emma1

Kim, MRSA is awful, and the fact that it can become invasive, and people die is very concerning. I did note that some here with PANDAS are using clindamycin. That is one of the few drugs used to fight MRSA, so I would be a little concerned in using that. I would be concerned that if I was using clindamycin for the PANDAS, it might not work for my child if she needed it for invasive MRSA. I do have concerns about my child being on long-term antibiotics, especially when I read about these superbugs. For right now, though, the antibiotic is the only thing that helps.

Michele, I am so sorry that you and your son are going through all of this. It is so hard and confusing. I so know the feeling of being awake at 2 AM trying to sort this all through. With our case, I was in denial for a while, as was my daughter. We just kept going on like nothing was happening. Finally, I spoke to the doctor, and we did the strep tests because the onset was so sudden. She first took amoxicillin, and did pretty well, but still had some minor symptoms. Still, I was pretty pleased. Then, suddenly, I noticed more symptoms while she was on the amoxicillin, and my heart sank. I then learned that her best friend had strep. I called the doctor, and discussed the situation, and he decided to keep her on the amoxicillin for another 10 days. Within a day of her friend getting treated, my daughter was better again. We then tried it without antibiotics (but with other supplements). For the first couple of days, it was all good. Then, I thought I noticed more symptoms. By the time she had been off a week, well -- it was not good. This time I asked for the antibiotics you had mentioned. I ended up with augmentin. As I said, within an hour there was noticable improvement. I am almost afraid to say it, but right now, it is all good -- no tics at all, and I only noticed two very minor ocd things in the last seven days. I wish we could stay on this, but I don't think that is the plan. I find that when my daughter is doing well, I am very logical and calm, and listen to what people are telling me, and try to be very conservative and analytical in how I approach my daughters treatment. But, when the symptoms are bad, I freak out and would do just about anything to get them to stop. Not good, I know. I stopped everything now except for the antibiotic and her allergy med. I was beating myself up for going too fast -- my doctor advised to go slowly so I could try and tell what would work. But, he also said that sometimes something will initially help (perhaps because the body needs that supplement) and then later will not (because the body is no longer deficient in it). Or, you may tolerate a supplement for a while, and then suddenly develop a sensitivity to it. So, basically, if you go slow, and watch carefully you have the best chance of figuring out what is working -- but even that doesn't guarantee success. You are such a good mother trying all of these different things for your son!

Michele, I just picked up on your mention of arthritis -- it is an autoimmune disorder, right? I ask because I also have an autoimmune disorder. And PANDAS is autoimmune. Do you think that is all coincidence, or perhaps autoimmune disorders run in families?

Michele, I was looking on the Kirkman Labs site (I had spent three days looking at liquid vitamins on iherbs only to have my daughter nix taking a liquid -- so I was checking out all of their different multivitamins) and see that they have a lot of the different supplements that your doctor was recommending. For most, they have a pretty good explanation of why you would use them, side effects, recommended standard doses, etc. It might be a good resource to check out. Have you considered calling or emailing or faxing the protocal to Dr. Murphy and see what she thinks? I know most/many doctors don't know a lot about supplements, but I would think as she has dealt with so many PANDAS patients she might know more than most. Surely, she has a patient that has tried these alternatives. (Now, I do realize this is so individualized that what helps one won't necessarily help another.) I just keep thinking of my daughter last week. I had her on several different supplements, had cleaned up her diet, and had cleaned up our environment, and -- without the antibiotic -- well, we were not in good shape. Now, I do believe in the "bucket" theory somone proposed here -- basically, that too many affronts to the body's systems occur and then tics happen -- if you can lesson the affronts, the tics may lesson as well. But, I am here to tell you, for us, right now, it is night and day off/on antibiotics. We haven't used zithromax, which is supposed to be immune modulating, so I do not even begin to understand why the antibiotics are working. I am befuddled because my daughter is so old (16) -- could she just now be showing signs of allergy/sensitivity, yeast, toxic metals? Could she have pyroluria? I guess anything is possible. During times she is having significant symptoms, I am ready to try almost anything. And then we have a week like this, where even I am not noticing anything, and I wonder -- if it is pyroluri, or toxic metals, or yeast, or allergy contributing to the tics, why do the tics/ocd go away with antibiotics? I wanted to say one more thing about the Kirman probiotic. It has a "good" strep bacteria in it -- check the label. When I asked my doctor about that, he (who is just the family doctor and not a PANDAS expert) said that there was not enough research and so, in his opinion, as there were other options, he would use the other options, as there may be no "good" strep for PANDAS kids. You might ask your doctor before you start them though, because unless he deals with a lot of PANDAS cases, he may not even be aware of the strains in the product, and for most, the strains would be fine. Perhaps someone else can chime in here, because as I said, this is just one doctor's opinion. Michele -- sorry -- once again raising more questions than I am answering!!

