caring mom

Hi Everyone, My dd7 has not been doing well since the end of January when she got sick (a simple cold). She was at 99% before that and since being sick she has starting ticcing again. She has been on Azith since last July and Vancomycin (for the second time) for 1 month. I put her on Vanco again thinking that the clostridia returned (she had been off Vanco for 5 weeks) and that's why her ticcing came back. The Vanco is at the same amount she was taking last time when it worked so well but she's not getting any better. I had never tried Motrin before and decided to give it a try to see if it did anything for her. I've only given it twice but both times her ticcing SIGNIFICANTLY decreased. She is 7 1/2 and about 45 lbs. I gave her only 1/2 a tsp both times, and unless it is pure coincidence, it worked both times very well. My question is that I called her Dr. to ask how long I can give it to her and he said only 1 week. He told me I was not giving enough to her and to up it to 2 tsp. Why would I do that if 1/2 tsp seems to be working? I am very suspicious of allergies (pollen, trees, etc) and I know that allergies can be a source of inflamation. Does Motrin help with allergies? She went to my folks over the weekend and didn't need Motrin at all (for 2 days). They said they heard her tic maybe 5 or 6 times the whole weekend. This morning I had to give her Motrin before she went to school and then again when she came home. I just can't figure out what is going on. From one day to the next I never know what I'm going to wake up to. Does anyone know of the reason why the doctor is insisting that I raise her dose? He told me to bring her in if she's not better in one week. Thanks in advance for any insight you can provide me with. Caring Mom

Hi All, Without going into a long history, my dd7 had been at 99% since December. She was diagnosed with PANDAS and clostridia back in July. Things were going great until she got sick at the end of January with what seemed to be a simple cold. When she got over her cold she started to ever so slightly tic again (she has vocal tic). I called her dr and asked to be put back on Vancomycin again (she had taken it for 8 weeks in November and December. Then when the prescription ran out I didn't refill it because I didn't realize the dr wanted her to continue on it anymore). Altogether she was off the Vanco for 5 weeks. I thought perhaps she got the clostridia back and was certain the Vanco would take care of it again as it has worked so well in the past (it had completely taken her vocal tic away). She has been on the Vanco for over 1 week now and things are not getting any better. The volume of her vocal tic is much lower than it was when she first got diagnosed back in July but it is definitely there. The dr had mentioned that if the Vanco doesn't work I should put her back on Diflucan for yeast. The last time she went on Diflucan she had WICKED die-off symptoms (2 weeks of bad vocal tics and horrible fatigue). I'm very fearful of trying it again as I don't want to make things worse. Right now she's taking 5 ml of azith 2x/day (she's been on it for 6 months now), 5 ml of Vanco 2x/day, 500 billion cfu's/day of probiotics, and Enhansa for yeast (she's not at the full amount she should be taking because she reacts so badly whenever I try to increase her amount). My question is how long do I give the Vanco to work? In the past, it worked within 2 days and it's been over a week now. Should I start her on the Diflucan in case it's yeast? I honestly don't know if she's yeasty or not. Some days her tics seem worse than others. Could it be allergies? We've had high pollen counts lately out here. Any suggestions or ideas? I feel like I'm watching my dreams go down the drain. I thought I had this under control. It's just heartbreaking... Caring Mom

Oh Peglem, I'm so sorry!! You have unbelievable inner strength to be able to deal with this situation in the way you have!! I can't imagine what it must feel like to watch your child literally undo hours of work right before your eyes, have to maintain your composure, and then clean it up and start all over again! I would be in a loony bin in by now and I shudder to think of what I would want to do to my dd. I also think your doctor needs to know what you are dealing with before Tuesday - you've given this medication more than a fair amount of time to work and it's just not cutting it! Please know that I am thinking of and praying for you and Allie!! Caring Mom

