cara615

We have only tested for Lyme. No Co infections. I think we may have to do this. Bradstreet wants the 23andMe test results first. He thinks methylation is part of the picture and we need to deal with it. i have sent in the kit 2x already and both times they could not get enough DNA on DS. I am trying for a third time. Any tricks to get a good sample of DNA in the test tube? Its a saliva sample. i do want to test for co's and i think that will be next on our agenda. However, he does not have any typical symptoms of bart. Not sure if you need them though....

DS has been doing great on BRAVO. Most vocals are gone and if they are there they are so quiet no one would notice. he still has motor tics though but they have been very mild. After about 2 weeks of school the motors started ramping up. Dr. Bradstreet believes that exposure to all the germs in school is causing the flare. DS is on azithro 2x a week and we tested him and his brother for strep and both were neg. So this is just an exposure flare or a virus (common cold) causing a flare. i have been treating with motrin 2x a day and its helping but that is not a long term solution. Dr. Bradstreet called in Mobic. Has anyone tried it? Is it more effective than ibuprofen? Its an NSAID too so I am not sure how much better it will be. i also ordered CBD oil and I hope this does the trick. my question is: How long before his immune system will calm down or will he flare all year because of all the germs in school? i am of the belief now that we need to treat the inflammation. The abx just keep him strep free but managing the inflammation will keep his symptoms (tics) down to a low level.

Yes, i really feel like this is an adrenaline dopamine thing. Is there anything I can give him (naturally) that could lower the dopamine? For some reason i think this is just another "phase" that we are going through and that in due time his tics will be heightened by something else other than physical activity. it weird but over the past 2 years it seems like his tics are triggered by different things at different times. There was a point where he ticced mostly when he was eating, other times when he hungry or tired, other times when he would have screen time. But not all at once, you know what i mean? Right now he is practically tic free (not 100% but not detectable by the average person) except when he does physical activity. Just plain weird.

At first I thought it was because he was outside and that maybe it was allergies but now he has been at gymnastics (indoors) 2x and both times his tics increased. Right now we are at a very very low level of tics. Vocal are pretty much non existent and motors are so few and far between its like he is tic free. Except when he engages in physical activity like running or gymnastics. Also, when its very hot out (which it is right now) they seem to increase and he is getting over heated easily. I think there is a connection. What should I be looking into? I feel like we are so close but missing a component to his path of healing. And of course when I see a tic, my PTSD goes into over drive.

Spoke with Bradstreet, apparently i read the report wrong! The test was for unprovoked metals testing but we provoked DS with DMSA so of course he was going to show higher levels of metals. According to Bradstreet its all within normal ranges and we do not need to chelate. I feel relieved. However his tics are not gone. They are pretty low (vocals are quiet and hard to hear and motors are low key and few and far between). Well, except for this bottom lip pouty thing he has going on. So even though he may look normal to outsiders, to me I see him ticcing contstantly. Bradstreet seems to think we have great gut healing and its going to take time for his immune system to heal and for the tics to resolve. I want to believe this and be patient but i will give it 3 months (maybe) and if things are not better I am getting more testing. DS's brother just had a T&A and tomorrow we find out the culture results of the tonsils. in the meantime I am giving DS calcium Bentonite Clay baths to replenish trace minerals. They seem to help - anyone ever use these?

LLM what a fantastic answer! It wasn't my question but wanted to let you know how very helpful you are in your responses.

Wow, the test didn't measure copper??? Weird. His Mag levels have always been fine, not sure about Calcium or Lithium. I am assuming these are important to test for as well (in regards to metals)?

Unfortunately IV chelation is not an option for us as DS is irrationally afraid of needles and I will not subject him to that kind of torture. So Bradstreet hopefully will have another option for us. Bradstreet is totally aware of how DS reacts to needles so I am thinking he will have other options. We see him in person because we live 20 minutes away from him. I am thankful for this. I have heard great things about Chlorella and Cilantro, especially for lead and even if it takes longer to chelate, I am ok with that. Going slow is the only way to go especially in children. DS is doing great right now and school is starting in 24 days, I do not want to disrupt his stability right now so I would only opt for something that would be very gentle on him. Since yeast is an issue for him, IV chelation is not something I would want to deal with right now anyway. There has to be other options. I will let you know once I speak with him next week. Thanks for all your input, I do appreciate it.

