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  1. Today
  2. I forgot to tell you that you shouldn't overlook foods high in magnesium of which there are many as a possible aid..I cannot tell you how many things that I have an averse reaction to as a supplement that I react better to in food...Everyone is different but I think many things are better taken in food.
  3. Have you had your daughters vitamin D levels checked? Does she get spring fever and more depressed in the winter? Trying to get sun as well as they have natural light sun desk lamps..I lean more towards getting actual sun than taking a lot of supplement but D3 taken with a meal that has fat in it is the way to take a supplement..I take just the 125% rda pills and try to get the rest by getting in the sun more and a lamp..there are foods with it too...Exercise helps depression too and intensive exercise is great but I believe just a steady exercise flow every week doesn't have to be super intensive or a long time..anything helps..most important is that whatever it is..it is something you can stick with.. I took a drop of lithium salt supplement which does help with depression for some people..i experiement with very small amounts of things..Dextromethorphan from cough syrup has actually cured some people from treatment resistant depression and when I took the robitussin I did notice an effect interestingly..sorry magnesium didn't work did you ever try adding a half or quarter cup of Epsom salt to a warm bath? I find when take a bath like this the magnesium this way calms me and other methods and forms of magnesium can hit me completely in a different way..I feel completely calm after a warm Epsom salt bath.. some people have also talked about the carnivore diet and while it is a bit extreme adapting some of the concepts might help your daughter as people who went on the carnivore diet got remission from depression sometimes...lastly there is a new form of humane magnetic stimulation treatment Transcranial Magnetic Stimulation (TMS) I find aromatherapy helps too..cinnamon or some scents are just invigorating..I think it has a lot to do with the person..and also getting good sleep is the foundation upon which ALL good mental health is based...doterra essential oils have some oil combinations which have helped people with depression and anxiety..best luck to you and your family..I am so sorry you had to deal with Lyme..I had Lyme Encephalitis and went through years of IV treatment..got rid of it
  4. Yesterday
  5. Thanks for sharing your experience, MaryAngela. I wish we had pushed for putting him on antibiotics right away, rather than waiting for the test results. I think we'd become complacent after over two years of no symptoms. I'm going to try to talk with our pediatrician on Monday about trying abx.
  6. Thanks, Cmac. He hasn't been tested for anything else, but I'm going to talk with his pediatrician about other tests on Monday, since it's clear we won't be able to see the PANDAS specialist for a while. He's had a lot of stuffiness over the past couple of months, so I'm also wondering about a sinus infection.
  7. @veronika47 In 2016 a rheumatologist prescribed a high dose Augmentin for my DS based on severe OCD/tics. We started the abx before his labs were back. His strep titers came back normal, but she said ok to continue abx. After 10 days, his symptoms began to rapidly disappear. Could it be that he was still reacting to strep exposure too long ago to show up on titers? Also, she did not test his Mycoplasma titers.
  8. Last week
  9. First of all, I’m really sorry this happened. I’m wondering what else was he tested for besides Strep. Myco p? Lyme? In my son’s case it was both strep and myco p that was causing the symptoms.
  10. Our 17 yo was diagnosed with PANDAS eight years ago after sudden onset of obsessive thoughts and discovery of a previously undiagnosed strep infection. He responded dramatically to antibiotics, with the symptoms receding within 24 hours. He had a few flare-ups with strep infections over the next few years, which were also successfully treated with antibiotics, and he also had occasional smaller increases in symptoms with viral infections that remitted on their own. He's had no symptoms for the past 2 1/2 years, but about 3 weeks ago, he had a sudden onset of obsessive thoughts and anxiety that are very distressing to him. His strep test came back negative as did the blood test for antibodies (ASO, I think??), so our pediatrician does not want to put him on antibiotics. He put him on a low dose of clonazepam in the interim, which helps a bit, but it's not a long-term solution. We are trying to get in to see the PANDAS specialist who diagnosed him, but it will be a while, I think. My question is: Is there any possibility that antibiotics could help if his tests are negative? His symptoms are so much like the symptoms he had with his earlier strep infections, and very different from the blips of anxiety he's had with viral infections, that I'm really afraid we are missing some strep trigger. Our pediatrician is very sympathetic and fairly knowledgeable about PANDAS, so I think he would be open to antibiotic treatment if I could point him to some evidence that it might help. Thank you in advance for any advice and information!
