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MountainMom

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Everything posted by MountainMom

  1. I just wanted to follow up in case it might be helpful for someone else. The Valerian didn't help us. However, my son's doctor switched his antibiotics and after three days I noticed great improvement in his sleep- from waking up six times each night and up for hours- to once a night and right back to sleep. It's been five days, so hopefully this will last!
  2. MomWithOCDSon, thanks for your suggestions. We have tried time-release melatonin, but it hasn't helped. I haven't tried Valerian, though. I will try it- hopefully he will swallow those pills. Searching_for_help, thanks for the links. I will definitely look into that. We are seeing a homeopathic doctor next week, so maybe she will have some suggestions as well. Thanks so much.
  3. Searching_for_help, thank you for your thoughts. I think I will talk the doctor about medication- us both being exhausted all the time isn't helping either of us cope. I never thought about parasites as a possibility- that's interesting. Would you mind sharing where I could learn more? My son also wakes up to pee multiple times a night. But often, then is up for hours. I wish he could just shut his body down but he can't seem to stop the movements. Thanks again.
  4. 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?
  5. Thanks, bobh. We will see what happens. I'm starting to feel like there's nothing I can do.
  6. I'm wondering- If your child has a PANS diagnosis, and not a PANDAS one, is your child on prophylactic antibiotics? My son, who has been on antibiotics since August and was doing really well, began flaring a couple of weeks ago (the usual but with new OCD symptoms). This isn't as severe as his last one, so I guess that's progress, but the doctor is titrating him off his antibiotics (Zithromax and Malarone). She wants to see if he improves off the antibiotics. Does this make sense? Thanks for any help!
  7. Good afternoon, I have been working on writing up our PANS story, and I realized that the only thing that ever helped us with my DS's panick attacks was this CBT audio program for anxiety called the Turnaround Program. It was the best $200 I ever spent. My son still asks for it when he's flaring/feeling anxious. It was much more helpful than any of the therapists we've seen. I think he really liked it because he could do it when he wanted and he didn't have to share his own thoughts and feelings, but could take what was helpful from the program. I just wanted to share in the hope that it might be helpful to someone else. I'd be really interested if other people had tools for managing PANS anxiety/panic attacks that aren't listed elswhere on this site. I have read all the past threads I could. This has been our most difficult symptom. Happy holidays!
  8. bws1565 are you saying that your child had bartonella and not Pans? How could you tell the difference? Or, did you mean the rash indicated it wasn't pityriasis? Curious! Thanks!
  9. MomWithOCDSon, Thank you so much for your suggestions. I think that limiting the amount of busywork and offering him audio accommodations will be really helpful. I will check out the book that you mentioned. I find that PANS is challenging on the school because it straddles learning challenges and psychological difficulties. I'm never sure who talk to- the nurse, the school counselor, the learning specialist.... Also, it is hard for people to wrap their heads around the idea that how the child presents today (his abilities, strengths, weaknesses, etc.,) may be different next week or month. Thank you again for the help!
  10. 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.
  11. Thank you so much for your response. I'm understanding more and more; but it's slow. It's just so much to take in. Another question- how do you figure out what more nuanced triggers there are- allergies, etc? Or, does time and calming the immune system alleviate these? Thanks again!
  12. My DS (7) has been on antibiotics (Zithromax & Malarone) since the end of August for Lyme, Bartonella, Babesia and PANS. Symptoms began in January of 2014. Though he wasn't in a flare when we began treatment, he had never entirely recovered from the last one (January-May of 2017). He has flared each January since 2014. The changes I saw from the antibiotics were almost immediate. He was focused, could remember words, began sleeping through some nights, was happy again for the first time in about a year. However, lately he has had an uptick in symptoms: anxiety, lack of focus, nightmares, nightwaking, ADHD symptoms, forgetfulness, etc. it isn't a full flare, but definitely an uptick. I'm sharing in the hope that someone with more experience might see something (or know something) that I might be missing. There is a lot of stuff going around at school, including strep, though I haven't been able to connect his flares to Strep in the past- though it's possible. This is very reminiscent of a similar uptick I saw last year before his worst flare last January and I'm terrified that we are on the same path- antibiotics or not. Please let me know if you have any suggestions for things I might be missing, things we should check for, etc. Thank you. So grateful for the wealth of knowledge here, and the support.
