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  3. I tried Oil of Wild Oregano for my DS in 2016. This was before I could find a doctor to evaluate him for PANDAS. The only info I found on dosing was on YouTube. The information I found (not necessarily for PANDAS specifically) recommended pure Oil of Wild Oregano (not diluted with olive oil, etc). I bought it from Amazon, I think, and it shipped from Greece. YouTube info said to use high dose. If I recall, I gave him 15 drops, 4 or 5 times a day. I had to mix it with orange juice. It was so strong and even mixed with orange juice, would burn his lips and mouth. Since DS complained so much, my DH agreed that I could give it to DS for only one month. DS was severe at the time. Incomprehensible OCD symptoms. We began seeing improvement in about a week. By the end of the month, his OCD symptoms went from a 10 to a 7. Looking back that was huge. I would definitely try it again if I needed to. I just wonder if the less concentrated versions work.
  4. Yesterday
  5. Thank you for responding! Does anyone have any suggestions about dosage of oil of oregano for kids?
  6. mlee


    Any recommendations for doctors, ND or other practitioners to help with tics in the Seattle area where your family has found success?
  7. Last week
  8. Sheila

    vitamin question

    HI Joy -- There are a number of reasons that people can have short term memory problems, and different approaches can possibly improve it. Since you have seen that there is a diet connection to his tics I would continue to pursue that approach. Also two additional ideas to consider are that amino acid imbalances or a lack of certain nutrients (i.e., B vitamins) can affect focus and memory. For this effort I would see a nutritionist who is skilled in working with youngsters and natural approaches (versus a conventional nutritionist at a hospital setting, for example) or an integrative practitioner who can test for deficiencies or make recommendations based on a clinical evaluation. And along the lines of the probiotic that you mentioned, a common cause of memory problems is "brain fog" caused by a candida overload in the gut. You can see this article for an explanation. Someone does not need to have all the symptoms for a connection with candida--but you will see memory in the list. Since you are not sure how much cooperation you will get from your son with diet change you might need a practitioner to explain it to him (if indeed it seems this is an issue) rather than you trying to control his diet especially since it usually means reducing intake of some favorite things like breads and sugars. There are other causes and approaches, but starting here could make sense for you. (With the B vitamins be sure to get one that doesn't upset the stomach. ) Also our book Stop Your Tics by Learning What Triggers Them gives a lot of ideas of things that could be playing a role. It is user friendly. I hope that gives you some direction. I know it is a challenge, but you seem to be on the right track! Sheila
  9. Hi samz-- it is impossible to suggest a perfect match (just like trying to find a dentist everyone would like). But this doctor seems relatively close and has the type of approach that has been helpful for some with the issues you are facing. You can check out the website and see what you think. I hope you will keep us posted. Sheila http://www.francisholisticmedicalcenter.com/
  10. Note: This has been approved for posting by Forum administration. For any that contributed to this genetic study that we posted here (and elsewhere) - thank you so much! The cutoff was last night, and we had a great result - 71 sets of data. I will post some tidbits of "aggregate" results here (and in the other groups this was put in). I am wary of posting full results on facebook, because then facebook could claim some ownership. Instead, full analysis results (data in aggregate form only) will eventually be posted here: https://osf.io/pf7q2/?view_only=ba9efeabb38e4a22adced3b5ba4dc5a5 That link above is live to the public now, and you can see (in the last revision of a registration plan), what are the 78 SNPs that we have looked at. We are going to look at many more SNPs, though, and do lots more analysis than what is listed there. The plan was just to lay out in advance what we could declare as significant in this pilot study.
  11. Thank you. I have joined FB groups, went to an allergist for skin testing (most common allergens negative), sertraline isn't working so we are weaning off. Shelia, thank you for reaching out and I would love help finding a doctor in MA that can help guide us! Thank you!
  12. lordchallen

    Headaches every night in pandas kid?

