cara615

My child has not but I am familiar with the process and would be willing to perform one if I needed to. This is why I mentioned Bravo probiotics because apparently its similar to giving a fecal transplant (just less gross). My only issue with fecal transplants is how do you know if the donor stool you are using is as "healthy" as can be? They give you a visual chart to determine what healthy stool looks like but my PANDAS son has the most beautifully healthy looking stool of all time and yet he is not 100% healthy. So how do you really know?

Would this be an issue if we are dairy free?

Very interesting rowingmom and proof that things affect our children differently. I've had ds on GSE since July. We started out slow - 2 drops a day. After about 4 days we saw die off. It was increased ticcing but also flu like symptoms (vomiting, fatigue, sense of feeling hot without fever). That lasted for 1/2 a day and immediately following his tics went down to a new low baseline. I stayed on the GSE for 6 weeks. Then I gave him a break and did not start it up again until November when we got our dx of PANDAS and started on abx. I guess I should consider nystatin or diflucan eventually. Just not sure when to start. Right now his tics are very minimal and he has no behaviors. We are in a good place but I'm constantly wondering if I am doing enough or the right things for him. you know what I mean?

Ds is on azithro 75/mgs daily. He is 6 and only 35lbs. i give him 8 drops/day of GSE (grapefruit seed extract). I was told that this was very powerful stuff and worked just as well or better than Nystatin at killing yeast. What are all of your thoughts on this? Many doctors believe that GSE will not kill yeast. How do I know if i am keeping the yeast at bay in my son's gut? His tics are almost back to baseline so I am assume that if we had a yeast issue, I would be seeing more symptoms than I am currently seeing. Right? Maybe I should order an OAT test to see how bad the yeast really is before I decide to switch over to Nystatin......

Before I know that ds had PANDAS we were treating him for TS/OCD/ADHD/anxiety through an integrated MD. She told us to remove gluten/dairy/corn and sugar. It took us 3 months to do it but it reduced his symptoms by 95%. In fact, when we finally went dairy free I saw a huge difference over night. These benefits lasted until ds got another strep infection and then the dx of PANDAS. I do believe that removing them helped to alleviate his toxic burden and inflammation going on in his gut. I hope to keep him on this diet for a couple of years to get maximum healing. His eczema went away too

Has anyone every heard or tried this? i think you order it from Italy and its a 3 day process to make it. Very Very expensive but its supposed to do the same thing as a fecal implant. Essentially repopulating the gut with healthy bacteria. Thoughts?

So I have a real life PANDAS Mom friend! i feel so blessed that we connected. Anyway I was over there yesterday and we were talking about what our PANDAS kids were taking and she mentioned GcMAF. She told me it was a macrophage and it helps elevate the nagalase in the liver? I am not sure I heard it all correctly and I did not google it (crazy cause I google everything). I do know that its a shot and it costs about $250/month. If any of you know more about this, please tell me more. I always worry that i am not doing enough for my son. UPDATE: Since his brother (non-PANDAS) has been on abx for strep, my PANDAS son's tics have decreased to almost tic-free. In fact, I was away from Mon-Thurs on a business trip and dh said that ds was pretty much tic-free. I am not sure I believe that since when I got home, I have been seeing/hearing them from time to time. But they ARE very very mild at this point. i wonder if I am bringing something into the equation that ds is building antibodies against. I think I need to test myself for infections!!! But back to GcMAF, is this something that would help him heal? Is it worth it? Thanks Cara

Well Ladies, his brother (non PANDAS) has STREP. It explains a lot. I actually feel relieved! We start him on amoxicillan for 10 days and retest after that. I need a glass of wine.

When I first "clued in" to what my ds may or may not have, things got worse very quickly. DS was first diagnosed with TS, OCD, ADHD and anxiety. So I immediately started with diet elimination, supplements, anti-virals for killing yeast, lots of blood tests and HANDLE therapy. i pretty much threw the whole kitchen sink at him and his tics skyrocketed. Looking back i believe that was his first true PANDAS episode (may 2013). After about 3 months of working on diet and supplements we got him to almost tic free and no other signs of behavioral problems. No OCD, no ADHD, no anxiety. he started school and was doing great. Then in Nov he had his 2nd episode (just tics this time) and that is when we got the dx of PANDAS. We started abx (amoxicillan, then keflex then azithro) and there was improvement but it was so slight and gradual. It would be two steps forward one step back. Every day was this dance until about 30 days in on the abx we were able to see that his tics reduced significantly. It was hard to tell day from day because the improvement was so slight. By the end of Dec he was practically back to baseline. Then in January he had a minor flare (he is on long term azithro now) and we are currently still in the flare. Some days i think its pretty much over and then the next day his tics increase in frequency again. The interesting thing with the flare is that the intensity of the tics does not increase, just the frequency of them.... Perserverence is what I am learning on this long PANDAS journey. i still don't know if ds has any co-infections, right now we just tested and are treating STREP. i guess you really need to give it those 30 days in order to determine if the abx is working for your DD or not.

Just as we have been seeing improvement coming off our 1st flare since dx, now we are dealing with a sibling's sore throat. I noticed my PANDAS kid's tics starting to get more frequent yesterday afternoon (mostly the same vocals). i didn't think much of it cause it vary's from day to day but then his brother told me he had a sore throat. This morning he still had the sore throat. It did not look red when I took a light to the back of his throat but i will take him for a throat culture this afternoon. ARGH I can't win!!!! Summer time where are you?????

