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Found 20 results

  1. I have found it profoundly enlightening to read about some of the obsessions and what parents thought were associated to them. I know some of these things are pretty personal, but finding patterns and possible solutions can be very helpful. So, my DD is 10. She was diagnosed with Sensory Processing Disorder when she was about 3. My daughter was adopted at birth from my niece. We believe she was exposed to several drugs during pregnancy, and the father was a heavy user. She is "normal" from all first impressions, but she was obsessive about intense events. Like she might g
  2. Hi all, My four year old daughter just started a 2-week course of Augmentin for suspected PANDAs this past Saturday. She is officially 1/4 of the way through her 2 weeks on the antibiotic. She has slept for 3 nights in a row and has stopped blinking - both of those are huge developments. But her impulse control and not listening (husband had to carry her to the car barefoot without her coat on in 8 degree weather today after a 45 min. episode leaving the neurologist) are still very very poor and affect the whole family. Dr thinks we *should* see a "significant" improvement in sympto
  3. Yesterday, after three years of struggles and misdiagnosis we finally got our test results back and met with our doctor. My DS(7) is positive for Lyme, Bartonella, Babeosa and received a diagnosis of PANS. I am hopeful, because my son will finally receive the treatment and support that we desperately need. I have a couple of question that I'm hoping those of you with experience with these diagnosis can answer. First, my doctor is treating DS with Zithromax and another antibiotic (can't remember the name offhand). Does this make sense? DS is not currently in a flare, though of course, he
  4. Hey, I'm putting this article here b/c when I've searched for it recently it's been behind a paywall...but today it's not. So now it's here for safe keeping in case it becomes inaccessible again. Antibiotics have a role in PANS even with no infection Publish date: February 9, 2017 By: M. Alexander Otto Clinical Psychiatry News EXPERT ANALYSIS FROM THE PSYCHOP
  5. Hello, This is my first post, but I have been lurking here since April when we started putting together that our 7 year old ds' symptoms was more than just misbehavior. Working backwards, I believe that the inciting event was over a year ago about a month before he turned 6. He was diagnosed with both strep and impetigo, had a horrible rash and was put on amoxicilan and mupirocin. The next day his behavior shifted drastically. He was not himself. I scolded him for being mean to his younger sibling and he cut off a chunk of his hair. He was in a ridiculous state after, laughing uncontrolla
  6. Hi Please help my son. I am desperate! My son used to have mild to moderate OCD and controlled with Zoloft 200mg. His OCD basically did not affect his daily function. April of Last year, he had to take antibiotics for other purpose, but his OCD increased a lot. After the treatment course, his OCD relieved a little bit. In this year April, his OCD increased significantly without a clue. Blood tests showed high level of Strep A antibodies. Then we visited Dr. T for checking for PANDAS/PANS. He first gave him Augmentin and Ibuprofen, but OCD increased instead. At the same time, he order
  7. Is there a typical best antibiotic for treating myco pneumoniae? I have been on only the fairly common ABX before (zpack, etc) and noticed no change (except typically a worsening of symptoms - likely due to changes in gut bacteria?). Would appreciate any input!
  8. Hello, I am very new to the group, my 15 yr. old daughter has been newly diagnosed with PANS after doing the Cunningham Panel along with clinical symptoms. I will share her story another time but I need advice from others; She has been experiencing symptoms for nearly 3 years. I recently found a neurologist that took her symptoms serioiusly and after doing the cunningham panel she immediately started her on Azithromycin 500mg. 1 time per day. A few hours before she started the antibiotic she started to not feel well after starting the antibiotic now 10 days she has progressively gotten wor
  9. My 14 year son had his first PANDAS symptoms March 7th. He was put on a 14 day course of Augmentin. He improved significantly. Within 48 hours of stopping the antibiotics his symptoms came back. It took me 5 days to get his pediatrician to give him more Augmentin. She gave him 30 day Rx - 875 mg 2x a day. Can anyone help me with next step after that? Is 30 more days long enough? Should it be longer or should he go on a smaller dose for a while afterwards? I really need help with antibiotic doses and treatment guidelines. I am in Seattle and there are very few doctors who treat PAND
  10. We have an ND that we have been using for diet changes to help with Tics, etc, and she uses Berberine (a natural antibiotic) with her other patients when an antibiotic is needed. (She has never treated PANDAS.) ND's can not prescribe in Georgia. We are still "interviewing" MD's on the phone to see if we can find one familiar with PANDAS. Has anyone used Berberine to treat PANDAS? If so, was it successful? Thanks. Heidi
  11. Yesterday, one of our providers recommended adding Buspar to augment the Fluvoxamine which she also wants to increase. DD is still significantly impaired by her ocd and anxiety and sadness. Also taking antibiotics and antifungals. As I read and stress about the risks with the buspar & added SSRI, DH's reaction is thinking we should just stop it all and see what happens. I can't deny that I think about that option too. Have any of you just stopped the meds? (I know that the SSRI must be tapered.)
