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Posts posted by SarahJane

  1. Welcome. I was also going to say that the schedule fixation could be OCD. When my ds(6 almost 7) was in school last year, and PANDAS hit, he was VERY focused on his class schedule. Perfectionism is also a biggie with him. My son will sometimes balk at something new or a new plan, but only until he gets used to the idea (which can take a few seconds sometimes)...then he's fine. I would suggest that you consider your son's medical history & if you saw behaviors just before/after illnesses. And I'd especially look at what was going on during the autism dx. My son also had a speech delay that responded very quickly to speech therapy, BUT it was what the drs got stuck on to say he had development issues. And as you know, when you ask people to evaluate to see if there's something wrong...they usually find something despite the fact that all kids develop differently. Once you get on that path, it's hard to get off of it. And despite having the drs who were qualified to dx autism saying NO autism, the other drs seem to get caught by the fact that he was even ever evaluated. And PANDAS can look like autism in young children (and during exacerbations). There is also a high co-morbidity, so having PANDAS doesn't necessarily mean no autism. For the most part, you will need to find a dr who understands PANDAS to help your family and determine if it's there or not. A PANDAS dr can also help determine the best treatment.


    Good luck. This is really one of those things where the more you learn, the more you realize how much MORE there is that you need to learn.

  2. Hello again! It sounds suspicious to me too. It also sounds like your dr was thinking PANDAS since she ran the strep, MP & Lyme testing. All 3 of these have been implicated as possible PANDAS/PITANDS triggers, so it seems like she did do some recent reading. Hmmmm. As you read thru PANDAS symptoms, have you seen anything other than OCD? Any eparation anxiety? Age regression? Rages? Sleep issues? Hyperactivity? Etc.... Don't be fooled by the "sudden onset" criteria because sometimes it does take a little while to show up after strep. Also, while onset at 11 isn't necessarily uncommon per se, you may consider if you saw anything happen at earlier ages with illness or abx. You've already said he has to be homeschooled...that's due to all this going on? Was he going to school prior to this? I would recommend at least talking to or seeing one of the experts, & it sounds like you're close to 2 of them. You may need to find another local doctor if you can't get them on board. (Many of us have had to make a change, & if you give your general location, another parent may be able to recommend a local dr.) The quicker you get right treatment the better, & the right treatment can be different for the kids. Usually abx are tried first (and you may have work with diff meds/dosages), a steroid burst can be done to help dx (not long-term solution), and IVIG is also a treatment. If you found the forum, you've probably seen the other main PANDAS sites (pandasnetwork.org, savingsammy.net, pandasfoundation.org, pandasresourcenetwork.com, webpediatrics.com). I also recommend the book Saving Sammy by Beth Maloney.


    Good luck seeking answers and treatment.

  3. Wow. I'm glad he's talking to you about it. I didn't realize our son's exacerbations lined up like they do. While we did have the first one starting in Jan '10 & lasting months but undx'd. The 2nd one started the week before Labor Day when he was constantly whispering "just kidding" and told me he couldn't stop, & we spiraled down from there over the next weeks to IVIG in Nov. My thoughts are with you while you try to decide. Maybe the abx will work for you tho'. It's got him talking about it anyway. Maybe you can try to determine if it's residual effects/learned behaviors or PANDAS driven.

  4. I also use RF of the brain & then how this physical illness causes mental illness symptoms. Isn't is a sad situation when we explain it this way and people with no medical background get the gravity of the situation...and basically FREAK OUT when you explain it to them with the symptoms. And these are people that have never heard of it before...that makes it even more scary. And you do get to usually throw in how you had to basically self-diagnose since the doctors didn't help you. BUT when you explain it to a DOCTOR who knows the ins & outs of what strep can do to a body (and should know more than we do!), gives us the crazy parent treatment.


    Sorry...I know that wasn't the question. But the abx treatment of RF is standard but we get grief. Strep is strep. Grrr.

  5. We just tell our ds(6) that he's sick and that we're working to make him better. I've not gone into details about strep or anything tho'. I'll refer to the stuff he did when he was in exacerbation as examples of things we think he doesn't want to do & that he'd rather do nice things. Plus, I constantly ask him how he's feeling & he gets abx everyday. He'd tell me (when he could sorta articulate it) that he couldn't help it. And I'll tell him when he's doing stuff that we know is likely PANDAS that we understand that he can't help it because his brain is telling him to do things. (That's during the first hour...later on the conversation can go differently...let's say hour 4...BUT since IVIG, nothing lasts that long and the flipping we've seen isn't anything like pre-IVIG stuff.) It's hard at this age because you don't want them to think that there's anything WRONG with themselves, but at the same time, you need to acknowledge that there's a difference...especially when they acknowledge it. And at this age, with some of the behaviors & especially post-IVG, we wonder what's age appropriate & what's PANDAS. That your son is aware of it might be a good sign. Maybe if you have any lingering effects once he's better, it could mean that CBT or ERP would work. BUT once he's better, likely the tics and stuff won't be there & maybe he'll be able to recognize them as signs if anything like exposure/illness triggers them in the future. :)

