cara615

Bradstreet never discussed the suppositories with me so I don't know how efficacious they are. I can ask next time I speak to him.

Tics did increase the first couple of days on BRAVO and I thought it was die off but Bradstreet said it was the yogurt's reaction with the endocannabanoid 2 system. Kind of like activating the immune system. But after like 2 days the tics just kept getting lower and lower. i can't wait to get my easy kit. The hard kit is killing me. i just started my 2nd batch!

Yes, I have non PANDAS back on abx for about 5 more days and then we will run out of keflex. Then we will see what happens. If PANDAS twin relapses then i need to take non PANDAS twin in for another culture. Praying we will be out of the woods.

The probiotic is a yogurt once its all made. It tastes exactly like plain greek yogurt but a littl emore liquid consistency. I put a teaspoon of it into applesauce (you have to start very slow) and mix it up. Both my kids take it and actually like it. As for other probiotics, they do not work nearly as well. The BRAVO has been a game changer and i think its because of the GcMAF which is in there. The GcMAF activates macrophages which eat viruses and bacteria. The BRAVO is creating a whole new gut biome for him. So since his tics were primary from the clostridia and gut dysbiosis then the BRAVO is what he needed. So no matter the symptoms, if they are because of an unhealthy gut, this probiotic would help for sure. They also came out with a 24/hr process instead of the 3 day process and its $300 Euros for a 3 month supply. Much cheaper than the $860 I paid for a 3 month supply. They say its the same exact thing once its all fermented into a yogurt. i hope this answers your questions!!

2 weeks on BRAVO and on a scale of 1-10 with 10 being debilitated, DS is barely a 1. Vocals almost ALL gone. If I hear one its a seldom occurrance. He has one motor that he does occasionally which looks like he is trying to shake water off his forearms. And while we are at the pool it looks totally normal. Even that tic is pretty mild at this point too. i am starting to cook up my 2nd batch of this stuff. Its pretty powerful and all i can say is WOW. so if you have a child with severe gut biome issues (bad bacteria, clostridia, dysbiosis of any kind) this is your mercedes of probiotic. And trust me, its just as expensive as a mercedes too!

Thanks all for your very informative and caring advice. I think I will choose to believe the Labcorp results we got which were neg for every single band. Right now we are on the BRAVO probiotic which i will update on my thread that I started. 2 weeks on it and his tics are almost gone. i really do think its his gut that needs to be healed. As for abx, he is still on them, daily dose. My goal is to get him on a prophylactic dose and then off of them. I know it may take time so right now i am just focusing on his symptoms and to be honest this is the best he has been since October 2013. I am attributing this to the BRAVO.

Hopeny I'm actually not concerned about Lyme but every time i post on one of the FB groups, i get bombarded with people telling me i need to test for Lyme and that my negative result from Labcorp is not sufficient. its just kind of freaking me out.

Ok so as we all know those FB groups can get a little nuts. People posting advice totally based on hearsay and what not. Its sometimes frustrating trying to weed through the folks to get to the posts where people actually know what they are talking about. What i like best about this group is that you ladies/gents are 1) totally respectful 2) really knowledgeable and 3) are gentle with the advice. My question is how far should I push for a Lyme diagnosis? the women on the FB pages make it seem like i should keep testing until i get a pos dx. And even if i don't still treat for Lyme!!! DS was tested through Labcorp. I know, I know its not IgenX. But he didn't get a single pos or IND band. He had also been on abx for 6 months prior to the test. His immune function is also in the normal range as far as all his levels of IgG, IgM, IgE etc. etc. He has no Lyme type symptoms, just tics. Now, I will say we live in GA and visit NY every summer. We love hiking and we have been on Fire Island (not hiking in the brush, just on the beach but still). I have never found a tic and there was never a rash. I know that doesn't matter but i just want to point it out. I also never have had any typical symptoms of Lyme. I only suffer from a rare and mysterious disorder called Achalasia which they think is autoimmune in nature but don't know what the trigger is. I got this when I was 17. Hubby has bad seasonal allergies. That's it. Right now we are treating his gut and treating his brother (non-PANS) for a prolonged strep infection. DS is doing great, best he has been in MONTHS!!! Minimal ticcing. Right now all I see are a couple of arm shrugs. NO VOCALS!!!!!!!! Can i put Lyme on the backburner for now or should I order that IgenX test ASAP>??

i totally need to invest in the home rapid strep tests. Thank you for suggesting. Going to buy STAT! And i agree, it was a residual infection that was not completely killed off by 10- days of keflex.

