cara615

Honestly - we have been flaring since November when he tested positive for strep. We started abx and he got the flu over Christmas. The abx were working and reducing the tics and when he got the flu all tics were gone. However a week later the flare started. This was in January and then his brother brought home strep. We dealt with that and things started getting a little better but not back to baseline. Then I upped the dose of the abx and things got better only to have his brother bring home strep again in the beginning of March. once we treated that things got a little better but seasonal allergies kicked in and the flare continued. In april we switched abx from zithro to augmentin. Started homeopathy and allegra for allergies. Things got a little better but still not great. i added Enhansa and for a week i really felt that we hit the jackpot but then I realized that Enhansa has malodextrin in it (CORN!!!). And within 2 weeks the effects of the Enhansa were being counteracted by the inflammation caused by the corn. At least this is what i think. So I stopped the Enhansa. Right now we are on abx, probiotics, NAC, Vit D, allegra, essential oils (oregano and Thyme) and Sacc B. We KNOW my son has gut dysbiosis and clostridia. I am sure this is contributing to his flare as well as the allergies because they are still high here in Atlanta. I'm not starting the Bravo until school is out (10 days from now). What do you think the flare is from? Am I missing anything? No one is sick in the house (I had a little virus recently so I was thinking maybe it was me. I was coughing and had some phlegm). Ds has about 4-5 vocals and about 2 motors. Vocal are - "eh, eh, ah, ugh - short staccatto sounds", a shrill squeal that he tries to muffle by keeping his mouth closed, a WOOOOO!!!, and a puffing of air through his lips. His motors are opening his mouth wide and a head jerk. the head jerk is only when he is outside for a long period of time (i.e. allergy induced). The vocals come and go throughout the day, some are spaced by 5 minutes some are spaced by 20 minutes. They are clustered. I am totally frazzled by the tics. I am really not good at coping with them. In fact i am so messed in the head by them that i can't even be rational and realize that its not as bad as it was last year. i feel like any tics that he has are really bad at this point. Ugh, i am just so tired.

i was weaning by lowering the dose ever so slightly each day. It just seems when I do that for a week or so, his tics start to increase. I just want to get his gut in good place so we don't need to rely on the abx daily. I would love to get on a prophylactic dose MWF. At least that would give us the opportunity to heal his gut a little more. maybe when school is out and I start the BRAVO probiotic I will be able to deal lower his abx dose.

Yes we work with an HP. She says healing can still occur, just not as quickly. His constitutional is Californica Butterfly and his 2 nosodes are strep and candida. i wouldn't have an issue staying on a nosode for a year or more. Its the abx that are doing REAL harm to his gut biome. Once school i out i am set to try the BRAVO probiotics. I am hoping this can really create a new gut biome for him and get rid of all the dybiosis. This would probably be a good time to wean from the abx. i will try it again over the summer.

Thanks for the feedback. We are doing homeopathy as well. I know it doesn't always work as well when you are on abx but i wanted to start the process. DS has a constitutional remedy and 2 nosodes (strep and candida). Its a homotoxicology protocol. i am confused at what you are saying though. Did you ever have trouble weaning from abx or was it trouble weaning from the homeopathic remedy. i want to wean from the abx because its destroying his gut as well as who knows what else (bones? height? overall health?). I just get sick every morning that i have to give him abx.

DS has been on daily abx since Nov 2013. First he was on Azithro 75mgs daily till march. Then we upped to 150mgs daily. Then in April we moved to Augmentin 250mgs 2x per day. Don't you think if there were other infections that these broad spectrum abx would cover and treat them? BTW - we are neg for Lyme.

Just tics. during an exacerbation he will be very ADHD but since Nov its been just tics.

Thanks for all the info. My son is 6 and 40lbs. It seems that I must give it after a meal to increase its effectiveness. What i figured out on my own is that DS still needs abx I was trying to wean him from the augmentin and it seems as though everytime I do this, his tics come back. When I bump his does back up - tics go back down. There has to be another way to reduce inflammation. I can't imagine that the abx are that necessary especially since he does not have an active infection. His titres are still elevated (Anti Dnase = 172) but his ASO is neg. Maybe once his titres do back down he won't need the abx?

DS has had a positive reaction to ENHANSA. We are on 300mgs 2x/ day. I think that is the max dosage. It immediately lowered the frequency of his tics. My question is: Do the effects wear off? Does the curcumin build up in the body and have a cumulative effect over time?

Well all I can say is wow. The Enhansa has very immediate results. Ds's tics are almost non existent while we are in the house. If we go outside and play for an extended period of time, the pollen gets to him and he will have some tics (screaming and head jerks are his tics of choice this week - fun times!). But then we come back inside and the tics go away. i have been giving him 248mgs 2x a day. I just ordered the big jar of it. We are using the tasteless powder that you mix with water. This stuff works better than motrin in my opinion!

The Bravo cost $860 for a 3 month supply (YIKES!). I am not starting it until school gets out. I want to wean him from the abx so I don't kill the Bravo. It is a very time consuming process to make it. i have a giant plastic container with all the supplies in it. Jars, yogurt maker, strainers, spoons, pots, etc. I'm thankful that another PANDAS mom lent me her yogurt maker. That wold have been another $100!! I will keep you all posted on ds's reaction to the Bravo once we start it.