  6. You didn't really say if the tics had any temporal relationship to any strep or other illnesses/shots or Flu Mist (or illnesses of other family members or friends since exposure can make things worse & Flu Mist is a live virus that's caused some issues in PANDAS kids or seemingly been the catalyst). And do you see anything else other than ADD? Any OCD? Rages? Handwriting and/or math deterioration? Sleep issues? Age regression/immaturity? Sensory issues? From what I can tell, it seems that many things get lumped into an ADD dx for explanation, but if you dissected all the symptoms, what do you see? There's good info at the beginning of the PANDAS forum that has articles with lists of symptoms. When your ds is on antibiotics, how does he react? Do things get better? Those are just a few things I would consider, and I'm sure others will also chime in with more advice. And if you decide to pursue a PANDAS expert, for your area these are the closest docs: Dr. L/Bathesda & Dr. T/NJ.


    Good luck.

  7. Just realized this mentions "pharyngitis" (strep throat) exclusively vs. recognizing impetigo or perianal strep. Hmmmm.


    And can I just also add a big DUH! in response to the following statment from the article because isn't that what medicine is all about (especially the last part!):


    "It will be important for clinicians and scientists to continue to work together across the disciplines of pediatrics, family medicine, neurology, child and adolescent psychiatry, immunology, and microbiology to advance our knowledge and improve our understanding and care of these children regardless of the diagnostic label they carry."


    And with all that...at least the doctors are studying PANDAS.

  8. I can't tell if there's stuff written between the lines or if it is just damaging. The paper by Murphy, Kurlan & Leckman was more supportive...so with Leckman & Kurlan on this one, is it just a matter of a wait period for article publication and the supportive one was in print first? And is it just me or does it seem like 4 years is a long time to analyze data that seemed to be pretty basic? (Study was conducted from July 2002 to December 2006, but the suggested strengthened criteria was written July 2010--so the suggestions are likely more based on knowledge from outside sources than just the research itself maybe.) With the suggested criteria, my son would still meet it except for the 24-48 hr onset...ours was more gradual (tho' if we'd known what we were looking for, maybe I'd have seen it earlier). And they do mention other possible infectious triggers. AND despite not finding a difference between the groups, they cite possible flaws in the study & only vaguely dispute that PANDAS exists (make the suggestion that criteria be strengthened). It does seem that maybe some of the "non-PANDAS" subjects were actually PANDAS. And...who are these PANDAS people who didn't experience exacerbations over the time of the study...we've been on this treadmill for a year now & have had 2 very LONG exacerbations...both with dx'd strep. Also, there's no mention of other medical care the kids may have received (i.e. abx for sinusitis, viruses, allergy meds), and the PANDAS kids maybe got longer abx px's so that could've helped keep exacerbations to a minimum. We don't know if there were exacerbations absent of strep...is that why they mention that possibility of other triggers? And the kids could be on their psychotrophic meds during the study, which I would think were likely more prescribed from '02-'06 (when did word come that they weren't recommended?), which could have dampened symptoms. And we know Leckman is a believer.... So...I will need to read this for a third time & maybe outline it to make more sense of it.



    P.S. Thanks to LLM & browneyesmom. :)

  9. My ds did the same thing. You tell him not to do something...he does it. You tell him to stop doing something...he does it at least one more time. I started thinking it was a compulsion...like he HAS to do what we tell him NOT to do.* He has told us not to tell him something before, so I think I was on to something with that but it took me a while to come up with that theory. It's frustrating because you're trying not to lose your cool or to give them a way to not get into more trouble, and lo and behold they don't listen (which is age appropriate...whew!). And yes, I've been known to scream "STOP SCREAMING!" which is not a very good example, eh? Anyway, for the most part now (post-IVIG and barring any flipping of the pages back), he will stop or not do something. And if he doesn't, it's more age-appropriate misbehavior than PANDAS brain control behavior.

  10. I homeschool my ds(6 almost 7). We decided to do this when we were waitlisted at a Montessori school because there was NO way we were going back to public after his kindergarten year. Undx'd PANDAS hit during the 2nd semester & my son who had not caused any issues during the first semester got in trouble nearly every day from Feb until school let out in June. It was just awful. We didn't know it was PANDAS then (got dx after 2nd exacerbation in the fall & did IVIG), but I feel that even if I went back there and got a nice, neat 504 that he would still be considered a behavior issue even tho' it's a physical issue. And I highly suspect that there was a strep carrier in his classroom. I wish that I hadn't made my son suffer last year, but I didn't know what was happening. Hindsight is 20/20. And to me, it seemed like the school was supportive only for a little while...they knew this wasn't how he usually behaved since he'd done well for 6 months. BUT when they reached their limit (which let's face it, isn't hard to do with a PANDAS kid), they were done with it. I even sat in a meeting with the teacher using those words ("I'm done dealing with him."), and it was early May. I just didn't feel like I could yank him out, but it's amazing to me that we took so much abuse from them. So, while the school may be supportive now, you may consider if they'll reach their limit. (I'm not sure how home tutoring affects their funding...right now they're getting money for the days they can mark her present. And if you withdraw her totally to homeschool, that will cut off the funding.) If you do go the IVIG route, you'll worry about exposure even more.


