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  1. Hi I have been asked to post our treatment protocol a number of times here and by emails so I have finally put it together in what I hope is a simple summary for anyone who needs more info on it. Although I have a background in Medical Research, with a postgrad degree in Physiology I am not a physician...this is the program that worked for my son, and and I must stress that we were at all times guided by a team of knowledgeable doctors. I urge everyone to work with a qualified physician! PLEASE NOTE! this post was originally written in 2004, and so has been updated with current information in the later posts of this thread Hope this answers your question...feel free to contact me if you need more details -------------------------------------------------------------------------- FIRST: I need to clarify that my son has genetically inherited Tourette Syndrome, and that my husband and his father before also manifest TS etc My son uses mainly supplements (vitamins, minerals, herbs and certain amino acids) and healthy diet as his "treatments" He was on prescription meds for a year, but had very bad side effects, and not much improvement in tics as well as a worsening of his OCD etc. His natural treatment plan was enhanced by detoxification from heavy metals (in his case mercury, and chlorella supplement was used followed at the end by alpha lipoic acid)) and also controlling yeast overgrowth(candida) in his digestive tract. (we initially used caprylate by Solgar but then found Candida Clear by NOW to be most effective) We also found that artificial foods were big tic triggers for him (coloring, sweeteners like Nutrasweet ie aspartame and Splenda ie sucralose, MSG ( beware its hidden names in food...!!), chemical preservatives and high fructose corn syrup) We ran allergy tests and did a process of food elimination, but he doesnt have any natural food allergies per se, only mild p-nut sensitivity so we avoid those. For some folks tho, things like dairy, wheat(gluten) etc can be allergens and so intensify tics, OCD etc My son was also able to identify other tic triggers that he has such as chlorine (he avoids pools now) and dustmite, mold etc and also most strong smells like in perfumes, and some household cleaners, air fresheners etc (some of this is probably related to his hypersensitivity to sensory things..ie taste, smell, touch, sight and sounds) Occupational therapy [/b] made a big improvement in his sensory issues from the Sensory Integration Dysfunction that so many folks with TS etc seem to have....tho he still removes all labels from inside clothing and wears his sox inside out as the seams drive him nuts There is an excellent article here at Latitudes on Tic Triggers http://latitudes.org...ng_triggers.htm Acupuncture has greatly benefited him too, as has reflexology and biofeedback (NOT neurofeedback) In addition he sees a NUCCA chiropractor who uses gentle pressure methods to help reallign him as ticcing frequently causes skeletal misalignment with resultant neuromuscular problems which cause pain and can even trigger more tics too! ( http://www.nucca.org ) He also had Cognitive Behavioural Therapy for the OCD, and occupational therapy helped with many of his Sensory Integration issues In addition we tested for PANDAs (strep negative) and Pyroluria (not an issue) as these can also be conditions that exacerbate tics, OCD etc We saw an INTEGRATIVE medical doctor (trained conventionally, but specialised in natural medicine) and she and her team worked together on my son's treatment and testing The OCD, depression, anxiety and other mood issues were always the most troubling for him, and the improvement that the supplements like primarily 5HTP & Inositol have made there are remarkable! (It is not a good idea to mix some of these with meds tho, so do note that!) I based the rest of his supplements on Bonnie Grimaldi's researched plan for her child. http://www.oocities.org/torcha.geo/ts_main_bonnie_sup.html She now has her own products, BonTech on the market which many people use with great success for tics ( www.BonnieGr.com ) but I still use the combinations that I initially implemented for my son, based on Bonnie's protocol but fine tuned to suit my son's specific needs, under guidance from a physician, as it WORKS and so I am reluctant to change anything. ------------------------------------------------------------------------------------------------------------------------------------------ Here is our program * multivitamin/mineral (the multi has all the good antioxidants,and other RDA supplements and is high in the B group vits, and I add an extra B1 ( IMPORTANT NO COLOR, FLAVOR OR FILLER IN THE MULTI!! ) * combo essential