Ok I think you may be misunderstanding my question. Here is the situation. PANDAS DS (we will call him C) was reacting to non-PANDAS DS (we will call him J). We come to find out that J had strep. We put J on abx for 10 days. During this time C stopped reacting and got better. Once we finished J's abx course, about 4 days later C started reacting again. I thought,hmmmmm maybe J got strep again or maybe we never killed it off completely!! So i had lots of extra abx in the fridge because they give way more than you need and i put J back on the abx. Guess what? C stopped reacting within 24 hours!!! So my question is what was C reacting to in between the 2 courses of abx that I am giving J? Was it another infection in J or was it just high titres in J? here is where i think I answered my question. J has high titres whether he is on abx or not. Titres take a while to decrease. So if C is doing well then it should be safe to say that he © was reacting to an actual infection in J's body that was not completely eradicated from the 1st 1o days of abx. Follow me? I know I am so confusing and driving myself crazy!!!

Is it all white blood cells or a certain type like lymphs? Is the percentage low or is it the absolute count?

Is it the infection in another child that comes in contact with the PANDAS child or is it the high antibodies? For example if my PANDAS's twin (non-pandas) has strep and we kill the infection, once we finish our course of abx will my PANDAS twin continue to react to the high antibodies in his brother's system?

OK i have been afraid to type it but this is the 3rd day in a row where his tics are the lowest I have seen since last October or before. Dare I say it, but BRAVO is WORKING. Now my son's biggest issue is his gut health. i know from a recent OAT test that he had yeast, clostridia and tons of bad bacteria. The clostridia and yeast were most likely the cause of his most recent ticcing especially since his strep titres are finally back to normal. He also tested neg for MycoP, EBV and Lyme. So for anyone that is in a similar situation with their child and can't seem to get the gut back in order, BRAVO seems like a real option. I can't believe how powerful this stuff is. I have only been giving him 1/4 - 1/2 tsp 2x a day. Since its a milk based probiotic i was nervous about giving it to him since he is dairy free but that does not seem to affect him at all. Its more about the good bacteria and the GcMAF that in this stuff. i am very hopeful about this. DS is doing very very well right now.

Here is my 2 cents. A Tourette's diagnosis is a clinical one. The motor and vocal tics need to be present for at least a year then they will give that diagnosis. Your son sounds a lot like mine with the tics coming one by one and then going away and coming back as different tics. It took me a full year and a half before I realized this could be a tic disorder. here is what we did first. We got an integrative MD who did lots of food sensitivity testing. We specifically did the ALCAT test which tests over 50 foods. We found that our son was intolerant to CORN, GLUTEN AND DAIRY. Our son was also a VERY picky eater since birth and i was terrified of removing all these foods. Keep in mind that you don't have to remove them all in a day. its a process and it takes time to figure out the replacements. There are tons of websites with recipes for gluten/dairy and corn free foods so its not that difficult to accomplish. The big thing that got my son eating more was removing SUGAR. once I got rid of almost all sugar from his diet (including fruits with high sugar content) his appetite blossomed. he started eating salmon and broccoli, grilled chicken and turkey. Its amazing how sugar can suppress a child appetite and make them only crave sweets. After removing all of these food sensitivities from our son's diet we saw a reduction in his tics. We also found out that he had yeast in his gut so we added grapefruit seed extract (4 drops) to 7mls of OJ, 2x a day and this helped to kill off the yeast. We saw another dramatic decrease in tics once we did this. His body is reacting to allergens most likely so your pediatrician is correct in saying that however i don't believe its always environmental (although it could be). That is why a good place to look is the diet. At least as a starting point. our story goes off in a different direction because our son was eventually diagnosed with PANDAS after an asymptomatic strep infection that i happened to catch last November but without these diet changes he would not be in the place he is today. He had slight ADHD/OCD like behaviors when this all started but once I removed the gluten/dairy and corn all of that went away. We were just left with tics which also decreased to the point of no one noticing them.....until the strep infection of course. Please feel free to PM me if you have any questions. I believe Tourettes occurrs when the gut is not healthy. There is a huge gut brain connection and if the gut is not working properly then the brain can take the brunt of this.