  11. I have received the 70th data set (the goal for this replication study), and of course I couldn't resist checking the results. I was very surprised to find that the main SNP we were trying to replicate (the one related to MS that was unusually common in the pilot study) was not in fact unusual among this newest 70 PANDAS/PANS patients. I will be doing some checks around this, but it should be concluded that that SNP is not associated with PANS or PANDAS. But another SNP, rs2811178 (on the DPYD gene, 97981242T>C) has been shown in this study to have met criteria for statistical significance. That SNP's T allele (which normally has a frequency of about 38% among the mostly European population of the participants) is more common allele than the main allele in the P/P population for which we have data. It is not an "if and only if" genetic variation. Most certainly not everyone with a T allele has PANS or PANDAS (because a lot of the general population has at least 1 T), and there are also plenty with P/P (18% among our data) that do not have a T at all for rs2811178. It is just a risk factor for P/P, that'ss all. The above is a good find, but overall, the result from this study is disappointing for me. Besides a replication, I was hoping for more than just one out of the other 9 we were testing for this study to turn out to be significant. One or 2 of these might have been significant with more data (because they were still a little bit unusual), but I won't be trying to get more data to show that, or to do a replication of this rs2811178 finding. This poor result forces me back to the drawing board, though. I am considering checking the data I have now amassed between the pilot study and this one, for all SNPs called by 23andme. Besides being a tremendous amount of work, there is a significant "penalty" in the analysis for checking so many SNPs, that makes proving significance quite a bit harder, so I will think more about this before embarking on it.
  12. What other antibiotics have you tried? Azithromycin didn’t work for us for myco p either. Biaxcin/Augmentin helped and then Clindamycin and Rifampicin seemed to do it (warning—pretty tough on the stomach). Also it took about a month of being on a new antibiotic each time for us to notice differences. Intrusive thoughts/images were the last thing to go.
  13. Earlier
  14. My kiddos last vaccine was when she was 18 mo old, and she was conservatively vaccinated even then. We only did the vaccines that I was given as child in the 70s. She still has PANDAS and autism. She is also PID (immune deficient), so that may have played a factor in how her body processed those early vaccines.
  15. @bws1565 My DS now 15 had PANS symptoms since he was an infant. He didn’t have MMR until he was 9 or 10 years old. I believe he had a reaction to DTaP at 6 months old, though.
  16. @Robinhubb It’s common for insurance to deny first IVIG request. Is the doctor sending an appeal letter? My DS’s IVIG was approved after peer-to-peer call with insurance physician. It was submitted under Autoimmune Encephalitis code. Also our MD uses Briova (infusion service) for IVIG. They handle the appeal. DS has been getting monthly IVIG for over 2 years. It saved his life.
  17. I need some help. Some direction. So after seeing the new doctor in October and trying azithromycin, which didn’t bring mycoplasma levels down even a smidge after 3 weeks, he switched her to a antibacterial and augmentin. She took it for 21 days and I had her doing Epson baths, probiotics, vit c and watching diet and it only seems like it’s worse. The doctor did put in a order for IVIG and tonight the company called us to let us know bcbs denied it.. I’m so upset the biggest concerns are her hyperactivity because she is scared, her intrusive thoughts, and her ocd in general. Brushing teeth takes about 10 min. She also gets scared about thoughts and throws up a lot any advice on what to tell the dr or ask?
  18. Thank you Chemar. My son tics all the time so I don't think it's anxiety related. We are willing to try it out anyway and see if it helps.
  19. Hi I had never heard of Bowen Therapy for tics, so I looked online for it. Seems from the articles that came up that it is specifically designed for "nervous tics" or "tics caused by anxiety"?
  20. Hi, I was wondering if anyone has tried Bowen Therapy for their tics. If so has it helped in decreasing them? Thanks.