fatty acid supp containing flaxseed, borage and evening primrose oil ( My son is sensitive to fishoil, as some people are, but if you tolerate it, it is good to also use that) * Lecithin * Royal Jelly * ginko biloba(for ADD) * Inositol (for OCD & tics) * St Johns Wort (for OCD) * Vitamin B12 as METHYL cobalamin * P-5-P (vit B6) in the evening he gets * 5HTP (for OCD) (please note 5HTP can have bad side effects in some people so use with caution! and NEVER with medications that elevate serotonin!!) * Methionine (for OCD) (some people prefer samE) * calcium/magnesium/zinc combo( magnesium = main tic reducer) * taurine (main tic reducer) * GrapeSeed PLUS extract Boosts immune system and seems to also promote restful sleep. The blend I use also contains Bilberry for his vision as well as other essential antioxidants) --------------------------------------------------------------------------------------------------------------------------------------------- When he is run down he also gets co-enzyme Q, and if we notice anxiety up I add GABA for short periods) He used to take L-carnitine, which many folks find very beneficial especially for vocal tic reduction, and relaxation, but lately he seems to get edgy from it so we discontinued it. The doseage of the supps depends on age and body weight so I have not included it here I stress again,ESPECIALLY if you are ON MEDS, it is a good idea to talk to a physician before adding or combining some of these supplements as interactions can occur which can be serious. Here is an excellent site for reading up on the various supps etc http://www.iherb.com/health.html ----------------------------------------------------------------------------------------------------------- I should also mention that when my son began his natural treatments, he had tested +ve for epstein barr virus, tho without mononucleosis. We therefore adopted a homeopathic and herbal/supplement/diet regimin as antimicrobial Things like monolaurin(lauric acid from coconuts) olive leaf extract, and cooking with garlic, ginger, turmeric, plus the candida Clear (which has oregano oil, wormwood, pau d'arco and other antimicrobials in it) Extra Virgin Coconut Oil (we like Nutiva) is also excellent uncooked, and drizzled over food. The probiotics we use are natural Lifeway kefir and Stoneyfield Farms Plain Organic Yoghurt L-lysine is also a good supp to prevent viral outbreaks information overload???? I will be happy to answer any questions! ------------------------------------------------------------------------------------------------------------------------------------------- EDITED TO ADD: Certain of my son's tics were clearly interlinked with his OCD, and this was especially so with injurious ones. The psychiatrist who was working with him at the time educated us about this interaction between OCD and Tourettes (Tourettic OCD), and also about ENDORPHINS, the "feel good" chemicals naturally secreted by our brains when we experience pain. Sometimes repetitive injurious "tics" can be stimulating endorphins and so the patient keeps doing them because of this natural high. the amino acid phenylalanine, in its D form, promotes endorphin release and my son was on this for a while. It totally stopped these self injurious "tics" It isnt easy to find D-phenylalanine, but the DL-phenylalanine is more widely available. Please note that where just the L form helps with depression, it is the D form that is needed for the endorphin release. A very good way to also increase endorphins is moderate excercise. I should also point out that *some people may tic more from phenylalanine* as it is dopaminergic. This was not so for my son for the short time that he used it, but it needs to be noted. Also wanted to mention the tremendous benefit my son has from EPSOM SALTS tubs. The magnesium sulfate in the salts seems to have good results on tics, detox and relaxation. He has one most evenings. 2 cups epsom salts in a tub of warm water and approx 20 min soak. He drinks lots of pure water, or chamomille tea while in tub too. Epsom foot baths are good too! as is soaking a washcloth in strong epsom solution and apply to areas where tics happening most. Epsom cream also helps. (1.2 tbsp salts, saucer hot water. dissolve and mix into 1/4 cup aquaphor cream) Morton Salt has a very good Epsom lotion ----------------------------------------------------------------------------------------------------------------
  2. Anybody used or have any thought on using GABA ? My son is nearly 13 and has constant lip smacking noises at the moment and I mean constant, every second and loud. We have had one kinesiology session and amongst other supplements she has suggested GABA? Any comments would be appreciated thank you.
