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Everything posted by mama4

  1. My new Pandas rabbit hole is glutamate. I've read the posts on here about it and some recent research. It makes sense that flares could be glutamate storms and that's why NSAIDs (Advil) as glutamate antagonists, can have such an immediate positive effect. We just ran genetic info through Nutrahacker and over and over it says to avoid MSG (glutamate) and to take NAC (as well as other things). Then I looked up glutamate and some interesting info: https://unblindmymind.org The biochemist Katherine Reid reverses her daughters autism with a glutamate-free diet. In some ways it seems like a very restrictive diet, but in the end if you eliminate processed/manufactured foods you can avoid glutamate (even the "natural and organic" foods can contain glutamate). Add glycophosate into the mix (Roundup-use of which has drastically increased in last decade) and it creates a perfect storm. Some have said that the reason a gluten-free diet may work for Pandas kids is really because it reduces glutamate. There is lots of info on glutamate and neuropsychiatric effects. These are just a couple: https://www.ncbi.nlm.nih.gov/pubmed/24636977 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4756530/ Can some experts chime in? Has anyone else done Nutrahacker (or other sites) and found info on MSG etc? How many Pandas kids have this? Would it make sense to try NAC? I've heard some people have a very bad reaction to it.
  2. mama4

    Glutamate and Pandas

    Does this seem like a legitimate test for Glyphosate? https://detoxproject.org/glyphosate-testing-test-yourself/?utm_source=newsletter&utm_medium=email&utm_campaign=test_yourself_for_glyphosate_and_join_the_first_ever_glyphosate_biobank&utm_term=2017-08-09
  3. mama4

    Glutamate and Pandas

    Yes, I read your posts and they were very informative, thank you! It all kind of makes sense and I think it might be worth a try. So hard to get a teen to not eat processed foods...I am so hesitant to try almost any supplements as DS has flared with Fish Oil, Vit D and probiotics (even strep-free ones) and we are supposed to be slowly introducing about 20 of them. I guess we can always give the charcoal is there is a negative reaction. Thanks again.
  4. Has anyone had success with SLIT for seasonal allergies? Is there an advantage to the shots? I've read they might be more effective. The SLIT certainly seems an easier option, but want it to be effective.
  5. Just started on Azithromycin yesterday for Pandas flare from strep exposure. Part of the recent flare was anxiety, obsessional thoughts, moments of confusion. It seems to be a bit worse on the abx. Herx? We are doing detox with lemon water and charcoal which helps with sleep. Upon waking in particular there are moments of derealisation, brief moments of high anxiety, fear of going crazy, confusion. They seem to pass, almost like a seizure, but seem to be more frequent. Does it sound like the Pandas flare worsening, reaction to abx (have read that azithromyckn can have bad psychological effects), or Herx? Could it just be the flare? How would you tell? We don't want to continue if the abx are going to get even worse psych symptoms, but could barrel though if it is a herx. We are starting to suspect Lyme coinfections are Involved. I've read the herxes from that can be similar. Had sort of the same effect from amox-severe insomnia, anxiety. Would really love thoughts, thank you!!
  6. An update, things seemed to have settled down. Two Activated Charcoal caps before bed seem to completely stop the nightmares and finally getting good sleep. Maybe just getting used to the abx or no longer flaring, not sure, but the 2 caps before bed can't hurt.
  7. Thank you! Yes, this time ibuprofen didn't do the trick. Even the probiotic was problematic. Will try your suggestion.
  8. can I PM you?

  9. Thank you so much for responding. I agree it looks like a herx. This is day 4 after 3 doses and the extreme anxiety accompanied by facial tics come and go through out the day. Like mimi flares-almost like anxiety seizures. Sometimes there are long stretches in a day with no mini flares. Tried charcoal and had nightmares, but not like the awful ones which won't let you sleep at all. II hope to just the strep herx and we will be done with it and not to some other underlying infection. I think we have some gut issues and methylation issues, but it all seems overwhelming right now and I hate to start trying something new when I don't know if the reaction will be from the flare or the treatment. We are worried about the gut as a couple of different probiotics have caused an immediate exacerbation. Not sure how to protect the gut.
  10. I want to make sure everyone gets this link to the Discover article "Hidden Invaders" on PANDAS. Someone posted about the article on this forum and now Discover has posted it online so it's easy to share. http://discovermagazine.com/2017/april-2017/hidden-invaders#.WQsk069P1mI.email
  11. mama4