Hi All, I have been meaning to update on my dd but have been so busy. To refresh your memory - my daughter was diagnosed with Tourettes 2 years ago and recently (2 months ago) with PANDAS (based on history and blood work). She was put on azith 2x/day and still remains on it. For yeast she was given Diflucan and now switched over to a natural product called Enhansa. Her labs also came back with VERY elevated clostridia markers for which she was put on 2 rounds of Flagyl. We got off the Flagyl 11 days ago and she is doing phenomenal! Folks, thanks to the Flagyl her tics are 99% gone!! She had a vocal tic that we would hear every 3-5 seconds all day (at its worst). Now, I hear her maybe once a day if that. What remains is a very minor nose twitch which is not noticeable to anyone but me. I feel like I died and went to heaven! Interestingly, as the tics subsided we started to notice her having more emotional issues. She gets upset more easily, has more meltdowns, and there's more defiance. With school starting and her having to adjust to a longer day (she's in first grade now) I'm assuming that some of what we are seeing can be attributed to that. However, she seems to really be struggling socially. She has no problem making friends but she doesn't seem to be able to keep them. From the time she was about 2 years old I noticed that she tended to "annoy" other children at times (standing to close, touching too much, taking things away from them, etc...). We thought she would outgrow this and that perhaps she was just immature. However, this doesn't seem to be happening. Last year in kindergarten she literally made no friends. We had several playdates but no one seemed to want to continue the friendship after that. From what I can see of her interactions with friends (which unfortunately is very little) she seems polite but bossy and overbearing. Once she likes someone she becomes very clingy and touchy with them (wanting to hold hands, putting her arms around them, following them around,etc.). Of course this tends to turn them off and she loses the friend. I have talked with her several times about what she does and explained that other children don't like to be touched or followed around. I've even done pretend play with her, acting out different scenarios. It seems to go in one ear and out the other. Both her father and I have tried to set a very good example of how to be and treat a friend. We are social people and have numerous friends. I'm wondering if her behavior is part of PANDAS or is something else going on here? I know that children her age (7) are fickle with friendships but this is starting to affect her self-esteem as she comes home from school upset telling me that no one will play with her. This not only happens at school but in other environments as well. We are at the point where we are considering having her undergo neuro-psychological testing to find out if something else is going on with her. However, after everything that she's been through I don't want to drag her prematurely to yet another doctor. Can anyone relate to this? Any advice? Thanks! Caring Mom

My dd was on Flagyl for the first time for 2 weeks and within 2-3 days after we started I noticed a decrease in her vocals. Her motor tics which were always very slight and not noticeable seemed to increase a bit as the vocals decreased, but I wasn't concerned because they still weren't noticeable unless you completely stared at her for a while. By the time 2 weeks had gone by she was down to maybe 5 vocal sounds a day (this was after her ticcing every 3-5 seconds all day long). Within one week after stopping the Flagyl her vocal tics started coming back (25-30 a day) so her DAN put her on it again at double the dosage for double the time (1 month). Again, within 3 days her her vocals decreased to maybe 6 a day. Her motor tics continued some days more than others but not noticeable to anyone but her father and myself (she wrinkles her nose). By the end of 1 month we had maybe 1-2 vocals a day if that. Yesterday I heard her 1 time, some days I don't hear her at all. Interestingly, her motor tics are down too now that we have gone off the Flagyl. Please note that we changed A LOT of things at the same time with her. When we first started the Flagyl she also started Diflucan (for yeast) and heavy doses of probiotics (500 billion cfu's a day). After being on Diflucan for a while her DAN had us start her on Enhansa (for yeast). That is where we saw a lot of die-off and increase in her tics for a few days. I always knew it was the Enhansa and not the Flagyl because her tic increase always correlated to us increasing her Enhansa dosage (you have to build up to the optimal amount). I find it interesting that so many people have reported problems with tics increasing while on Flagyl. This is actually one of the first medicines/supplements that we have tried that DIDN'T increase our daughter's tics. Good luck to you and hope this helps! Caring Mom Caring Mom- Great to hear your daughter is doing better!! May I ask what probiotics you're using? And is she still taking the Diflucan & Enhansa? Thanks! Hi Philamom, Thanks for the good wishes! My daughter is using Custom Probiotics powder (the lactate free one). It has 250 billion CFU's per scoop (we give it 2x/day). We started the Enhansa after her Diflucan ran out. Her DAN wanted her on something natural after being on Diflucan for 2 months. She has been on the Enhansa now for a little over 1 month. I believe that the Enhansa is contributing to her doing so well but it is not an easy product to deal with. You have to slowly build up to the desired amount (increasing every 5 days or so). The first 2 times we increased we saw maybe 2 days of increased tics. Not a big deal. The last time I increased I only did 1/2 of what I was supposed to but it took her over a week to adjust. I came VERY close to quitting because we were moving in the wrong direction. The Enhansa pharmacy convinced me that her increase in tics was normal and to keep her on it. I only did so because I didn't want to put her back on Diflucan with all the other meds she was taking. I haven't increased since and don't plan to anytime soon. I was a wreck that week thinking I ruined all the progress we made. The pharmacy said as long as she is taking probiotics she should be fine with the dosage I am giving her. So at this point the only prescription med she is taking is Azith 2x/day and topamax sprinkle caps 2x/day (25mg). She also takes the Enhansa 2x/day and probiotics 2x/day. Hope things are going well for you - I haven't had time to read up yet on all the posts I've missed. Take care. Caring Mom Caring Mom