    Ultimately, it's your decision. If you feel that your child should be at home then keep her at home. As far as the OCD goes, it's not OCD in the classic sense (if there even is such a thing). It's due to brain inflammation. It's not giving into it any more than you would give insulin to a diabetic, IMHO. If she were thirsty, would you give her water? So...letting her brain rest and not be troubled by school at this point could be helpful to her & your family (and exposure to germs there can't be helping the situation). Is it the school psychologist giving you grief or a private one? And surely it's a private psychiatrist, right? School's don't have them on staff yet...do they? YIKES!


    And with all that said, we are still on the list for Montessori next year. If we get in, we may try it, but if it doesn't work for us, I will have no problem homeschooling again. To be honest, the element of exposure even in that smaller setting freaks me out. Good luck in making your decision and weathering this exacerbation.

  11. Good luck on your journey. You are among good company here (even tho' none of us wish we were here). You mentioned that your dd is ODD. Does he have that dx? If so, as you learn about PANDAS you may think about how it manifested & if it showed up after an illness. (I'm with peglem on this one...it's likely PANDAS symptom & you might find other things she does that are PANDAS as you learn more.) But, if your dd is asymptomatic to strep (which I'm thinking she is since they did a swab to find it), it'll difficult to assign the mental illness symptoms to a physical illness when you didn't know it happened. IF you see a lot of symptoms at school but not always at home, it could be she's being exposed at school. But the symptoms could be seen both places too. I agree that you should find a doctor that's at least familiar with PANDAS if you can't get to one of the experts (they're mostly in the east & one in Chicago...not sure where you are, but if you give a general location someone here might be able to send you in a direction). Since your hospital (was she in the ER?) even uttered the word PANDAS, that's a good sign & maybe they can send you in the right direction. Note: SSRIs and other drugs are not particularly recommended for PANDAS...the kids usually do worse on them. While there's no cure, antibiotics, steroids, & IVIG treatments (or PEX) are typical treatments. And many of the kids have co-infections, which you'll find as you do more research here and on the other sites (or someone else will chime in with something else regarding this topic).

  12. First off, I'm sorry. We did see rages from ds during steroids (we did just 5 days tho)...our relief with them was actually a only a few days without rages. I didn't keep a journal during ds's last exacerbation as part of me didn't want to keep track of the minute details, so I can't give specifics. But we gave the steroids to stop the rages & got rages & then got relief for a few days & then rages again, which then mostly went away just before IVIG but were back when we went to Chicago. This was over about a 4 week period of time (took us a little while after dx to find a dr who would write the px for the steroids). And it could just still be the brain inflammation since steroids take a while to kick in for the immune suppression effect. We don't deal with gut issues, so I don't have anything for ya there. Could you be seeing some sort of reaction to the abx itself?


    Is your little one sick or could he be sick? Could your 6-yr-old be feeling a reaction taking place in his body due to exposure? I ask this because this is what I suspect (can't prove) was happening with my son last year in school. I think the boy he had the most issues with in his class was possibly a strep carrier or at the very least, he got strep A LOT. So, I think that my son had a physical (& mental when you consider PANDAS) reaction to this kid. I believe that's what led partly to the boys not getting along. That's my theory anyway. I figure when our kids are having issues with us it could be that we're invisibly fighting off something that we don't even know because our immune system is working/doing its job, but our kids are reacting to it when their immune system is triggered.


    I hope some others on here can give you great advice. Good luck and quick healing.

  13. Read Osler's Web. It's a long, hard read but gives MUCH insight to NIH, NIMH & CDC...the whole of medical researchers really. Very, VERY interesting. Helped me understand more about the study of a new disease and how it all seems to work or not work, as the case may be. I'm SO thankful to the researchers who keep plugging away at this. I believe that their findings are going to be so far-reaching that it could be amazing.

  14. I had an urgent treatment PA give me abx after a neg strep swab because she told me that it ONLY tests for Strep A & it could be some other strep or staph. I agree the 100mg of zith seems low. My son is 46lbs and is on 250mg of zith (pill) daily post IVIG. I think a regular dose of liquid zith is 200mg. May not have had a high enough dose to get rid of the bug. Some strains of strep can be resistant to certain abx too. (She was also on Augmentin too, right? but was it a high enough dose if this dose is too low?). Ear infections are also common after strep...so if you've had a neg (or false neg) on a strep test, perhaps get the ears checked. I'd lean on taking her to get more meds even if she's asymptomatic. You can always request a titers test with higher dose abx while waiting for the results.

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