cara615

dasu - from what I understand a prophylactic dose is lower in potency than a treatment dose and can be taken a couple of times a week instead of every day. I believe every doctor has his/her own protocol. Right now we are on 250mgs of Augmentin 2x a day. That to me is considered a treatment dose. The antibiotics kill all the flora in the gut good and bad so a probiotic is necessary. According to our Dr. the probiotics that you buy in capsule form such as what we use (Ther-biotic detox) don't make it past the stomach and therefore are not as good as eating fermented foods. The BRAVO is a fermented food (yogurt) what makes it so expensive are the quality of the bacterial strains. This probiotic is supposed to create a whole new ecosystem in the gut. i would assume it works best when off of antibiotics. I do not think that any probiotic should be $860 for a 3 month supply. I do feel like I am getting fleeced here but i have to give it a shot since my ds's gut is in such bad shape. i will let you all know how we fare.

my thoughts exactly. Its a total catch 22 and it makes things so much worse. i know Bradstreet is not a fan of daily abx - he prefers a prophylactic protocol.

Oh yes, i will be posting updates. Everyone can learn from this. The shipment it on its way from New zealand. Fed Ex. I hope they freaking overnight that stuf because shipping was $60!!!

i have oficially lost my mind. Seriously. Its gone. I have decided against the fecal transplant for a couple of reasons: 1) Each person can have one of three gut ecosystems and you don't know which one you are getting when you do the transplant. If the ecosystem does't match you could have bad results 2) there is potential for strep to be in the stool sample 3) it will be traumatic for my 6 year old 4) Unsure of how long improvements last if there are any 5) Fcefxer's experience scared the crap out of me So instead I am saving my money and trying out the BRAVO probiotics that Dr. Bradstreet recommends. Apparently it helps the body produce its own GcMAF which attack pathogens. its a powerful probiotic with a powerful pricetag. i just paid $860 for a 3 month supply. That hurt. A LOT. But i need to help his gut. he will never get to the point of healing if we don't fix the gut first. my hypothesis is that I have bad gut flora and i passed it on to him en utero. I also breast fed him for 3 months and he got more of my bad gut flora. Both my boys were born with eczema. i didn't think you could be born with it but they had it since day one and that leads me to believe they never started out with good gut bacteria to begin with. They were both C section babies too.

Fcefxer had a bad experience. It made things worse for her daughter. She suspected strep in the poop. I will ask all these questions to the Dr. Tonight when I speak to him. I'm skeptical now.

Ok I am having my 50 minute consult with Dr. Shepard tomorrow night! Any questions I should ask him besides the obvious? 1) Does the DNA of the donor actually get transferred to the recipient? 2) What are the risks? 3) Rate of cure for clostridia? 4) How often do neurological symptoms resolve with this treatment? 5) Does the bad bacteria ever grow back? how likely is this? My mind is blanking, any thoughts would be very appreciated!!! Thank you

Allergies are killing DS this year and guess what? April/may were his worst last year too.....

i am just thinking that antibiotics are only making his gut worse. We switched from Azithro to augmentin and that may help a little but the clostridia will still be there. We need to kill it. Also, DS has gut dybiosis prior to being on abx anyway. it makes sense to me since his symptoms started probably 2 years before the PANDAS dx. i really hope this can give his immune system the re-boot that it needs.

DS has gut dybiosis and Dr. Bradstreet suspects Clostridia (this will be proven when the micro OAT comes back). We are thinking about doing a fecal matter transplant. Its a 2 minute procedure that is given 3x over 3 days. We would travel to Tampa. The Dr that performs it is a gastro and has been practicing for over 25 years. He has done over 100 fecal matter transplants. Since the probiotics are not helping DS, I am not sure what else I can do to get his gut healthy. He is already on GFCF corn free, low sugar etc. I would really need him to eat tons of fermented foods and that is not going to be likely and its not going to be a quick recovery. I would like to hear thoughts from others if they have tried this. Thanks!

Can anyone recommend a good digestive enzyme for a child that does not swallow pills?

The thing that makes me weary about Bravo is that its dairy based and DS has a dairy intolerance. Why would I give it to him? I would be more interested in the fecal transplant. Especially if they can sedate him. I would travel to FL where this doctor is performing it on children. i do know that my doctor will buy the probiotic back from me if it doesn't work or if DS has a bad reaction. my friend IRL who has a PANDAS son and sees the same Dr. tried the Bravo on her son and it made him CRAZY. he sold it all back to Bradstreet. i just don't know what to do. I know we have got to get his gut back to a healthy place. GAPS diet seems interesting but I swear to you I don't have the energy to put him on another diet. It took so long and was so hard to go GFCF corn free. And from what I am finding out ds is still getting corn that is hidden in ingredients that shouldn't even have corn. Its totally impossible to get rid of all the allergens.

He is a researcher. He is brilliant. But I'm scared of how much dysbiosis my son has He wants me to make Bravo probiotic which us dairy based. Ds has a dairy intolerance, you think it's worth it to give the Bravo a try?

Ds has a constitutional remedy (californica butterfly) and 2 nosodes (strep and histamine). Cole was dx with PANDAS when he tested positive for strep and had elevated titres back in Nov 2013. I think his big issue right now is the bad bacteria and yeast in his gut. we need to deal with that right now too. I know the augmentin is doing something because after give it to him, his tics increase. Got to love this roller coaster.

