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mountainmom

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About mountainmom

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    Massachusetts

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  1. mountainmom

    PANS - oddball symptoms

    My son only had leg pain when he also had Lyme & bartonella. I think it was a symptom of his infection rather than the PANS. Also, for us, stomach issues were just a symptom of anxiety. Not sure how prevalent these physical symptoms are....
  2. mountainmom

    homeopathy

    Hi bws1565, we used homeopathy several times. The first time was at the end of a flare and it was extremely successful in helping my DS with anxiety and sleep. However, we were never able to repeat the original results.
  3. mountainmom

    Headaches every night in pandas kid?

    Hi lyentzer, So sorry to hear that your son's headaches have returned. My son (also 8.5) had headaches and stomach aches in the evening, but they were due to extreme anxiety. Could his headaches be anxiety? He couldn't really tell the difference. At that time he was also having panic attacks. Is he having other symptoms?
  4. mountainmom

    IVIG questions

    I sent you a pm'd you.
  5. mountainmom

    Flare protocol and prognosis?

    We just completed IEP process for my DS8. My rather basic understanding is that an IEP is preferable for long term situations. It’s the accommodations that were more important to me m- that they be in place permanently so that they are there when he needs them. Much of the accommodations above plus typing, speech to text and/or a scribe. Is your granddaughter taking Aleve? It’s not a cute, but helps us. Also epsom salt baths.
  6. mountainmom

    Prophylactic antibiotics

    What your specialist said makes sense to me in light that my DS’s PANS symptoms got worse each year after onset. If we’d caught it earlier and begun prophylactic antibiotics, perhaps he wouldn’t have continued to get worse to the point where it doesn’t seem to respond seem to respond to antibiotics at all. It’s so hard because it seems like each kid is different, but if I could go back and begin antibiotics during his first flare- of course knowing what I know now- I would. And I’d keep him on them for a long time.
  7. mountainmom

    Fifth year of PANS, now what?

    I do low sugar and no gluten. I'm not seeing these things helping. I'm so at a loss!
  8. mountainmom

    Vagus Nerve and Inflammation

    This is very interesting! Thanks for sharing. Curious how they stimulated the nerve in human subjects....
  9. mountainmom

    Fifth year of PANS, now what?

    WorriedMom, Did your daughter have an issue with strep? My son doesn’t seem to.... are they doing this for kids without Strep related flares? I will talk to his doctor about that. Glad your daughter is doing better!
  10. mountainmom

    Fifth year of PANS, now what?

    Dasu, I’ve thought about homeschooling- but I can feasibly make it work financially. Wish I could. I also can’t fugure out why his flares last so long. thanks for your response.
  11. My son (8yrs old) is beginning his fifth year with PANS (Lyme, etc). However, it took us four years to diagnose and he’s been treated with antibiotics for the past year. Each year he began flaring in December/January- until mid summer. Each year by August he’s like a different child- until the next flare begins. This past year, with antibiotics, things were no better. There were new symptoms- fears of contamination and poisoning, and more. Just before school started this year he had a cold and he began “evening” for the first time since last winter. His fears have begun to return. He also has says that he gets invisible arrows in his body and has to pull them out and “throw” them away. I often see him doing invisible things. I’m terrified of what we have in store this winter. Why doesn’t he get better with all the supports he has in place- antibiotics, etc? What do we do next? What are we missing? Does this ever end?? I feel like I get one month a year with my child and it breaks my heart. Thank you for your thoughts,
  12. My son has absence seizures during flares. He just sort of "disappears" for 30 seconds or a minute, many times a day. During those "absences" he can't respond. Sometimes when he "returns" he will shake his head as if to clear it.
  13. mountainmom

    medication issues

    My son took Mepron for a while for Babesia.
  14. mountainmom

    Bartonella

    Sorry for the slow response. He tested positive for multiple different types of Bartonella. He's been on antibiotics for almost a year. He’s s currently on Bactrim and Amoxicillin. Plus currently on vitamin D, CBD oil, Nystatin for yeast, milk thistle for the liver, iron, and Aleve. His immune system seems better this year, post treatment. Summer is always much easier for him. Currently, his OCD, anxiety, etc is much better. He just has one residual tic. But, otherwise as he has for the past four summers, he has returned to himself. If you have insights, please share!
  15. mountainmom

    Possible PANS - not sure she has OCD

    Hi Jasperilla, I’m so sorry you’re going through this. Does your daughter have separation anxiety? My son (PANS triggered by Lyme&co infections), had that before I really understood/recognized his OCD symptoms. Also, the OCD was more obvious this last year than in previous flares. Do your daughter’s symptoms flare? For us that was helpful in diagnosis- his symptoms came and went together. You asked about OCD symptoms that are less obvious. Her are some that I saw at different times- unable to throw anything away including bits of garbage, obsessively collecting sticks (we had buckets of them everywhere), tapping different places on his body or on objects to “even out”, asking lots of questions, for example, “Have you ever touched your shoe and then your lip?”, unable to use his hands to eat, inflexibility around changes in routines (we have to do things in the exact same way everytime, sit in same spots, etc), confessing thoughts, worry that he might not believe the things he says (for example, I’m not sure if I really am sorry). Hope this helps a bit.
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