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  1. So after reading llm's post about the antibiotic that can remove excess glutamate, I am even more confused about the whole glutamate/GABA thing. I had been thinking about GABA supplements for DS because GABA is calming and his PANDAS symptoms are fairly large/prolonged motor tics and vocal tics. But now I have read that GABA and glutamate and glutamine all get converted to one another, so giving a GABA supplement wouldn't do much if it just gets converted into glutamate anyway?? Is it better to try l-theanine instead? I have read that it gets converted into calming substances such as GABA. I'm interested to hear if anyone has tried these, with success or not. Thanks!
  2. All the success stories and info about magnesium and diet changes are so incredibly helpful. Would you please let us newbies know approximately how long before you saw results with these regimens? Understanding every child is different, it would be so helpful to have a gauge of some kind. Also, did tics decrease then increase at times? I would expect that is to be expected. Thank you.
  3. I went to a support group for woman with children that have health issues. They discussed that Round-UP and GMO's not only chelate magnesium creating deficiencies but also zinc and believe that zinc supports strong sperm and there may be a link to lower zinc and difficulty conceiving. Isn't low zinc implicated in Anorexia and OCD? What are your thoughts? Our Dr doesn't supplement. I understand he has seen benefits and harm just like some here have both positive and negative reactions. I am sure it needs to be based on your 23 and me but thought I would ask.
  4. I am really needing some advice specific to my DD situation. 12-year old about 85 pounds. TS with eye blinking, facial grimaces and vocal tongue-clicking tics. Started about a week ago on Kids Calm and Elderberry as a result of success stories seen on this forum. Also bought Natural Calm because KidsCalm is only 240 mg of Magnesium and Natural Calm (for adults) is 325. My thinking is that she is almost adult sized I would add 1 tsp of Natural Calm to Kids Calm to up the magnesium. Also bought Taurine which I am planning to add to the mix today. After almost a week I do see a slight improvement. Here's my questions - Do you think my plan is a good one for her weight and age? Can I give her more in a day? Have seen that it's OK to give more per day until you see that the stools are getting too loose. I am totally willing to try that but not sure if it is safe. Does anyone else have experience with Elderberry? Wondering if this is helping. Started both Kids Calm and Elderberry at same time. We have autoimmune issues so I thought it would help. Any thoughts on the Taurine? Does not seem to be included in KC or NC, yet I read it is important to properly absorb the Magnesium. Also had her on Nordic Naturals Omega 3 but stopped because Omega 3 is in the Kids Calm. Seeing a nutritionist this week, but wanted to get perspective from this forum too. Any advice would be greatly appreciated! Thank you all and thank you for this excellent, life-saving forum.
  5. Hello - does anyone know of any tic/TS support groups for kids in the northern NJ area? My DD is 12 and I think a support group could really help her. Anyone have a child around that age who would be interested in emailing with her? She is really into theater and singing, which strangely enough seems to calm her tics signifcantly.
  6. Hello Friends, There is no time or energy to revisit our 4 year history on all the things we have done up to this point. We do know that we have moved from plain ol' PANDAS to PANS for the last year. Our DS14 is doing very well compared to the overnight dysfunction 4 years ago. I was thinking about ordering 23 and me as our next step. DS14 still has OCD, ADD, and also added vocal tics last year with the lovely Coxsackie Virus. His OCD and ADD used to be a 10 on a scale of 1-10, but seems to be manageable at a 2 or 3. So, life is manageable for him and no longer torturous. The tics seem to be getting worse. Here are a few things that stand out: He is never cold and sweats as if he has just climbed out of a pool (NOT exaggerating) Excessive sweat Excessive heat Excessive ear wax Excessive bowl movements (3-4 times a day, but not diarea) His vocal tics seem to be worse during a full moon. He has been tested 3 times for Lyme and yes, with Igenex. He was bitten by a tick 5 years ago and I still have that lingering suspicion. But when all the tests come back negative for Lyme.....could it be a false negative from being on antibiotics? I am suspicious of some type of parasite but he has been tested in the past. Not sure what I should be asking the doctor to test for next. I am going to ask about glutamate as well. Thanks in advance, Linda