Oh Michelle! I have been complaining that my doctor has so little supplement advice -- but this doctor sure doesn't have this problem, does he? His statement that PANDAS is life-long is very, very depressing indeed. I feel very good right now because my daughter is doing well, but last week, when she was off the antibiotics and the tics/ocd came back full force, well that was so disappointing. All I had read seemed to say that this would eventually go away!!! My initial reaction is that it is too much too fast. I had my daughter taking a little cupful of pills, and then without the antibiotic, she was taking a little cupful of pills with no good results! I didn't know what was helping and what was not. I believe that someone here has said not to use zinc picolinate -- I remember because I read it right after I had bought it and opened it -- I will try to find it for you if I can. (zinc is good, just not the picolinate form) B6 sounds reasonable -- though I have been reading that P5P is now preferred by some as being "more available" for use in the body. GLA I think is omega 6 -- so there is that whole issue. The nystatin is for a yeast issue I guess? My concern with using that was having symptoms of die-off (increased tics and ocd) and then not knowing whether my other supplements were working. If doing all of this works, and gets your little boy healthy -- that would be fabulous, though. I am just such a chicken. My daughter is in high school, and has such an active social life, I hate to do anything that is going to even temporarily increase symptoms or make life harder.

Cheri, I just want to thank you for bringing this to my attention. In my efforts to help my daughter, I had put her on all of the supplements you just mentioned. Yikes! I am starting over, and am going very slowly this time. Right now she is on an antibiotic and a probiotic (taken separately, at least three hours apart) and that is all, except for the allergy med Zyrtec. I am planning to add a mutli, and after that omega 3. If I can get past that, I am planning to look at calcium and magnesium taurate, and GABA, and maybe some extra B vitamins. I am looking for someone to help me with this like you suggested. My doctor is fabulous, but doesn't seem all that up to the minute with all the nutritional supplements.

Kim, Thanks so much for posting all of this. You are so smart!! Emma

ad_cci, I am so pleased that your child is doing better. Michele, sounds like your is doing pretty well too. My daughter is so much better on antibiotics. I took her off everything else I had her on (I realized I was totally uninformed about immune boosting vs. immune modulation -- I had her using grapeseed which is a no-no, and my Omega had omega 9, another no-no), and she is doing good. However, right now she is still on regular dose antibiotics -- I am wondering how she will do on the low dose therapy. I feel like I am back to square one with adding supplements -- I'm almost afraid to add anything, but know I really should! And, I am concerned about whether we will keep getting these great results once we switch to pen v. So many unknowns! But, I am pleased to see you two are doing well -- gives me hope!!!!

I just reviewed the Bontech ingredients again, and I see that they contain Grapeseed Extract, which I thought was not good for those with autoimmune disorders (like PANDAS). Chemar just informed me of this on another thread. I had been using Bontech, but decided to stop because of the Grapeseed, and because when we went off antibiotics, I did not see that we were "improved." I want to thank all of those who keep trying to help me understand this. I know I am getting so much more from this site than I am giving, especially as my daughter's situation seems to be so unique (PANDAS-type in a 16 year old)!

Cheri, Thank you so much for your reply. I have so much to learn!!! I checked your son's protocal and did see you were giving him Grapeseed and Inositol. So, do you still give those, even with the Crohn's, or did you stop those after diagnosis of Crohn's? (Or perhaps they are OK, but in lower doses?) Are there any other commonly used supplements that I should be avoiding -- magnesium, zinc, lecithin, etc? Again, thank you so much! I realize now that I need to so very, very slowly. I am still trying to figure out the right multi (looking at those liquids!), and then I am going to add slowly. Last time, I thought I was adding slowly, but because she was on the antibiotic, I really didn't have a clue what was/was not working. While on the antibiotic all was pretty good, and then we stopped, and things got crazy again (and she was taking a cupful of pills each day). Emma

Just a quick note, as I need to run. Michele, if the cyst was cultured and came back negative for MRSA, then I would not worry. These tests are pretty definitive. Kim, there is a staph infection and an MRSA infection. Both are staph, but MRSA is more serious. MRSA usually causes more significant infections, and because it is resistent to many drugs, harder to treat. About 30 percent of the population will be colonized with regular staph at any given time (that means there would be staph colonized on their skin or nasal passages). If someone has repeated MRSA infections, that person might be colonized. If you are concerned, a simple nasal swab and skin swab can show if you are colonized. The treatment is an antibiotic ointment in your nose and hibiclens for bathing. (Though some doctors don't believe in this -- but many ID doctors do.) However, again, regular staph and MRSA are different. If it is a regular staph infection, I would be much less concerned, as it is not the same as all these news stories.

