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Everything posted by eljomom

  1. arial95---what do you mean injection? like rocephin shot? I thought IV abx during the procedure was standard? so you mean that PLUS a shot? my dh wants to just pull the tonsils, wihtout repeated strep or high titers. Just b/c Dr. L said to do it. I am still skeptical.
  2. Thanks Karen. Very interesting. I wonder what she recommends if the zithromax does not work in cases that have been going on longer. Anyone know this? Karen? I wonder if we should go back and try zithromax again....we were only on 100 mg/day and it looks like that was less than HALF what my dd should have been on!!
  3. Good article. Would love to know what Dr. schulman's "regimen" involves? Which antibiotic? Anyone know?
  4. What on earth does "go systemic" mean, and how does one test for this? I truly think that one of the more logical things our pandas doc told us was that the surgery is very inflammatory ( healing from it) and this it's not to be unexpected to see a flair.
  5. Arial95---I am curious what Dr. M generally does to treat Pandas? Especially more "chronic" cases? I haven't heard of her using steroids, or IVIG. Is it antibiotics or broke? What if they don't help?
  6. S&S--this is where I do a big "gulp." One of my other daughters, who I know in my heart has had pandas for years, has had chest pains (infrequently), on and off headaches, etc. for 3 years. Did Labcorp W. blot and band 23 showed up. Was told "negative." Crap. Did Igenex also show band 23? and others??
  7. Can you please share what this is for? I know we are past our "sudden onset" but this definitely fits us. We are, as of today, having a sudden increase from a couple to over half a dozen tics/movements again, and really curious what study is being run. By whom? It doesnt' sound like the NIH study as they were more interested in OCD.
  8. dcmom---I was going to say similar to what you said, but since you said it first, maybe I won't have to dodge the rotten tomatoes I am NOT a Lyme expert in any way, and in the back of my mind, given all the tick bites, etc. i still sometimes linger on the thought of that path.....BUT, I think IVIG not working long term shows that either IVIG is not a"cure" and may be needed repeatedly after exposures, or that there is still an underlying chronic infection/trigger. I personally, and possibly IGNORANTLY, but nonetheless based on my own research and digging, have come to thing that chasing titers on myco p is questionable. I know that if a child has mono, they will ALWAYS test positive for EBV titers. It does not, however, mean they still "have" mono and need treatment (even though mono is viral and generally isn't treated), but you get my point. I know Sue Swedo was quoted either on this forum or another saying that the teens with the tics in NY may have elevated titers for strep because it is "common" in kids. Doesn't mean that "have" strep, or even that they "caught" strep, ONLY that they were exposed enough for the immune system to mount a response. I don't really know what I'm trying to say here, other than that if it would be something affordable and you could put it behind you, have the Lyme testing done, but don't make too much out of it if it's not positive...there are many bands showing up that I believe are positive for things other than Lyme.....taking people down a long course of unnecessary Lyme treatment. I know I may some day EAT MY OWN words here, so by no means am I telling you NOT to test. I have, and we may again. I guess my point is that just because IVIG didn't hold, doesn't mean it's likely Lyme....
  9. I couldn't agree more!!! I just posted a very similar response to this link of Q&A on the facebook group. Basically, that I thought PANS was meant to include Pandas AND Pitand. And why in PANS are tics not in the symptoms list? But most of all, it puts those of us who are NOT helped by antibiotics S.O.L. for treatment options, since IVIG is stated as being treatment for "severe cases." According to The Batavian Q and A with Susan Swedo (http://thebatavian.com/howard-owens/q-dr-susan-swedo-regarding-pandas/30364) if that is considered a reliable source of information, she now states that : "The updated clinical criteria for PANDAS are as follows: 1) Presence of obsessive-compulsive disorder and/or tic disorder; 2) Unusually abrupt onset of symptoms ("overnight," "0 to 60 in one to two days," "possessed by the illness"); 3) Prepubertal onset (NOTE: This criterion was an arbitrary one chosen because post-streptococcal reactions are rare after age 12, but could occur in individuals who do not have protective immunity.); 4) Association with other neuropsychiatric symptoms, including various combinations of the following (NOTE: All would start suddenly and in combination in a previously healthy child): a. Severe separation anxiety (can't leave parent's side, needs to sleep on floor next to their bed etc); b. Generalized anxiety which may progress to episodes of panic and "terror-stricken look"; c. Motoric hyperactivity, abnormal movements and sense of restlessness; d. Sensory abnormalities, including hypersensitivity to light or sounds, distortions of visual perceptions and, occasionally, visual or auditory hallucinations; e. Concentration difficulties, loss of academic abilities, particularly in math and visuo-spatial skills; f. Urinary frequency and new onset of bed-wetting; g. Irritability (sometimes with aggression) and emotional lability. Abrupt onset of depression can also occur, with suicidal ideation; h. Developmental regression, including temper tantrums, "baby talk" and handwriting deterioration (also related to motor symptoms). 