carry him in (b/c mosquitos eating him) and use calming techniques from The Explosive Child book. After much, I discover he's upset b/c he only got a base run and didn't want to be stuck on base all night b/c there's no one else to bat him in. It's not usually so clear-cut that it's unfinished business upsetting him. Is that not completing running the bases a sign of OCD? Is the problem that he needs to be able to run home or that he can't express it properly to fix it? If he could have said it in the first place, it's not so much a big deal and he could have gotten to bat again to run home.
  12. When I brought up this list to the psychiatrist and psychologist they said the ODD can be a result of OCD and they often do go hand in hand. The ODD may result in not being able to complete something associated w/ the OCD. We just may not realize the connection. I do know that once we got the OCD more under control, the ODD went away too. So much is a guessing game. Especially since they are young. They don't know how to verbalize what is going on in their heads nor do they undertsand something is going on in their heads. To this day, my son doesn't know what he was doing was wrong or odd. My son did not seem to have conflicting thoughts or obsessions. It was all actions. When you say he reacts to things going on on the outside vs inside his head...can you give an example? I pulled other from another thread b/c I didn't want to derail it too bad. I am curious about the OCD and ODD b/c my son has never presented with classic OCD or tics. It's more ODD and separation anxiety. He's doing very well now but as everyone, I'm trying to be prepared for the future. He's about 90% back with remaining strepnoxious and hyper-sensitive behavior. They're all under the anxiety umbrella but here's why I think it may be important to differentiate. He's had a potty phobia for 2 years - since we first tried to potty train him. He got the message to not go in his pants but was terrified of the potty - what a conundrum. His solution was to just not go. Yes, a 3 year old holding it for 10-12 hours. We got him back in diapers and that finally subsided after a few weeks. Just an interesting note - about 1-2 weeks into that he threw up one morning. I took him to the dr b/c I was worried he was having some serious problem. She thought his throat looked red and rapid tested and cultured him. They were both negative. I think it's got to be related. For the next two years, I had him peeing on a towel b/c he had to go to school so I needed him out of the diapers. He didn't want to be in diapers, didn't want to use the potty. He knew it was ridiculous. We couldn't get any help. I kept saying it was like a phobia. "Professionals" just wanted to talk about power struggle. Finally, after finding anxietybc.com, we were able to conquer this with 73 days of a desensitization plan for treating phobias. I said it was like a phobia, when I treated it like a phobia, he could conquer it. I think phobic fit him better than OCD but is that where the ODD obnoxiousness is remaining? I read a book this summer The Sky is Falling by RaeAnn Dumont. He fits a list common features to OCD and phobias: a need for clarity, decisions seem monumental and difficult; intense fear causing avoidance. She distinquished by saying a phobics fears are "out there" while OCD find the thoughts themselves fearful and unacceptable. A regular phobic may be limited b/c they can't do something related to what's happening in their world but OCD is consumed with rituals perpetuated by their thoughts. A phobic can tell what they fear and when not in the situation are not anxious. Sorry this is long - he doesn't seem to have rituals but does like things a certain way. Can anyone tell me ways they treated OCD that helped ODD subside? Thanks!
  13. Vicki - what do you mean about the OCD presenting as ODD? My son usually shows symptoms as ODD and anxiety. The more I learn about OCD, it seems not to fit - he has more intense anxiety. I think this b/c he seems to react to something that is going on "outside" him rather than "inside" his thoughts. Of course, I am not inside his head. He's only 5, so it could also be how it presents for him at this age. erica240 - my son is similar in that when i tell people something - like yelling, "butt,butt,poop" in the shoe store - they don't think it's that different from being an obnoxious boy. but it has that frenetic energy associated with it that is hard to explain unless you know the kid and see the behavior. it may have been on this forum but a while ago, I read a mom used the term "strepnoxious" and that so explained it b/c it is so different than just a regular obnoxious kid.