First I would like to mention that my son's OAT test results came back and because of BRAVO probiotic, his gut is practically normal!!!! Clostridia is GONE, all bad bacteria is now in normal range, yeast markers are all low except Arabinose (but I think its high because of all the apples and blueberries he eats). We are thrilled with the results for his gut and we can tel because his tics are at an all time low. However, his metals test came back with 3x the amount of normal lead allowed in a child. I think it needs to be under 3 and he was a 9. On the reference range of green, yellow and red, his was in the middle of yellow. So not SEVERELY high but high enough to warrent some sort of chelation. He also had slightly high Barium, Thallium, Cadmium and Cesium. I swear I have no idea how these metals got into his body with the exception of the Barium. When he was 3 months old he had 2 upper GI series (Barium Swallows) so I suspect that his little body is not detoxing these metals and they have remained in his body for years. The lead is concerning because of all the horrid effects it can have on a child. Thankfully ds is so smart and does so well in school but could he be doing even better? Is his IQ being affected by this lead burden? We have done hair and blood tests in the past for metals and they were ALL normal. This current test was a urine challenge test using DMSA and then taking his urine over 6 hours. I am not sure how to take all three of these tests together and make an analysis. I will talk to Bradstreet next week about this. As far as chelation goes, I am thinking about Chlorella and Cilantro. Anyone ever use these and get the LEAD OUT??? lol I need some comic relief from all this crap.

DS is tolerating the prophylactic dose of Azithro!!!!!! He is not backsliding on our days without abx!!!!! The interesting thing is that he gets a little hyper/manic after getting the dose. I am thinking its because its 250mgs (very high for him) and his body needs to get used to it still. He has only had 3 doses so far and it seems as thought the hyper behavior is lessening each time. (fingers crossed). We are now on 4 TBSP a day of BRAVO. Still no vocal tics!!!!!!!!!!!!!!!!!!!!!! However, he still has 3 motors 1) head nods (they have lessened in intensity from head jerks) 2) eye blinks 3) lower jaw movement (its a back and forth movement). These motors are not constant either which is good. So I am hoping they will lessen over time as well (as long as we can stay healthy). His brother is done with the 10days of Clindamyacin/rifampin for his latest case of strep. We go tomorrow for a follow up culture and then on July 30th T&A. if we can keep his brother strep free, we will be in a good place. i realize that things change daily over here and we are still in such a fragile state. But I really want to give the credit to BRAVO for getting rid of all the vocal tics, I truly believe it was the thing that did it.

I love that you can be real here. I appreciate and value that. i could have put all my frustration, anxiety and anger towards something else. But instead i took up the easiest most familiar vice I knew: smoking. Its the only thing that helps me through the really uncertain times. I see it for what it is, I am hurting myself but I am also too weak to stop right now. And to know I am not alone in this makes me feel a little better. GOOD LUCK qannie! You are doing a wonderful thing and I know you will be able to kick the habit. I am rooting for you!!

Funny - I quit in 2006 and cheated here and there and really quit for good in 2010. Then we got our PANDAS dx and I'm back to my parliaments. Its been over a year now. I can't forse me giving it up anytime soon....... I know I have to eventually though...... I'm 40 now.....

We have done the following: ALCAT - food sensitivity testing ($300) Nutra EVAL - tests for vitamin deficiencies, amino acids, metals, methylation function, mito function ($1,000) Genova comprehensive stool analysis - tests for yeast, bad bacteria and parasites ($550) ASO Anti dNase-B - covered by insurance Immune function panel - covered by insurance Micro OAT - tests bad bacteria and yeast in the gut ($199) Cunningham Panel - ($945) Labcorp Western Blot - covered by insurance mycoP titres, H. Pylori test - covered by insurance The OAT and the ALCAT have been the most helpful for us so far.

We are not chelating, just doing 100mgs of DMSA to test the urine. Hoping it doesn't cause a flare...

We are doing one on DS and challenging him with a chelating agent called DMSA. Has anyone done this and has it exacerbated your child?

