TeamTyrion

Hi Zinto, One thing I have learned from this forum is the "low and slow" idea of supplementation introduction. It is really important to introduce supplements one at a time (with low doses at first, then slowly up) and see how your child feels after 2 - 3 weeks. Only then should you introduce something else (again with low and slow in mind). I learned this the hard way recently when I just jumped into GABA at a high dose and boy, that did not work out well for my Son. I have since read (in the PANDAS forum) that there are others who did not respond very well to GABA. Also, my Son responded quite badly to Epsom Salt baths which surprised me considering how beneficial it seems to be for so many here. We have since done 23andme genetic testing and learned that he has CBS issues, which means that he will likely not tolerate sulfur intermediates (Taurine, NAC, glutathione) very well, or the epsom salts (which is magnesium sulfate). So, now I go really slowly and one-by-one with the supplements so I can monitor my Son's behaviour carefully.

hi chemar, Have been adding cows kefir to our pancakes for a couple of days now. So far so good. (although it's just occurred to me that cooking might kill off probiotics??) Anyway, I have also been adding Inositol to my son's supplements for the past 5 days and so far it hasn't helped with the OCD. I have been using 1.5 grams/day and my son is about 72 lbs. Does it take some time to work? Should I up the dosage? I definitely want to add 5HTP to his supplements (for his OCD) one day but for now I am going very slowly to keep an eye out on things. I am definitely finding that the OCD is the hardest part of all of this. In fact, his tics (throat clearing/humming) are really not that noticeable anymore. The OCD has become front and centre now. Thanks, Lisa

I have never even considered kefir. Now I'm going to look into it! His Alcat test came back as positive for being casein intolerant though. BUT, at the time he really had a leaky gut. That was almost a year ago now so I hope he's healed a bit and can tolerate some kefir. I will definitely try. I'm sorry but I have no idea why Type A2 casein from Guernsey cows is significant. Could you elaborate? Thanks so much chemar, you always have such good input.

Thanks chemar, His reaction was that his OCD went through the roof. It was so hard for him, and hard for us too. Do you mind sharing what you mean by "not tolerating" probiotics. Does that mean they just had a bad belly and it wouldn't stay down, or that they reacted SO adversely that even the idea of 'staying the course to let the toxins be released' was not worth it. Just wondering because I guess it's a subjective call isn't it, in terms of when to give up on a supplement. It would be nice to have some concrete markers to help a parent make that decision. For instance, my Son's OCD went from being every 15 - 30 minutes (calmly having to do it), to every minute (desperately needing to do it)....for days. I just couldn't take it anymore.

Just got back from vacation and was surprised that no one has chimed in on this, and my other post. Things are better now and I just took him off the probiotic completely. I know that probiotics are pretty important though, especially with the gut stuff that is essential for detox. On the one hand I'm pretty happy that things have calmed down; however, I can't help thinking, was I supposed to keep going? Was it essentially doing a GOOD thing for his body by killing off the bacteria? If I had stayed the course would things have eventually gotten better? I never seem to know what to do with all these supplements. The moment he starts to react I just stop the supplement. I feel this is right but maybe it's not. Any thoughts would be appreciated.

So, my son is still really reactive right now - unbelievable mood swings and OCD. I'm just wondering if this has something to do with the new probiotic (Natren green box) we are using, which we started last week. Is the yeast die-off causing this reaction? And more importantly, do I stop or do I continue using it? Is it ultimately a good thing since it is getting rid of all the bad stuff, and we just need to buckle down and wait for this awful reaction to end? Is there anything I can do to help him out while he detoxes? (Epsom salt baths are not an option since he has CBS probs). Thanks everyone.

Things were really bad this past week. My ds6's OCD was just through the roof. I was in tears this morning and can't bear to think that he's only 6 and things may get worse as he gets older. I am desperate to find a doctor who follows the Yasko protocol who is willing to skype with me and just do long distance consultation in general. I feel I have exhausted my nearby resources here near Toronto, Ontario. A DAN doctor that I was working with (I probably am not allowed to mention her name) REALLY didn't work out for us. However, she did get us onto the 23andme site and I do have the results. It seems clear that my son has CBS problems, and has the compound heterozygous MTHFR mutation, as well as COMT issues. I know we need to prioritize CBS first, and from my readings, the first thing to do is to lower his sulfur content. This means staying away from sulfurous foods, and any supplements containing sulfur (glutathione, NAC, methionine, taurine, and cysteine), as well as Epsom Salt baths. I could go on, and on, but I've read some posts from Sunshine about her child having CBS problems, and having a long-distance doctor that she consulted with who followed the Yasko protocol. What I really liked about the posts that I read, is that she (Sunshine) was able to "track" the progress of her child by the use of tests to keep the guessing game out. I don't know exactly what that would entail - my guess is urine sticks to track heavy metal excretion, and/or bloodwork to track a reduction on homocysteine levels.... But the point is it empowers parents to SEE what is happening and that's totally what I'm looking for. Does anyone happen to know that name of Sunshine's doctor, or know of another Yasko doctor that can help us? (Also, I know that some people would rather keep their amazing doctors private so that they don't become inundated and start providing less than adequate service to existing clients - I feel this has happened with the doctor we were dealing with nearby - so please feel free to message me on this board. Or, I can give you my email address if you would like.) Thank you. I'm not a religious person but lately I have been praying a lot.

