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Everything posted by mountainmom

  1. Hi Sirena- what makes you say that autoimmunity is in play, how can you tell? He is off gluten because genetic tests indicated that he should be. We haven't done IVIG- or really even talked about it with our doctor.
  2. Hoping someone wiser can help. Some backstory: My son has had PANS since 2014 but was only diagnosed, and began treatment, this August. He tested positive for Bartonella, Babesia, Ehrlichiosis and some evidence of Lyme exposure. Original treatment was really successful and we had two incredible months with him before he flared again December. About a month ago, our doctor took him off all antibiotics to see if he would improve. He didn't. Things got worse. He's now been on Amoxycillin and Bactrim for about a month and he was improving. However, on Monday, we started him on iron supplements, vitamin c, and GABA. Incredibly, he slept through the night for two of the last four nights (for which I am so, so grateful). However, beginning on Wednesday, I saw a resurgence of some symptoms: OCD, mood lability, slowness/distractibility. This afternoon and tonight, he had several panic attacks (The first in quite some time). So, what I'm wondering is, could the new supplements be causing the resurgence of symptoms? Or are the medications not working, or is this a new flare? How do I even know? Lots of kids are sick at school.... Feeling so frustrated trying to tease out what's going on and how to help him. Please share if you have any thoughts. Grateful to you all.
  3. Desperate for Sleep

    Just wanted to update in case this might be helpful to anyone else. Llmd started my son on GABA supplements and for the first time in years, he’s been sleeping through the night! I know the is no one size fits all answers when it comes to PANDAS/PANS, but, for what it’s worth, the GABA has been life changing (even in this short time). O_bear, we also mainly have had trouble in the night, or the most trouble, I should say. If you’re interested, I can let you know the name of the supplement we are using. Best of luck to you. Not sleeping is the worst.
  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. Thank you all for your thoughts. DS now has the flu, so it’s hard to tell what is happening and after, I’m imagining, it will be even harder to tell what’s going on. I’m so frustrated. I feel like I’ll never figure out what’s going on- what’s causing what. Bws1565, I hadn’t ever thought about that. I will have to pay more attention. Thank you.
  6. SuzanneR, Thank you so much for you response. I'm giving him 1 capsule of GABA (470mg) prior to bedtime. So, when he was struggling last night, he hadn't had any in about 24 hours.... I'm not sure how long it would stay in his system. He isn't currently taking Theanine. But, perhaps I should talk to the doctor about adding it? We will be adding in Milk Thistle to support his liver this week. Tests showed that his liver enzymes (AST) were high. Other than that we aren't doing anything for detox besides epsom salt baths. I hadn't thought about yeast flare. What are the signs? Thank you, thank you, for you help! Watching him have panic attacks kills me.
  7. Desperate for Sleep

    bws1565, thanks for your response. We haven't had his corisol levels checked- but he isn't tired during the day- or doesn't appear to be. I've been thinking about a daylight lamp. Have you found them helpful? Thanks for your input!
  8. Desperate for Sleep

    Sadly, we are back to not sleeping, though his OCD continues to be reduced. If anyone has any sort of magical answer, I’d really love to hear it.
  9. Trauma

    I agree with bobh. Also, many, many children have traumas and don’t have PANS.
  10. Does anyone know if, besides during an active infection, and prophylacticly, do antibiotics serve a purpose during a flare? Are there any studies that have explored this? Thank you.
  11. Desperate for Sleep

    MomWithOCDSon, My DS (7) was on a combo of Zithromax/Malarone for Bartonella, Babesia, and Lyme beginning in August. The antibiotics initially made a huge difference, relieving lingering PANS symptoms- I felt that for the first time in years I had my son back. However, he began flaring in December, despite the antibiotics. This is what caused the doctor to stop the antibiotics, to see if things would improve. However, they did not and the sleep problems escalated. This is when he was put on a new antibiotic (Arithromyacin). Which so (fingers crossed) seems to be helping. My guess is that it is helping whatever was the cause of the most recent flare. Not sure it is a solution- but I greatly appreciate the temporary reprieve!
  12. Desperate for Sleep

    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!
  13. Desperate for Sleep

    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.
  14. Desperate for Sleep

    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.
  15. PANS and prophylactic antibiotics

    Thanks, bobh. We will see what happens. I'm starting to feel like there's nothing I can do.
  16. 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!
  17. 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!
  18. Pityriasis and Pans/Pandas Link?

    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!
  19. 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.
  20. School

    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!
  21. 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!
  22. 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.
  23. MTHFR Mutations

    Hi I'm new here and have spent the past few weeks immersing myself in the wealth of knowledge you have all made available here. It's been incredibly helpful as I try to learn everything I can about PANS. So first I just want to say thank you. My question is, are most PANS kids compound heterozygous for MTHFR? Please excuse me if this is a ridiculous question- I've been barely able to understand the ginetic mutations. I'm asking because I received some of my son's test results and he is compound heterozygous. Also, can someone explain why it's important to know your mutations? So confused! Thank you and please excuse my lack of knowledge.
  24. 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!
  25. Prophylactic Antibiotics

    NYCMom, thank you. I didn't know that people were finding that the antibiotics helped with inflammation. I appreciate your response!