5) Association with streptococcal infection. At initial onset, the symptoms may have followed an (asymptomatic and therefore untreated) streptococcal infection by several months or longer, so you might not find the inciting strep infection. However, on subsequent recurrences, the worsening of the neuropsychiatric symptoms may be the first sign of an occult strep infection (and prompt treatment may reduce the OCD and other symptoms). FOR PANS – Criterion #1 is limited to OCD only (no tic disorders as primary diagnosis) and the last criterion is eliminated because PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome and does not include an etiologic component." I´m a bit confused by this : - Now we have BOTH PANDAS AND PANS ? - with two different sets of criteria ? Have I got it all wrong ? Wasn´t the intention to work and agree on a new and better defintion of PANDAS (and PANDASlike diseases/PITAND) ? and as a part of that process to rename the disease - to PANS ? - What SEEMS to happen as far as I can see, is that we will now have PANS that doesn´t include an etiologic component and as such cannot and will not be able to pinpoint adequate treatments but only those that merely adress the symptoms ? - AND we will still have PANDAS, that includes the etiological component, and/but there will still be disagreement as to the question of possible etiological factors - and as a consequence of that : What are the treatment options that should be considered ? - AND the kids with PANDAS(like illness) due to myco, lyme etc. will still be left in the middle of nowhere (or with a PANS diagnosis, that leaves them without treatment options others than those that merely adresses the symptoms ?) What is the gain from all of this ????
  10. I think I remember this being discussed here but I disregarded it because it "didn't apply to us." The other day my dd8 was painting my nails, and as she brought the brush to do my first finger, her hand was shaking. I was stunned. Today we were detangling all my old jewelry after she decided we should go though all those dusty boxes on my dresser, and I noticed it again. I asked her if her hands shake a lot, and she said "Yah, especially when I write." I asked if it was all the time, and she said "sometimes but not that much." She then held her hands out in front of her like Dr. L did when looking for chorea (which I have done on myself, by the way, and I swear everyone mUST have some degree of wiggling fingers in that position!), and said "look...see?" And they were shaking...barely noticeable, but still a little bit. Maybe trembling is a better description. It gave me a rush of anxiety to see, and the feeling of "ugh...one more thing I may not have ever noticed"... Anyone know anything about this? Thanks.
  11. That's exactly what Dr. T said my dd had in our phone consult. A "pandas-like" illness. If it's only tics it's not pandas.....WTF? Then again, I can't imagine anyone ONLY having tics based on everyone on this forum...we all seem to have more than "just" tics or "just" ocd...right?
  12. Wow--that is amazing!!! It just still gets to my core....my dd is functioning (we do homeschool, so not sure what would be the situation if she were having to be in school all day every day, focusing, sitting still, stressed, etc...), and we've been told by Dr. L that she is not debilitated enough for IVIG. So while she tics and tics and taps and evens up, she seems fairly happy. I guess it frustrates me that kids who are debilitated can get back to "normal" lives, and kids who are not get to stay afflicted with tics, like it's no big deal to have tics and ocd and hyper for your childhood and possibly entire life. Sorry...don't want to be a debbie downer....
  13. Well, I have to say, I may be in a minority here, but I am actually GLAD Sue Swedo said what she did. When I was reading Dr. T's statement earlier, I could already here it coming. The questions from friends. "Oh, why don't you just get one of those strep titer tests done." Only to have to explain that we HAVE, and they were NOT elevated, and it does NOT exclude us from PANS. And then to hear "well, our doctor told US that if the titers are negative it's not pandas." Blah blah blah.....IT's the same thing with all the hoopla myco titers. Just because someone has elevated titers (EVEN IgM) it does not mean there is still active infection that antibiotics will help. I"m afraid that if the abx don't help, then the media will say "See, it's not Pandas after all." For us, abx don't help. Why can't those girls be in the IVIG study at NIMH? That would be a huge number of volunteers to meet the numbers necessary for NIH to put out a preliminary report. Don't get me wrong...its seems awfully pandas-y to me for sure. Just don't want the focus to be on the strep titers being the "diagnostic tool." Dr. Swedo is correct. MANY kids have elevated titers after strep and DON"T have pandas.