  3. First let me introduce myself, call me Juls. I'm a homeschooling mom of three. My middle child began with verbal tics when he was 5 years old. He is now 8 and suffers from verbal tics, motor tics, ADHD, mild SID and what I call "stuckness" (probably some form of OCD but it is awful!). I've been lurking on this forum for a few months and I wanted to thank everyone, especially Chemar, for such fabulous information. I learned of L-Carnitine from a post here and tried it with my son back in January. Overnight we saw a huge reduction in his verbal tics and in a few days all of his tics had disappeared. It was unbelievable! In mid-March my dear son decided to ditch all his suppliments down the heating vents for a few days and low and behold the tics came back and I discovered the problem. He's learned that lesson fortunately. I had hoped that starting his supplements back up would stop the tics and when it didn't I began thinking about what had changed between the first time he took L-carnitine and the second. All I could pinpoint was that in Jan I also began giving him 1000mg of vitamin C and I had run out of the vitamin C around the time he hid his supplements. I hadn't bothered to buy more. After two weeks of increased tics I added vitamin C back to his daily regiment and the tics have just about disappeared again. My son is currently taking: a multi-vitamin (I look for one with no copper) fish oil (2 capsuls) Calcium/Magnesium/Zinc (all in one but 3 caplets for the full dose) Chewable Vitamin C 500 mg (1-3 a day, he takes this like candy) Taurine 1000mg (1 capsule) Acetyl-L Carnitine 500mg (1 capsule) Gaba-plus (4 capsules) Super B-complex (1 capsule) Sam-e (1 tablet) Melatonin 1mg (1 tablet before bed for sleeping- it's made a big difference for him to sleep well) Now that the tics are almost gone again, I am back to focusing on his "stuckness." This really rules him at times. He is often stuck wanting a toy that is impossible to obtain or something that I can't change. Nothing can get his mind off of the thing he wants or doesn't want. Today he could not do his Vision therapy because he didn't like a woman that was in the room (he hadn't even met her he just decided he didn't want her to be there). He was so stuck he wouldn't comply with anything and we had to reschedule. But then he got stuck about leaving. He wouldn't leave the office and he wouldn't do the therapy! I can't carry a 90lb 8 yr old so I'm stuck trying to persuade him to do something. He cried all the way home because he hates being a "bad boy" and hates being stuck on things all the time. It breaks my heart and frustrates us both and tremendously! Is this OCD? Any ideas on how to combat it? Thank you all so much, Juls
  4. @Sheilathank you so much for all of the advice and information, I really do appreciate it. My son went for his second kinesiology session this week and she has prescribed GABA and a couple of other supplements so will see how we go. As for foods I have removed all additives,preservatives, colours and E numbers, my son only eats basic unprocessed food, ie meat with vegetables, rice and pasta. We have also gone dairy free and mostly gluten free. He also only drinks filtered water and he uses natural toothpaste and hair shampoo. Try to limit scents and strong odours around the house too. Thank you Jules
  5. JulesLou, I really sympathize with your situation -- it is so difficult when you can't find the help or resources you need. GABA I don't usually make nutritional recommendations. But given your circumstances, when you are not going to get genetic testing (most people don't) related to GABA, I would suggest you follow Cheri's suggestion and start cautiously with a small dose of GABA and slowly increase. Your son is old enough to give good input on how it is affecting him. It has clearly been linked to reducing tics in some people and tends to be fast acting. It is often used along with theanine and taurine. I came across this supplement based on another Forum user's experience for