caring mom

Thank you everyone for your wonderful welcome and for your good wishes. Kimballot, I certainly do plan on "paying it forward" in any way that I can. I would be glad to answer any and all questions that anyone has for me and will continue to keep everyone posted on our journey. Lfran, the urine test Dr. Lin ordered is from Great Plains Lab and is called the Microbial Organic Acids Test (MOAT). Normally Dr. Lin orders a stool test, but my husband and I are having to pay for everything out of pocket so Dr. Lin said this test would be a cheaper way for us to go. It measures among other things something called HPHPA (which are clostridia markers). My daughter's number came out at more than 5x the normal amount. I had no idea she had any issues with clostridium as she never had diarrhea or complained of stomach pain. I believe the MOAT test cost us $145.00. Caring Mom

Wow, that's quite a drive! Are you still seeing him or did you wind up going to see another doctor? I feel so fortunate to have him on my side as he doesn't kid around with this disorder. His approach to treating PANDAS seems to be very aggressive and he escalates things quickly when needed.

Hi Everyone, I'm a newbie but have been reading the Tourettes and PANDAS forums for quite a while. I am writing this to say thank you from the bottom of my heart to all of you. You were there for me during the darkest moments of my life and never knew it. My dd(6) was diagnosed with Tourettes about 18 months ago. I was devastated and quickly starting looking for anything I could do to help her. Nothing, and I mean NOTHING I tried made a difference. Some of the things I have tried include: Natural Calm, probiotics, multivitamins, NAC, taurine, NAET for 1 year, Nystatin, Topamax, a chiropractic neurologist, and a corn free, dairy free, yeast free, gluten free diet that has left me making all the food my daughter eats from scratch (I HATE to cook!!). Despite all my efforts, I never saw any long-term improvement in her tics. She actually seemed to be getting worse. Our main issue is a vocal tic (a cross between a hiccup and a cough). When she's waxing I hear it all day long (every 3-5 seconds). I started out on the Tourettes board but somehow found myself curious about what PANDAS was. I read the forum like crazy and thanks to all your posts I began to see that my daughter may indeed have something else going on. When she started ticcing it was right around the same time she had a sinus infection. She wound up having 3 sinus infections in an 8 month period. She received antibiotics each time and the tics went away after the first two infections but not after the third. I saw two neurologists who both diagnosed her with Tourettes based on her tics and the fact that my sister's son was diagnosed with Tourettes (he is the poster child for PANDAS but that will have to be a different post). Both neurologists flat out told me there is no such thing as PANDAS. I didn't care because your stories were always there in the back of my mind and I knew the doctors were wrong. I thought a lot about making an appointment to see Dr. K or Dr. L but the truth is my daughter didn't/doesn't seem to fit the PANDAS profile. I went over Dr. K's checklist of PANDAS symptoms about 20 times. She doesn't meet the criteria. Her only major issue is a vocal tic and a mild sensory issue with clothing. No OCD (I love the list you created), no rages, no changes in handwriting, no separation anxiety, no sleep issues, etc. I was afraid of being laughed out of Dr. K's office and spending thousands in the process (I live in CA). However, one day Phasmid posted about seeing a doctor in Irvine named Dr. Lin. I figured he's practically in my backyard so what do I have to lose? I almost fell off my seat when he said he thought there was a 75% chance that she had PANDAS. After ordering some blood work and a urine test we found out that her Anti-DNASE B strep antibodies were elevated (not her ASO) and she had extremely high levels of yeast (despite the anti yeast diet we have her on) and clostridium. Dr. Lin diagnosed her with PANDAS based on her lab work and history and started her on a treatment plan. She is currently on 5ml of Azith 2x/day (200mg strength), Flagyl (we just finished 2 weeks on it) and Fluconazole for 2 months. The improvement I have seen is TREMENDOUS! In the back of my mind I am terrified of losing the gains we've made but for now I'm breathing again for the first time in 18 months. I still have doubts sometimes that she really does have PANDAS but at this point I don't care what she has. She's responding wonderfully to treatment and that's all that counts. The bottom line is, without all of you she would never have been diagnosed. You have made such difference in her life and in mine. Thank you all for being so brave and for sharing your heartache, pain, knowledge and especially your moments of triumph. You have given me back something priceless that I never thought I would ever feel again...you have given me back hope. May god bless all of you!! Caring Mom

Thanks for the link - I'm going to give the s. boulardii a try!

