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Everything posted by eljomom

  1. A-men JAG10!!!!! It's like abx are a "controlled substance." I brought my son (not pandas) to Minute Clinic Friday afternoon for a strep test. Was fairly sure he didn't have it....but throat had been feeling weird, and there were some red little dots. She did rapid, without the swab to send in (I didn't realize this at the time). When the timer was still a minute left, she looked at the test and said "there are 2 schools of thought here...one is that there has to be a second pink line...the other is that if there is ANY pinkish color below the control line, it's positive." Well, I stared at that test, and for the life of me, it didn't look any pinker than the rest of the strip, but you know what, I happily took her abx (something I NEVER would have done in the past). Then I had her swab another of my kids who I had with me, and it was the same thing.....but she also said her left ear looked red. She said "I can give you abx for the ear or the strep, if you want." Thank you! Not that either really needed them, but I"m not gambling anymore. Might be worth a road-trip to our local CVS if you really can't get abx anywhere else.... Sorry to jump in on your rant JAG 10..... colleendonney.....I agree with JAG 10....
  2. I don't think it's abnormal for a kindergarten age child to have some separation anxiety after being sick. Or after NOT being sick. I know of tons of "normal" kids who had periods of sudden separation anxiety for "no apparent reason." I have worked in church nurseries for years, and kids who are "fine" separating will still sometimes go through phases of separation anxiety. I think we have to be careful about this, honestly. WE have to be careful to not turn PANDAS into another "Lyme" (illness du jour), where it is seen with such skepticism for the fact alone that those who are afflicted with the illness seem to see everything through those glasses. Does that make sense? Lyme people think every symptom is Lyme, we pandas tend to do the same with pandas. WE GET IT. I don't know, now that I've rambled on, this is a tough one........I do distinctly remember, when one of my kids was in 1st grade (my "not diagnosed pandas but definitely has ocd, tics, etc.....) she was freaking out trying to get her out of the car to go to school....she had been home "sick" with something for a few days, and I remember saying to her "come on .... i know, i know...you're just used to being home since you've been sick, so I know it's hard to go back." If I only knew then.......BUT looking back, she also had some occasional tics.
  3. So does this mean that the CamK results "officially diagnose pandas?" Until now, even dr. c will say "we just don't know for sure" when specifically asked about this test. Is the Cam K now being accepted as an official diagnostic tool that mainstream docs will have access to?
  4. peglem----I didn't for a minute think that what you were saying was "to say that untreated PANDAS is early childhood is nothing more than Autism." I appreciate your input, and didn't take that away from your post at all. I do think perhaps (TOTAL OPINION HERE!!!) more kids with autism are being diagnosed with pandas because they are generally in the care a of a doctor/doctors, and DAN!'s, who tend to think outside the box a bit better than our mainstream docs the non-autistic kids rely on.....just opinion and speculation here.....
  5. Sorry....I didn't post my last response with the quotes in the right spot, so my last response was in response to: "Honenstly, I really think questions like these should be avoided because no one here has the proper credentials to answer them. Furthermore, the discussion will most likely only present people with teh incorrect information and scare them. You should really just ask a knowledgeable docotor." With as many of us seeing so-called pandas experts on here, some more than one, I would think that I could ask these kinds of questions in hopes that someone has asked the same question to their doc, and gotten a knowledgeable reply...that's all..... .....well, time to get ready to deliver some puppies............mamma is due any time now.
  6. Would like to ask a knowledgeable doctor...thought I WAS asking one...never got answers. Just hoping maybe someone else had asked their doctor, or heard a speaker talk about it at the symposium, or had asked cunningham or swedo or anyone. I'm not looking for "personal experiences" here or opinions. Facts from docs or experts.
  7. ""chronic Pandas" can also refer to the ongoing autoimmune response that can occur even after the infection is gone. In my son's case, he had a prednisone taper shortly before the surgery, so that may have helped to alleviate the autoimmune response. " Kimballot---do you think steroids can help this "ongoing autoimmune response" even after years of "chronic pandas?" This scares me so much...the long-term changes in the brain from untreated pandas. Why don't doctors (even cunningham) say this? Why do they claim that the brain isn't "damaged" as the heart is in rheumatic fever?
