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  3. What strength and brand of cbd oil? I used cbd isolate with no diff..sending back for broad spectrum.
  4. Q: So are you looking at genetic vulnerability? What are the long term goals of your study and how might it affect kids with these conditions in the future? A: Yes. The “holy grail” of a genetic study would be an “if and only if” genetic variation as has been found for Cystic Fibrosis (CF), where if you have the genetic variation you have the disease, and if you don’t have the defective gene, you don't have the disease. But autoimmune diseases don’t seem to be like that. Instead, dozens or hundreds or maybe even more than a thousand genetic variations seem to increase or decrease the odds of getting the disease/disorder/syndrome. Nobody (that I know of) has established any genetic variations associated with PANS, and for PANDAS, there have been (as far as I can find) 3 published studies (all from Turkey), that haven’t yet been replicated. The one didn’t replicate in our pilot study (that doesn’t prove it’s wrong; different ethnicities could have some different causal variants), the other I have concerns on the stats, and the 3rd I couldn’t test because the variation isn’t called in 23andMe (or AncestryDNA). PANS and PANDAS is way behind other diseases and disorders in laying this genetic groundwork. Once the genetic groundwork is laid, and replicated, experts in biological pathways need to go at it, to figure out what each genetic variation’s role is, if any, to understand which processes in the human body are affected. Here is an example of some of this kind of biological pathway discussion: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3654249/ . We don't have all processes and pathways in the human body mapped, so this step can't be timelined. I am not well informed around this part of the puzzle, but I can easily imagine it being years or decades before there are significant understandings established. Or, we might get lucky and stumble across something sooner rather than later. Then, the final phase would be treatment development, which could also be a long timeline. There is nothing innate about genetic studies that dictate what ultimate treatment could be. They don't have to beget pharmaceutical interventions, though our financial and academic structures do seem to be geared that way. But still, there is no reason a genetic understanding can't spawn a dietary or other non-pharmaceutical treatment solution. These details tend to make the long road feel overwhelming, and there is still so much more to the overall story. But as an example, the discovery of the CF gene (in 1989) has over the past 30 years greatly extended the life and comfort of those with the disease (http://www.sickkids.ca/AboutSickKids/Newsroom/Past-News/2014/25-years-later-the-impact-of-the-cystic-fibrosis-gene-discovery.html). With PANS and PANDAS, we need to get going. There is one other nearer-term possible benefit from this kind of study that I have stumbled across, an idea inspired by the very Turkish study whose math bothered me. It's the idea of a predictive model based on genetics: a long shot, and bound to be controversial (23andMe is "not to be used for diagnostic purposes"). This would ultimately require more data than I am getting here now, and likely more SNPs of significance than I can show in this study (which is 10, if luck is in the wind), in order to work even half-decently. But I have to at least poke at it.
  5. So the gcmaf treatment is to boost the micro(somethings) that help the little Pac-Mans eat the Nagalase which goes up in count when viruses, bacteria or things like cancer are going on. Basically it’s to help the immune system work better.
  6. In the thread @cmac posted is this link, though maybe you already checked it? It's how we found our practitioner. Agree w/others, if you can't find someone in TX, try to get a phone consult out-of-state to start with and get more blood work. http://pandasnetwork.org/us-providers/
  7. Q: Can you use AncestryDNA raw data? A: We did use ancestry for the pilot study, but it doesn't call 7 of the 10 SNPs I am looking at this time around. Because I am going to stop when I get 70 data sets, getting Ancestry data sets will mean less data for those 7 SNPs, which means weaker results for them. So, we won't be taking AncestryDNA data sets this time.
  8. Maybe a PANS/PANDAS specialist could do a Skype/phone consult and at least give you a script for all the blood work? Also this thread has info on doctors people here have seen and I think various states are mentioned.
  9. I have looked online and looked through the posts but dont see many. The one near me makes you write a letter then based on thst he decides if you are a good candidate. First appt 1200+... im trying to find an integrated dr..i found neurologist but he wants a referral but how do you get a referral if no doctor believes you. Im in tears everyday. This is rough. I have a ppo why would he need a referral?
  10. Completely understand - have you asked around here for any PANS/PANDAS Dr's in TX??
  11. I wish i could trevel to see that dr. We are in texas. Paying 6000 in braces tomorrow for her.
  12. Highly recommend scheduling a visit with Dr. Trifelleti (or another Dr ppl may recommend on here). He's the one who ordered all of the tests, even genetic ones, and eventually figured out what was going on with me when nearly every other Dr told me to get CBTherapy. Gee, thanks. Btw, I had been doing CBT and it was not helping. Also, when I indicate pneumonia was likely my trigger, that's also known as myco p (mycoplasma pneumoniae).
  13. Not bombarded here just can use anything i can. Please any info is good info at this time. Dont know what doctor to go to next.
