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aspberger-like social interactions

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i'm not sure where ds stands today -- months ago, we discovered many infections. he seems to be on some pattern of cycling through behaviors -- but today, i'm in state of flux if his behaviors change or my attitude and patience does -- seems very up in the air. i do admit, i haven't been charting ala buster's chart consistently.


this week -- he's a bit hyper but also has a bit of a mellowness to him with upsets -- inappropriate upsets has been a major issue. he has the tendency, might yell and then it's gone where previously, could have gone on for a LONG time.


anyway -- social interactions were an issue with initial presentation. last year, he had difficulty in the classroom. i think mostly b/c teacher was turning up expectations and then troublesome behaviors would surface -- lack of focus, annoying others, alpha-male stuff, etc.


yesterday, i saw him do something that i usually don't see but seemed very asperberger-like. we met some old friends at the playground -- 2 girls, he's in-between ages -- so first, not the best playmates. anyway -- he kept singing to himself names of places and things we had done on vacation recently. i think he may have wanted to tell them about it but this was what he was doing. it wasn't troublesome but the other mom did also notice he was repetively singing these places anad it seemed a bit odd.


he could have just been thinking about it and singing and it's not a big deal. i do feel so worn from watching and assessing his every action and word - esp since July when he went into a tailspin herx-like reaction. it's seemed since, he has different behaviors each week. i was hoping there was an end but we seem to be plodding along with a new or comeback thing each week.


i am extremely frustrated with the journey we've had the past two years from the psychological/psychiatric realm. we haven't really found any real help there. while i know the medical issues are the root, i am also a big advocate of coping skills to help get through the day. a "session" isn't so much help b/c he may not display anything there -- i really need some type of therapist with him all day to understand something when it arises. right now, we're homeschooling b/c we're in the process of moving - i think he really needs to be in school for some help there.


i am thinking we should go back to the initial behavioral therapist who suggested pandas. she didn't even know it that well -- just said some of what i described sounded OCD, but he was so young; would think a story from school sounded asperberger, then he'd totally interact with her. she couldn't really peg him and remembered she heard something about pandas. however, we didn't stay with her b/c 1 -- we were seeking med intervention and 2 -- i don't know that she seemed to come up with strategy for us. she holds many asperberger groups, which i don't think is where he belongs -- but we seem to need something.


previous to onset, he had nothing that would signal asperbergers. as a young child, he was very into older brother and his friends, but got his own once he went to school. he had initially taken a long time to warm up to preschool, certainly longer than most, but once he did, he was fine. he had many friends who really liked him and he, they.


at the OCD conference, when asked, i believe Dr. Latimer said ERP, etc is not part of her plan -- which makes sense b/c she is a medical dr. i don't know if that means she doesn't even recommend seeking those types of services. i'd be curious what Dr. Leckman's take is on coping services and other interventions when you know the cause is pandas.


any thoughts or suggestions?


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When my son was having social issues (he also had to be screened for Aspergers), to be honest there wasn't much I could do to aid in overcoming it :( His itinerant speech therapist (one that visited in his preschool classroom) also noticed this and it was added into his speech IEP to have social goals in addition to his speech goals. (ie...____ will respond to social questions like "how are you" in 4/5 scenarios.) I don't know if the school giving these goals and supposedly working with him to attain them helped him or if him improving in social setting just happened on its own as he recovered.


I know my rant doesn't really help, but maybe I just want you to know your son isn't the only one who regressed and "changed" like that and the possibility is there for him to overcome it in time.