PANDAS. She suggested RelaxMax (Xymogen) which can be purchased on the Xymogen website. It is based out of Orlando Florida and unfortunately it seems a practitioner is needed. This user wrote that it was a very helpful supplement in a powder form (GABA, Inositol, L Theanine, Taurine, Magnesium. Those nutrients would all make sense. Her daughter was prescribed half a capful per day at 10 years old. I am going to include the ingredients that are included in a full capsule so that you could look for similar nutrients in the UK--either in a liquid form or powder. It doesn't have to be exact but this would be a starting place. You could find something with GABA combined with some of the other nutrients. INGREDIENTS IN RELAX MAX Magnesium (as di-magnesium malate)S1 75 mg myo-Inositol 2 g ** Taurine 500 mg ** GABA (gamma-aminobutyric acid) 100 mg ** L-TheanineS2 50 mg FOODS Also -- and I apologize for not reading through all your posts to see what you have done with foods as far as possible reactions -- please let us know if you have had a chance to remove certain foods from your son's diet. (What are his favorite foods? ) Please let me know. HOMEOPATHY You might also want to consult an excellent homeopath. I know they are numerous in the UK and an individualized remedy might be helpful. ORIGINAL POST re: GABA https://latitudes.org/forums/topic/25916-supplements-that-made-a-huge-difference/#comment-191005
  6. @JulesLou if I recall there were assorted tics that some found helped with the specialized TMJ aligning mouthpieces but it was a while back. My son had developed a bruxism tic when younger, which thankfully waned after specific acupuncture & related therapy, and so I had noticed those posts with interest, but TMJ misalignment was not an issue for him. So often for my son, we noticed the tics and the triggers being relational (eg flashing lights=eye blinking, dietary=vocal tics, sensory=motor) Those are just primary examples I had listed - but sometimes we still had general tic waxing and no clear trigger that we could discern - even though I have no doubt there were underlying triggers! But even then we did find calming and waning when we just followed protocols we knew were beneficial. When his tics were at their worst, he would always say he needed his trusted acupuncture therapist, who also had qualifications in other holistic treatments. Even though that was no magic cure, the benefits were remarkable. But this practitioner had experience with both Tourettes & Crohn's patients, and qualifications we trusted. I will mention that with any supplement, I always try to go with something that isn't a combo when initially trying - eg if you were to try that GABA with skullcap and passiflora and you got a negative effect - you would not know which one of those potent ingredients had the effect? We got a lot of unanswered mysteries with my son solved with a good allergist too- he has Multiple Chemical Sensitivity and so his reactivity to most anything chemically artificially produced is very broad from what goes into him and what he comes in contact with via all his senses. It explained a lot of the triggers that appeared hidden before. Like Sheila, I apologize for not remembering all you have already tried, but I do encourage you not to lose hope, and also to try (hard I know!) to avoid that stress. Even when the tic is persistent, I had to learn that I only intensified it when my son was aware how was stressing me more than it was him, if that makes sense.
  7. @Chemarthank you for your response, I have quickly looked at transmandibular joint issues, is this just the jaw as my son does not have any problems with his jaw. I am with you on stress and you do not always realise although having constant vocal tics is a big stress in itself so a bit of a viscous circle! Thank you for your reply about the GABA too, I am very undecided about this although it did contain skull cap and Passion flower which I have read good things about! So hard in finding some relief for my son and so unfair.