  8. Wow---very interesting explanation. That's what I like/need. I am curious about "no titers" rising with strep being from "prolonged infection"--do you mean like prolonged (hidden) strep that is still going on? Does that make sense? That would almost be grounds for tonsillectomy I would think. Hmmmm...... Also, Just Pandas (does she also mean Just Pitand?........like, just autoimmunity, period? vs. low immune or something? Our immuno. said the same thing...her immune system is great! She has nothing to indicate that she would keep a chronic infection. Still considering seeing Murphy.......gotta hit the lottery first. I went thorough this exact range of emotions when we met with our immunologist as well. My son has had 8 documented strep infections over the course of 18 months, yet not only has he never had an elvated titre, all of his immune work ups have come back normal. ("maddeningly normal" is what I like to call it.) Murphy's office finally referred us to immunology b/c they couldn't understand why his workups show that he shouldn't be getting strep...but BLAMMO it keeps showing up. The immunologist she referred us to was wonderful, very PANDAS knowledgeable, and even said that she would rx IVIG for us, even with normal immune work ups, if and when Murphy says that's the way to go. (Apparently she's done it for some of Muprhy's other patients.) She explained the normal bloodwork to me this way - our son is producing all of the appropriate antibodies, response well to immunizations, etc... The absence of elevated titres is more of an indicator that his immune system is getting the job done, and not "over reacting" to the infection (I know its also a sign of prolonged infection, but she was speaking to my sons results specifically). They way she described PANDAS is this: In PANDAS kids, the immune system produces the antibodies against strep, those antibodies mistake the brain for strep (we all know this), in some kids, the immune system creates more antibodies than it needs (elevated titres) or there are other immune difficienies contributing to the PANDAS. In a "just PANDAS" case like ours, the problem lies in the actual antibodies themselves being produced by they body - they're defective in some way. But since the immune system is making them appropriately in response to the infection, everything appears normal. She said that since there's no tests to check for "broken" antibodies, that's what makes "just PANDAS" difficult to pinpoint and treat. I thought her explination made sense, but there was a small part of me hoping for something to be amiss so we had another piece of the puzzle. She was great, but she sort of got to me when she said after reviewing the bloodwork and giving a brief exam to my son, "Everything from an immunology standpoint looks great, wonderful. Fortunately, you're dealing with just PANDAS". Really?? JUST PANDAS???? Like that's not enough - as my son was tearing apart her office cause he was in an episode!! Hope this helps you feel better about wanting something to be wrong!
  9. Ha! Just to be clear, I don't wish poison ivy, broken toes or anything on my or ANY other kid, including pandas kids Glad everyone can keep a sense of humor about it. On a similar note, we saw the local immuno. for results of the very in-depth bloodwork (will post when i get a chance) and how he looked at B cells, NK cells, etc....and it was all "normal." I started crying, and he looked at me like I was nuts. Probably thinking Manchausen or something. My husband was angry with me to. COME ON!!! of course I'm happy that there is nothing "wrong" with her immune system (per se), but sometimes you just want SOMETHING to show up that you can FIX!!! Anyhow, my very pregnant dog has to be walked on a leash, as she's due in 2 days....so this morning she ducked into the woods into what appeared to possibly be some poison ivy, of all things.....and normally I would have yanked her out so she didn't bring home the oil to spread to the kids when they pet her.....but today.....I just sort of watched her......stand in the poison ivy...
  10. Haha!! Jag10....I actually have had the thoughts that it would be "nice" (well, in a rather odd sort of way) if she just got a raging case of poison ivy like her older sister did when she broke her arm, and was covered in it on the arm that was to be casted. Curious, do they give the same dose for poison ivy as they do for pandas? T.Mom----I see you posted but nothing showed up...
  11. Thanks Jill...I do appreciate your thoughtful response. Can you remind me what your daughter's symptoms were? I am sorry I can't even remember. I guess I am a bit sad about what I already know, which is that we are years into this at this point, so I think dr. L's philosophy might be that since we've missed the "early intervention" then let's just see what happens? I really don't know anymore. All I know is my husband and I are on totally different pages....he had the audacity the other day to say to me that she has had days of no tics, after I said that she basically has tourette's now. That is NUTS. Not one day or one hour. He then said he would make @*#& sure she didn't have IVIG or something "crazy" if it is just tourette's, etc.....and that I am over-reacting. "She's happy....." Dr. L "she's happy." Ugh. REally? Happy with numerous tics and compulsions. Anyhow, I know I need another brain on the team here, but who? I don't know how feasible it is to have an out-of-state doctor, when you are dealing with the finances we are. It's a shame, too, to have to go out of state when we have one of "the best" an hour away. I just don't know anymore.......