Edited by Vickie
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Smarty --


Once again, I find myself thinking that you and I have twin sons of different mothers! It is uncanny how similar our DS's paths have been, though they're several years apart. Then again, PANDAS kids sort of "specialize" in being "singularly odd," don't they? <_<


Here's one thing I can state with complete confidence: in the depths of exacerbation, the social struggles are far more exaggerated than they are during healthier times. Similar to your son, ours has almost always had some social "differences," particularly among his peer set. He's very comfortable around adults . . . almost abnormally so . . . but somehow the rules of interraction with kids around the same age can be tough for him. Sometimes I think it's because kids his age don't make the kind of allowances for him that adults do, or that they don't "ooh" and "ahh" over his precociousness the way many adults can. So over the years, he has frequently preferred his own company when offered only that of other kids his age. As time has gone on, he's selected a couple of good friends for himself, and he's getting better and better at dealing with and accepting other kids in the mix, but he still frequently refers to them collectively as "the kid," as though he's not one of them himself.


Lack of focus seems to come with the territory, too. Especially if the academic subject matter, or the way in which it is presented, is not engaging. If your DS seems especially bright, you might want to "turn up the heat" a little and challenge him beyond grade level, especially in subjects for which he shows particular aptitude. Our DS has far fewer issues, for instance, in his gifted education classes than he does his "regular" ones; in those, he frequently gets bored, tunes out, decides to focus on a distraction rather than the matter at hand, etc. Another thing we've found is that "drilling," as in lots of math problems predicated upon a particular concept, or experiment after experiment in science designed to illustrate the characteristics of mass and density, can be counter-productive for him. He gets it after one or two problems, and the first experiment; after that, it's all boredom and an exercise in busy work, and he'll either refuse to do it at all, or he'll drag his feet to the extent that he runs out of time for completing Problem No. 10 or Experiment No. 3. It can be really hard to get this idea across to the school and the teachers; we're still working on it.


As for therapists, psychs and other professionals who can help you with all this, or should you even LOOK for this kind of help . . . . my personal opinion is "yes," if you find the right person/people, it can help a lot. It's just really hard to find the right people, I think. I hear the argument that PANDAS is a medical condition and that, for some, once you take care of the underlying medical issues, the behavioral/psychological ones go away on their own. But in our case, that just hasn't happened. I don't know if it's because he's suffered with it longer, or because he's older, or because he would have some of these tendencies/behaviors even without the underlying medical issues. But because we were already well underway with ERP therapy and social worker sessions at school before the PANDAS diagnosis, it seemed natural to continue with them. And I know without a doubt that they've helped us during exacerbation and even now, as DS's health has improved dramatically over the last year, these interventions continue to help him and us with the "residual" (or lasting) OCD behaviors and his social challenges, especially at school.


The ERP therapist we finally found after 5+ years of trying different people, some of whom didn't have a good rapport with DS or us, and some of whom didn't seem to really know how to contend with DS's substantial OCD. The school social worker is young and relatively inexperienced and, at first, I thought his two weekly sessions with her might be a waste of time. What's manifested, however, is that HE's taught HER quite a bit about his OCD and how his "social thinking" works (and fails to work), and they've found a way to communicate and put some collaborative ideas into practice in terms of how DS functions socially in school with his peers, with his teachers, etc.


It's really hard, and frankly, while I feel our family has finally begun to emerge from the tunnel, I don't expect an "end" to this in any permanent sense. I think we're dedicated to ERP and social therapies at least through the high school years, and maybe even beyond. The positive side of this, for us, is that its giving us all this fabulous, bulky tool kit that helps us as a family deal with all of the little things, and supports us during exacerbation (should another one come), too.


Our psych once described our DS as a "mixed bag," but that's pretty much the way so many kids here seem best described. Ticked off one minute, quiet and subservient the next. Focused at this point, bouncing off the walls at another. It's frustrating to a lot of professionals who would like to label our kids with some condition or another but, in all good conscience, CAN'T professionally do so because the behavioral displays are all over the charts! I think our psych is actually GRATEFUL we finally arrived at a PANDAS dx because it took the onus off him to figure out what else DS could have that would bring all these wildly varied behaviors into play!


Hang in there! And put some feelers out for some therapists who might be helpful. Then, if you decide to try one, give it a little time before you draw a conclusion about how impactful it is; results won't be instantaneous in most instances, but if the fit is right, it can be very helpful.