  14. I know that “inexpensive” supplements can add up, but we also used 5-HTP for our DS. It was recommended by an otherwise unhelpful psychiatrist. This was when DS was at crisis level. Need to use on empty stomach. I was able to get DS to and from bloodwork appointment on public transportation because of the 5-HTP. I don’t recall why we stopped using it. This was in 2016. I believed we stopped a couple months later when we finally found a doctor to prescribe high dose of Augmentin. What form is your Oil of Oregano? Again, we saw improvement, but used a high dose. 15 drops of undiluted 5x a day (mixed with orange juice). Something else we use as antibacterial and anti inflammatory is tea made from ginger root. I grate a hunk of ginger root and steep it in boiling water, then strain. It’s pretty spicy, but we like it. We’ve been chilling it and using as an alternative to unsweetened iced tea. At the risk of bombarding you with information, those were a few things I thought of.
  15. My son had strep and myco P. Try testing for myco P. I had never heard of it before they tested for it (I had never heard of PANDAS until pediatrician told me). The first dr we saw after pediatrician was an infectious disease specialist—he tried a whirlwind of antibiotics over a course of two or three weeks and nothing really helped. It was only after 6 weeks of Biaxcin plus 2 weeks of Augmentin on top of that that we saw a difference (that was with Dr T—specialist in NJ). My point is that you aren’t doing anything wrong —just that most times this is a long haul. I think there are a few kids who recover quickly with one two week course of antibiotics, but I think they’re the exception not the norm. From what I’ve gathered it can take 4-6 months (in our case it was 6-7 months) to return to baseline after the initial exacerbation and the exacerbation can last for weeks, too. I think time is a big part of the healing process. The inflammation needs to come down and even if there are no strep titers, there could be ones from myco p. Have you also checked for Lyme? Oh, and even with a solid PANS diagnosis from multiple drs, I did also wonder if my son was mentally ill and that I was deluding myself. So, I know how you feel. And we were offered psychiatric drugs almost immediately as well (from the infectious disease dr).
  16. Yes we just used a doctor thst didnt use my insurance...he just ran strep teiter thats it. Called my kid crazy and left. Im not totally against phych drugs but thats what drs immediately put her on because they dont know whats wrong. Frustrating!!!!! Ty so much. I know we will get thru but being in the storm is always rough
  17. "If you light a lamp for someone else it will also brighten your path."
    - Buddha

  18. My heart breaks for you and your family. Since your DD’s onset is recent, there should be so much hope...if only the doctor’s weren’t working against you. What bloodwork did they run? Did they check for Mycoplasma Pneumonia? We spent years trying to find someone to evaluate our DS for PANDAS/PANS. Ultimately we used doctors that don’t accept our coverage or any coverage.
  19. I'm so sorry to hear of what your daughter and you all are going through - it sounds tough and incredibly frustrating. I won't say you're doing anything wrong as I think we are all doing the best we can given the circumstances. I truly feel for your daughter as I have dealt with those horrible OCD thoughts myself - I was dx PANS almost 5 yrs ago (young adult onset w severe anxiety that immediately took hold as the pureOCD subtype). It wasn't strep that triggered it for me either (my guess is it was brought on by the pneumonia I battled immediately before this illness). While I would typically second anyone refusing psych medications, I will tell you that I would not have made it to today without their help along w the help of a great psychiatrist. I guess I'm saying please don't shut the door on the potential for her to find some relief in even just one medicine, if it gets to that point. I know there are potential risks and benefits to each approach, just please keep an open mind. Have you heard of TRS by Coseva, before? I just placed an order this morning and would like hear from anyone who has tried this. If you haven't heard of it nor tried it give it a search. It's premise is interesting and I'm curious to see if it will help me. Btw, I am in no way advocating nor endorsing. Wishing you and your daughter the best. Please give her extra hugs as what she needs most right now is love and acceptance, and to know those thoughts are not HER THOUGHTS, but rather manifestations of the illness itself. They do not define her. She's likely very scared inside - it's hard to understand what's going on (even for an adult, let alone a child). (((Hugs)))
  20. After doctors appts, phych, and counselors I thought i had found a great pandas doctor. However when i called they told me I had to get a referral from the main doctor. However when i contacted the main doctor he said no. He said her teiters were normal and basically she has a mental problem in which he prescribed prozac. He said mental disorders are common in young girls. Says it was just a coincidence that she has been sick the same times the thoughts come and that since she doesnt have strep anymore that the thoughts should be gone. True she doesnt have strep, but she still has a nasty cough. There are several things thst I know have screwed her up, she had a flu vaxx last year in october, and she always gets strep. Im wondering now, is she just mental?? He asked her and her phyciatrist asked if she was abused, i just lost it. My husband and i are strict but never abused. Im trying to trust God in all of this but how does a young kid just become mental. Im so tired and scared. Sadly sometimes I hate hearing her thoughts and push her away. She has become very moody as well. I dont know what to do. I refuse to put her on prozac. Currently we are trying milk thistle, cbd oil, oregano oil, motrin and probiotics. What am o doing wrong? Advice needed!!