    PANDAS in Discover Magazine

    Here is Discover article online: http://discovermagazine.com/2017/april-2017/hidden-invaders#.WQsk069P1mI.email
  12. Turns out it was not rheumatic fever. I am starting to suspect it was a herx reaction as the same thing happened years ago right after getting strep. Luckily my ASO titers went down and the infection seems to have cleared, no more of the vivid dreams etc. Dr. said the rash may be lymes though. No other symptoms though. Anyway, now I realize that odd reactions to strep must run in the family...
  13. Hi, I had strep and had to go off antibiotics for an allergic reaction after 2 days. Then 2 days later had anxiety, vivid dreams, severe insomnia which sort of resolved after a couple of days (I attributed this to the antibiotic, but maybe it was the strep? A PANDAS-like reaction?) Was then tested twice over next two weeks and throat culture was negative. Now, 5 weeks after the initial infection- anxiety, insomnia has returned along with and an odd rash. The rash usually comes at night, between both knees, warm to the touch, red burning patches, which gradually fade and then turn into a few small raised white bumps with a red pinpoint in the middle. Am worried that this might be the start of rheumatic fever and we didn't get rid of the strep fully. Does rheumatic fever work that way? I thought you had to have a fever, full body rash etc. I know rheumatic fever is very rare in adults. Could it be hormones? Menopause related ( am 51 now)? The only other physical symptom are hot flashes and slightly swollen adenoids for the past month with postnasal drip which is fading now. I don't have any joint pain or any of the other RF symptoms. I just made the connection that the same thing happened years ago when I was about 35 (the last time I had strep, but without the rash). Am seeing the Dr tomorrow eve, but would love to hear any thoughts.
  14. mama4

    Dr Kenneth Bock?

    Yes, we have seen him and I would recommend him. We started on a series of supplements with him. There are a lot of supplements which can be overwhelming, but they all seem pretty benign. His lab offers the supplements, but they are VERY clear that you can get them wherever you want and are under no obligation to buy form his store. I feel more comfortable giving my DS supplements under a traditionally-trained MD. All was going very well, but we have had some issues with allergies this season. An air purifier seems to be helping. Dr. Bock seems brilliant and very knowledgable about PANDAS/PANS and runs a lot of labs for infections, allergies etc. (which I think is good). I get the sense that he digs deep and tries to find the root cause versus just offering band aids. I liked his book on allergies, ADHD, autism-presented as types of autoimmune disorders. If you see him, please let us know how it goes for you. Good luck!
  15. mama4

    anyone had PANS from hookworm?

    Hi, I wanted to see if you had any updates with the use of hookworms? I was just listening to a Radiolab podcast where they talk about its uses for allergies and other autoimmune diseases like MS. For anyone who is are interested the part on hookworms starts at 00:32:30: http://www.radiolab.org/story/91689-parasites/ Do you know if there are any new studies out on this? I wonder how many people have used it specifically for Pandas. Thanks! Here is a webinar from the Autism Research Institute. It includes information on many conditions: http://ariconference.com/?p=1766
  16. HI, I just saw this. I think things are better. We are trying lots of supplements. We tried a probiotic with our strep in it. It is really hard to say if this helped or if it was the abx. It seemed to help with the OCD and tics. Another thing we are using is the Inositol. Apparently this is good for OCD. Magnesium is also supposed to help. I am not a Dr., so I would ask your doctor if this is safe/would be useful. Good luck!
  17. As all the other 12th graders are busy applying to colleges and writing essays about all the wonderful things they have done in high school, we are trying to solve this medical crisis called PANDAS (PANS). We think DS has been dealing with this for years with ADHD and Anxiety and only last spring has had obvious PANS symptoms-severe OCD and tics. He has been on two courses of abx and is now on a probiotic which seems to be helping. Problem is the executive function and ADHD are still very much there. He can do no independent work. None. He has barely made it through HS and has required lots of scaffolding and doesn't even take care of his basic hygiene needs. His GPA is abysmal and SAT are mediocre, but he is a very bright and curious kid-an intellectual and can discuss anything, has a great long term memory, but, again, zero Exec Function skills. He has isolated himself, has no friends and only wants to be online. Family members are pressuring us to send him off to college. At this point only a local community college would accept him with his record/scores. Even if he does get into a college, it doesn't seem like the right time to send him off. I think because PANS has neuropsychiatric symptoms it is not taken as seriously. They say he needs a change of scenery to become independent. But would you do that to a kid who is battling some physical illness? Are there schools (in NY or nearby NYC) that can work with a kid who is in a PANDAS flare and know how to deal with it? Maybe a postgraduate boarding school program for special needs? Anyone know of any? I've been told to look for a educational consultant. Can someone recommend one in NYC who gets Pandas? I know this depends on the kid and where they are in their treatment/recovery, but I would love some advice. Friends who don't know say I am having a problem letting him go. Little do they know that I would love nothing more than to have a kid who could live independently! But even those who know are pressuring us. I worry the stress from heading off to college will trigger the worst kind of flare and he will be sent home defeated. We are going ahead and applying to some local schools. My plan is to apply to these and then if he is miraculously better next fall, allow him to live in a dorm and take classes. Another option would be a gap year, but what kind of gap year program would be able to handle a Pandas kid? Any advice is greatly appreciated.
  18. Has anyone had success with helminthic therapy? It is the use of parasites or worms to treat autoimmune disorders. There seems to be some interesting articles about this. When I looked back over old posts in the forum, it seemed like some people were having some success with this. http://www.nytimes.com/2016/06/19/magazine/the-parasite-underground.html http://www.sciencealert.com/scientists-think-parasitic-worms-could-be-the-key-to-treating-multiple-sclerosis http://discovermagazine.com/2015/july-aug/4-take-worms-call-me https://www.sciencedaily.com/releases/2014/08/140811125126.htm
  19. mama4