Ad_cci, My daughter is older, but had tics/ocd start suddenly and has very high strep titres. Her symptoms dramatically improve while on antibiotics. She also takes Bonnie's vitamins. For about a week after we stopped antibiotics, she was pretty good -- some symptoms but mild. Then, it was like we were back to square one! She was put on another course of antibiotics, and once again we are OK -- the symptoms are not gone, but they are at the level that only I notice them. I saw your child was PANDAS, and so I was wondering what else you had tried. Chemar indicated to me that some children with PANDAS have found success on the Bontech vitamins, but that they are designed for children who have TS. (I am a little confused on that -- if your child develops a tic from a strep infection, and it lasts more than a year, do you have TS?) Anyway, from reading posts, I am thinking different supplements might be in order for a child with PANDAS. But, I am also getting the feeling that each situation is different, and that even if your child is PANDAS it is not one size fits all. As my daughter is older, she is supposed to take something like 15 pills. Once I get those in her, with the antibiotic, it is hard to ask her to take even more. It was very disappointing to see her back with symptoms when off antibiotics. From what I have researched fish oil is very good (though you have to find one with Omega 6 or Omega 9, which is hard). That seems to be the only supplement everyone agrees on -- and even then, some children will react to the fish oil and tic more! I have been giving my daughter a supplement that has Omega 9 in it, and stopped that yesterday. I am also thinking of adding inositol (my doctor actually suggested that and I had been reading independently about it) for the ocd symptoms, and either grapeseed/opc or monolaurin to improve the immune system. We already use two probiotics (because of all the antibiotics) and I am thinking about digestive enzymes. She also takes Zyrtec, and I know this sounds crazy, but I think it actually helps too. I have only had her on the Bontech for about 5 weeks -- maybe that is too short a time to know anything. So I am also thinking of staying the course, as I believe they recommend two months minimum. As I re-read my post, I am not sure how this could help you -- sorry!!! Good luck -- I so hope this works for you.

Does anyone know about safe limits for inositol? I just finished reading a study where they said 18 grams was a safe/effective dose. That seems like so much!

Chemar just explained on another thread that Omega 6 was not good for children with PANDAS. I just wanted to point out that Omegabrite does have Omega 6 in them. I didn't realize it until I looked at the box this morning.

I am starting over (again) trying to figure this out and am thinking I should start with a good multivitamin. My daughter has tics and high strep titres. She is 16 years old. Does anyone have any suggestions? Are Bonnie's vitamins a good choice in a PANDAS situation? Thanks so much!

Dedee, I was going to have her stay on amoxicillin, but had tried to cut out artificial colors and preservatives. The amoxil we had were pink. Is your child taking a tablet, and is it pink? My husband said he was certain that there were capsules. At the time we were on 875 mg twice a day -- I am assuming she would be on much less as my doctor said the long term dose would be low dose. I remember the Omega 6 discussion too -- Michele was asking about it -- her child has PANDAS and pyroluria. Thanks so for your information.

Chemar, Thank you so very much for the information. I so appreciate your help. I do have two questions. First, could you tell me what an immuno modulator is -- I believe zithromax is suposed to do that, but my doctor is opposed to using that right now. Also, could you tell me the types of tests that would beneficial. Again, I thank you so much.

I just wanted to say, that because my daughter is older, I still had some questions about how and if the strep actually played into all this. Within 24 hours of going off antibiotics, I noticed a difference. The symptoms were still mild, but more pronounced. Exactly one week off, and suddenly, it just went back to symptoms as bad as we've had. If I still had any doubt -- within an hour or two of taking the antibiotic, everything calmed down again. I am so grateful for the antibiotic -- but it sure does make me wonder about all the other supplements I am "making" my child take (it really bothers her taking a handful of pills). Michele, I am going right now to check out those websites. Thank you so much. Dedee, I am so with you -- how much do you push and when do you back off? I thought these supplements were really helping, but without the antibiotic -- well, we would be a mess, I'm afraid.

I would love to know what supplements are being used by those who have children diagnosed with PANDAS -- especially those who are using antibiotics long-term. Do the same things work for those with TS and PANDAS? I have been guided by Bonnie's protocal and Chemar's posts, as well as many of the posts citing Dr. Murphy (thanks, Michele!). I am sure this is all somewhere in the achives, but while I was searching, I realized some of you have 50 or so pages of posts! I am asking because my daughter did well for about a week off of antibiotics (she'd been on them for 20 days), but on day 7 -- pretty much back to square one! Started back on antibiotics, and within an hour (seriously!), things improved again. She is much better now again, but not totally tic-free. But it makes me wonder whether any of the other things I am doing (cleaning up the diet, cleaning up her environment, supplements) matter at all (OK -- I am ever so slightly bummed right now). Any help would be appreciated.