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  22. Hi Sad Dad, Welcome to the forums. I'm so sorry you are in this situation of feeling helpless. So many of us have had that awful feeling yet also been able to turn things around. Please read a couple of articles on our site that give a overview of approaches people have found useful, linked below. (Don't count on one thing, like some magnesium, to be a silver bullet.) Also I would suggest you get the book you see at the top of this page -- Stop your tics by finding what triggers them. It could be helpful in trying to get to the bottom of what is going on. Our other book, Natural Treatments for Tics and Tourettes -- both books are on Amazon--will give a broader picture beyond triggers, including nutritional supplements and ideas for lab testing if that were needed. Lots of info from families who met with success with natural approaches are included in both. Here are a couple of articles--remembering that everyone is different, just to give some concepts; you can find more on the site. https://latitudes.org/dealing-with-tourettes-or-tics-i-wrote-this-just-for-you/ https://latitudes.org/how-we-reversed-jessicas-tic-disorder/ Our organization finds that tics are often allergy connected--and not just just throat/nasal, but rather an allergy that affects the brain. That allergic inflammation or immune response can be triggered by factors such as gut conditions, chemical exposures, typical allergens, or dietary issues. Please don't be sad. You've come to the right place to start looking for answers, and you seem like the type of parents who can find them. Your daughter sounds like a sweet and lovely girl. It's good to continue to just think of the tics as habits and avoid her being self conscious of them. I hope this helps? Sheila
  23. Hi everyone. I found this forum while searching to try to educate myself about something that I think I now have to face the reality of instead of just hoping it's a passing phase. My now 8 year old daughter has been having fairly consistent tics for the past 2 years. She started off with a vocal tic that would last 2-3 months and then be replaced by another vocal tic. Fortunately they were sniffling and throat clearing so they didn't pique significant interest from teachers/peers. After around 9 months of that she had a 2-3 month break before a short excessive blinking tic that lasted about a month. After a month of nothing she started throat clearing again. That lasted for 9 months. During that 9 months we took her to three doctors (2 peds and 1 child psychologist) who were fairly dismissive. Her primary care doctor thought it was an allergy, so we treated her with Zyrtec which reduced the throat clearing noticeably, but it was still there. After the throat clearing disappeared in March 2019 within a few weeks she started sticking her tongue out for a second or licking her upper lip. The doctors were not especially concerned and tried to reassure her mother and I that tics are pretty common and she'd likely grow out of them, but I have lost faith that will happen. Fortunately the tics haven't impacted my daughter yet and she doesn't really exhibit any signs of comorbidities, but she's still quite young for those I think. Both my wife and I had tics as children (she had at least 1 verbal and 1 motor which lasted more than a year and I had 2 motor that were less than a year that we know of), but as far as we and our parents can remember they didn't last as long as my daughter's. I feel pretty hopeless because I'm afraid for her. She's not the toughest/most resilient kid in the world and I fear she will take questioning/criticism pretty harshly. She's one of the kindest people I know and it's so hard to be powerless to help her. I was hoping some people could share their stories (if they haven't already) about how tics have affected them/their children as they grew up. I kept wishing that the tics would stop like we were told they likely would, but they didn't and I think my daughter would qualify for a TS diagnosis at this point if we were to continue to seek professional guidance. We of course will do it again if things escalate or she takes issue with her tics. Right now she just thinks they are little quirky habits and it doesn't bother her. My wife has been handling it very well. I haven't been. Picturing my daughter brings me to tears because I'm terrified that this will cause her to suffer and she's the last person that deserves it. We decided to try Magnesium to see if that helps at all. She's been on 165mg supplements each day for about 10 days and we haven't seen any change at this point. I feel very alone and very scared and I guess I'm looking for someone with experience to help me understand that things can still be ok. I watch others kids like a hawk now and barely notice them having tics... I'm sorry this is dragging on, I guess I am just very lost.
  24. Q: Will participants get to see the final results of the research? A: Most definitely! You can see most of the results from the original pilot study at a link quoted near the beginning of the post (which actually serves as a consent form). We are hiding the identity of the SNP of significance so that this replication study cannot be accused of collecting data from people that knew they had they risk allele for that SNP! ... you (and everyone else) will be able to see results at an Open Science Framework website. It will be somewhat similar to the results shown for the pilot study.What I will do for any participant that asks, is point out (by PM) which column of data represents you or your child, so that you don't have to look up those 10 SNPs we are looking at in your raw data.