  12. WHY...WHY...WHY would a top pandas specialist, who diagnosed my child with pandas/pitand.....NOT treat aggressively then???? If early treatment is key, why do these specialists (well, not all of them)...even Swedo, say that IVIG and PEX are reserved for kids who are "debilitated?" Also, how does one "reboot the immune system?" (per Dr. Rose) "IVIG/PEX---success rates 65% and 45%".....that doesn't sound too great??? The PANS criteria only lists sudden onset of ocd, not tics. Did Swedo talk about the tics at all? "Autoimmune can follow disease by weeks, months, years..."---makes you wonder about chasing around "hidden infections" or raised IgG with antibiotics, especially when they arent' doing much. Could be that the infection is GONE< but the autoimmunity remains? "RF" was described as "chronic." So if someone has/had rheumatic fever, it is a chronic condition??
  13. because my dd has only had strep diagnosed one time (that we know of), is CLEARLY PITAND (did react poorly to strep, but also to staph, viral fever, major flesh wound, etc........and ENT scoped her (literally numbed her, ran a scope down her nostril and throat to look at tonsils) and said they are "small.....1 on a scale of 1 to 4", and because I have heard more people say their kids got WORSE or no change after tonsillectomy than better, or got PANDAS AFTER tonsillectomy. And also, because we personally feel like the doctor who recommended it is stabbing in the dark....same doc who told us not to look at tics when monitoring symptom changes......same doc who had us on too low a dose of zithromax for 8 months, appointment after appointment.....so our confidence in this doctors recommendation for tonsillectomy is a bit shaky at this point.
  14. I have heard the term "new baseline" on here quite frequently. I believe that our dd has "chronic pans"---in other words, a "new baseline." Thinking those terms might be interchangeable. So if a child has a new baseline, and then gets worse with exposure, infections, injuries, etc.....then goes back to "new baseline" or "chronic" state, but less severe, is this "new baseline" the best we can hope for? I don't mean to sound defeatist, and I know there are some, myself included, who will not settle for less than "perfect"---but in all seriousness, we are doing nothing right now, other than once daily keflex, with ME running the ship since pandas doc will not do anything else unless we pull tonsils. She is NOT 100%, but is at her baseline of new normal (daily tics, compulsions) but not NONSTOP. Wondering if anything was spoken about this at the TExas Symposium too?
  15. I feel like I've read on here repeatedly that the month steroid taper is meant to suppress the immune system (shut it down, thus stopping autoimmune response too), but ALSO has anti-inflammatory benefits as well....???
  16. bees....I am not a lyme-expert by any means, but we turned down a steroid taper after being strongly discouraged from trying it due to our "negative" igenix test that had some IND's and +'s on "lyme specific bands" by some strongly opinionated parents on this forum. ultimately, I take full responsibility for this choice (to NOT try steroids) but do wonder where we would be now, a year later, had we tried the steroids. we are still not treating lyme at this point. my point is, unless you can find some good evidence for this, other than some people on this forum saying that some lyme doctors say it can cause the lyme to "go into hiding" or "come back stronger"---I would suggest speaking specifically with a doctor equipped to know the answer to this. There MUST be one, if it is being claimed to be the case. our pandas doc told us that a month of steroids would not be enough to cause lyme to become out of control. this doc is NOT a lyme expert, but I believe you see Dr. B, who I think does a shorter course of steroids even. Steroids are used for other reasons DURING acute illness at times....I don't know the answer, but just do some digging, especially if you believe you are JUST pandas....
  17. MaggiesMoons and Vickie--did your kids have "classic" allergy symptoms?? Can someone explain how all the methylination stuff results in PANDAS? Or is it just implicated in ocd in general?