    My DD(11) was getting headaches, but because I have been through this myself I was went straight to massage. She would get pain in her back and neck. It happens everyday, and it's a little annoying trying to keep up to it. But if you address the spot that the child is complaining about, you will usually find that muscles have a weird grainy feel to them. You can almost imagine thin paper crumpling. Press and stretch the muscles for a few minutes until it grainy feel goes away, or the child says that it is better. It's easy to say that it's anxiety, but just as likely brain inflammation causing the muscles to contract. My daughter is always bending her neck trying to get the tension to release. The stomach aches are greatly helped, IMHO, by alka seltzer gold. (Might have to order on-line.) My daughter would be doubled over, screaming in pain then be just fine after a 1 tablet (half dose.) The stomach aches were most often caused to anxiety of leaving the house. I think the best thing I have done is the probiotic (psychobiotics) but it takes time. The stomach aches have almost completely stopped. Pro-Kids Culturelle packets for kids
  13. Thank you for sharing your experience with acupuncture for your facial tic, Jay. So glad you found relief. Do you have to maintain this on a regular basis?
  14. Did anyone have success here?
  15. jmacja

    vitamin question

    I'm not sure he will be willing to monitor his diet, but we can totally try. I know red things make his tics worse. I have also been told that he has short term/working memory deficits. Could that be from tourette's also? Or, do you think there might be an underlying condition that I don't know about yet? Thank you for all of your help. I really appreciate it! Joy
  16. Hi My son with TS/Crohn's had abx sensitivity and we found Olive Leaf Extract, Monolaurin (Lauric Acid), Oil Of Oregano (capsules) and other natural antimicrobials very helpful, including dietary garlic, honey etc. I don't have experience with these and PANDAS
  17. Earlier
  18. Hello! I'm a new member trying to puzzle out the use of prophylactic antibiotics with my 10-year-old DD who has PANDAS. Antibiotics seem to be the go-to solution for PANDAS, but what should you do if your kid feels terrible as a result of them? I'm looking for feedback from any parent who can relate to my situation. Last spring my daughter got strep and overnight developed terrible separation anxiety, had panic attacks, and called me daily from school. After a few months on Keflex she gradually returned to normal, but the Keflex itself gave her dizziness, stomach aches, and anxiety. During the exacerbation she was 50% normal, on Keflex 70%, and off antibiotics returned to 90%. Keflex is the only antibiotic she can tolerate, as she is allergic to Penicillin and gets very depressed on Zithromycin. Now I'm struggling with the decision about whether to give her prophylactic Keflex whenever a classmate is diagnosed with strep. Whenever I do, her reaction to Keflex always stirs up anxiety and brings her back to 70%, which is heartbreaking. I know that the Keflex is causing the reaction because the times I have chosen not to use prophylactic antibiotics she remains normal. I feel like I am stuck between a rock and a hard place because I hate to make her feel worse, but am scared of her getting strep. What would you do in my situation? Also, if your child has a hard time tolerating antibiotics, are there any other supplements you recommend as protection? Thank you!
  19. DD1 was on 6 weeks of Azithromycin. Little/no improvement. Switched to Augmentin 5 days ago. Now leg pains are back with a vengeance (hadn't really noticed they had gotten so much better - guess they had), and we can't get her to brush her teeth. DD2 started Bactrim 5 days ago. Restrictive eating/OCD flared, and 24 hours ago, she was switched to Augmentin. Reports confusion/difficulty reading tougher texts that she thinks she would have been able to comprehend otherwise. Was confused tonight in ballet. I thought PANS would respond to antibiotics by getting better quickly, slowly, or not at all, but not by getting worse. Are they both on the wrong antibiotics? How long should I give it? PANDAS pediatrician doesn't think there should be a herx? We have two more weeks before they are seen at Columbia.
  20. garden

    PANS - oddball symptoms

    Thanks. The stomach pain and leg pain were both prior to starting antibiotics. Two local PANDAS doctors have told me they see the stomach pain frequently. One even said: I see the kids all the time with full GI workups, lots of testing, and nothing shows up.
  21. 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....
  22. bws1565