  25. More Q & A from elsewhere: Q: Can you use DNA date from another source ... or do you need the raw data? A: Because the frequencies of risk alleles can vary quite a bit by ethnicity, I use the full raw data to give an ethnicity report (at GEDmatch, where I load only de-identified data - this is mentioned in the post above that doubles as a "consent form"). I use the frequencies associated with 6 main ethnicities to effectively create a control group from dbSNP (a database of allele frequencies). So, sorry - I do use a good chunk of the raw data.
  26. I am going to post here paraphrased questions and answers from other private places where this post was also placed. Q: I can't remember - Can you tell me if I participated in the original study? A: ... I can't tell you right now because I don't have a list of the names on my computer where the de-identified data is. I've never had a computer hack or theft or break-in at my house, but just in case any of that happens, I kept the list of names identifying which data belonged to whom written on an (unhackable) piece of paper locked in a completely different place, and I am not there right now. I will have the same security in place for this study, and will let you know if you participated later.
  27. I have had very good success with Daktarin. It is readily available in Europe as an over the counter gel for oral thrush. It even has a good taste.... I have a friend that brings it from England and have used it for my nursing babies with excellent results.
  28. If you or your child have a PANS or PANDAS diagnosis from a licensed medical practitioner, and you have 23andMe genetic data for that person, you are invited to participate in a follow-up research study titled “Replication of a Genetic Association Among Patients with PANDAS or PANS”. This study is being conducted by Bob Horvath, Michaela Holden and Sam Keating. We are "citizen scientists” with some qualifications in statistics and data manipulation, and direct experience (ourselves or family members) with PANS and other autoimmune or immunological conditions, as well as autism. The purpose of this study is to replicate a specific variation in DNA that was found in a previous pilot study to occur more commonly among those with PANS or PANDAS (P/P) than the general population. You can see details of that pilot study here: https://osf.io/pf7q2/. In this replication study, we also hope to demonstrate statistical significance for up to 9 other genetic variations known as SNPs, and begin development of a predictive model of P/P based on genetics. We will post a link here to the results. Participation in this is entirely voluntary. You can choose to participate anonymously, or with your name attached to the data. There will be no effect on your relationship with the researchers, or any other negative consequences with not participating. If you agree to participate, you will be asked to click on a link below and upload 23andMe data for one person. You may also email your data (see below). Note that for this study we cannot use additional data of close relations, and, if you participated in the previous pilot study, we also will not be able to make use of that same data, or that of close relations of those that participated in the pilot study. The data will be collected regularly from the upload site, until a total of 70 valid data sets is reached. All data uploaded will be safely stored (with no direct identification of participants) on two computers only. Those received after the 70th data set will also be retained for possible later use. Even if you give your name, the data will be separated from and stripped of that name before being stored. After the initial upload and de-identification steps, no other person, website or online service will have access to your data with your identification attached to it. The de-identified data will be uploaded to GEDmatch in order to obtain ancestry, and to confirm no close relatedness to other participants. For those that contribute anonymously, the only link between the principle researcher (Bob Horvath) and you will be a fake name and email address that you give at the upload site. You are free to withdraw from this study at any time. However, once you submit your data, the only way to withdraw anonymous data is if you contact Bob Horvath and reveal your fake name, so that it can be known which data is to be removed. This step could reveal your identity, but your data will be removed from the study. Only Bob Horvath will have access to this full data. De-identified results of the SNPS of interest and analysis of the data will be made known at the Open Science Foundation website. There are no known risks associated with this study, beyond any risk there may be associated with the original data existing (e.g. on the originating site, such as 23andMe). While you will not likely experience any immediate direct benefits from participation, information collected in this study may benefit you and others in the future by helping to determine genetic factors associated with P/P. If you have any questions regarding the survey or this research project in general, please contact the principal investigator, Bob Horvath, at bobhorvath@alumni.uwaterloo.ca By clicking on one of the links below to the upload site, or sending data to the email address above, you are indicating your consent to participate in this study. If you want to contribute anonymously, submit only a fake name and email address at one of the links below. If you use a fake name, make it unique (unidentifiable by others) and make a record of it, in case there is any need to try to contact you (via a comment to this poll in the online groups it is listed in). To upload data for a person that has been diagnosed by a licensed medical practioner(s) with both PANS and PANDAS, click on this link: https://www.dropbox.com/request/0dQQliIe42uzZu28kiMU To upload data for a person that has been diagnosed by a licensed medical practioner with PANDAS (but not PANS), click on this link: https://www.dropbox.com/request/dP7F70p7JdZlWCickAaV To upload data for a person that has been diagnosed by a licensed medical practioner with PANS (but not PANDAS), click on this link: https://www.dropbox.com/request/TrZl51Gi9C2HDDUgx5B3
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