    Autism Maybe PANS

    Someone was just posting over in the Pandas/Pans forum that Sue Swedo (at the Pandas Conference) said the often shared characteristics of autism and Pandas are encephalitic. Some PANDAS kids have autistic characteristics, but not an autism dx. I think it is a route worth exploring for kids with autism as well as kids with any serious psychiatric problems like severe anxiety, depression, bipolar etc. I am glad that the autistic and Pandas groups are sharing info on this. I wonder if research is going to show an encephalitic/autoimmune connection for at least some cases of autism. I wish someone would study kids with autism who go on antibiotics and do better. Maybe they already have. Does anyone know?
  20. Yes! This is spot on. It is so hard for these kids (and parents) to have a mystery dx. At least now we know it is PANDAS and have an explanation. It is a relief in a way. In her book Infectious Madness, Harriet Washington discusses Pandas and asks whether parents are just looking for a biological explanation for their kids' psychiatric issues (because of the stigma). She seems to conclude that that is not the case and that Pandas is real. You can see why the autism community is interested in Pandas. The encephalitic/autoimmune connection between the two is a clue. Also the fact that some kids have lost their dx for autism when treated for Pandas is very telling. I would love to see some data on this-how many kids who were dx'ed with ADHD or an autism spectrum disorders were able to lose the dx after treatment.
  21. I am sorry you are suffering. I hope someone else will respond who knows more about this. We had luck with Augmentin (and probiotics) for OCD and tics-hope it holds. Are you seeing a Pandas/Pans specialist? And thank you for the advice-I appreciate it!
  22. Just in support of Suzanne's note, my DS's college actually has a disability program specifically geared toward Asperger's students (at an engineering school -- can you imagine!?! ) In addition to appropriate accommodations, they will set up a peer mentor system so that the kids don't isolate, get behind in coursework, etc. And this is a "regular" 4-year, private university. So these supportive set-ups DO exist, even if they may be somewhat unique. Thank you. I wonder whether we would be one of those stories where the kid has the neuroinflammation treated and they lose the ADHD, EF and borderline autism issues. Wishful thinking! He puzzles the experts-the neuropsychologist said not autism, but said severe ADHD can mimic some of the features of autism-like social skills issues. They sort of come and go. Either way, he needs the scaffolding. I will start talking to some colleges. I think the fact that some kids lose their ADHD autism diagnosis when their PANDAS/PANS is treated is very telling. I tend to agree with the theory that ADHD and autism are on some level an autoimmune diseases. Maybe not all cases, but certainly some. I just don't want to get my hopes up that treating PANS would solve his other issues. Thank so the advice!
  23. Yes, I have always considered autism. The social issues were a red flag from the beginning. He has had three educational psych evaluations, one recent neuropsych eval and although he does have some features of autism, no one has said autism. He has the social issues, transition issues, rigidity, but not any of the others. After reading Ken Bock's book, I wonder whether the neuroinflammation is causing some ADHD and autistic features which put him somewhere on the spectrum between ADHD and PDD-NOS (although he is very verbal). This has always been our problem, he is a mystery. We have friends with aspergers kids and they do really well in the special needs camps etc, my son would pick up on it and say "that's not me." But maybe a place where the kids have ADHD? This was his last diagnosis as the lack of social skills can be a part of that too. Oddly sometimes he has amazing social skills, but he tends to space out and lose track of where he is. I swear it is the inflamed brain! I will look into the programs and thanks for the advice!
  24. Thanks for the excellent advice. My DS's symptoms started at that age too, but we had no idea what it was. We were told just anxiety, but in retrospect I see that it was the beginning of PANS. I think Dr. K at the conference mentioned this is often how it manifests in teens. We haven't tried zinc. That is next in the treatment plan given to us by the integrative MD. I am really hoping it works! Interesting that this helped with the attention issues. Your story sounds great and I hope we can get this under control. I worry we waited too long to get diagnosed. I so appreciate your advice!