I can tell that this is going to be a process. Gut healing takes time. 1 week on BRAVO and I am slowly increasing the dose to 1/2 tsp 2x a day. This stuff is supposedly so powerful that you have start out very slow. His poops are amazingly healthy looking too. Tics are still there but gradually, gradually............ i can't even type it....i don't want to say

So I spoke to Bradstreet about how to handle abx. He wants to keep DS on them for at least a month of the BRAVO. Apparently the GcMAF in the BRAVO will help even with the abx in his system. I still give the BRAVO in the middle of the day and at night as far away from the abx as possible. From what i have exeprienced, ds still needs the abx because everytime i try to wean him, the tics become constant. When I put him back up to recommended dose, the tics become very mild. Its crazy and I hate it but if he needs it to keep inflammation down then so be it. Abx works better than ENHANSA at controlling inflammation (at least for us). Right now we are only on week 1 of BRAVO and I can't say that its been a miracle, but it hasn't made anything worse so that is a good thing!! We will do a repeat OAT in a month to see how his gut has fared so far. right now tics are a 3 on a scale of 1-10 with 10 being the worst. He also does not have any behaviors. I think we are in an OK place.

Day 3 on BRAVO probiotic: The first day we say increased tics and even new ones emerge! the 2nd day all the new tics disappeared and we were just left with is head jerks and a couple of vocals. However they were few and far between. Lowest I have seen in a while. So I decided to give him another 1/4 tsp at night to let the good bacteria have lots of time to grow. Today is day three and tics are LOW. They are still there, but LOW. I am taking BRAVO and so is my other son. I am giving it to my whole family. I am hoping to help out my IBS and clear up my other son's gut as I think he may have dysbiosis as well. (He is NON-PANDAS though). I hate writing all this stuff because every time I do, things go downhill right after. But I am praying for healing and to get off the abx so optimal healing can occurr. Slowly, i am reducing his augmentin every couple of days. I'll will keep you all posted on our progress.

We see bradstreet here in Buford GA

So school is out and it took me three days to make it but I finally have my first batch of BRAVO. I gave ds 1/4 tsp of it yesterday and his head tics increased over the afternoon. I also saw new tics emerge that I hadn't seen ever. I am assuming that we are seeing a die off. I was expecting this since he has clostridia. We had blood taken last week and it came back negative for mycoP and his ASO and ANTI DNase were normal!! So as far as infection go, we think ds's trigger for tics right now is gut dysbiosis and clostridia. Allergies play a role too but the gut is the bigger issue. Now to get him off the abx!! I have. Consult with Bradstreet on Tuesday to see how we manage BRAVO with abx or do we start to wean. I just don't wNt the tics to get severe. We are at a 3 or 4 out of a 10 on the tic level and I can't handle much more.

You guys are seriously the best.

thanks all for the insightful suggestions. Here are my thoughts. NAC - he has been on it for over a year now 1200mgs. We had 3 great months where he was almost tic free while he was on the NAC and I do remember lowering for a period of time o see if it was hurting and I remember the tics increasing slightly so I don't think its the NAC. Vit d - just added it 2 months ago - its 1,000IU's daily and i can't say that it has helped or hurt but I am open to eliminating this because his vit D levels were not deficient - but they were low at 32.1 (ref range 30-100). Sacc B - another thing that I can't say if its hurt or helped. I have not seen a direct correlation of increase in tics to this supp but I am willing to eliminate it to see what happens. Allegra - I know this helps him because I skip a day and all ###### breaks loose!!! I will try the vit D first and if nothing changes then I will add it back in and eliminate the Sacc B...... etc. As for Lyme - we have tested for it as our Doctor is very well versed in Lyme. There was not even one positive band that showed up. I feel pretty confident that DS does not have lyme. But we did not test for co-infections like bart or babesia so maybe that should come next..... Thanks so much!

Oh man. Duh. i feel stupid. My brain isn't working well these days. Ok so hmmmm. Why did it work so well the first week but then just stop? maybe his inflammation has increased for some reason and its more than the ENHANSA can handle? I am at a total loss. And I am sorry, for all my questions.

Here - check out the ingredients by scrolling down. http://leesilsby.com/enhansa-taste-free

Its listed in the ingredients for the tasteless powder that dissolves in water. Could it be that different forms have different ingredients? I will try to pull up a link or a picture of it for you.

We are still on homeopathy with a candida remedy as well as the Sacc B. DS does have yeast but its not as high as the clostridia and bad gut bacteria. I really feel its the clostridia that is causing this flare coupled with the allergies. When I started the Sacc B, i did not notice an increase in tics. But really who the heck knows at this point what is causing what. Its so hard to tell.