  8. Hi @JulesLou GABA proved too strong a supp for my son after we had tried it a few times short term for anxiety, so agreed you should be cautious. Our physician had us start very low, and also said it is a supp one should always titrate up and down. I know some people have benefited from it though, so, as with most things, it again depends on the individual's unique system and the underlying issues causing the tics. Some people reported mouth tics were helped by addressing transmandibular joint issues, and if you do a search, you will find those posts on this forum. I will say that to this day, the number one tic trigger for my son is stress, which as we know can come in many forms. It seems those are also the times when his sensitivity to triggers is also heightened. Hope you find answers
  9. Sheila thank you for your reply and the link, I have spent hours on this forum looking for advice and trying different things. Nothing ever seems to work and still non the wiser on what triggers the tics even though have been going through this for seven years. Yes I try to avoid scented products we do not use air fresheners or scented candles etc. My son doesn’t go swimming because of chlorine, he has a very strict diet, no colours, preservatives or additives, you name it , we have tried it. He has Epsom salt baths every other night.. Drs in the uk are useless and say just find ways of coping with it! I reached out to Dr Piper Gibson who runs very costly programs for children with tics, in the US, her thoughts on GABA where, “she wouldn’t touch it with a barge pole”, not unless you have done genetic testing as it sometimes makes kids brains feel like they are on fire! life is so hard with this, I just want to try and alleviate it, we can deal with it but not loud and constantly every second, the only time it stops is when he goes to sleep 😞 I am so exhausted! Thank you for taking the time to reply!
  10. Hi JulesLou, Quite a few people on the forum have discussed GABA. I did a search, please see here https://latitudes.org/forums/search/?q=gaba&quick=1 Let me know if this is a help for you. I'm so sorry to read about your son's ongoing lip smacking. I'm glad you have connected with a practitioner. To date, has anything seemed to help your boy? I don't recall if we ever discussed avoiding all allergens and scented products, etc. Please remind me what approaches you have tried in addition to supplement, if you like and if you have time.
  11. My son was diagonsed with Tourettes in July 2011. He had extremely loud vocal tics, which were very challenging. I would be up every night in tears reading forums, blogs and in search of answers. We have been seeing an integrative doctor for 9 months to try to reduce/minimize tics through diet modification and supplements. For the first time in a very long time, my son's vocal tics have declined by 80% and the tics are not very noticeable. The decrease came 1-2 days after he started taking a GABA chewable supplement. In addition to GABA, my 8 yr old son is also taking magnesium, fish oil, iron and vitamin D. He is also on a Gluten Free diet, artificial, color and MSG free diet. It's been 2.5 weeks and things seem to be the same. It's the best feeling I have had over 1.5 years and I'm praying that the supplements continue to be effective long term. I wanted to share because this blog has done so much for me on a mental level. I will do my best to provide updates on this supplement.
  12. Has anyone tried and had success (or failure) with gaba? I was just reading some amazing studies about it online, then jumped on iherb to order and read some negative stuff about it like that you should only use short term, that you need to wean on and off etc. I did read that you should change your diet to foods that increase gaba naturally but my son already eats a diet rich in these foods. We are in the middle of dealing with multiple motor tics, and also a vocal tic that can only be described as a loud zombie like humming noise (it doesn't stop from the time he wakes to the time he sleeps) and it is (and I mean this from a loving mom point of view!!!) Driving everyone in our house crazy, not to mention himself. He is unable to attend school at the moment because of it, and is feeling very emotional and not wanting to leave the house thank you!
  13. My daughter started battling PANS 3 years ago. We went to a specialist that gave her antibiotics for more than 8 months. I truly regret this length of time; especially since it did not seem to help as much as we would have thought/hoped. About 2 years after this started, we went to a functional medicine CRNP. She gave us a list of supplements for our daughter to take that helped dramatically within one week! We still have our ups and downs, but these supplements made a big difference, much more so than all the antibiotics. These are the supplements: RelaxMax (Xymogen) can be purchased on the Xymogen website, even without a practitioner. Very helpful supplement in a powder form (GABA, Inositol, L Theanine, Taurine, Magnesium. She was prescribed half a capful per day at 10 years old. Omega Longevity (Aceva) 1/2 teaspoon per day The Extinguisher (Mechanism Wellness) 1-2 per day 2,000 IU's vitamin D3 Probiotic (we used Culturelle kids packets; one per day) Multivitamin (we used Flinstone gummies) We used these supplements for about one year. We now adjust as needed: still using RelaxMax most days, 1,000 IU D3, probiotic, multi, sometimes omega 3. I truly hope and pray that these supplements can help your child as they did ours. Blessings PS There was also a supplement recommended called Copa Calm by Ortho Molecular. I think the nurse practitioner said one or two drops per day as needed. I did use this during a really bad flare and it was helpful. I did discontinue after that week when things settled down. My daughter's cheeks were flushing and I read that it can be from too much GABA. It really helped, but I believe only wise to use for occasional, serious flare ups.
