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Found 14 results

  1. Bttrfly1

    New Tic

    My son developed a new tic over the weekend and I don't know what to do about it. It's mild but it is hard for me to not see. His chest goes up and down in short repeated spurts when he is reading or watching his iPad. He says it doesn't bother him but I'm wondering what I should do. It seems like his tics move (if that makes sense). It first started with blinking, moved on to breathing, and now this. It seems that one replaces the other. He is being treated with long term antibiotics, received IVIG last summer, and on supplements. He also had T&A this past November. I can't say he has been 100% tic free - he has week(s) where he will be tic-free and then a short flare that seems to go away. This one, bothers me though. He is doing great otherwise. Gained some weight since IVIG (though he's now 8 and wears size 6-7 clothes) and can focus, handwriting is great and he loves school. I just don't want to go off-track again and wondering .. what should I do? I did give him a dose of motrin. thanks!
  2. Really hoping someone has some advice. My son (7) is in a flare and he's been waking up two hours or more each night- plus additional waking. Last night he was up for four hours. I'm a single mom and so this all falls on me. I can't function at work or at home. Feeling desperate. Sleep has always been an issue but this time it's without the anxiety of past flares (so that's a relief). But, he literally just lies in bed twitching. His legs move almost constantly. In the past we've tried melatonin, Benadryl, lavender foot rubs, chamomile/melatonin blend. We currently do epsom salt baths, magnesium, a guided meditation- and nothing is helping. I don't think I can continue this way. Any advice?
  3. norasmom

    Psychosis

    Hi. My daughter had mono and pneumonia after which she developed severe contamination OCD. We got her therapy and she was fine. Then she complained one day of seasonal allergies and went into a full blown psychosis, sudden onset. Can pollen cause pans to flare into a psychosis?
  4. Question - my ds 14 is currently in treatment for PANS/PANDAS - we are in month 2 of recovery and making progress - we are visiting family for Christmas and one of her cousins is currently being treated for a strep throat infection. We are all supposed to be staying in the same house, what precautions should we be taking?? ( even thinking about staying in a separate house). My ds is currently taking 250mg Zithro and 200 mg Minocycline daily along with 1200 mmg NAC, 2000mg D. We want to avoid having a flare...
  5. mountainmom