Good luck!

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Wow, that is a really tough question. Our daughter went from being an incredibly social person, to having pretty major issues with her peers for many reasons. Some were related to contamination issues (often hard to see, as she tried to hide the true reasons), others related to extreme anxiety causing her to overreact to everything - and something a little harder to pinpoint. While she was ill, her social development seemed to slow down to an almost dead stop - while the other children kept changing. As a result, she quickly fell behind. When she got well again, her social development skyrocketed, and she was able to catch up, over the space of about a year. Anyway, when she stopped developing, she did seem "odd", almost asperger's like. It was like she was not "getting things". She also could not look an adult in the eye outside of our family. She was very very literal, and could not lie or mislead you to save her life (scrupulosity).


I guess my point is that PANDAS is a tricky disease. I would be the first to strongly encourage you to find the right therapist - as whether this is entirely PANDAS or contributed by another challenge - tools are wonderful to have. So have you not found a true ERP therapist for kids at this point? I can't remember what area you are in - PM me if you wish, and I'll tap into some other networks & see if there is a good option in your area.


We actually hired a person to help us - and we immersed her in ERP training with us. Our daughter was so severe that we had to do work with her pretty much every moment she was awake. I still remember her therapist suggesting that we only do ERP for 30 minutes a day. I asked her - what about the other 15 - just let her scream in terror??? It was hard for anyone to understand how severe our situation really was. We were very lucky to find a young woman that was very intuitive and helped us a lot. I think you have a good idea about having someone with you all the time for a while. I wonder if you find an ERP therapist, if you can ask them if you can have a few 4 hour sessions in your home -that should be enough to see a truer picture of the challenges. Or maybe you could look into an aide of some type - to give you enough of a break that you can think clearly about your therapy plan - and to have someone else to brainstorm with about what to try next.


You are such an amazing mom - I hope you find better answers soon. Your situation has been so hard.

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What you are describing on the playground (singing the places he had been to) sounds a little like either echolalia or scripting. My son does this from time to time. I think I have pinned it down as a yeast or bacteria of the gut. But it can be purley pandas in some kids, too. Like you, when my 5yo does these kinds of things I think about getting another psych eval to see if we have moved into the spectrum, but then I think, what's the point? I have his issues pinned down to 3 things primarily: strep, yeast, bacteria. When and if I ever learn to balance and manage all that, there will be very little behaviors left that look like autism. That's where a good DAN doctor comes in...

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The longer my son has had PANDAS (7 and half years) the more his behaviors have become aspergers like. Now we are treating his sensitivities with social skills class by a liscenced psychologist bi weekly. He does get OT twice weekly for the motor delays and sensory. His ADHD is always present now also. He has tics and compulsions which could be tourettes since they are always there. I would say alot of these are comorbid symptoms of the PANDAS. Does your child have the stuck fixations and meltdowns? My son gets stuck on ideas and tantrums when he doesn't get his way. The only difference is he does talk alot and is not shy at all or withdrawn from people like aspergers people sometimes are. No two people on the spectrum look alike though and nobody is sure just what aspergers truely is. He is on risperdal for the meltdowns and anger and prozac for the obsessiveness and intuniv for the ADHD. With the help of the meds he seems pretty typical to me and the meltdown behaviors are less frequent. School has still been a bit of a struggle with his attention but he gets help from a tutor and social skills from the school counselor and OT. We have found the echos are tics.

What you are describing on the playground (singing the places he had been to) sounds a little like either echolalia or scripting. My son does this from time to time. I think I have pinned it down as a yeast or bacteria of the gut. But it can be purley pandas in some kids, too. Like you, when my 5yo does these kinds of things I think about getting another psych eval to see if we have moved into the spectrum, but then I think, what's the point? I have his issues pinned down to 3 things primarily: strep, yeast, bacteria. When and if I ever learn to balance and manage all that, there will be very little behaviors left that look like autism. That's where a good DAN doctor comes in...

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