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mountainmom

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About mountainmom

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  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. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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!
  7. 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.
  8. Trauma

    I agree with bobh. Also, many, many children have traumas and don’t have PANS.
  9. 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.
  10. 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!
  11. 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!
  12. 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.
  13. 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.
  14. 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?
  15. PANS and prophylactic antibiotics

    Thanks, bobh. We will see what happens. I'm starting to feel like there's nothing I can do.
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