emma1

I would also be interested in answers to all of the above questions. Also, did she mention if she thought diet and/or allergies played a part in PANDAS. Our doctor said in non-PANDAS tics, he thought allergies/diet might play a part, but he thought that PANDAS was a result of the strep, and therefore, diet/allergies did not cause the problem and so a change in diet would probably not help. (Of course, he advocated making healthy choices!)

Michele, Sounds like an amazing appointment, but so sorry she did not write a prescription as I know that would have made it some easier for you. Did you see the Swedo lecture video? There was an issue brought up in this forum regarding whether you should try to boost the immune system of a child with an auto-immune issue (PANDAS). It sounds like Dr. Murphy does want you to supplement with fish oil and vitamins -- I would think that you would want the child as healthy as possible to ward off future strep infections. What would you think?

Not Becky, but wanted to note that Michelle just got back from Dr. Murphy re: a PANDAS diagnosis, and Dr. Murphy recommended Coromega to her. She has a separate post about her visit. I was concerned about the other ingregients too, so switched to OmegaBrite. I am thinking now that if your child is not sensitive to the other ingredients, Coromega would be fine. I am a little concerned about OmegaBrite because the EPA/DHA ratio is so high (7:1).

I am very new to all of this, but just had an appointment with our regular family doctor. My daughter began having sudden tics after a strep infection, and her titres tested high. Our doctor is not an expert on all of this, but surprised me in that he seemed to know quite a bit. He recommended that my daughter do a second course of amoxicillin -- 20 days total. There had been some strep among her friends, and he wanted to ensure she was not reinfected. Then, he said we would "trial" off of it, to see if we noticed a difference. He said, if she appeared to have less symptoms while taking the antibiotic, he would suggest Pen V (I think that is what he said) as a first line of antibiotic to try. He said we would be doing a long-term low dose. He said he would want to hold zithromax in reserve, in case Pen V stopped working, or she needed antibiotics for another type of infection. He suggested checking strep titres every 4-6 months to see if they continued to go down. Does this seem appropriate???

As far as boosting the immune system, our doctor seemed to suggest that it was OK to give vitamins, etc., to get my PANDAS daughter as healthy as possible. My sister has thyroid issues, which is also an auto-immune issue. Her doctor has always advocated vitamins, probiotics, etc. for her as well. I am a little confused when you talk of immune boosting -- are you all talking about vitamins (like Bontech, etc., or OPC) and are you saying we do not want to get these kiddos as healthy as possible with supplements????? Anything specific we should avoid? I thought Dr. Murphy recommended fish oil?

We just went to our family doctor who informed us that, although flu vaccines are now recommended, his office would not be giving them out. We were referred to a group that is doing "first come first served" innoculations. My concern, however, is that these places never have preservative-free vaccines. I am pretty sure the flu shot still has mercury in it. What is everyone else doing -- are you getting your child the flu shot? Last year, before I was dealing with the tics, I was already concerned. This year, haven't a clue what to do. Thanks, Emma

Chemar, I thank you for the reply -- very helpful! I see that your son is older. My daughter just started the tics and is older. I am cooking from scratch at home -- but she is eating lunch at school, sharing snacks after school (before her activities), and then the usual teen social life of friends and dates. I have tried to talk with her about diet, but she has been eating "her way" a long time! Any suggestions? Does your son stick to your rules when he is out in the world? Thanks again! Emma

Thanks, DeeDee! I appreciate the information! This is so frustrating -- I spoke with an ID today -- he told us we would be his first PANDAS-type case. UGH!

I am sorry to be so persistent in figuring out exactly which brand Dr. Murphy is recommending. I was so hoping I could just give the antibiotic and the tics would leave and that just isn't happening. I saw the NSI brand you recommended, DeeDee, and was just trying to see what the other options were. Someone said Max EPA was recommended, and someone else said Coromega. Coromega is not 2-1 EPA-DHA. Maybe it doesn't matter, but I am just grasping at straws.