  12. We've only knowingly been treating for Lyme since mid-July, and added a 2nd abx (biaxin) and a biofilm dissolver in mid-Aug so I know we have a long ways to go. Ten days after adding that 2nd abx, tics started to decrease. So after an amazing first week of school where tics were quite low, DS picks up a cold and now he's worse again. Pretty much back to the beginning when he was only on one abx. Cold is gone, but tics are up. So I'm just wondering if the flares will lessen over time, as he remains on treatment. Or because the tics are autoimmune caused, and the treatment is addressing
  13. So I noticed that DS' breath last night had a weird fermented smell. Kind of like he had a couple beers. I smelled him this morning and it is not so bad. Smelled his skin too but he smells normal ("mommy!! what are you doing?!?!") . I started thinking about yeast overgrowth; he's been on abx for 3 weeks and does take 50 billion units of probiotics. He's also on Sacc. B., which is a yeast, so I'm wondering if I should cut back on the Sacc.B for a bit. He takes his last abx around dinner, and his probiotics right before bed (as per the ND's advice). He hasn't had any tummy issues. Ha
  14. When your child started on long term antibiotics or IVIG treatment, did your child have more troubles with viruses or infections in the beginning? I'm wondering when a virus or infection that is laying dormant in the body and the body starts responding to the IVIG or long term antibiotics if the body (cells open up) will start releasing these virus or infections. Is this possible? This may sound strange but I am wondering if this is what's happening to my son. He has had past testing that indicated strep antibodies and other viruses were present. His Anti-DNase B was 390and range is 0-170.
  15. My doctor wants us to try Oral IG. It is the IVIG used but not with needles, We are told to give him a childs does of Pepsid to stop stomach acid and the oral amount is small & given every other day for many months. It is expensive $600. a month and I am fully aware of that. Background: My son is 3.5yrs old, and is in & out of being with us.He has some OCD, it used to be EXTREME. He talks some but not conversationally. He did 20 days of Cefdinir 2 different times. On both occasions he did speak conversationally. And permanently lost some of his worst OCD & separation anxiety s
  16. Hi - my 12-year old daughter has PANS, I believe. Seeing PANS/PANDAS neurologist in northern NJ. Very elevated titers for myco (1400) and slightly for strep. Treating with Amoxicillin AND Zithromax. Has tics which may have actually increased since being on antibiotics (only about 9 days though). She will not take pills, tried Biaxin liquid but will not tolerate so switched to Zithro. Also has increased anxiety and has had one rage since on meds. Used to take Omega3 (Nordic Naturals with DHA for kids) , then stopped, and recently started again. Taking probiotic too. Her diet is GF and mo
  17. For those who are newer and don't know my DS's history, he was on Augmentin XR (amoxicillin + clavulanic acid) for nearly 2 years, fighting his way back to his "normal" from his worst ever exacerbation. We weaned off those abx almost two years ago now, and he's done well . . . no further exacerbations and no significant illnesses in the meantime, either. This fall, he's fought off two colds, the latest one of which was big, bad and long. Head congestion, chest congestion, laryngitis and cough. No fever, though, and no sore throat. Friday evening, he complained that his ear hurt. Co
  18. Hello, I am starting new topic to ask about this antibiotic, since you - members of this board - know probably most about antibiotics from all over the boards I know. So, in my son's urine in good lab Morganella Morganii was found. We're trying ot treat it with cephalosporins III-rd gen (Cedax). Don't know if successful - his urine is again in lab, but we have nice gains during the treatment. After the treatment his behaviour became much worse than was before. Probably becteria has not been distincted. Our DAN said that it would be best to treat it with ciprofloxacin. I read about this ant
  19. Hi all my 6 year old son has been diagnosed, i think...with pandas/pans. an explosion of symptoms began early summer. we went on a family vacation and everything was a level 10 out of 10. He was licking everything, biting objects, looking at fingers lined up, asking questions multiple times, concerned about his eating area, defiant, hyperactive, very angry and moody, and extremely anxious about being alone. We called his ped multiple times while we were gone, and the nurse just tried to say you're on vacation, maybe he's just adjusting. we knew something was very wrong. we saw her again when
  20. My dd16 is scheduled to start clarithromycin in the am and I have been reading the insert. It states that it could cause psychosis and, Lord knows, we have dealt with enough of that with the disease so I don't want it with the treatment. I see that several of you have experience with clarithromycin/biaxin and I am hoping that you can share your experiences with me. I am doubly worried because we are flying cross-country on Wednesday and I really do not want to create a problem. She is currently doing pretty well, although we are still dealing with eating issues and a very short fuse. She
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