My dd was on Flagyl for the first time for 2 weeks and within 2-3 days after we started I noticed a decrease in her vocals. Her motor tics which were always very slight and not noticeable seemed to increase a bit as the vocals decreased, but I wasn't concerned because they still weren't noticeable unless you completely stared at her for a while. By the time 2 weeks had gone by she was down to maybe 5 vocal sounds a day (this was after her ticcing every 3-5 seconds all day long). Within one week after stopping the Flagyl her vocal tics started coming back (25-30 a day) so her DAN put her on it again at double the dosage for double the time (1 month). Again, within 3 days her her vocals decreased to maybe 6 a day. Her motor tics continued some days more than others but not noticeable to anyone but her father and myself (she wrinkles her nose). By the end of 1 month we had maybe 1-2 vocals a day if that. Yesterday I heard her 1 time, some days I don't hear her at all. Interestingly, her motor tics are down too now that we have gone off the Flagyl. Please note that we changed A LOT of things at the same time with her. When we first started the Flagyl she also started Diflucan (for yeast) and heavy doses of probiotics (500 billion cfu's a day). After being on Diflucan for a while her DAN had us start her on Enhansa (for yeast). That is where we saw a lot of die-off and increase in her tics for a few days. I always knew it was the Enhansa and not the Flagyl because her tic increase always correlated to us increasing her Enhansa dosage (you have to build up to the optimal amount). I find it interesting that so many people have reported problems with tics increasing while on Flagyl. This is actually one of the first medicines/supplements that we have tried that DIDN'T increase our daughter's tics. Good luck to you and hope this helps! 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 caring mom, wondering how things are going re the flagyl....are you still giving that? you mention your dd doing well on it and seeming to help? has that sustained? how are her vocals now? we are still struggling with vocals here. i did try one day of flagyl about a month back, but imagined an increase in vocals, so i did not continue. thanks for any update or advice you could give. where did you get those urine tests done that showed markers for clostridium? Hi Faith, Sorry I haven't replied sooner - I've been meaning to update but haven't found the time yet. The short of the long is that we have experienced nothing short of what I consider a miracle over here. My daughter's vocal tic is pretty much completely gone - I hear 1 tic a day if that!! The doctor had put her on 10ml of Flagyl 2x/day for 1 month and we just completed the month. She has been off of it for 4 days now and knock on wood she is doing amazing. There has been a lot of anxiety and stress around here with school starting so we have seen some increase in emotional issues and regressive behaviors but NO TICS! She fits right in with the other kids at school and no one would ever know what she has been through. The test our DAN ordered was from Great Plains Lab and it was called a Microbial Organic Acid Test (MOAT). One of the things it tests for is clostridia markers. My dd's DAN said she had one of the highest numbers he had ever seen. We had NO clue anything of this nature was wrong with her. She had only been on antibiotics 1 time since birth and she is now 7 years old. Of course, now it explains why nothing we tried (and we tried tons of things) ever showed any improvement in her tics. I believe Flagyl is our miracle drug. My daughter is now off her horribly restrictive diet and is eating normal foods again like other kids. I feel like I died and went to heaven! I only pray that the clostridia doesn't come back. One thing I would like to mention is that when her DAN upped her Flagyl to 10 ml (she was 5ml for 2 weeks before we upped it) she did have some side effects. She completely lost her appetite and basically stopped eating. It was very scary but luckily when she was at her worst her month was basically up. Now that she has stopped the Flagyl her appetite has come back with a vengence. She also got very tired on the Flagyl but it was worth all that she had to go through. I feel like she got her life back. I highly recommend getting the MOAT test done just to see what your son's levels are. I cannot believe how much we have suffered over here for 2 years with horrible vocals and no one ever suggested that clostridia could be our problem. It was not an expensive test (I believe $85) and it held all the answers we were looking for. Good luck to you and your son. Let me know if I can be of any other help to you! Caring Mom

Hi Matthews Mom, Just wanted to let you know I am in OC too (Rancho Santa Margarita) and thanks to some recommendations from people on this forum I too went to see Dr. Lin in Irvine. He diagnosed my daughter with PANDAS after I spent almost 2 years of thinking she had Tourettes. He has been very helpful and my daughter has improved greatly under his care. We are also at the beginning of our journey with PANDAS so I don't know what lays ahead but I feel very comfortable recommending him to you. I can definitely say he aggressive with his treatment and feels PANDAS is nothing to mess around with. He is very easy to work with thus far. Feel free to PM me if you want more info. Good luck!! Caring Mom