DS's vocal tics are gone. All we have left are three motor tics. Head jerking, one eye squint and forearm jerks. The arm jerks are getting less and less but the head jerks are still pretty constant and the intensity is moderate. I am not sure if this is related to his brother's recent strep infection that we can't seem to kick. Brother has been on clindamyacin for 7 days now and I just added in rifampin which he will take for the next 4 days. We are moving PANDAS ds to a prophylactic dose of azithro which I hope will allow the Bravo more time to work its magic on his gut. Taking bravo while on daily abx can't be doing that much good!!

i just got off the phone with Bradstreet and he seems to think the high tubulin titres suggest a possible Mercury burden. So we are going to do a urine test while provoking DS with 100mgs of DMSA which is supposed to give us an idea of how much Mercury burden his body actually has. i have given him cod liver oil since he was 6 months old - Nordic Naturals. I wonder if there is mercury in there. I stopped giving it to him about 6 months ago. As far as tics go, ds is vocal tic free. This is the first time in over a year and a half that he is not doing any vocal tics. He does however have 3 motor tics with one being head jerks. I HATE THOSE!!!!!!!!!!!! Another factor is that his brother has had strep 4 times this year with the latest case being in May and keflex did not kill it. He is now on clindamyacin with rifampin and will have a T&A on July 30th. I can't have him getting strep 4x a year and setting his brother off. As for PANDAS ds, we are moving him to a prophylactic dose of azithro (250mgs 2x a week). I am so scared that his tics will come back. i am praying he can handle the reduced abx especially since the Bravo has been healing his gut.

Rachel, yes, we have been seeing an integrative MD for over a year before we got the PANDAS dx. We did food sensitivity testing and removed the offending foods, we looked into methylation and supplement with a Methyl B complex, we looked at yeast and gut health and have treated yeast in the past as well as currently, we also supplement with glutamine. We have looked at environmental allergies as well and I know that ds is sensitive to way more than what came up on the test. however we do give an anti histamine when allergy season is around and it helps. I am convinced that since his strep titres are normal and he does not have any other active infections (although we need to test for viruses). That his gut is the culprit right now. Detox is an issue as well and we supplement with NAC (until recently). Now we have replaced the NAC with Protandim which creates more glutamine and stops oxidative stress way more effectively than NAC. i will let you know how it goes. i speak with Bradstreet on the 23rd to go over the Cunningham Panel. I think that since he does show elevated auto antibodies (and ones associated with Sydenham's Chorea = tubulin) that those are the cause of the tics.

SSS thanks for weighing in I do appreciate it. I am so beaten down by this disorder and how to get rid of these freaking tics that I have aged 10 years. I am so tired of playing doctor. So so tired. We have a fabulous PANDAS doctor but if I called him every time I had a question, I would be broke. Its just not fair what we all have to go through.

Oh and I KNOW my son has PANDAS because every time his brother has strep his tics go through the roof and then subside when his brother goes on abx. There is no doubt in my mind that this is PANDAS.

SSS the test did not say that he did not have PANDAS/PANS. I think because they were not able to test the D2 titres. I was under the impression that if any of these autoantibodies were in the high range that PANDAS/PANS is indicated. Have you read differently?

I should have an honorary MD with all the research I have. Its crazy really. i still need the D2 titres checked and Moleculara will run that test when they can get the supplies they need. I asked them to not charge me the full $925 for the test. They said no problem, the D2 test is only $40!!!!!! So ofcourse the piece they couldn't do is only $40 out of $925??? I think that is just nuts.

Cam Kinase II was 111 in the normal range. I am googling tubilin titers and Lyme and not finding any correlations. Where did you hear this information? DS tested negative on all bands for Lyme with Labcorp. Plus, he had been on abx for 6 months prior to the test. His immune function is normal so its not like he wouldn't have an immune reaction if Lyme were present in his body.

Everything was in normal range except for Tubulin which was 8,000 (high range). They could not do the dopamine 2 test because of some manufacturer's shortage. But D1 was in green, Lyso was in green and Cam K II was high end of green. thoughts?

Oh Rachel i only wish your statement were true. We are still on daily abx and so far every time i try to wean him from the abx his tics come back within 48 hours. We are also dealing with a brother who keeps getting strep (3x this year). These strep infections have set off exposure flares in my PANDAS ds each time. So as i think the BRAVO probiotic is totally helping, we are not out of the woods. Even with his tics so low right now, he is still ticcing. They are not completely gone. He still has an arm motor tic and still makes some noises which aren't really tics but then again probably are. Its so hard to tell because they aren't normal vocals like he was having in the past. Who knows, may be this is the course of healing?? I will feel better when I can get him off abx (or at least on a prophylactic dose) and give his gut more time to heal. I am also nervous about finishing our abx for his brother (who had strep). Apparently the first 10 day course did not get rid of all the strep because PANDAS ds flared once brother finished the abx. So I had extra and gave him an additional 5 days worth. Hoping this did the trick. We will know in 48 hours i guess....