emma1

I know this will not apply to many of you, but I was actively following the vaccine discussions earlier, and was really concerned when I read a recent article on the new cervical cancer vaccine. It said a lot of teen girls were fainting. Of course, they would not attribute it to the vaccine (though it is happening during or immediately after the shot!). This makes me even more concerned about all these vaccines.

I just wanted to add on that I have continued to look into this. I found that Dr. Weil not only recommends stainless steel but has his own brand! I usually find his recommendations pretty trustworthy (but I must admit all the marketing does make it all a little more confusing). Since I had added in the info from Dr. Mercola, I wanted to bring up this "conflicting" opinion. I don't want to add more confusion, but also ran across discussions on where the enameled cookware is made -- some are concerned about the fact that many brands are made in China (with the lead paint problems in children's toys. . .). Also, I was able to find new Visions pots online at pretty reasonable prices!

At our house, it's not Christmas until we all get sick! We have two different illnesses going right now, but my daughter is still OK. I cannot comment on the "how long" question. We are "different" as strep caused my daughter's symptoms but she was 16 when this started!! My doctor found a research article that said there are cases of this happening (PANDAS-like illness with older child). He is following a rheumatic fever type protocal -- Pen VK twice a day, but hasn't indicated any time limits. (My biggest concern is that the doctor is a pediatrician, and so in a couple of years, I will need to find a new doctor, and I've read here what a struggle it is to find one willing to prescribe antibiotics.) We use it because my daughter improves so very much on antibiotics. But I am shocked that your child got strep while on antibiotics, Dedee -- I thought that was one thing we didn't need to worry about!!!!!!!

For any of you who use this, can you recommend a good brand? I would also be interested in whether there are different types of inositol. Is inositol hexaniacinate what everyone is using? Thanks!! I have been using the one from GNC, but was told that the hard tablet might not be the best way to go. Thanks!!

I have been getting a lot of my info from Dr. Mercola's website, which may not be totally unbiased as he does sell cookware. He thinks there may be a problem with stainless steel cookware because of it leaching nickel. If you google Mercola and stainless steel, an article should pop up.

Kelly, Thank you so very much for contacting Dr. Murphy regarding this. Although her answer was not definitive, I think it does give us all hope that our child could be in the 1/3 that remits (or at least the group that does better!). I know I feel very guilty because I never realized my daughter had strep when she had it. I saw this explosion of tics/ocd, and didn't make the connection until months later. I will always wonder if I had caught the strep infection immediately at the time she first had it, and treated it immediately, could have saved her from all of this.

I just purchased some enameled cast iron, which many feel is one of the safest types of cookware to use. I also have heard good things about Emile Henry ceramic cookware. I really wanted some of the Visions, but was told that they do not work well on a gas stove (which I have) so stopped looking. The Visions I found were also pretty pricey.

Regarding PANDAS and how long it lasts: I understand that some who get this "recover," that is some have symptoms for a while, but as time goes on, the symptoms become less and less until they are just gone. I have read accounts of this happening, and our doctor says he believes this to be the "usual" course. However, with others, the symptoms last longer and continue to be "severe" or "disruptive" for quite a while (though my doctor contends that he does not believe even this will be life long). So, I am surprised by this life-long information. I was told that the further away you get from the strep event that caused this (without having additional strep infections), the more the symptoms will diminish. Has anyone else been told this? Regarding Monolaurin: Hmmmmmm! Chemar, do you think that this could be used long term as opposed to antibiotics? I actually read about someone using Monolaurin to keep away some other type of bacteria infection (staph perhaps?).

Chemar, Bumping this for you! What do you think?

Chemar, I do usualy read these posts when exhausted, but I thought that was the debate in this thread. I may be confused, and if so, I would absolutely love clarification. As I was reading, I saw that there was information that daily antibiotics were not a good idea, and then I saw Dedee "summary" in her post, and went from there. Re the Crohn's, that came up in these posts -- PANDAS and Antibiotics -- I am bumping it up for you and others because it concerned me too. I thank you for weighing in, as I can tell you have been at this a long time, and have a lot of knowledge and perspective on all of this.