I would love to know if anyone has experienced any negative effects from the Bontech vitamins. I have been researching the ingredients, and I don't see anything that would be harmful long-term. Is that how most of you feel? It seems like just a good vitamin program -- though I was surprised at how big each pill is (since they recommend so many, I thought they would be tiny). On the artificial colors and preservatives -- how do you figure it out without label reading? You said your kids self-monitored --do they read labels, or just know what to stay away from?

Chemar, could you please elaborate on what types of food additives you stay away from? Are you talking artificial colors and dyes, or other additives as well?

Does anyone find this helpful for a PANDAS child? A doctor just told me this should be my first step, but it seems so hard with a teenager to try to get her to eat this way!

I believe this was recommended by the Shands Clinic. Does anyone know who makes this -- I googled and found several options with this in the name. I wanted to ensure I was looking at the right product. Thanks!!

I just saw that New York University was doing some sort of clinical study involving fish oil and Tourette's. Does anyone have any information on what they are using, and dosage? Thanks!

Does anyone know if you can get amoxicillin in a color free/dye free? I spoke to the doctor, and she indicated yes, but when I went to pick up, I was told they are all pink. (The store even called other stores for me.) Do many of your children have reactions to colors/dyes?

I know you are so busy, but I would love any additional information that you have. Also, I am wondering which Nordic Naturals product that you used -- some of the have Omega 6 (Borage Oil). Is there only one option on the NSI brand? Thank you so very, very much!!!!!!

Ronnas, thank you for the information. My daughter seems to have gotten more tics since starting the antibiotic (amoxicillin). Someone said that it could be something artificial -- and the pills are pink. If the tics aren't gone after the amoxicillin, should I push for the azithromycin? Does it matter what the strep titre does? My doctor said he would want to get the titre down, but did not say he would keep her on meds until tics subsided. Do I wait after we finish the amoxicillin, or immediately ask for something more? You said your child had been on meds for a while -- is his titre normal, or does it just not go down? Was it difficult to get the doctor to keep your son on it prophylatically -- did you need to find a specialist? Thanks for all your help!!!!!

Thank for the website -- some of the recipes look good. Do you know -- could a child go 16 years with no symptoms and then develop an intolerance to gluten or casein. That seems strange to me.

I am trying to search for tic triggers for my 16 year old daughter. I don't really know if I should even be doing this because the doctor seems to think PANDAS is involved because of high strep titres. But since she started the antibiotics, the tics are worse, so I feel I must do something!!! Would it be useful to test for gluten/casein/yeast sensitivity? This company: https://www.enterolab.com/Home.htm has a home test. Has anyone used this company or one like it. Could gluten/casein/yeast be the problem? (I am very confused as I can't think of anything that is different -- I would have thought something would have shown up in the first 16 years -- but something has to be differnet.) Any opinions most appreciated!!!!! Emma

Thanks for all of the replies. I have done more research and so am more confused. I know that we want to look for something from a reputable company because of purity. Is there a specific ratio of EPA to DHA that is best? I had heard 2:1 but the Omegabrite is 7:1 (and I can't find any other brand that has that -- but don't know if that is good or bad). One website said DHA is what is important for tics, which would obviously mean I have the wrong brand! Also, some have Omega 6 (evening primrose or borage) and some don't. I saw that Bonnie's has no Omega 6. Any opinions on this?