KMom, What about Kefir? I see that it doesn't contain s. thermophilus but has other probiotics in it (mine has s. diacetylactis and s. florentinus). Do you know if it's just s. thermophilus or anything with an S.? Do you do cheese? Caring Mom

JT's Mom, Thank you so much for responding! My daughter is on both antibiotics twice a day and it would be a big help to give her both at the same time. I keep remembering a post I read quite a while back that was talking about the importance of not giving antibiotics 2 hours before or 2 hours after any other medicine. Waiting that amount of time is what's killing me. Giving her the Flagyl and Azith together will allow me to fit in the charcoal in the afternoon 2 1/2 hours after the antibiotics and 2 1/2 hours before her probiotics and anti-yeast med. I will check with her DAN to make sure I can combine both antibiotics together. I wasn't aware this was done for Lyme treatment. I feel much better now. Thank you again for helping me to sort this out!! Caring Mom

Hello PhillyPA, I'm now going to show all of you how computer unsavvy I am. The way I found that thread on Dr T's advice on s. thermophilus was by typing in the word "yogurt" in the search bar at the top of the page. Then scroll down to tygertoo's post labeled Strep Thermophilus info from Dr. T.

I'm going to take the plunge and see what happens. I'm glad to hear it doesn't seem to affect your son Vickie. I'll pray for the same on our end - this would make my life sooooo much easier!! Thanks everyone!

Thanks for the responses everyone - I appreciate you trying to help me out. Vickie, what kind of yogurt and cheese do you use? I don't think my daughter will go much for milk either but I'm sure she'll want cheese and yogurt. I'm starting to think I might just have to try it out with the strep strain and see what happens. I was really hoping to find a yogurt that is organic with no additives or artificial flavors that doesn't contain the strep strain. I went to Mother's Market and every yogurt I picked up had it. If anyone finds a good quality yogurt or cheese that doesn't have the strain in it please keep me in mind! Caring Mom

Sorry for bringing up a topic that have already been discussed at length but I was curious about where you all stand on this issue currently. My dd's DAN has told me to reintroduce dairy into her diet after running an ELISA allergy blood panel and finding out she supposedly has no issue with dairy. She hasn't had any dairy in almost 2 years now. I have been reading previous posts about this issue and keep coming back to Dr. T's warning about cheese and yogurt products containing s. thermophilus. I was so looking forward to putting a container of yogurt or a cheese stick in her lunchbox but now I'm afraid to. Are any of you using yogurt or cheese? Do you see a difference? How long did it take before you noticed anything? We have not reintroduced gluten or yeast yet (this is coming next) and I'm at a loss as to what to give her for lunch. Last year in kindergarten I only had to provide a snack. The kids still made comments about what she was eating because it was different from all of theirs. It didn't seem to bother her too much but she's getting older and I know the comments will most likely get worse in first grade. I suppose I could just give her some yogurt or cheese and see how she does but right now we have so many variables going on. We started a higher dose of Flagyl and we started a new antiyeast product(Enhansa). If she reacts I won't know what she is reacting to. When I talked to my daughter's DAN he said there was no connection between the strains of strep. Does anyone know if Dr. T is still standing by his previous advice of being careful when using products containing s. thermophilus? I'd appreciate any input you can give! Thank you!! Caring Mom

My dd is going back to school in 3 weeks. She is on so many different medicines and supplements (which I'm sure is a common theme here) and I just cannot figure out how to properly give her all her medicines in the hours that are available in the day. I'm not even sure if I correctly understood all that I have read here on this forum in regards to dispensing medicine. Please keep in mind that I would prefer not to get the school involved in dispensing medication as I do not want to open a pandora's box with the school nurse as to why my daughter needs to be on long term antibiotics. Here are the questions I have: 1. Do you absolutely have to give antibiotics 2 hours apart from any other medications? (meaning if I give her Flagyl or azith at 6:00 I cannot give her any medicine after 4:00 and before 8:00) 2. Can you give 2 antibiotics together? (ex. Flagyl and Azith) 3. Can you give probiotics together with an antifungal for yeast? (ex. Custom probiotics and Enhansa) 4. How do you fit in activated charcoal??!! We just started Enhansa for yeast and from what I have been reading about it the die-off can be brutal (even if you were on an antifungal like diflucan previously). You have to increase the dosage slowly and by the time she goes back to school she will be on the highest dose possible. I'm terrified of her facing this without the benefit of activated charcoal. How do you all do it? Any ideas or suggestions would be most appreciated. Some info you might need to know : my daughter wakes up at 6:00am, starts school at 7:45, gets out at 2:05, and goes to bed between 7:00 and 7:15pm. Thanks for giving me to opportunity to learn from all of you!! Caring Mom