  7. Hi I have a 7 year old. Last year in November, he developed some vocal tics. These eventually evolved into coprolalia. He was put on guanfacine, zolofot and risperdal. That improved things and the only thing that remained were some grimaces. In an attempt to eliminate his tics and move away from these powerful drugs, we've tried a whole bunch of alternative treatements and dietary changes. - put him on a gluten free, dairy free, reduced sugar diet. - We have him on a bunch of supplements - Ca, Magnesium, Methionine,etc. - for a while, he was on a very strict, candida free diet and diflucan and probiotics Given that all of the above did not get rid of his grimaces, our suspicion turned to PANDAS. We spoke to a Pandas specialist and now have him on a dose of antibiotics with a steriod (prednisone). Three days into this treatment, we noticed a significant change in his behavior - a lot of rage and frustration. After about 5 days, we also noticed that his vocal tic had started to come back. Today is the 6th day, we've stopped prednison (after reading online that it is a significant tic triger). His grimaces are much reduced but his vocal tic is back and we are besides ourselves. The nightmare has returned.How long till Prednisone is flushed out of my son's system? And will his tics subside (or are they now at a "new normal")? Has anyone experienced the above before? Are his vocal tics really prednisone or just a herx reaction - is this just a strep die-off?Could his tics be the antibiotics?I've read that TS is usually inherited and there is no neurological conditions that exist in our family - or even the extended family...so if this is TS then it is extremely strange...any thoughts on this? I forgot to add that we did Lyme testing through IGeneX. Here is what we got... IGenex TES : NEGATIVE CDC / NYS TEST: NEGATIVE 18 KdA -- **23-25 kDa -- 28 kDa -- 30 kDa -- **31 kDa IND ** 34 kDa -- ** 39 kDa IND **41 kDa ++ 45 kDa -- 58 kDa + 66 kDa -- ** 83-93 kDa -- Does this indicate Lyme? Is it possible that his tics are also worse because of die-off (herx) reaction? Your help and advice is much appreciated.
  8. Hi Everyone. So glad I found this forum. My son's first tic started when he was around 5 - he is 9 now. There are many contributing factors that could have triggered the onset. We suffered from longterm exposure to carbon monoxide and after 7 mos. of the exposure - right before we found out we were being poisoned - his tic started. He also had swine flu and tamiflu months before...so who knows..it was all too much on him. We've both suffered lifelong damages from the exposure - but it's too much to explain here. His tics used to happen every 6 mos. in the beginning after the first one - last a couple weeks and be gone for about 6 mos. I had no idea what they were - involved blinking eyes and making a face with the eyes involved, then breathing, inhaling noises, coughing, throat clearing, squeezing his hands and flinging his head back (the worst one he's had) - or a combination of that and some other upper body movements were his worst. He has also had Strep and I often wonder about PANDAS. I have tried a lot of different things. I've been writing down everything as things change with him - to keep an eye on what's working or not - and what's triggering if possible. A few months ago my friend told me about Elderberry syrup. I bought some - take a teaspoon with a couple tablespoons of grape juice (tastes great if you make it yourself) supposed to be extremely strong immune system booster - used in other countries as a replacement for antibiotics and to treat illness, chronic fatigue, fibromayalgia, etc. I could go on and on. There have been studies on it also - you can look it up. We have been taking a teaspoon or two (or three if getting sick) every day for the last couple of months. I noticed his tics waned down to almost nothing - just a little hand tic when reading or stressed out, etc. Then I had us stop taking the elderberry syrup for a week as we had stomach problems and for some reason I thought it might be linked to it (I had just made my first batch of elderberry syrup from dried elderberries and it was around the same time we got stomach problems which developed). During that week with no elderberry, a new tic developed with him making a strange face and sometimes licking his lips and doing something with his nose. After that week I started giving him (and myself) the elderberry syrup again as usual as we started having some other issues with a cold developing. I realized the elderberry syrup did not cause us any stomach problems. Since I started him up again the tic is completely gone and has stayed gone - he has had no tics that I've seen for the past few weeks or a month maybe. This is a huge huge deal as I have tried all the vitamins, magnesium, supplements, etc. and they haven't done anything noticeable. I