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Everything posted by eljomom

  1. Sounds like Dr. J might feel like he is not a lyme kid...just pandas? He is supposed to be the best pediatric lyme doctor, so I would think that if he isn't thinking it's lyme, then it's probably not???
  2. T.Anna- I am sorry for your frustration...I totally get it! I am wondering if you would mind sharing with me what brand home strep kit you ordered?? I have one that has never shown positive, yet kids have been positive at doctor. Also, it will go to positive if it sits too long......anyhow, I really need to order a new kit, as our insurance deductible is $6000 and I am paying over $100 each time I take one of my 4 kids in for strep tests!! Sorry to jump in on this post......I really do "get it" as we have had VERY similar situations. Thanks!
  3. I was told by 2 neurologists (Pandas-knowledgeable), and a doc at NIH, that tics are tics. They are caused by dopamine issues. What causes the dopamine signaling to be a mess is the issue....be it autoimmune/inflammation/neuro-imbalance due to "tourette's"---Cunningham test looks at anti-dopamine 1 and 2....Steroids have potential to makes tics worse be it pandas OR tourette's. Whether it will or not seems to be up to chance.
  4. My dd is a ticcer....we have not tried steroids due to the fact that they can make tics worse. This was told to us by 2 neurologists. I hear numerous reports here of them making tics BETTER, so hopefully you will seem them lesson as you taper. We were just to afraid to do anything to make them worse.
  5. I know they thought it was bacterial. I asked how she knew just by listening to lungs...she said viral is usually both lungs, while bacterial is usually one. She heard crackling in her left lung...loud and clear. But my pandas dd is the one with strep Hoping the biaxin works.
  6. Yah....she rx'd once per day ped today (different one) switched her to biaxin....thoughts????
  7. Thanks Karen! That makes me feel better. But she took 1 1/2 tsp. of Keflex....now is about on same dose of Omnicef....one time a day as well??? Maybe it's stronger so don't need a higher dose??? Oh jeeze...now I'm worrying:( So afraid she will tank again... I am opposed to Clindamycin. I know I see a lot of docs using it here, but I took it one time years ago and by the second day, my diarrhea was so bad I said I'd rather stay sick than stay on it. Also, my mom took it for a dental issue, and fought c-difficile for over a year from it!!! My oldest had c-diff as a 2 year old...not something I EVER want to deal with again.
  8. Hi everyone- I have not posted in quite a while, but do read posts and pray for you guys and your kids. My dd8 has Pandas (Pitand) and has for a few years. She is never 100%....always some variant of tics, but not always flare-like (not aways frequent and as numerous, OCD, sep anxiety, night terrors, adhd, etc..) So we have just kept her on a prophylactic antibiotic (Keflex) for the past year and a half. Last night she said her throat hurt a little, and she had a little fever (like 100-101). Not acting sick (which I notice she always seems more "normal" and pleasant WHILE she is sick with a fever.....it's the aftermath). One of her sisters has had croup for a few days, and spiked a fever last night. I don't take them in often, but did today. Older sister has pneumonia!!! DD8 has strep. Even while on Keflex. The doctor (didn't see our regular ped....this one didn't know much about treating...) said she wanted us to stop the Keflex for 10 days and do ammoxicillan. I said I thought amox wasn't great for strep, and she said we could try Omnicef (which is what she put my older dd on for the pnuemonia). I asked about Zithromax, but she said it's her "third line" treatment. Our regular doc (and Dr. L) don't like Zithromax at all for strep (we live in Virginia.....maybe resistant strep??). Just wondering if Omnicef is likely to work? It's a cephalosporin, just like Keflex, which she was on prophylactically, and still got strep. I sure hope so. Thanks
  9. My son is allergic to amoxicillin too and ALWAYS is prescribed Keflex (cephalexin) or Omnicef for antibiotics. He has done fine on it each time.
  10. Just saw this quoted in another thread I think by fightingmom, and she mentioned that it had been discussed. It was sort of a holy $h1t moment for me in some way, even knowing that there are plenty of PANS kids without titers being high. I can't find where this was discussed, but am curious if there is scientific literature or anything (even someone who talked to a pandas doctor...) that explains this theory. Makes me wonder if dd really DOES have subacute strep hiding in her tonsils, and has for so long (causing chronic symptoms) but no longer gets high titers??? Thanks.
  11. thanks peglem for the explanation. i almost feel defeated sometimes, especially when hearing Swedo say it can become permanent. I don't care if it's tissue death or permanent pathways, permanent symptoms means permanent symptoms. P.Mom---I hope I didn't offend you. I appreciate the success stories too. I just keep looking to find one with a kid with tics, ocd, adhd, who went undiagnosed for a few years, and who is triggered by viruses too, who has become chronic...and who got 100% remission for a substantial period of time. There really is nothing prophylactic to do for Pitand (viral triggered), although we still are on Keflex once a day just in case strep is an issue, as it was one time with no symptoms other than increased tics and night terrors added to the already chronic state.
  12. Sorry to hear of another child possibly with pandas, but glad your ped. is willing. Where in Virginia are you? We are in Warrenton. Keep us posted!