  13. We are supplementing with methylfolate, but he is still showing very elevated vitamin B levels. Why would this continue to be an issue after supplementing? Is there any way to test/measure how much the body is using or able to process? Thanks!
  14. NYCMom, thank you. I didn't know that people were finding that the antibiotics helped with inflammation. I appreciate your response!
  15. Hi, My doctor recommended prophylactic antibiotics for my DS with PANS. I'm trying to understand why it would be important to treat prophylacticly with antibiotics when strep isn't the culprit and we've irradiated current infections. Any thoughts? Thanks for your wisdom, as always.
  16. Okay, sorry- the studies were from last year, not this year. There are two. The one bobh posted earlier and this one as well: http://online.liebertpub.com/doi/10.1089/cap.2016.0179 Hope they are helpful.
  17. A new study just came out about ibuprofen use and PANS. You can find it on the PANS network site- I'd post it here but I'm in the car and can't find at the moment. It details how it effects flare duration. My dr who uses aleve also monitors the liver regularly (every 6 months) to monitor effects. Before we began antibiotics my son's flares lasted about four months and then we saw gradual improvement. If you're trying to learn more, I found the statement island PANS conference (on YouTube) very helpful. Where do you live?
  18. Hi. I'm so sorry that you are going through this. The PANDAS pediatrician that we see puts his PANDAS kids on ibuprofen permanently. Our integrative doctor disagrees. If it were me, and I was awaiting further treatment and the ibuprofen was helping, I would keep my kid on the ibuprofen until until my next appointment- which of course I'd try to schedule as soon as possible. Also, we have found that epsom salts are also really helpful. I hope you are able to see a doctor soon.
  19. Thank you so much for your insight and resources. Bobh, is your child on antibiotics all the time? What do you keep up your sleeve for when flares come? Ibuprofen? I have one doctor who wants to put my son on antibiotics for the next eleven years and one who wants to do another month and then stop. I'm just curious what you've done. Thank you.
  20. Hi. My son began antibiotics for Pans, Lyme and co infections just over a month ago. The transformation has been incredible. He wasn't in a flare- but I didn't realize after these horrible last few years- how far from baseline he was. He is doing so well but I'm struggling to wrap my head around what the future will hold- how to live life without spending every moment wondering when he will flare again and what will happen when he does.... So, I guess my questions are, what is the plan for when the next apparently inevitable flare comes, how do you keep going, and what, besides profilactic antibiotics should we be doing to prevent the next flare? I hope you all have some great ideas. I'm feeling so at a loss. Many thanks.
  21. Thank you so much for your help. It is so heart breaking watching him struggle- and we aren't even in a flare. I will try to eliminate what I can but unfortunately I can't do anything about school- which I think might just be too much for him. I will talk to them about giving him breaks, but it's so hard to get them to understand what he is going through because he is currently keeping it together there. It's at home he's a mess. I will try valerian! Thanks I hadn't thought of that. I really appreciate your help!
  22. Hi, I'm hoping someone can help. My son (7) just began antibiotics (Zithromax) and he is currently having increasingly difficult-to-manage mood swings, meltdowns, and crying. I guess, possible herx? Does anyone have any advice on how to manage this? Nothing seems to help. Thank you!
  23. Can someone explain how you use charcoal for detox? I keep coming across this but don't understand. Thanks!
  24. jep1978, I came across this article that might be helpful. In particular, this table might be of interest: LD:PANDAS.htm Though, I think some people might disagree with some of the symptoms that it says are not present in PANDAS.
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