I called my doctor after reading the information about antibiotics keeping the strep titres high. As I said, our doctor is not an expert, but he did not believe this would be true. But he said that PANDAS was a very complex issue, that doctors were really just learning about it, and so we couldn't truly be sure. So, I guess what he actually said was that he had not seen the studies showing that antibiotics would keep strep titres high, but that no one could answer all questions about PANDAS because a lot of research still needed to be done. I am very hesitant to stop antibiotics. My child's quality of life is night and day while on and off antibiotics. It is the only thing that I have found that truly seems to help. I am also cleaning up our diet, using a multivitamin, and using epsom salt foot baths in hopes of eventually stopping the antibiotics. I also use probiotics. Right now I am using Culturelle (but it does have whey in it which you would want to avoid if you are casein free). I did use one with a strep strain in it (by mistake) and it did increase symptoms. I am also determined to add omega 3 somehow. I must admit, though, this new info on the harm of antibiotics is freaking me out. I certainly don't want to harm my child long term On another thread here, I also just read information that long term antibiotics can cause Crohn's disease! Any of you who have seen Dr. Murphy, or another"expert," have they weighed in on this? I asked my doctor about seeing an expert, and while he was not opposed, he did say that I should not get my hopes up that they would have a "definitive" answer because he felt there was not one at this point. What to do?!?!?

Dedee, So would Pen V and Amoxicillin be comparable then?

I followed this link, but could only get to the abstract. I wanted to bump this up to see what other moms with PANDAS children thought of this. I think I started this thread, but missed this crohn's/antibiotic connection. I am not freaking out (well, not quite anyway) but antibiotics are the only solution we've found so far. Without them, the other supplements don't really cut it at all. And, I am feeling extra bummed out because the one supplement everyone seems to agree is helpful for this autoimmune disorder -- omega 3 -- has not been tolerated by my daughter very well (I realize she is reacting to the fish oil and not omega 3, but we haven't found a good substitute yet). Anyway, does anyone have any better/additional info on this crohn's/antibiotic connection? Do probiotics play a part? Does this mean we are better off with a lower dose antibiotic, or perhaps less strong antibiotic. I was just wondering because my daughter is on Pen VK right now -- and I keep thinking I should push for something stronger, or for a stronger dose. But this crohn's thing does have me concerned. I have a friend with it, and I know it is at times very, very difficult for her (although she is not exactly "perfect" in doing what is best for her health). So, does anyone have any thoughts?

I have been extremely careful in choosing fish oil. I have used three brands: Omegabrite (this has some connection to Harvard studies, I believe), Nordic Naturals, and (after PANDAS, when I was looking for only Omega 3) Carlsons. Carlsons has independent testing, and is recommended on the mercola.com website. So, I am thinking, mercury is not the answer for us. But I do agree, from what I've read about fish oil, it should help tics diminish. I have no clue why that is not happening for us. I have never had my child tested for allergy to fish, but she does eat salmon, and I've never noticed a reaction to it.

This has been an issue for my child as well. My daughter began ticcing several months ago after a strep infection. I will say, she was on fish oil supplements at the time. I stopped them, to see if the tics/ocd would also stop -- but no, they didn't. Antibiotics were our answer. So -- after we were back to minimal tics/ocd, I added fish oil back in (this time just omega 3). After about Day 4, I was convinced that the omega 3 was causing increased tics. I stopped them. We are back to minimal symptoms. I am not sure what to do at this point. It seemed to me that anything that was causing increased tics was not good. I wonder, how long should we stay on fish oil before we give up and stop? (My daughter hates the tic so much -- if she starts in a noticable way, she gets stressed, and that makes everything worse -- so I really hate to do anything to make things worse, even temporarily. But, of course, some day I am hoping the symptoms will go away.)

I am by no means an expert, but have been researching all of this for months now. I totally understand your all-nighter (all too well). I have figured out a few things. First, if you think it might be PANDAS, you should go to the doctor and ask for strep titres to be taken. Get the blood test -- not just the strep screen. If it is elevated, I would see if your doctor will prescrbe an antibiotic. My daughter is too old for a PANDAS diagnosis, yet met all other criteria. When she went on antibiotics, the improvement was nothing less than dramatic. We have improvement on any antibiotic (at least the ones we have tried so far), but some are better than others. If you can get one without artificial colors and dyes, I would go for that one. (Why dyes/colors are in these meds anyway, I don't understand!) There have been reports of vaccines being related to tics -- you can search that on this site. It could be the mercury, or other chemicals in the vaccine.