  13. Not to sound trite here, but P.Mom, can you explain the difference between "permanent damage" and "pathways can be permanently altered?" I'm not seeing any difference in the two statements. If the brain isn't damaged, per se, but the pathways are permanently altered.....and the symptoms/outcome is the same, what's really the difference? Don't mean to be a Debbie Downer, but can't quite wrap my head around this. Also, it's so wonderful that your boys are doing so great. Some of us, however, do not have classic strep pandas, and it makes our journeys much more challenging. Not from the perspective of being gut-wrenching for US parents to deal with, but from a treatment perspective.
  14. Shannon aka Mommy----I would like to hear how your visit went with Dr. M and what her treatment plan is. I have to say that I can relate to this post completely. I also am still not convinced that the changes won't be permanent. Dr. Swedo says after 3 episodes it can become irreversible. I live in constant fear of this, now after being chronic for a few years, yet not "severe enough" to treat with IVIG.
  15. Lynn - I would like to chat....we are in the same boat! Only difference is that it appears you have some elevated strep titers. Keep in touch!
  16. Hi abbe- I know how you are feeling, but the abx never dramatically improved my dd's tics. I hope you will get answers from Dr. T, and that you will post his response. I can completely relate to the question you asked: " is it that he is never going to get better since I waited so long to use antibiotics." I still ask that every day of my life.
  17. JAG10---sorry to hijack this, but wanted to hear more about what dr. k told you about "missing the sudden onset." I thought he was a firm believer in IVIG for pandas, even chronic cases??? We have been chronic, likely due to no sick visits for 2 years, and then the biggie with the onset of tics suddenly. I didn't see the germaphobia/ocd as "sudden onset" because i had no flipping idea about pandas. just thought it was a phase of ocd.
  18. patric--how long had your ds had symptoms prior to IVIG? Can you share what doc did IVIG with a child with predominantly tics and not debilitated??? Thanks!
  19. Gosh--I'm so sorry to hear this. Are you reporting to the NIH so they know that their protocol of 1-2 IVIG will likely NOT be enough? We have not tried meds for ADHD yet, but dd doesn't like school (and we homeschool)---she just doesn't like having to sit and focus on things (unless of course she is interested in it, which is Typical for adhd kids). I think you could ask 100 people here, and anywhere, and find that what works like a dream for 1 kid is a nightmare for another. I know it's cliche, and us pandas parents don't tend to do well with cliches or ambiguous answers, but I think it will just depend on your child. Interesting about adhd unrelated....I felt that dd's first signs WAY BACK were a bit of hyperactivity....pre-"pandas"---or was it????????
  20. If replying to this, it might be helpful to tell about how long your child had symptoms, what symptoms were, how severe, strep-only, chronic, tics/ocd/both, etc.... This could be a good thread -- an update of sorts
  21. If replying to this, it might be helpful to tell about how long your child had symptoms, what symptoms were, how severe, strep-only, chronic, tics/ocd/both, etc.... This could be a good thread -- an update of sorts
  22. I just happened to click on a link that someone posted in a thread about the corinth girl being treated for Lyme. It was Columbia's website (where I believe Brian Fallon is....he's a lyme specialist who researches neuro. lyme, etc..). However, I am seeing these statements AS THEY RELATE TO PANDAS/PANS/PITAND, and not necessarily to Lyme... So I am going to paste a few statements that were in the Frequently Asked Questions sections---these were replies from Columbia. It got me thinking some things...which I will elaborate on after the quotes: "The cause of the psychological symptoms in Lyme disease is unclear. It is clear that patients with acute Lyme disease who develop new onset depressive symptoms or irritability or cognitive disturbances often show a remarkable improvement when given antibiotic therapy. If the psychological symptoms persist or if the initial symptoms are severe, it is very important to consult with a psychiatrist to evaluate how best to treat these symptoms apart from the antibiotic therapy. When symptoms continue even after a repeated course of antibiotic therapy, this could be due to the fact that an activated immune system results in a change in neurotransmitter functioning. As a result, the altered neurotransmitter function may contribute to ongoing depressive symptoms, even after the immune system is no longer activated. Treatment of the psychiatric symptoms at that point would require anti-depressant or anti-anxiety medications or psychotherapy." I find this interesting. Maybe that's why some of our kids get better when treated right away with abx, and others go chronic. MAybe since the immune system was activated so long that the neurotransmitters functioning is "changed" and no amount of abx will help. Maybe these are the kids who really DO need a "start low and go slow" dose of SSRI's??? Okay, next quote: "A blood test may be positive for several reasons. First, the positive test may indicate that the person was infected previously by the agent of Lyme disease and the immune system mounted a successful attack which resulted in the long-term production of antibodies against the agent of Lyme disease. That's why tests can stay positive for months to years, even when active infection is no longer present. " I often wonder about strep titers, and how some kids' stay high for so long, even after long abx treatment. Also myco p, etc.....
  23. AmySLP---were you strep-only??? NIH recommends proph. abx till adult age if history of rheumatic fever....not sure why pandas would be any different.
  24. patric---how long had your ds had the tics? was he debilitated? who did IVIG?
  25. sure wish we could get everyone to give details on this one!!
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