Floraster and s boulardii are the same thing? Thanks for that info! I already bought s. boulardii from Kirkman and was planning on starting it today. I emailed my daughter's DAN doctor because I too was under the impression that s. boulardii was good for clostridium. He wrote back that it is a yeast and he didn't think it would be of much help for the clostridium but to go ahead and give it anyway because it will help with the yeast. Like Trg girl, I'm also wondering how much one can give of the s. boulardii. I asked in my email but the dr. didn't answer!

My daughter's doctor said we could go on Vancomycin if things didn't improve with the Flagyl. He never mentioned another round of Flagyl but at the time we were talking my daughter had not shown any improvement and he was thinking of stronger options. He did tell me she could only be on the Flagyl for 2 weeks because it affected the liver. He told me to do the prescribed regime for 1 month and then call him with the results. I have 2 weeks left to go before the phone consultation (unfortunately, I have to pay $175 for every 1/2 hour I talk to him so I can't call whenever I would like). I figured I could bring it up with him in 2 weeks, but being the control freak that I am, it's hard to sit and wait another 2 weeks thinking the bacteria might be growing again because she's off the meds. I will go out tomorrow and buy the Floraster. Thank you for your help - at least I feel like I am doing something!

Interesting about the Floraster - where do you get it? Does it contain the strep strain as well? I'm definitely open to trying a new probiotic as long as it doesn't contain the strep strain. Do you give it once or twice a day? How many CFU's does your daughter get a day? Here is my daughter's story in regards to her sinus infections. When she had her first infection she started making noises in the back of her throat. The doctor assured me it was due to drainage. She gave her antibiotics and the noises went away. About 8-10 weeks later she looked sick again, very tired and was making her noises again. I took her back to the doctor and she was diagnosed with another sinus infection. We got antibiotics and the noises went away. Another 8-10 weeks go by and its the same story all over again. She gets more antibiotics but this time the noise doesn't go away. Finally the doctor orders a sinus xray and informs me that my daughter's sinuses are clear and that the noise she is making is a vocal tic. I get sent to a neurologist and he diagnoses Tourettes (after her second infection she developed a slight neck tic so she had a motor and vocal tic). She has not had another sinus infection since - August will be 2 years. She is very healthy otherwise and hardly ever gets sick. If she does get sick it is usually a 12-24 hour virus. However, she continues to have tics every day. They wax and wane but are always there. Since starting the Flagyl though they have reduced dramatically. That's why I'm so scared things are going to go downhill again now that we've stopped. I'm going to look into the Floraster!

Hi Melinda, I'm a newbie here too. My dd(6) got diagnosed with PANDAS 1 month ago. I'm so sorry about all you have been through! I see that your daughter struggles with Clostridium. My daughter just finished 2 weeks of Flagyl for high Clostridium levels. I was shocked to see how high her clostridium markers were (over 5x the normal limit). I was wondering why your daughter keeps getting reinfected. Is it from antibiotics? I have seen such improvement with my daughter's tics since starting the Flagyl and I'm worried that all the progress we made will be lost now that she's not on it anymore. Do you know if there is anything you can give to keep clostridium away? I have my daughter on high levels of probiotics and I'm adding s. boulardi but I don't know what specifically targets clostridium. Any suggestions? Caring Mom Caring Mom- I didn't realize you could test for markers...Quest Labs just writes "detected" on results. I was told in 2006/2007 that it was the probably the same infection, just not properly treated. I'm not so sure...my daughter was on constant abx due to sinus infections. Just recently, i think it was because she was on 12 weeks of prevacid which lowers the stomach acid, leaving you vulnerable to other GI infections. Could be wrong though. Was your daughter retested? I always give my daughter Florastor in the morning and now experimenting with different probiotics in the evening (culturelle, custom probiotics, VSL#3). I also give her good belly non-dairy individual drinks (found at whole fields). Good Luck and please keep me posted! Hi Melinda, My daughter did a urine test through Great Plains Lab. The urine test also tested for yeast/fungal metabolites (also came out very high despite us being on an very strict and extreme anti-yeast diet for 16 months now!!), bacterial metabolites (including clostridia markers) and some other indicators that I have no idea what they are:) My daughter had three separate sinus infections in an 8 month period. They were about 8-10 weeks apart from each other. Her tics went away after the first two infections but only temporarily. They stayed after the third sinus infection and are still here. She was originally diagnosed with Tourettes and most recently PANDAS. I have the people on this forum to thank for that. After reading the countless stories that people poste here I realized my daughter might have something else going on. Right now I have my daughter on Custom Probiotics (lactate free)twice a day and am going to be adding the s. boulardii tomorrow. She is on Fluconazole and Azith 2x/day. I heard about Culturelle supposedly targeting clostridium but with everything else that she is on I don't know if we can add that as well. I guess it couldn't hurt? Anyone want to chime in? Take care Melinda! Caring Mom