will update if anything changes...OH by the way - the tics that he has had over the past 8 months or so have been consistent and nonstop everyday - something happening with them. It has been the LONGEST stretch of nonstop tics as when he first started having tics they would only last a couple weeks and go away for about 6 months. If anyone else tries this - please let us know the results..I would love to know if it helps others!!!!! If you want a recipe to make it yourself, I can give you a link to the recipe. Or else you can buy it from a natural health store, organic store, but some brands have a lot of alcohol in them to preserve them and the taste isn't the best. Depends on the brand anyway. ...So far - the past month to two months - nearly no tics - lately I just give him 1 teaspoon a day. All the normal triggers for him are not triggering them as of now. I am really happy for that. Take care everyone! (Also - since doing this with the elderberry syrup - I haven't been giving him anything more than a regular vitamin and sometimes forget also)
  9. Hi - my 12-year old daughter has PANS, I believe. Seeing PANS/PANDAS neurologist in northern NJ. Very elevated titers for myco (1400) and slightly for strep. Treating with Amoxicillin AND Zithromax. Has tics which may have actually increased since being on antibiotics (only about 9 days though). She will not take pills, tried Biaxin liquid but will not tolerate so switched to Zithro. Also has increased anxiety and has had one rage since on meds. Used to take Omega3 (Nordic Naturals with DHA for kids) , then stopped, and recently started again. Taking probiotic too. Her diet is GF and mostly dairy free but she is a picky eater and so has a lot of carbs. Trying to get her off sugar and carbs but taking the meds is easier when she has something sweet (nutella is her favorite chaser, also soy choc milk mixed with plain almond milk). Questions: Does anyone have any ideas/thoughts on antibiotics she is taking? Seen an increase in tics/anxiety/rages on these drugs? Read some kids have increased tics with Omega3 - maybe stop that? Any luck with steroids? Does anyone report ANY relief from just doing nothing - no meds, no discussion, just ignoring tics? All my daughter's anxieties and tics got 10x worse once I actually started looking into it and treating it. Started therapy. But scared to not treat myco and strep after reading Saving Sammy and online info. Any advice would be so helpful. Thank you. Bless you all for this forum and for your information.
  10. My 9 year old son woke up complaining of serious neck pain. Within a few hours he developed a neck tick followed by eye roll.. He has suffered from various tics for years. Has had neck tics in the past. I'm wondering if the neck pain triggered the recent neck tic or the tics triggered the neck pain. I'm hoping when pain subsides the tics will wane.
  11. My ds 15 had a bad bout with Flu B last week --- very high fever, body aches, etc. Took Tamiflu, and is now left with a chesty cough. Oddly enough, his Pandas symptoms were not bad during the flu week...tics decreased, OCD, anxiety, and ADHD symptoms were all surprisingly decreased. Two days ago, however, the Pandas symptoms came back with a vengeance. Tics, OCD, anxiety, hyperactivity are worse than they've been in a long time. He also has a red, dotted rash on his face (we think this rash--which we've seen on his trunk before-- is yeast related). AND, he is finding it hard to make eye contact-- he has never mentioned this symptom to me before. He has consistently been on antibiotics, and he has ongoing mycoplasma. Any help would be greatly appreciated. Thank you.
  12. This is the most IMPORTANT INFO I have learned in the last 7 years! MIT PhD Stephanie Seneff talks about the pathways that works with our genes creating Autism, learning disabilities, Alzheimer's, autoimmune disorders, cancer, diabetes, heart disease, obesity and our epidemic of vitamin D deficiency. Only available today. Make time to listen.... For yourself and those you love. Peggy http://gmosummit.org/broadcasts/
  13. hi all, I am new to the group, my son is 13, original autism diagnosis,then lyme and coinfections then PANS/encephalitis. This past 6 months have been for him and our family and nothing that has previously pulled him out of a flair is working. I am desperately trying to get him IVIG and find the right protocol. Have apt at Stanford in a few days, wondering if anyone can recommend a good doc in California or have experience with getting ivig with Stanford immunology dept? thank you deborah
  14. Hello, we just did our first HD IVIG. Our main issues are tics and intrusive thoughts. For those who have done IVIG, if it is going to help, how long before you see any results? Especially interested in knowing if you've seen help in reduction or elimination of tics. Thank you!!