    School

    Good morning. My DS(7) is flaring (for the first time since beginning treatment) and I'm struggling with how to manage school as his OCD, tics and attention issues are increasing. I'm interested in hearing how you manage PANS/PANDAS flares and school. What I'm wondering is: Do you send your child to school when they are flaring? What do you if you kid will go to school (isn't refusing and is able to) but isn't able to "get any work done"? Does your child have special accommodations? How does the school manage the accommodations in light of the fact that at another point your child might not need them? Does anyone have advice or any wisdom about how to manage school during flares? I hate the idea of him sitting doing nothing during writing time- feeling bad about the fact that he simply can't getting any words down on paper. The teacher is currently trying a timer, but even that makes me feel so sad for him. I'm concerned it might make him feel anxious and how helpful is it if he actually can't do it? I greatly appreciate any advice or suggestions.
  6. I am hoping to get some help making sense of our current flare. My son got PANS when he was three, but he really fell off a cliff two summers ago at age 7. It wasn't until last summer that we began treating it as PANS with Dr. P, and by October had determined mycoplasma and HHV-6 as triggers. Two steroid tapers and 6 months on azithromycin and his infection numbers were down to nothing and he was doing well (making new friends, laughing, his personality back). However, his IgG numbers, which were very low in October, continued to drop. We planned on doing IVIG this summer. In early June he had a tick bite with a bulls-eye rash and began treatment that day for Lyme. Unfortunately, he has been declining as the summer has gone on. He did two weeks on doxy, a week and a half off before we realized he was still being affected then two weeks on Ceftin. Last week he became very aggressive which had not happened since two years ago so we started a prednisolone taper. We were also just denied IVIG coverage by our insurance and are planning on paying for it ourselves. He just switched from Ceftin to Rifampin three days ago in case he has bartonella. On top of all that, he was stung four times by wasps last week (can that cause flaring?) which has restarted a major bee/hornet phobia and has him scared of being outside. He also just started saying he hates the feel of water which takes away our only activity this summer of swimming. He is scared of everything, says he "doesn't feel right" and has started saying he wants to "go home" which in the past has meant heaven. His sister also has an open sore on her bottom which could be staph (we are having it looked at today). Can this be causing the flare? I am a wreck trying to trouble shoot and keep my own mental health strong. I am anxious to do IVIG as soon as possible to alleviate his suffering and give him time at home before school starts, but I wonder if we have all the possible infections covered. Any thoughts? I would also love advice about preparing for IVIG. Did it help? How did you keep your child calm? Do they need other medications at the same time to make it more effective? Any questions I should be asking of his doctor? Thank you for your advice!
  7. My dd,6 is getting her bottom molars, and complaining like crazy of ear pain, and she is flared up. Nothing else going on that I'm aware of. Has anyone had the 6 year molars cause a flare or ear pain, trying to decide if she might have an ear infection or if its just the teeth.
  8. I would love to hear your recovery stories. Did your child ever go back to being his/her "old self?" How long did it take? Was your child in a state of semi-recovery for a while? What do you think was the most helpful thing for you? ----------- Here's a little bit of DS10's story: He came down with strep in October and burst out in a bunch of typical PANDAS symptoms (general anxiety, separation anxiety, hallucinations, irrational fears, emotional lability, rages) right as we were ending the antibiotics. A second round of antibiotics (10 days) took care of most of the really weird stuff. He has had one flare following a bout of gastroenteritis and had a "baby flare" last week when his brother was coming down with walking pneumonia (myco p). The first flare was characterized by raging/anorexia/anxiety--and he got suspended from school for an altercation. The baby flare was "just" lots of rages aimed at me. But most days, he does well. His behavior could be considered completely normal--for a different child. He still has a million friends and is his charming self with them. He is generally able to keep his act together at school. It's just that ... he is not exactly the same as he was before. He has outbursts at the slightest provocation several times a week. He is also super-forgetful and has a hard time concentrating on anything remotely challenging. Also: He seems to have plateaued. If he's getting better, it is gradual. Right now he's not on antibiotics but is taking some fancy Omega 3's, Vitamin C and 5-HTP. I give him Motrin sometimes too. I had titers run two weeks ago but I have not been able to get my doctor's nurse to call me back, which is making me pull my hair out in frustration.
  9. I'm not sure how to deal with this situation. For the past few months, DS has had a flare up every month or so. Whether it's related to the Lyme life cycle or parasites, I don't know, maybe it's both? He flares around the full moon, and so people have brought up the possibility of parasites. His tics get more frequent and more 'severe' - i.e. the sequence lasts longer and produces a much larger, full body movement. It lasts about a week. Then he goes back down to regular ticcing (it hasn't yet gone away). He is currently taking augmentin and clarithromycin, and some herbals Biocidin and MC Bab 1, which are partly anti-parasitic but he's only on one drop a day. We do lots of detox. And probiotics, sacc B. I've upped his detox this week but it doesn't seem to have any effect. So if it's parasites growing/reproducing, detox wouldn't help? Should I increase the herbals to two drops? I also don't exactly understand how parasites would cause a flare? Can someone explain to me? I realize with a dysfunctional immune system, the parasites have more of a effect than on a healthy immune system.
  10. Life has been sad in the Thoren house. We were hit last month with a cold/cough that didn't miss any of us, and my Olivia (10), who has been my least affected panda, has totally changed were since being sick. She was diagnosed at 7 with over-night onset and tested pos for strep, but was never as bad as her older brother and younger sister. Now, she's crippled with OCD and intrusive thoughts. She's completely lost her spark. She sad and scared. I am so over this and hate that it fucks our lives up so much... Robbing my kids of childhood. Dammit. So, I stepped up her abx from prophylaxis to treatment and have an appt for next week with the Psychiatrist. What can I do to help her? Giving Advil & Fish oil. She's not the same. My little girl is like an empty shell. Tricia
  11. I've noticed this happening over the winter and it's happening now too. DS seems to flare after he is sick, but not during. For example, this past Monday he seemed to have some slight improvements which continued on through the week, but on Wednesday he developed a stuffy nose/cough in the evening. The worst of it was Thursday and Friday, but his tics were still improving. However, by Saturday he had gotten over the worst of it (and passed it to me and DH), but his tics really flared up that night. And Sunday, and until now. I find it curious and wonder what is happening with his immune system - when he is sick, is his immune system "busy" with the virus? then he gets better, and his immune system can go back to attacking himself? Also, he kicked a hole in the drywall while ticcing this morning - anyone know how to fix it?
  12. In the last week, DS has developed an alarming tic where he tries to bite something/someone. He hasn't bitten anyone yet, but he does bite himself (on the fingers, on the knee) and things like blanket, stuffed animals, toothbrush. I'm wondering if this could be a herx reaction from the Biocidin he is taking or a flare up b/c of a recent virus. He started on May 20 with one drop 2x a day...then increase by one drop a day up until 5 drops 2x a day, on the advice of our naturopath. Then May 29 he picked up a cough/cold from his sister that lasted about a week. Around the same time, this biting thing started. The cough is better now, the biting is getting worse. What I'm asking is, basically, what does a herx look like? Does everything just get really worse and more severe? We've cut back on the biocidin to one drop a day, starting today. Giving epsom salt baths and lime/lemon water.
  13. DS10 has now been officially diagnosed with PANDAS/PANS. I posted a bit of his backstory here. He is generally doing well and recovering, but I sense that he is about to have a flare. (I hope I'm wrong, of course.) What do you do beyond ABX when you sense a flare coming on? I just gave him some ibuprofen, and I give him Omega-3s and Vitamin C daily....but is there anything else I can do? Already planning on loving on him as much as possible and hoping it passes quickly.
  14. What have you done that helps with rage episodes?
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