  21. Hi There Has anyone done Cyrex labs testing of Array 7X Neurological Autoimmune Reactivity Screen - Expanded Myelin Basic Protein IgG + IgA Combined Myelin Basic Protein IgM Asialoganglioside IgG + IgA Combined Asialoganglioside IgM Alpha + Beta Tubulin IgG + IgA Combined Alpha + Beta Tubulin IgM Cerebellar IgG + IgA Combined Cerebellar IgM Synapsin IgG + IgA Combined Synapsin IgM Array 20 Blood Brain Barrier Permeability Blood Brain Barrier Protein IgG + IgA combined Blood Brain Barrier Protein IgM Only overlap with Cunningham is the Tublin anti body So am curious about any positives in the other testing Plus has anyone tested for antibodies to the Vagus nerve? Thanks so much, apologies for font sizes even with using the formatting I couldn't get it to correct!
  22. I am thrilled to find this forum. I’ve never met anyone else who counts letters. My family and friends try really hard to understand, but they just can’t. I’m 52 years old and I’ve been aware of my letter/word/syllable counting for 22 years. I don’t know how long ago I started counting - I just can’t remember a time when I didn’t count. My number is 6. When I hear or read, I count the number of words, then syllables, then letters in sentences. If the number of words, syllables, and letters doesn’t equal 6 or a multiple of 6, I have to change the sentence to make everything a multiple of 6 without changing the meaning of the sentence. Like, if the sentence has 5 words and one word is a contraction - i.e. “don’t” - I’ll change “don’t” to the “do not.” Or I’ll find a synonym for a word, like using “yucky” instead of “gross.” I do all of this in my head, kind of in a sing-songy way. And while 6 is my number, I can accept multiples of 3 or 9 if I need to keep reading or listening. I hate the number 4. I have to change any sentence where the number of words/syllables/letters is 4, or a multiple of 4 but not a multiple of 6. I used to work as a proofreader. I started doing it before I was aware of my counting. I’d have to read things 5 - 6 times to count, check grammar, find typos, and understand what I was reading. It was absolutely exhausting.
  23. I just wanted to post a reminder, and also for those who may not know, of the excellent articles and helpful info etc on the ACN Latitudes website. There really is a wealth of information there, and one can also add interactive comments to some of the articles. https://latitudes.org/
  24. OK. I am curious about this. Is there anybody whose child is suffering from PANDAS or related issues and is not vaccinated?
  25. It has been a long road, but I am in the "home stretch" of data collection for this study: I need only 10 more participants to reach the goal of 70 data sets. So, this is an appeal to any of you that have 23andMe data for your PANS or PANDAS child, to consider participating. Also, I am taking the opportunity to link to a good podcast on what has been called the "replication crisis". This genetic study I am doing is partly a replication of an initial result in a pilot study. Successful replication is very important because up until recently, half or more of all peer-review, published studies didn't replicate (which implies, they are wrong in their conclusions). Here is a link to a written transcript of the podcast: https://www.cbc.ca/radio/ideas/psychologists-confront-impossible-finding-triggering-a-revolution-in-the-field-1.5344467 and here is the actual podcast itself if anyone interested prefers listening: http://21393.mc.tritondigital.com/CBC_IDEAS_P/media-session/1cd5524d-881b-45af-b51a-0957b6046af8/ideas-vUWHypta-20191101.mp3 (right click and "save as" to download)
  26. Has anybody had experience with Agape Multivitamins? Seems to have an excellent blend of methylated b's and others. Interested in personal feedback.
  27. @Ashly My DS’s strep titers were normal in Spring of 2016, but Rheumatologist said to try antibiotics anyway. 6 or 7 of his tics went away completely. The 7th went away with IVIG. She said that the abx may have an anti inflammatory property or although there was no recent strep exposure, the misdirected immune response (attacking the brain) never shut off from the last strep exposure.
  28. We did both. ASO as well as swab. Both were negative.
  29. Ashley, when you checked for strep was that titres or just a throat swab?
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