  14. “Acetyl-L-carnitine plays a role in detoxification and has antioxidant properties. It also may support the nervous system in many ways beyond its role in energy production, including affecting neurotransmitter production and secretion. It provides acetyl groups for the synthesists of acetylcholine, leading to a cholinergic effect, and it may modulate synaptic transmission. Acetyl-L-carnitine may also affect dopamine and gamma-aminobutyric acid (GABA) levels and activity, and it reduces glutamate concentration in the synapsis, which provides an analgesic effect. Another way that acetyl-L-carnitine may support normal nervous system function is by imparting neuroprotective and neurotrophic effects, which includes influencing the action of nerve growth factor and promoting peripheral nerve regeneration and repair.” I found this information from blog.designsforhealth.com very interesting! Thanks for mentioning l-carnitine, I may try it.
  15. Hi guys i just found it this gaba for tourete syndrome here is the link any update about this study ? http://www.medicaldaily.com/controling-tourette-syndrome-tics-controling-levels-gaba-brain-305084
  16. Hi all I have a 13yr old boy who has had 'mild' T.S since about the age of 6. It has never (so far at least) become severe - generally simple vocal tics and some facial tics. He seems to have no other learning issues etc and school barely notices the tics. However, they are constant - never waxing waning. I have been reading a lot about GABA and think, for various reasons that it might really help him (he doesn't take anything except magnesium and some B vits) I am just wondering if anyone could suggest a starting dose? We are currently living in Nairobi, Kenya and homeopaths are pretty much non existent. He weighs about 85lbs if that helps! Would be so grateful for any advice. I would obviously rather start low and see how/if it helps Lisa
  17. Hi, Can someone explain the difference between GABA and Ashwaganda to me. Is it basically the same? Doc has us starting GABA 500mg. 2x daily...possible getting up to 1000mg in AM and 2000 in PM if needed. I also suggested the Ashwaganda for sleep so she said to take 500 mg. 2x day. Said it has alot of other good properties which I did read about. I'm confused though, if i want it mainly for sleep shouldn't I just give at night? Although I've read where some people find it energizes them and some said it makes them sleepy. I did give 1 pill last night and I don't think it did anything yet I do think the GABA help calm him during the day. Also can I give both at the same time? Did get his Cunningham test back, the results: Dopamine D1: 8,000 Diopamine D2: results not back yet Lysoganglioside: 640 Tublin: 4000 CaM Kinase II: 98 So high in everything except the CaM Kinase.....does this mean he's Pandas? thanks for any info frikfrak
  18. I did the 23 and me testing and found results I have posted elsewhere, but one of the recommendations I saw in the Yasko/Heartfixer documents was to try GABA at 500mg/day to soak up glutamates. Since most of the rest of the recommendations for DS's SNPs were slower to work on (finishing on the 12th of What The Heck are You Thinking in the case of DS, DH, and meat restriction) I decided to give the GABA a whirl. I used about a fifth of the capsule (or about 100 mg) and gave it to him with am vitamins for the last 3 days. He had both a major spanish project and a research paper due this weekend and had done nothing on either because of anxiety and wheel spinning. I expected the weekend to be hideous, including having to give him a lot of support on both projects, DS constantly starting fights with DH to divert from what he needed to do, etc. Instead, what happened was that DS barricaded himself in his room, found and read all his sources, came out and used the computer in the living room to put together his Spanish project, went back into his room and made the outline, and only at the end of Sunday asked me to type the final paper to his dictation. Even then, he was totally organized with all his sources, and simply told me what to type. He tried to start one fight with me, then stopped and said, "This break has lasted too long, that's why I'm fighting. Excuse me I have to get to work. Only those who know how this usually works with DS would realize what an incredible, miraculous weekend I had. So here is what I have done besides the GABA that might be helping. 1. He had been on risperdone and zoloft 200mg. We tapered him off risperdone due to weight gain and it seems like that made the wheels come off for him. But I thought (and the psychiatrist didn't) that the risperdone had been hiding the bad effects of the zoloft. So a couple of weeks ago I started cutting the Zoloft very slowly. Now he is at 150 mg. 2. I had stopped magnesium for some reason and I started it again. Those and the GABA are the only suspects. I really like this new child and want to encourage him, so I am afraid to change anything even though there are still substantial gains to be made. Any thoughts?
