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mountainmom

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  1. Cause of uptick in symptoms?

    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!
  2. 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.
  3. MTHFR Mutations

    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!
  4. Prophylactic Antibiotics

    NYCMom, thank you. I didn't know that people were finding that the antibiotics helped with inflammation. I appreciate your response!
  5. 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.
  6. How long Can I do Ibuprofen?

    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.
  7. How long Can I do Ibuprofen?

    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?
  8. How long Can I do Ibuprofen?

    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.
  9. Coming to terms, preventing flares

    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.
  10. 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.
  11. Help with meltdowns/mood lability

    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!
  12. 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!
  13. Duration of Antibiotics for Lyme?

    Can someone explain how you use charcoal for detox? I keep coming across this but don't understand. Thanks!
  14. 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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