  15. Hello. My dd is finally scheduled for her first IVIG this week after 11 months of waiting. As we near the date, her symptoms are exploding - tics and intrusive thoughts. She doesn't seem to be sick so I don't think she has caught anything. Best I can guess is that she is just super anxious about IVIG. I was wondering if anyone else has seen this in their kids before? Thanks in advance -
  16. Hello, We are hoping to find a doctor in the Midwest area who can offer extensive testing to treat our son’s symptoms. We would like a doctor not afraid to try a long course of antibiotics, as we suspect it may be related to a case of strep. A brief history; two years ago our, then, 13 year old son suddenly started showing symptoms such as “soft” ticks (not jerking, but squirming, repetitive body movements such as turning his head with his eyes rolled up numerous times. When he sees us looking at him, he “snaps” out of it), he frequently reaches several times to grab things before actually getting hold of it or trying to get up out of a chair step a few times before actually going, and also a real struggle with homework. Up until then, he’s been an excellent student. He’s also had some instances of ‘brain fog’, and some more. Since then the symptoms have cycled up and down, and for periods of time he has sometimes shown no symptoms. We’ve gotten blood & strep tests, MRI & psych testing. One dr. says tics (and says if they don’t disrupt his life, don’t worry about them), another Dr. says ADHD, & another mentioned OCD. The strep test showed slightly elevated Dnase titers, but were back in the normal range when tested 3 months later so the Dr. advised no treatment. There are no cases of anything like this in our family [history]. Nor did our son ever have a diagnosis of strep throat. The symptoms are on the rise again & the “soft” tics & periods of brain fog. Needless to say we are very concerned ... Thank you …
  17. Hi So we know about Yasko's book and the Web site but were wondering if anybody here knows Of a Dr. who is a methylation expert. Many thanks for sharing.
  18. Hi Our son has tics that we are now trying to eliminate with antibiotics. We are working with Dr. T. I am writing because we are puzzled about his tic triggers. He is fine mostly but when he sits down to eat or brushes his teeth, his tics come back. When he sits down to eat, he starts to grimace and his vocal tics (repeated random word utterances) come back. When he brushes his teeth, his vocal tics come back. Otherwise he seems to be doing better. As these are triggered by some actions - like eating and brushing - I am wondering if Dr. Stacks (VA) work is worth looking into. DS is on Augmentin, Zithromycin and anti virals. Hope any one of you here can help me with this puzzling behavior. Many thanks Nitshel
  19. My 10 y/o son had strep Nov 2012 and was diagnosed with Pandas in April 2013 after severe mood swings, depression, irritability and aggression started. He also has anxiety and Aspergers. Waiting for Lyme testing results. We treated with zith and penicillin for the pandas and also did a course of Flagyl for clostridia. Titers were at 1140...trending down but only at 1080 now. All of his symptoms are much better. The only tic he has is a vocal humming he makes when he watches tv or plays on the computer. Is that normal to have a tic only at a certain time? Dr suggested we try Augmentin but not sure I want to give him another antibiotic. Also, dr started him on Diflucan since he's been on so many antibiotics. Can the Diflucan cause diarrhea?
  20. Hi We are battling a sons tics - getting all sorts of tests done - looking at Lyme, coxsackie, myco etc. While we will do everything in our power, I just need some assurance that this has worked for some people - that there are others who have put their children through all kinds of ABX medications, anti vitals etc and achieved success. I realize only folks who are still struggling stay on in the forums but I am hoping you have heard of success and that there are some of you who have achieved it. Just need to hear of some happy endings!
  21. Hi I have a 7 year old. Last year in November, he developed some vocal tics. These eventually evolved into coprolalia. He was put on guanfacine, zolofot and risperdal. Ever since, he has been much better and the only thnig that remained were some grimaces. In an attempt to eliminate his tics and move away from these powerful drugs, we've tried a whole bunch of alternative treatements and dietary changes. - put him on a gluten free, dairy free, reduced sugar diet. - We have him on a bunch of supplements - Ca, Magnesium, Methionine,etc. - for a while, he was on a very strict, candida free diet and diflucan and probiotics Given that all of the above did not get rid of his grimaces, our suspicion turned to PANDAS. We spoke to a Pandas specialist and now have him on a dose of antibiotics with a steriod (prednisone). Three days into this treatment, we noticed a significant change in his behavior - a lot of rage and frustration. After about 5 days, we also noticed that his vocal tic had started to come back. Today is the 6th day, we've stopped prednison (after reading online that it is a significant tic triger). His grimaces are much reduced but his vocal tic is back and we are besides ourselves. The nightmare has returned. Has anyone experienced the above before? Are his vocal tics really prednisone or just a herx reaction - is this just a strep die-off?Could his tics be the antibiotics? Your help and advice is much appreciated.
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