Hi Kevin, I read every single post in this thread. We began our own journey with our ds6 last May, when he started punching himself uncontrollably. We have since seen all sorts of tics, waxing and waning. I just wanted to know...what is your son's current diet situation? Is he eating completely normally, or is he still gluten-free, mostly dairy-free, etc. Also, do you still keep him on supplements and if so, which ones do you feel were the ones that made a difference? Thanks, and great to hear of your success.

My ds6 just got sick yesterday and he developed a terrible swearing tic (lots of F words and Sh** words) as well as some OCD. I have always felt he has TS but keep hearing how those with Pandas/Pans have flare-ups when they are ill. My question is...can you also flare up if you have TS and are ill? Thanks, Lisa

I know I've been posting a lot but when I search for "multivitamin" I get tons of results that just have people saying, "use a good multivitamin" etc. without actually saying the brand name. I just spent an hour tonight in what I thought was a good vitamin store, looking for something that had the basics for my Son - the Bs, C, Calcium, Zinc and all I could find was sugared up gummies, stuff with corn or yeast, fructose, you name it. I checked everything and basically left in defeat. Can someone please recommend something to me? He actually finds things like gummies too sweet and I would love to find something I can throw in with his smoothie if possible (powder or gel). So far only chemar has responded to my posts - and I'm so grateful - but would love to get help from other people too. Thanks.

Hi Safeplate. Just looked at your website and it is eye-opening. I noticed in your oil section that you do not mention Canola. Is ORGANIC Canola still genetically modified? (is anything organic non-GMO?) Thanks.

Thanks chemar. Just wondering, when he runs to touch me (my hands or face), I don't like it and wonder if I should be letting him. The idea is that I don't want him to touch others to perform tics and carry that idea to school, etc. Is this not being respectful of him? Is it ok to *try* to set a limit there? Thanks again.

oh, thank you for shedding some light....finally.... Please tell me more chemar, I've been so in the dark for too long. Are we giving him the right things? Are the dosages too low (magnesium seems low...)? thank you

Hi everyone, New to this forum and trying to figure things out. My ds6 has ever-changing tics it seems. I think it started just b4 he turned 6 when he started wriggling his fingers together, then needed to feel his genitals (still does this), then brush parts of his face, and so on. He had quite the throat clearing tic since the Fall (when school began). We have eliminated dairy, gluten, refined sugar, soy and corn. I'm just now starting to see if eggs seem to affect him. We give him probiotics twice and day and a tsp of Fish oil once a day. Our naturopath is waiting to see what to prescribe him in terms of a multivitamin and b-complex until after we get results from 23andme testing. She gave us RelaxMax to give him (2 scoops a day) but I'm not sure if he was reacting well to that. His need to touch things seemed to grow stronger, or maybe that was in response to something else, not sure. The RelaxMax has Magnesium malate (75 mg), Inositol (2,000 mg), Taurine (500 mg), GABA (100 mg) and Suntheanine L-Theanine (50 mg). So, the vocal tics have really gone down, almost to nothing, but his need to touch thing has really gotten strong. If we stick out our hand to point at something it really affects him. If I touch my mouth, he needs to touch my mouth also. Is that just one tic replacing another? Is it OCD? I once read that OCD has behind it an idea that if you don't perform the action, something bad will happen. I can almost guarantee this is not the case with my son. We talk openly about why he tics and it's always the same - it feels "uncomfortable" not to do it. I have asked also if he feels something might happen if he doesn't do it and he always responds with no - and I truly feel he means it. Another thing... He hates it when we say certain words, especially words that have to do with blood. Even saying other words that begin with "bl" gets him upset. He also doesn't like the words pressure (reminds him of blood pressure) or strong (no idea why this word upsets him so). What is that? Again, is that OCD, or does it NEED the "fear-of-consequence" factor to be OCD? Overall he is doing better. He had great anxiety back in the Spring (I also know he has a pollen allergy so that was exacerbating the problem), and it came back this past Christmas. There were tons of worry questions during both times. Now the worry questions are gone. He's much happier, but still the need to touch, and the reaction to words. Any input on this would be so greatly appreciated.

Hello! My Son started ticcing badly last May, during a very crowded event. He started punching parts of his body (his chest and groin) uncontrollably. Since then his tics have changed constantly and include both vocal and motor. We found a DAN naturopath and she recommended we go to our doctor to get a test to see if this is PANDAS related or not. I believe it is not, since tics run in his family (both parents), but I would like to rule out PANDAS. Can someone tell me what test I need to ask for? BTW, I am Canadian (live near Toronto). Not sure if tests are different between the US and Canada. Is it the AntiDNaseB titer that I ask for? Thanks everyone. I have been reading this forum for so many hours now - so much stuff and so relieved to find I am not alone. Lisa