  14. I have an incredibly long list of questions I have typed up (and that's my "condensed" version ) -- but not sure what you child's symptoms are and whether they would apply to you. If you want to send me an e-mail, I can pass it along. Also, curious what OCD website you found your doctor on? Especially interested in what OCD website recommended a holistic approach.
  15. Thenmamma---I don't think I realized your daughter had IVIG. Was it with Dr. L? Can you remind me her symptoms? Was she "debilitated?" so glad to hear she is doing well...would you consider 100%? Thanks,
  16. MaggiesMoons---when you say "sero negative strep PANS" do you mean that your son doesn't get elevated titers after strep, or that his s. pneumonia titers were all low (immunodeficient)? I, too, don't get the "rebooting" thing and sometimes wonder about these terms...if they are just ONE particular pandas doc who coined the term to explain what is hoped to happen in a very non-scientific way (ie., giving a scientific-sounding word to a slightly educated crapshoot).... I too would be interested in any information out there on how to heal the BBB and close it back to what it should be. That seems to be the key in some way to stop the reaction from happening in the first place! I have seen first hand how the Ibuprofen (we use Advil) makes a huge difference, and according to what I have read, the reason it does is because it decrease the BBB inflammation. I am also wondering about the IVIG and how it works long term down the road. My ds8 is now 1 year into it, 50 days ABX and going strong, starting a tapering off next week very slowly to see where we are at now. I would say we are at 97% right now, so I am nervous about the taper but know he has to come off ABX and we need to see if we have cleared the stuff. He is diagnosed Sero negative PANS- meaning he makes NO antibodies to strep. So with the IVIG i am researching now as I feel this may be our next step if he cannot hold his own once off ABX. We have been lucky in that his symptoms are not as bad and milder than some I have read about. So an info or experiences with IVIG would be appreciated as well. I have read what is on here so far on it, but am wondering the success rate long term.
  17. so do you think maybe they would even fit the NIMH guidelines where they might even get to try IVIG? Is that what you meant by "if anti-neuronal antibodies are, they can do something to help those poor kids"? The IVIG goes after the antibodies? Also, didn't Lynn J. just put a post out about looking for people with kids with less than 6 months since onset of movement disorder?
  18. PowWow---can you remind me her name? Also, are you looking at Bradstreet rather than going back to this person in VA??
  19. Hugs2day...can you share what supplements you are using? Also, my dd has been ticcing MUCH more the past week. Wondered if it was due to exposure at her well check 4 days before, but who knows anymore. I don't have a bubble, and I can't keep them isolated. We do homeschool, but we are always out and about.
  20. I recently finally listened to Dr. Swedo on CoffeKlatch and jotted down a Dr. Pardoe who is doing work with co-infections (if I am reading my scribbled notes correctly). Wondering if anyone knows anything about this. I think he might be at JHU.
  21. T.Mom---that is great to hear. Since you have been through it, and if I remember correctly (forgive me if it's a bit blurry), you waited to do it for quite a while.....would you have done it sooner for NON-debilitated symptoms? I still don't get how it is not recommended (not that I am sure I want it.....I have the same concern as LauraK) for kids who clearly are affected by pandas....tics, ocd...but to a milder degree at times...if it's the same process going on. This has been an ongoing question....so is she back to 100%? I have heard it only helps about 50% reduction in symptoms, which for some kids, I know would be beneficial.
  22. Just curious......the lyme test that Philamom has posted about that does not look for antibodies but instead is able to culture spirochetes from the blood sample. Has anyone had this done? Any LLMD's using it now?
  23. Quoting, and questions... "False-positive results of serological tests for Borrelia burgdorferi antibodies are recognised in a number of infections, such as syphilis, parvovirus and Epstein Barr virus, and in various other inflammatory conditions.1 We de- scribe a case where misleading positive Borrelia burgdorferi antibodies were caused by the administration of intrave- nous immunoglobulin." Really curious about the "Inflammatory conditions" that can cause a false positive on Lyme tests. Anyone know? seeing as so many pandas kids are turning up with Lyme......is it REALLY Lyme? When you think about it, there are people treating their kids for Lyme bases on Igenex's test, with only a handful of positive bands. Maybe it's the bands reacting because of the inflammatory disease (ie., PANDAS)? Just thinking aloud here...
  24. Wow. I'd seen the article by singh a while ago and almost tried to contact him. not sure why. so this may sound totally stupid, but has anyone tried GABA for tics?
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