Does anyone know how DLP televisions figure into all of this? I know I've read lcd is supposed to be better.

I googled "home strep test" and came up with several. I spoke with my husband, though, and he said he had read that a new one was about to be released, and the buzz was that it was supposed to be accurate, and a big seller. He is going to look through his papers to try and find the information for me. Michele, I saw that you are using Monolaurin, and Dr. Murphy said that it was OK to use. Do you use it daily, or just when your son is starting to feel ill or show symptoms? Do you use a particular brand? If I don't keep my daughter on antibiotics, I am pretty concerned about reinfection. As it starts to get colder, friends are dropping like flies with one thing or another! And with four kids in the house, just keeping the family healthy is a challenge. Michele, your daughter sounds sweet. My son suggested that we all take vitamins (as his sister was making such a big deal about taking hers) which I thought was sweet of him. Of course, no one is taking as many as she is, but at least now everyone has something to take each morning. I may try the Nordic Berries you are using for my littlest. I had been using Little Angels, but honestly I don't know what a "good multivitamin" should be -- they all contain different things in different amounts!

Michele and others who use GABA -- Is this something that that can only be used at night. I read some general online reviews, and most people commented on how it makes them fall right to sleep (which is what they wanted). I just don't want my daughter sleeping through classes. Thanks!!!

My daughter started to experience tics/ocd late (16 years old). She started a little more than four-five months ago (turned up with high strep titres, and in the last couple of weeks we have had some relief with antibiotics). She has always been an A student, with a rogue B here and there. We just received the Quarterly Report Card, and it is a solid mix (half/half) of As and Bs. My daughter seems OK with it. I don't know whether the change is because (1) she is trying to deal with school, and tics/ocd, and now antibiotics and nutritional supplements, (2) she isn't working as hard because I believe stress is a trigger for her, so I have virtually stopped all "reminders" that she should be working/studying, or (3) everything is just harder as she gets further into high school. I am thinking it is one of the first two. So, my question is: Does anyone feel the tics affect academics? Do I give her a "break" because of what she is dealing with, or should I continue to treat her the same as always

Dedee, Thanks so much for all of the fabulous information. I really value your opinions, information, etc. on tics and antibiotics. We noticed major improvement on the amoxicillin -- but there are still some there. I am probably the only one noticing, however, as they are minor. (I am working on trying to be more relaxed with all this, but I find I am constantly watching her like a hawk! I know this is not good, as she is a pretty smart cookie, and she does notice me watching!!) However, I did keep wondering whether, if she were on the "right" antibiotic, all symptoms would subside. I really appreciate you telling me that might be too much to ask for. I notice that my goals continue to change as she improves. First, I just wanted the tics to not be so disruptive. Then, not so frequent. Now that they are neither disruptive or frequent, I just want them gone! She is still doing pretty well, even though we have been off antibiotics for a week. (I think I finally started breathing again yesterday -- very cautiously, though.)

Michele, I am totally new to this. I have just been researching this way too much!!! It is exhausting trying to figure out what is best. I started my daughter on Bontech before I figured out the strep connection. I saw some improvement -- but most of the improvement came with the antibiotic. The biggest concern I would have with your child is how to get him to take these huge pills. Does he swallow pills? I have a younger child who wouldn't be able to swallow them. Someone did just recommend that you empty the capsule and mix with peanut butter. I use the Bontech instead of a multi right now. My daughter can easily swallow pills, but there are so many, she does complain! She doesn't take the recommended dose though -- she takes less. I also have her take a probiotic (Culturelle), omega 3, and inositol. I think it is amazing your school would send that note -- it is so helpful. I just posted elsewhere on the board that I was reading there are home strep tests -- with the recommendation that family be tested more frequently, that sure would be fabulous if they really work. Flaxseed is supposed to be a good source of omega 3 (but not as good as fish oil, for some reason). I think it may also have some omega 6. You can get it at the health food store, and grind it up, and mix it in food. Would the grapefruit seed and coconut oil be to combat yeast? I did start probiotics because of the antibiotics, but was afraid to also add an anti-yeast supplement because I had already started the Bontech and the antibiotics. I thought I might see die off symptoms, and not know which new thing had actually caused them. I think I may order GABA Calm, though. My daughter is doing OK during the day, but has a difficult time winding down and getting to sleep. It sounds like this might help that.