I agree, our pediatrician was wonderful before we got into see Dr. Fier (Pandas Specialist). She was willing to prescribe abx for as long as we needed as long as we were seeing progress! Oh and our ped is covered by our insurance where Dr. Fier is NOT!

Yes, my ds's flaps were more like typical ASD flapping except he only would do one flap at a time, therefore I assumed it was a tic. he hasn't done it in ages. His 2 main tics right now are a a very low and quiet grunt and a slight head movement. he alternates but as time goes on they get less and less. Ds also grinds teeth from time to time as well. He has worn away a portion of his top two teeth! yikes.

I also want to be clear by what I mean as a flare. To me a flare is different then an episode. We have had 2 episodes and they were both major. My ds could not stop ticcing for a second. he was screaming on the top of his lungs 80 times a minute. Jerking his head to the point where we thought he would injure himself. He did bang his head on the wall and got a black and blue. He was flapping his arms forcefully. he would have not been able to function in school. Flares on the other hand is where his tics become slightly elevated from baseline. We have only had one flare so far since diagnosis so I can't say how severe they will ever become. The one we just went through was not that bad. Although it took about three weeks to resolve and we are still not 100% resolved. We are pretty close to baselone though. I have even experienced what I have heard described as a "popcorn" flare. This happened the other night and lasted about 30 minutes where he developed a brand new tic (turning his head to the left) every 30 seconds or so. It was weird but only lasted 30 minutes and has not returned. Ugh. So am I right in saying there is a difference between a full blown episode and a flare? Or do y'all use these terms interchangeably?

We take NAC to help detox. I think it works! Not sure about it helping with inflammation.

Ds still has all his baby teeth. Does every PANDAS kid flare when teeth fall out? Any kids that don't? I'm scared.

I agree, the anti dNase-B titres rise after the ASO titres rise so if you had a positive ASO then likely if you test again in a couple of weeks you will have a positive anti D-nase B as well. This would lead one to believe PANDAS is the cause. i would seek doctor more well versed in PANDAS for sure.

I think his flare is resolving, but very slowly. Again, his tics are mainly 1 vocal and 1 motor and they are a little less frequent each day. Other than that he is acting normally. ASO was 23.3 this time. In Nov it was just POS. different labs :-/ I'll give it another month and see where we are at. Thanks , you made me feel better tonight

I had to start a new thread because this post got lost in the other thread. In Nov ds was tested: ASO Pos Anti dNase-B - over 700 After 30 days of abx (amox, keflex, azithro) his tics reduced by 90% Jan - mini flare (increase in frequency of low intensity vocal tics) Titre re-test ASO Neg Anti dNase-B - 366 (still considered high) Based on this I would assume his titres are going down? Because if they were rising then ASO should have been Pos because that titre rises first correct? Just wondering if i need to increase the strenght of his abx. Right now he is on 75mgs/day of azithro. He is 6 and weighs 34lbs. So its an appropriate doage for his wieght. thoughts?

Mark I am in Atlanta (johns creek to be exact). We are seeing 2 doctors for my son's diagnosed PANDAS. 1) Dr. Tasneem Bhatia - Brookhaven - Holistic/Alternative MD. She has helped us with diet changes, methylation, yeast, food intolerances, etc 2) Dr. Fier/Dr. Vinson - PonceHighlands/Atlanta - Psychiatrist/Leading PANDAS specialist. Dr. Vision is currently treating our son for PANDAS (i.e. antibiotics) In our experience the diet changes/gut work has 50% of the equation with the antobiotics being the other 50%. hope this helps!

signed it!

Lab tests are back in. Nov: ASO - postive (above 200) Anti dNase-B (over 700) Tics were off the charts Jan: ASO - negative (23.3) Anti dNase-B 335 (still high) Tics are mild but still there (mini flare) My question is, does it usually take this long for the anti dNase-B titres to go down? Why were his tics better in Dec and now he is having a flare, albeit a mild one? Is it possible that his anti dNase-B titres reached a low point in Dec and now they are on the rise again but we just didn't test in Dec so we didn't know what level they were at? Should I think about a stronger abx? Or is Azithro 75mgs per day enough? He is 6 and weighs 35lbs. (little guy)

See? I knew my assumption could be wrong!! Thanks momwithocdson!! I feel good about using powdered now

You ladies are the freaking best. seriously.

I don't use fresh, just the powdered turmeric and I put it on his cheicken, eggs, whatever I can. he eats it no problem. I try to make sure he gets some every day. I would think that fresh would be more potent but I don't have scientific reasearch to back up my claim

Saw our PANDAS doc today. She thinks ds is doing great. She thinks its a mild flare and should peter out. Last night though he had gluten without me knowing it. He snuck a chicken finger that was breaded with a wheat batter. UGH. today his tics are not increased but did not decrease from the day before so i bet the gluten set him back a bit. Oh well. Right now we are just keepin on and trying to live our life and enjoy every day as best we can. This PANDAS crap is totally robbing me of this time with my boys. Every day I need to sit and focus on the NOW and realize that time is moving on even thought I am stuck on all this PANDAS anxiety. Its a battle everyday to enjoy this life but I am tryin to choose to do so.