    PANS - oddball symptoms

    I found my daughter greatly improved when we seriously addressed candida and mucoid plaque. There is plenty of literature that candida alone can cause anxiety and brain fog. Add parasites to that list and you have a real problem. Really, we should have done colonics, but DD did not want to. So we did 1 saltwater flush, and then put her onto Diamataceous Earth for candida and OxyPowder for Mucoid Plaque cleansing. After 3 days we started seeing a die off result. After 1 week the results were really great. I won't know if the abdominal pain was due to constipation, leaky gut, or parasites and candida or perhaps reaction to antibiotics. Just mentioning what we feel helped her along. (She is still off wheat and some dairy; claims it causes abdominal pain)
  23. nycmom

    PANS - oddball symptoms

    I can confirm the abdominal and leg pain, but I can't tell you the reason. We assumed abdominal pain was from the antibiotics and leg pain coincided with puberty so we chalked it up to growing pains, but yes I could easily see it being PANS flair related. You have an inflamed brain at work here, mystery symptoms just seem to come with the territory.
  24. Hi, It appears both daughters have PANS/PANDAS, after seeing many conventional specialists, and several believing PANS or PANDAS is the correct diagnosis. Some symptoms I don't see frequently in the literature, though, and I wonder if they are related. Abdominal pain. Several local doctors say they see that a lot in PANDAS patients. Why isn't it listed as symptom? That is the most-complained about symptom for both kids (they don't complain about the OCD (both), tic (one), anorexia (one) - that's all me!). We wasted a lot of time/energy with GI tests and procedures that showed nothing. Leg pain. Huh? Why? Is this related? Sometimes it flares at the same time as the stomach pain. Joint hypermobility and/or Ehlers Danlos syndrome. Is this co-morbid? Loose ligaments as symptom? EDS kids more vulnerable to PANS? I'm just wondering how many problems I have on my hands... Thanks for any help you can give!
  25. Hello. Four long painful years. Our now 14-year-old DS is entering life but having a difficult time with the school IEP CSteam. They doubt the cognitive struggles that still remain. Uhg. I would like to have a Nuro psych eval done. However we were looking for someone who is familiar with pans and the cognitive fatigue and brain fog n various other restrictions that occur and affect his education. Any names would be helpful. !! Ps have medical neccisity letters from his immunologist but they want more. Very difficult cold people. So sad.
  26. 3200mg (3 x 750mg pills) GABA; 3 x 200mg L-theanine. 65lb DS
  27. If anyone is still interested in participating, there is only one more week until the cutoff for this pilot study. I am not sure if anyone from this group has uploaded data (it would be some work for me to check where non-anonymous donors are from, and of course I won't know for anonymous donors), but there are 40 participants so far from other groups. It is exciting work for which there has not been (to the best of my knowledge) anything published to date. We intend to publish publicly only at Open Science Foundation, not (at least at this time) formally in any peer-reviewed journal.
  28. You described my youngest to a T. His bad days were just like you described: hyper, disengaged and mdly autistic like. This is why he is on year 5 of longterm abx and doing fantastic. Also needs LD IVIG and antivirals for immune deficiecy. No ADHD meds needed. This works for him. Never needed accomodations, never missed school, pretty much straight As, great and thlete. He is 11 now...
  29. shelly76


    Hi Mountainmom, We've been using homeopathy for 3-4 years now. It hasn't created a complete cure, but it almost always yields some kind of relief for my son. He's a terrible sleeper and homeopathy is the one thing that helps so much with that. I haven't found anything else that helps. But he can't take pills or drinks or anything like that at this point. He has a lot of tics (diagnosed w/ Tourettes, along with many other things), and it does help. Helps his energy and mood. But not every homeopath has helped- you have to find a good one. Currently we are seeing Pierre Fontaine in NYC... over Skype as we are in WA state. It is very pricey, but I love the way he prescribes... one remedy at a time, low dose- no aggravations. He cares and he's very thorough and helpful. It's worth a shot!
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