  19. 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!
  20. This is the only place I can get this answer. Please !! Dans been taking nac for well over 2yrs. Recently I've stopped and I've noticed his tics have too. he his misophonia (sound sensitivity ). I am confused. Nac is a glutamate agonist. ?? So if he's doing better off of it does that mean he's got to much or to little glutamate. Also he's taking gabipentin a GABA medication. I'm confused with this. Help!
  21. My son, 10 years old, has done urine test for neurotransmitters recently. We found that he was basically very high on Glutamate, Dopamine, Norepinephrine, and Epinephrine, but low on GABA. Doctor said in order to bring those down and bring GABA back to normal, he needs to have GABA 700mg once a day and then increase up to 700mg twice a day for a year long . I learned from this forum that taking GABA long term is not good. Therefore, I would like to ask if it is okay to take it for a year to see if his neurotransmitters back to normal range? If taking GABA for 1 year is not good, what is the longest length of time he can takes? Thank you for advice! JJ
  22. We just got back some testing that showed our ds has very high glutamate and very low GABA. The doctor put him on 100mg of GABA twice a day starting Tuesday evening and by Saturday he seemed really moody and almost totally unable to focus. This is the opposite of what she said the GABA should do. I stopped giving him the GABA and after missing just 3 doses, he seemed more focused and less moody. Part of me is questioning whether they are connected, becaue we've also moved recently and it's been very stressful on him, so I saw some moodiness and acting out before the GABA. But the other part is too afraid to put him back on the GABA to see if things get bad again. Has anyone else seen this happen and/or know why it would? Are there other/better supplements to rectify the glutamate/GABA imbalance?
  23. Hi, All. I know that I have seen some discussions regarding Glutamate and GABA, and that some of you have your children on some supplements for these two neurotransmitters. I was just wondering if there is a way to test to see whether our kids could possibly have too high or too low of levels. I was reading about how dangerous having too high of levels of glutamate can be, and that having too much can actually cause brain damage by causing brain cells to die (something called excitotoxicity). This really scared me, and made me think that if this is a possibility, then I'd better look into this. My son seems as though he might have high levels of glutamate, based on his symptoms, but how does one know, and what can be done about it if he does? It seems as though having too much glutamate, can sometimes have the same side effects as having too little. The symptoms seems to overlap. Also, he responded terribly to two SSRI's we tried (prior to his PANDAS DX) and also to Ativan (had a complete opposite reaction of what they're supposed to do.) I was wondering if being on an SSRI could actually change glutamate levels, because the psych meds DEFINITELY added to our downward spiral. As a result, I'm terrified to try another psych med, even though my son is still so extremely ill. Thanks for any information. Michele
  24. You could also try a GABA supplement, as well as trying dietary changes. Like removing gluten and dairy. Dietary changes can take many months to see improvement.
  25. Does anyone know if supplements able to cross the blood brain barrier? How much GABA is recomended?Anyone know.. Melanie
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