We are GFCF, corn free and low sugar. Not sure how much I can cut carbs in a 6 year old. Hoping the abx and nystatin can do their thing. i can tell that the augmentin is working because after I give him a dose, his tics increase. I think its bacterial die off.

DS has severe bacterial overgrowth and yeast. Dr. Bradstreet's opinion is that probiotics don't work in most. We have been giving 100bill CFU of Ther-biotic DETOX and 8 drops of GSE per day. Apparently these have done nothing So he is putting DS on Nystatin and changing abx from Azith to Augmentin. He thinks the Augmentin will help kill some of the bacterial overgrowth. He also thinks that is what keeps Cole ticcing. Its the fact that his gut is all messed up. He also wants us to try Bravo probiotic as well. its a yogurt that you make and it comes from Italy. I think its like $2,000. I will be in the poor house before all is said and done. We are also starting homeopathy at the same time. I know that is probably nuts but since there are no interactions it can't hurt only help. This afternoon i gave him his strep remedy and it really helped to calm all his tics down. It happened instantaneously too. i am somewhat in disbelief but I will give it more time to see how well it really works. Dr. Bradstreet also mentioned a fecal transplant. oy vey.

AGREED!!! My son is a-symptomatic to seasonal allergies as well. i swear the Allegra has really gotten his tics under control. Hardly noticeable. Ofcourse the second i write this, everything with change.....

No I haven't. Are you using homeopathy? How do you feel about it?

Before a PANDAS dx DS had periods of time where he was totally tic free. After his 1st true exacerbation with severe debilitating tics he has never gotten back to fully tic free. right now he is very low and no one besides myself would ever notice that he is ticcing. But does this mean that he has underlying TS? lydiasmum's post got me thinking about this. I never once thought that ds has TS even when he got the dx from the neuro. I felt in my gut that it was something else. so I am wondering does baseline have to be completely symptom free and if NOT, will we ever get our kids 100% resolved?

Its rare that a western educated doctor will look outside his/her box and be willing to take in new information or possibilities. We have seen a neuro who gave is a dx of TS, OCD, ADHD and anxiety. We have seen a psychiatrist who has given us the same dx. Through the research I did on this site and others i realized that there are other avenues to go down. We tried integrative medicine which started us off on the right foot. Then we got our PANDAS dx and have finally landed on an immune specialist that is an expert in treating ASD and PANDAS. i am also exploring Homeopathy, just had a consult today. Homeopathy is energy medicine and I have read many many positive testimonials for children with PANDAS. I am going to give it a shot because the remedies are natural and anything is better than abx at this point. So I would say to discount what your neuro told you. My ds's tics would come and go completely until he had his 1st PANDAS exacerbation. Then his baseline was very low ticcing but he was rarely tic free. i hope to get him back to tic free one day but just because he isn't doesn't mean he has TS. When his brother gets strep ds reacts with a flare. That does not happen with TS, sorry, it just doesn't. When DS was infected with strep himself he had NO symptoms whatsoever except for severe tics and once on abx he got progressively better. That also does not happen with TS. So move on from this doctor who is not going to get you the help you need. Seek out people that believe in this dx and that are willing to gather information, do testing and get to the root of the problem. the idea is to get our kids' immune systems working properly once again!

i don't think Courtagen does the same kind of testing and I think its more $$$$

I'm so mad!! 2 samples sent and both times they couldn't get enough DNA. What to do??? Just got a refund....

have or haven't?

She's been on anti- seizure meds (all sorts of them) for years and she still has seizures

I just read this off Dr. Bradstreet's blog: Dual Role of Quercitin as Antidepressant and Antioxidant: a Double Edged Sword.March 8, 2011 Leave a comment Quercetin is a plant-derived flavonoid found in fruits, vegetables, leaves and grains. It also may be used as an ingredient in supplements. It is also a fairly good antioxidant and anti-inflammatory. However, despite all the good news there may be some cause for caution and concern. Some very interesting information just published by researchers in Japan gives us clues why sometimes quercetin seems to help mood and in others it seems to be a problem. If you aren’t a neuroscientist the take-home message is clear. Quercetin weakly inhibits one enzyme responsible for the breakdown of serotonin and other neurotransmitters (catecholamines = stimulating type of transmitters). In that way it may help depression. But if your levels of these neurotransmitters were already high – it may trigger mania and rages. On balance, I have found this supplement helpful in most patients with chronic inflammation, and only occasionally see negative behavior or mood effects. Question: if your child is not utilizing seratonin properly and has an excess of it in the body will the Quercetin have an adverse effect? has anyone experienced this? What were the symptoms? We have not received our supplement that contains Quercetin yet and I am nervous to give it to him because he has high levels of seratonin because we think its not being utilized in his body.....

Thanks 3bmom! That is the advice i was going to give her. She is definitely looking into Charlottes web. Infact high CBD hemp oil can be fed ex'd to GA by Bradstreet! So she doesn't even need to go to CO. I told her that she may want to see him. High CBD hemp/marijuana is VERY VERY anti inflammatory as it binds to the CB2 receptors located in our gut. But yeah, i would a least try to treat the infections just to see what happens. It can't hurt to do a round or two of antibiotics or antivirals.