Thank you Faith and Chemar! I appreciate both of the opinions. Chemar -- I have probably spent 4 days reading your posts alone! Seriously, they have all been helpful. We just found out about the high strep titre -- it was totally a surprise. I was disappointed when she didn't just stop the tics when she started the antibiotic, but I guess I shouldn't have expected so much. I was shocked though when after a day on the antibiotic, she started to tic more! Someone said it could be artificial something in the antibiotic -- and the amoxicillin is pink!! It made sense to me (who knows nothing!) to try and build up her immune system as well as have her take the antibiotic. I have also been giving her probiotics to combat yeast that could be caused by the antibiotic. However, this is all just me -- all the doctor said was give the antibiotic for 10 days and then we will check the strep titre again. If it goes to normal -- do we stop antibiotics? She is taking two amoxicillin 750 mg per day -- does anyone know if that sounds right? Our doctor said he wanted to start with amoxicillin to see if that took care of it. He said some kids need more than a single round of antibiotics, and so wanted to keep zithromax to try next/later if needed. Does that make sense to anyone? Thanks, thanks, thanks!!!!!!

I just came across this organization, which seems to use nutritional supplements and exercises to treat tics. Has anyone used -- the "testimonials" on their web site are very positive. Also, if you are using, could you give me an idea of what the program is like, and whether it is expensive. (I have an older teen -- not sure she would want to participate if the exercises were not age appropriate.) Thanks so very much!!!! I appreciate any and all help I can get. The doctor is thinking PANDAS and she just started antibiotics, but that seems to have made the tics worse!!!!!

I am sorry to be asking so many questions of the board. I have tried to do a lot of research, but this is all so confusing. And, of course, you want to fix everything right away! My daughter has elevated strep titres, so the doctor is suspecting PANDAS, but she is 16 -- so it is confusing to me, because I thought she would be too old. She started this week on antibiotics, and last week on Zyrtec (for seasonal allergies). I've had her on magnesium, zinc, fish oil, inositol, and probiotics for a few weeks. Could I start Bonnie's vitamins too -- or is that too much too quick. Do Bonnie's vitamins help if the tics are caused by PANDAS? Also, on diet, where do I start? We have never noticed any of the "typical" symptoms of food allergy before. I haven't noticed more ticcing with certain foods, but I could be missing something (16 year olds don't always let you know what they are eating!). She also doesn't have any of the typical signs of a yeast problem, but I know a lot of people have undiagnosed yeast problems. If I were going to try to "clean up" our diet to try and diminish the tics -- where would I begin? I am also confused about what type of doctor I need to help us -- environmental, infectious disease, allergist, other? I am sure I am missing something important -- please feel free to make any suggestions. Thanks for any help -- honestly, the more I read, the more confused I get. And it seems really difficult having this start when my child is already 16 -- so much of her life is so "independent" from me!

Our doctor recently recommended fish oil for tics, and specifically mentioned Omegabrite. However, when I checked the website, it has a 7 to 1 EPA to DHA ratio. Somewhere on this ACN site, I read the we should be looking for a 2 to 1 ratio of EPA to DHA with NO Omega 6. Could anyone tell me what they are using, and whether they have had positive results. I would really love brand names, if that is allowed here. Also, if you used a fish oil with poor results, please let me know that as well. I found some studies with Omegabrite and depression, but not with tics. Thanks!

I am pretty close with my daughter, and I can say with some certainty that she has never had any tics or ocd symptoms whatsoever before four months ago. The only time she would talk to me about it, she said it started happening to her at about the same time I noticed it. I cannot think of anything in our home or her school that has changed. It started during a time when school was stressful, but she was also having a very active social life. The only thing I could remember was that she stayed home part of one day because she had a sore throat. But she said she felt better, and went in at noon. About a week or so later, I noticed sounds. Sometimes it is a hum, but often sounds like she is repeating the same short phrase over and over. I am actually not sure what all the various blood tests were -- but I asked that he run carnitine levels and a strep titre (based on info from this board). When titre came back high, he prescribed antibiotics. The allergy symptoms (basically sneezing) started about three weeks ago -- again, no idea why. And no idea why the Zyrtec helps -- or if it really is the Zyrtec or a coincidence. Every once in a great while, she does have allergy-type symptoms, but they usually go away in a few weeks -- I usually just use something OTC. We do have a bichon -- supposed to be allergy free -- have had her for four years.