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mountainmom

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Everything posted by mountainmom

  1. 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.
  2. 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,
  3. 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!
  4. mountainmom

    Vagus Nerve and Inflammation

    This is very interesting! Thanks for sharing. Curious how they stimulated the nerve in human subjects....
  5. 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!
  6. 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.
  7. 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.
  8. mountainmom

    medication issues

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

    Bartonella

    I’m hoping someone experienced with Bartonella can help me with this. My DS has continued to flare despite beginning treatment in August for Lyme, Bartonella & Babesia/PANS. Our Llmd says Bartonella treatment is particularly lengthy and believes that this is what we are continuing to deal with. Can anyone speak to how long treatment took them for Bartonella? Since the beginning of December, we’ve had two good weeks. I miss my boy. Thank you.
  10. 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!
  11. 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.
  12. mountainmom

    Need Help

    We’ve been diagnosed PANS and treating since August (Lyme, Babesia, Bartonella). Immediately after starting antibiotics, saw marked improvement in symptoms despite DS (7) not being currently in a flare. However, in December he began to flare. We had a two week reprieve in February when he got the flu and has been flaring since. This flare has very different symptoms from previous flares. DS is often unable to eat because he says food tastes wrong, thinks it’s dirty, contaminated or poisoned. This seems to be getting worse. He Is very anxious and often scared of everyday objects. Our world is getting smaller and smaller. My questions are, what else can we do apart from watch his symptoms worsen? His not eating is getting worse, is there a way to stop this? What can I do? What do we do if it keeps getting worse? We see three different doctors- all of whom are not helpful. Is that because there isn’t anything that can be done? Please help! Do all kids get better at some point? I feel like this will never end. Thank you.
  13. I was very excited to find this site with interviews with PANDAS/PANS specialists. It is informative and shows a variety of approaches to treatment. I'm curious about something that Dr. Kovacevic says and if this is reflective of experiences of those on this board who have older children/been in this for a while. He seems to feel that IVIG is necessary to completely eradicate PANDAS. He states that antibiotics and steroids can send symptoms into remission, but that without IVIG, symptoms will return at some point. I'm curious if this holds true for you? He also believes that the IVIG is generally only effective during a certain age window. Have you found this to be true? Thank you for your thoughts.
  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. mountainmom

    Seasonal swing in PANS flares

    Curious if anyone else has this issue. My son has flared every December/January through May/June for the past four years. He was positive for Babesia (and Lyme, Bartonella, etc.,.). Not sure if it is due to Babesia, as this poster had queried, or something else. Do others without allergies seem to flare in this- or any- cyclical fashion? I wonder if we moved to a different climate, would he stop flaring? Curious. Thanks!
  16. mountainmom

    Desperate for Sleep

    Hi lost99- Gaba really helped my son for a while until his symptoms shifted and his flare worsened. Then we switched him to CBD oil- which also was very helpful and he continues to take now. It really helps with his anxiety in the evenings. I wish I could tell you which GABA supplement we used and how much, but we are away for the month. When I get home in August, I will update. I know others on here have had positive results with it. Maybe try searching the forum's archive in the the interim? We didn't wean him on or off. I just started giving him one pill with dinner and he immediately began (for the first time in years) sleeping through the night. When we switched to CBD oil, I just stopped the GABA. I hope this helps. So sorry you are going through this.
  17. mountainmom

    Dr. K Interview, IVIG & Question

    abdualpt, this is what I found when I checked the 2017 guidelines: I interpreted to mean that in extreme cases, IVIG is helpful, not that it is necessary to recovery. Am I misreading? Can you tell me where you found the info that you cited? Thanks so much. Just trying to figure out what our next steps should be.
  18. mountainmom

    zoloft - good/bad?

    Bobh, can you share the paper? Do you still have the link or info? Thank you!
  19. mountainmom

    Need Help

    bobh- there isn't an obvious infection. He doesn't seem sick. I think his sinuses are fine (maybe it's the Bartonella?). We are using Aleve around the clock. It does take the edge off. Thank you for sharing the link to the research on baking soda. I will see if he will tolerate that.
  20. mountainmom

    Need Help

    Thanks for your replies. My son is currently on antibiotics. I think that we need to switch them- as they don't appear to be helping. MomwithOCDSon, would the flu still be active in his system? We did anti-virals right away when he the flu was active. Our Llmd still feels the Bartonella is active- based on his symptoms- though I don't really understand how they can tell. I'm going to talk to our Llmd about steroids. I have heard mixed things about steroids when Lyme is a factor.... We are on our third therapist and haven't found any to be helpful at all thus far. I'm hoping our new one is better able to help as she works with a lot of PANS kids. It's just so frustrating. We are almost three months from when he had the flu and he is getting worse! He can't go to sleep. He's afraid of his blankets, his bed, his pillow, the floor. LNN, I will take a look at the Maudsley Approach- thank you. So grateful for this board and all of you.
  21. mountainmom

    Dr. K Interview, IVIG & Question

    bobh, Here is the link to the survey. I think it had about 1,400 respondents. It is interesting to look at, though, I think they presented some of the information in a misleading format. For example, when they figured out the percentages regrading the success of different medical interventions, they included the N/A numbers in the percentages. Thus, it appears that some treatments (especially those less commonly used, like IVIG) are less effective than they really are. Let me know what you think. I think page 15 has the results of puberty and remittance of symptoms....
  22. mountainmom

    Bad headaches at Night, suggestions?

    Hi, I have melatonin drops. They have a pretty awful flavor, but I’m not sure it’s the melatonin or something added. We have a terrible time with sleep- both going to bed and staying asleep. Magnesium about half an hour before bed seems to help a little. So does a bath with Epsom salts. Aleve at night seems to help my guy. The most helpful thing we tried was GABA which worked like magic for about two months and just stopped. Now we are trying CBD oil. We will see if that helps. Best of luck. Hope this helps!
  23. mountainmom

    Dr. K Interview, IVIG & Question

    Bobh, Thanks for your insights. I was feeling pretty disheartened after reading that and the most recent, big survey from pandas parents network (in which it seemed that puberty doesn’t make a difference for most kids). Good to hear that for some it has. I was starting to think that was just a rumor. Since starting treatment we had three good months followed by five months of flaring. We are still in it. Just in need of some hope....
  24. mountainmom

    Refusing to bathe, ideas?

    I’m sure you’ve tried- but washing without soap? Or letting him have more control and picking out a new special soap at the store?
  25. mountainmom

    Ibuprofen question

    So sorry, I said turmeric, but meant curcumin (lack of sleep!). My 7 year old takes one cap morning and night.
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