Hi Melinda, I'm a newbie here too. My dd(6) got diagnosed with PANDAS 1 month ago. I'm so sorry about all you have been through! I see that your daughter struggles with Clostridium. My daughter just finished 2 weeks of Flagyl for high Clostridium levels. I was shocked to see how high her clostridium markers were (over 5x the normal limit). I was wondering why your daughter keeps getting reinfected. Is it from antibiotics? I have seen such improvement with my daughter's tics since starting the Flagyl and I'm worried that all the progress we made will be lost now that she's not on it anymore. Do you know if there is anything you can give to keep clostridium away? I have my daughter on high levels of probiotics and I'm adding s. boulardi but I don't know what specifically targets clostridium. Any suggestions? Caring Mom

Hi Faith, This is my first post although I have been reading the Tourettes/PANDAS boards for quite some time. I always promised myself that I would write in and tell my story when I finally had something valuable to share with others that worked. Unfortunately, until very recently NOTHING has. To make a long story short, my dd6 was diagnosed with Tourettes 1 1/2 years ago and finally with PANDAS 1 month ago. Like your son, her biggest/only major problem is a vocal tic (sounds like a cross between a loud hiccup and a cough). When she's waxing she does it every 3-5 seconds (the sound drives me NUTS). Her only other issue is a very mild sensory issue with clothing (things aren't tight enough). I tried soooo many things to help her. We tried Natural Calm, NAC, taurine, fish oil capsules, probiotics, multivitamins, NAET for 1 year, topamax, Nystatin powder, and a very extreme and strict anti-yeast diet that has left me a slave to my kitchen as I have to prepare everything for my daughter from scratch (and trust me I'm no Rachel Ray!). Despite everything we have done we have seen NO improvement in her tics! She reacted negatively (tics always spiked)with every supplement/therapy we tried. As a matter of fact, after doing all this for 1 1/2 years she seemed to be getting worse, not better. I was feeling so depressed and desperate that nothing worked for her and I was "killing" myself for nothing. Thanks to all the advise and awesome information on the PANDAS board I took her in to see a recommended Dr. in Irvine, CA just to run some blood tests (her tics started around the same time she had a sinus infection) and he wound up diagnosing her with PANDAS. I was shocked as I really didn't think she fit the PANDAS profile. We did some blood and urine tests and found that she had elevated anti-DNASE antibodies and despite being on the anti-yeast diet and Nystatin for 1 year her yeast levels were still very high. Now you should know that she was only on very minute amounts of Nystatin because even at the lowest dose her tics spiked so much I had to stop (we tried lowering and increasing her dosage for over 1 month and everything made her tics worse). Her urine test revealed that she had very, very high levels of HPHPA which are clostridium markers. I have no ides how this happened and she showed no signs of it (diarrhea or stomach problems). I would have never known she had any clostridium issues had it not been for this urine test. She is currently on Azith 5ml 2x/day , Flagyl 2x/day (for 2 weeks) and Fluconazole for 2 months. She has shown GREAT improvement (I sure hope I'm not jinxing myself here!). I think the Flagyl is what really helped. She was on the Azith for 2 weeks before we started the Flagyl and it wasn't until I added the Flagyl that we saw the improvement. I know someone else wrote in about possibly checking for bad gut bacteria and I think it's a good idea. I don't know if anything I wrote is of help to you but treating for clostridium is the first thing that we have done that has given us some really good results. I'm so sorry for what you are going through and I hope that you will find something to help your son soon!! Caring Mom