  14. Vickie - i know what you are saying and i'm not trying to belittle it. please realize all the other things you have passed on to him. is he sweet, funny, smart - what is he good at that also came from you? my brother is a diagnosed schizophrenic - we have a family history of it. (which i find interesting b/c i also think my nephew has undiagnosed pandas for a number of year - i've seen some mentions of schizophrenia having possible bacterial/viral link) i once took part in a dna study and asked the counselor about percentages and chances of me having a child with schizophrenia. her reply was that i could follow it up and end up with a .0x whatever chance but really what weight would that have in my decisions to have children. i think it's certainly interesting to look back in the family tree for what it can tell us to move forward but to keep it in perspective that it is one thing among many others and no person or decision is really defined by single factors. lately i've thought of that song from a number of years ago that was a college graduation speech put to music. it stated something about how it's never the things that we worry about that get us - it's the mack truck that smacks you out of nowhere on the highway. I think we've all been smacked by that mack truck with pandas. And even if you knew it was a slight possibility to get you - would you have changed your decisions? you've given him plenty of good as well as this whacked gene! ~Kathy
  15. are the ones of you that are replying to this thread cases who are included in pandasnetwork original 20 or compiled 70 cases? i've not actually spoken with anyone from this forum or pandasnetwork except in these posts. obviously, we're all at differing stages of the illness and working with different healing methods. i don't really have a handle on how many cases are on this forum. does anyone know? please correct me if I'm wrong - it seems there was a wave and a group started by Diana - pandasnetwork states symptoms began 2007-2008. is there now a second wave beginning 2008-09? (I'm thinking in terms of school year b/c that's how my mind works now and my son began sypmtoms Sept/Oct 2008.) or are most of you included in the pandasnetwork cases? ~Kathy
  16. I have seen intercellular strep mentioned often here. i've tried to google it but i can't get a good handle on what/how that occurs. my son has had high aso and anti-dnase. they've come down but are still high. our pediatrician cannot imagine that he'd still have strep - where could it be? he's never had a bone break, never had dental work, never had invasive procedures -but agrees those titers should not still be so high. does anyone have good info that explains intercellular strep? if a PANDAS kid reacts to other viruses, is it a skewed immune response in general or does the immune system release the offending antibodies even though the infection isn't strep? thanks, Kathy
  17. we're using Xclear nasal spray and biotene toothpaste. I have the boys spray their nose as part of their coming home routine. at first, they didn't want to - then they sprayed it into the air and when they realized they could actually put it in their noses and spray, they were all over it! i figured it couldn't hurt. Kathy
  18. dc mom - did dr latimer send you to georgetown for testing? i'm with you in frustration that "all roads lead to hopkins". a few neurologists in my area that don't see kids have cheerily referred me to hopkins. i wrote to anxietybc.com - based in British Columbia - for a psych referral b/c i like their info on the website. it went down a little road and ended it up at - hopkins my son is doing fairly well now so i'm trying to get ducks in a row for the future and trying to not take the initial $ hit for latimer if i can do some of it under insurance. it doesn't seem so promising to do it this way. please keep me posted on what happens at georgetown. thanks, Kathy
  19. Someone posted a few days ago about putting the results in a binder - you're a genius! I have my silly file folders of test results, notes on behavior, notes on dr's visits, etc. and I find I am fumbling thru them to find what I need - at home & in a dr's office. Of course! A binder! Thank you!
  20. Could you somehow screen for the willingness in attitude to accept different explanations about the behavior than typical? Falling Apart - that amazes me that at only 20 years old, your care-giver would be set on her thoughts about discipline! I find the administration at my son's school a bit rigid in accepting what I am telling them. They're not so interested in learning about PANDAS. Although they are trying and are somewhat helpful, they are stuck in believing I was instrumental in "allowing" him to not go to school last year. They tend to see his behavior in typical patterns although yesterday the educational director told me he's the most extreme case of anxiety they've seen in the 20 year history of the school. Of course he is - you've probably not dealt with PANDAS before! Bock's 4A book was very helpful when we first were investigating PANDAS. I find the article from School Nurse News helpful as well as the book The Explosive Child by Ross Greene and Freeing Your Child from Anxiety. Also the website anxietybc.com is very helpful for anxiety. Could you see how willing the nanny is to reading these types of things - or maybe your notes and highlights if not the whole book - to get a perspective on it? Good luck, Kathy
  21. I read Freeing Your Child from OCD by Tamar Chansky that mentions it. After reading it, my son doesn't so much exhibit OCD as extreme anxiety. I am now reading Freeing Your Child from Anxiety by her that mentions PANDAS. it's only about 1-2 pages and discusses strep can bring on these behaviors but seems to say in most cases a treatment of antibiotics make the problem go away. it says some cases don't respond and mentions IVIG and PEX as experimental and not widely accepted. I know Bock's book discusses the PANDAS turn on a dime rages. ~Kathy
  22. Karen - thanks so much for your info. I feel there are a few of us here that are experiencing good times but are concerned about what we need to have "waiting in the wings". Do I understand you correctly that you are doing daily pen vk and no testing at this time? You'll do the cunningham test in a month? Planning to treat an exacerbation with steriods thru dr. l? thanks, Kathy
  23. "We went to see a conventional immunologist recently and he said that we really need to understand what is happening from an immune perspective as well as an allergy perspective because even if we cure PANDAS with IVIG, we are still susceptible for another auto-immune disease 5-10 years from now." hi Elizabeth - did the immunologist tell you his take on what was happening from an immune perspective? what were his suggestions? thanks, Kathy
  24. we are trying something similar that i found on a post a few months ago here - try searching homeopathic on this forum. it's rather difficult to get a handle on. the company we are using is pleo sanum from germany. most of the alternative drs/naturopaths i had been in contact with since last fall(when danny started with symptoms) hadn't heard of it when i tried to research. you can sometimes get the newsletter on google searchs but i've not figured out what i've hit on to get that. try googling "biological medicine". there's also a "dr z" in nevada that has a website and he sells these through that. i wrote to the distributor in AZ and found a naturopath in my area. something strange is going on with the distributor now. danny has been on two of the formulas for about 8 weeks now. he seems to be doing very well. knock on wood! today he's a little ODD. he seemed to have a little cold/virus something a few weeks ago - right before school! but seems to have done well through it. i am not sure if his positive behavior is due to these treatments or if he's just not in an exacerbation phase. his history is great results when we first got him on keflex - in 3 days was 100% back to normal self. that lasted 35 days on abx + 5 weeks. he then got a cold and regressed although not as bad as original. back on abx did not see the total back to normal turn-around as before. through the summer, he was okay - some good days, some bad. i tend to rate how close to pre-pandas self but it's hard to know if that even exists now. last few weeks, i see improvement - i'd say now maybe 90% pre-pandas self. if he's in exacerbation, it's clear; when he's doing well it seems so hard to judge what behavior is pandas, pandas-hang over or normal 5 year old.
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