Well, I have nothing but good things to say about it. i dosed him this morning and it was a low ticcing day. I just gave him another tonight and we shall see what tomorrow brings. I like that i saw immediate results.

Np prescription needed. I ordered it straight from Lee Silsby compounding pharmacy http://leesilsby.com/enhansa-homepage

We are starting out slow. i also think seasonal allergies are killing us this season and his tics won't completely relent until the pollen count goes down.....

How long does it take to see effects with Enhansa. We started last night with our trial pack. it seemed to immediately lessen the tics however they are no completely gone.

The Sacc B is actually a beneficial yeast. Its not technically a probiotic. This is from what i have been reading. Someone please correct me if i am wrong!

So the Bravo arrived with a booklet of instruction and supplies to have on hand in order to make the yogurt. Its takes 3 days and requires complete sterilization of my kitchen. Can you tell that i am not chomping at the bit to make this stuff? So in the mean time (while I wait for all the supplies that I had to order, to arrive) I bought some Sacc. B and Culturelle dairy free. i gave the Sacc B last night about an hour after his abx. Didn't notice anything different this morning. i will give the Culturelle with his regular probiotic this afternoon and monitor his tics. Anyone experience anything good or bad with Sacc B? When is the best time to give it? Ds does have a moderate intolerance to baker's yeast but he gets it in some of the foods he has been eating and i don't necessarily see an increase in tics so i am not too worried that the Sacc B will aggravate things. Any thoughts? (edited to add): i believe the main reason why ds is still ticcing is because of his terrible gut bacteria. He has clostridia as well as other bad bacteria and if we can get this back to normal, I would think his tics would go away. He has been on azithro from Nov to April and now Augmentin from April to now. The abx gave him the clostridia but I know his gut was a mess even before the abx. I have been giving him Ther-biotic Detox for a year now and GSE for yeast control. Not sure how well they have been working....

I just ordered it and I am pleased that they offer a trial size. Do you know that I have an entire cabinet filled with hundred and hundreds of dollars worth of supplements that made DS's tics worse?

Qannie- whAt brand of turmeric do you use? I want to try for ds and myself. Is it Enhansa? As for EO's, yes we are cuurently using oregano and thyme to kill bad gut bacteria

Thank you all for your helpful comments. I just ordered Sacc. B and some Culturelle dairy-free. I will look into Enhansa as I cook a lot with curcumin but ds probably needs more than my cooking delivers

Can you tell me what VSL#3 is as well as Enhansa? I ordered dairy free Culturelle as well as Jarrow Sacc. Boulardii to give to DS while we wait for BRAVO probiotic to arrive. i am determined to get his gut back in shape. i think everyone in my house will benefit from these supplements.

I find it interesting that some kids are Ok and some just aren't. Ds has been on abx since Nov 2013. Mostly azithro until we switched to Augmentin in the Beginning of April. he has been on Klair Labs Ther-biotic detox plus an orthomolecular probiotic with 15 strains for a total of 100 bill every day. He gets coconut yogurt every other day and we are GFCF corn free and low sugar. i had been giving him 8 drops of GSE daily since last July to kill yeast and then keep it at bay. We do 1,000mgs of glutamine every day, borage oil, Vit D, NAC etc. I do everything i can to keep his gut healthy and i have failed miserably. I feel terrible but am wondering if its just the gut flora he was born with - as in not good gut flora. He was a C-section and I believe that my gut flora is the pits so i couldn't have given him anything good in my breast milk

We are doing homeopathy to treat the candida and possibly the clostridia too. There is a remedy for that. i am hoping to not have to use the nystatin. We will see. once i get the BRAVO probiotics i hope to see more improvement. I just don't know why we are on augmentin now instead of vancomyacin to kill the clostridia. (we don't have c. diff either). i have a call into Bradstreet to see how we can get him off the abx. i don't think staying on them is the answer. i know he needs to be protected from strep but right now he is ticcing from the clostridia and nothing else (well maybe seasonal allergies).

How bad did your child's gut get? did you ever do an OAT test to find out? What did you find and how did you treat? DS has high Arabinose - yeast marker, high 3-oxylutaric - yeast marker, high HPHPA - clostridia and all the other bad bacterial markers are high. We will be trying a fermented yogurt probiotic to help with this. But I wanted to know if there are others with bad guts out there.

Funny - I was just pondering the same line of thinking the other day. Especially with Autism being 1 out of 42 boys now. There is a change big time in our human health and its totally environmental (I'm including diet in that bucket). its downright scary actually. But as for BRAVO you can bet Ds will be off abx when I give him the yogurt. i am certainly not going to waste my money on this. The good thing is that if it doesn't work, Bradstreet should offer to buy it from me. He did with my friend IRL that bought a year's supply and it did not work out for her child. But since every child with PANDAS is different.....

oh and i got the info on the 3 different gut types from articles about fecal transplants.