  18. ....wow. Internet has been down for days here, so I've been out of the loop. But just started from the most recent, and LLM's recent post about talking openly about Lyme, etc....so I quickly went to "the post" that generated the hot debate, once again. I only made it to about the 5th message before i stopped reading. The bottom line, and I think this is CRUCIAL on THIS forum and ANY forum, is that NONE of us on here are pandas doctors. And even the pandas doctors themselves are CRAP-SHOOTING here!!! I mean honestly, given the VAST array of not only symptoms, but also response to treatments, how can ANY of them really know what on earth is the best route for ANY of our kids at this point?? They are well-meaning, overburdened doctors who are trying their best, but science has not caught up with them yet, and they are truly making their best attempts to treat based on the available science out there to date, which in the case of PANS, is not enough. But I digress.......the point here, I feel personally, is that we need to make sure to share our stories here...what our kids symptoms were/are, duration, and responses to what specific treatments. And to ENCOURAGE each other, and offer "personal experiences" as JUST THAT . And ONLY that. I remember when I first started on here well over a year ago. It was very educational for me. I learned a lot. I felt less alone. Then it got confusing. I was getting told what I "need to do right away" by WELL-MEANING (and let's REMEMBER THAT....WE ALL ARE WELL-INTENTIONED PARENTS HERE TRYING TO OFFER OUR BEST ADVICE) parents. And one of these things was Lyme testing. Which we did, and which was Igenex "negative", but which I was then told "NO WAY IS IT NEGATIVE WITH ALL THOSE IND'S AND +'S ON LYME-SPECIFIC BANDS...do NOT TRY STEROIDS!!!" by, again, well-meaning parents, who's kids I honestly don't think are still 100% (just a guess....)...many, many people suggested this.... so we refused our pandas docs suggestion to try a month of steroids. Which then sent us on a long, rabbit-trail, etc. NOT BLAMING anyone here but myself, but we HAVE TO BE CAREFUL, especially with new parents here, to not misguide them or direct them. I still feel like the MYCO P thing was/is just another rabbit-trail. YES< it has been known to cause ocd and flairs. BUT SO HAS A COMMON VIRUS, INFLAMMATION FROM A WOUND, STRESS, ETC. I think one person/doc finds a possible cause due to something FINALLY showing up "not normal" such as IgG for myco p and BOOM---everyone goes on a myco p trail. I have my reservations about treating IgG myco p, and even IgM myco p, especially with NO SYMPTOMS....IgM can mean "recent" but "healed" infection. Yes, I do understand that some here have found remission from treating myco p. But many others have not. So again, it's all a crapshoot, and while I know it can be valuable to search out infections, and cling to any abnormal lab result, it's not always in the best interest of eVERYONE , and it's taken people on crazy paths. I guess my long-winded point is just to be careful. Share your story. Share emotional support. Answer questions people pose either by attaching a link to research, or say it is your own "personal, experience-based theory" or that a specific doc (and NAME THEM!!) has said "Quote." and then QUOTE THEM, without putting a personal spin or translation on it. "this is what we have done/tried, based on these symptoms, which lasted this long." Suggest doctors and what they generally do in diagnosing, and treating. I hope noone takes offense to this....I appreciate everyone on this forum, first and foremost, as a parent who is feeling the knife-through-the-heart pain of watching a child struggle with PANS. We are all hurting, all wanting the best for our kids, and trying to be helpful, but let's not try to be the doctor to everyone else's kid. I know for me, I keep trying to find the people who's kids present like mine, and hear what has worked/not worked for them. But at the end of the day, our kids chemistry is different, even if symptoms are very similar. So let's use this forum for what it is....encouragement, education, sharing information, but NOT diagnosing and treating each other's kids. Blessings, Wendy
  19. A-men, sister!! I've wondered the same things.....
  20. So when you say "worsening" and "improvement" of tics, are they always there since onset, but just at better or worse levels, or do antibiotics totally get rid of them? Since this all started in 2008, we saw a worsening of tics and other PANDAS/PITAND symptoms the times he tested positive for strep in the office (as well as during other times of illness) and then an improvement while on the antibiotics. Amox worked the first time to clear the strep and the other 4 times we had to use cephalexin to clear up the strep throat. He's now been on the cephalexin for 3.5 weeks and it doesn't seem to be helping the tics, etc. And of course now we are on Day 9 of the clarithromycin as well.
  21. I still wonder why our pandas "specialist" didn't look for something else after a month. We switched from treatment dose of Augmentin (1 month...no improvement) to low dose zith (non treatment dose), and saw no improvement...and did that for 8 months till she got strep WHILE on the zithromax and had a worsening. I think it depends on the specialist.....for ours, she only goes for plan B if the child is debilitated. So honestly, what I recommend, is pick what treatment YOU want, then find the doctor who will do it. NOT that I am a big fan of us parents having to make those decisions. We still haven't been able to feel comfortable with that duty. Since this started in 2008, has there been any improvement from antibiotics at any time, or did your child continue with symptoms?
  22. skipping_oz....can you share who you are seeing?
  23. saidie10----when Dr. MC wrote: "extremely elevated...you almost always NEVER see these types of numbers in children that are normal"--can you share what they were? I've been told by an immunologist and neurologist that antineuronals are not indicative of anything for sure...that random "normal" people walking down the street can have them in their blood. Even our "pandas specialist" is not treating aggressively for our dd with a CamK of 168, high antilyso, and antiD1 4000 (4 times the mean!). christianmom---I can't remember...are you on the lyme path now? Did Igenex tell anything, and did the Metametrix help? Jag10---I like that statement by Philly! I think I took the "forcefully" part and ran with it.....
  24. I also get Restless Leg bouts....started in pregnancy, and now it just happens here and there.....BUT, it never feels like "pain" in my case. VERY very annoying, can't stop moving them, etc. More of a discomfort, but not pain in any way.
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