I had looked at this, but I read (here in a older post by Claire) that Manganese could cause tics. Has anyone found that to be true?

Just wanted to add -- I did ask our doctor about removing tonsils. He said that those without tonsils get strep less often. But then said -- with PANDAS, he recommends keeping the tonsils in, because without the "protective effect" of the tonsils, the strep might go elsewhere in the body to hide. Didn't understand exactly, but bottom line is he felt that the tonsils should stay in, and seemed pretty definite on it. Again, I must note that our doctor is not a PANDAS expert.

I feel very depressed to report I have been at this for months now, and I think I am a lousy investigator! I started with supplements only, and added one every few days. When I got close to the doses in Bonnie's, I tried those. At that time, we (finally) figured out the strep connection, with very high strep titres, and so started antibiotics too. During this time, I began trying to clean up the diet, but I have a teenager, so it is a little harder, as she doesn't always follow my instructions. We tried casein free for about 4 weeks -- I didn't notice any improvement. We also tried gluten free -- but honestly probably didn't make it as long as you need to (six months?). For us, I eventually stopped everything but the antibiotic. I got better results after stopping the supplements, so I think something I added was doing more harm than good. I added back in the probiotics first, because of the antibiotics. We tried stopping the antibiotics, and experienced almost an immediate regression, so are on long-term Pen VK right now. I then tried fish oil, but I THOUGHT I saw increased symptoms, so stopped. I'll probably try again later. I have a multi here, but haven't started it yet. I did add in one 500 mg of Inositol for the ocd symptoms. Can't say it is helping, but I don't think it is hurting. Most days, symptoms are mild (that is -- I can notice a few; most would not notice anything). Every once in a while, for no reason I can figure, symptoms flair for part of a day, and then settle back down. My feeling is -- if I could get a stronger antibiotic (augmentin or zithromax), she could be symptom-free, but I don't know if that would be best or not. I mean, if she is on the stronger antibiotic, and then symptoms get worse, THEN what do we do? I tried talking with a DAN, but honestly found her advice very simplistic, and overall, not helpful. She was insisting on tons of tests, and I just thought my daughter would totally freak out.

Just wanted to share this excerpt from Mercola's website re NAC: I would caution diabetics not to use it routinely however, unless all their mercury is removed from someone who is experienced with mercury detoxification. If mercury is still present in a person's system NAC will bind to it and carry it to the brain, thus worsening brain function. NAC can be used for a mercury removal program, but only late in the program, not early on. This is from Dr. Klinghardt's extensive clincial experience in mercury removal. He is one of the leading clinicians in the world in this area.

I've been searching, and I cannot find any information regarding PANDAS and steroids -- I seriously doubt I could get my doctor to try it unless I could show him something. Would you use this with antibiotics when there is a flare-up? Do most PANDAS kids have flare-ups? As we get farther and farther from the original infection, is it supposed to get better? (It should eventually go away, right? I was told it would eventually stop -- but the other autoimmune illnesses I can think of aren't that way, so. . .) With my autoimmune prob -- it is forever. We'll go along several days with everything fabulous (no symptoms) and then out of the blue, I'll see symptoms (not explosive -- usually subtle -- but definitely there -- more ocd than tics). It lasts a day, and then we'll go back to no symptoms. I know I am probably looking for a trigger on the days there are symptoms, is that right? Can't figure out anything different -- seems random so far. Any other PANDAS child with this pattern? Michele, I am very surprised about the probiotics. I have read a lot about them -- almost all really good. And I've had several tell me that they thought they experienced die-off with probiotics alone, and that you could get rid of a mild yeast problem with probiotics.

Kim, I know you just asked Dedee and Michele, and my daughter is atypical because of her age, but (in case this means anything to anyone) my daughter's tics/ocd were explosive in that one day there was nothing and the next day very obvious. However, I have never noticed any jerking motions. Mosly it is a vocal tic. The only other thing I noticed is a hand motion (gone now) but it looked more like playing piano. (At the time she was doing it, I didn't even realize it was a tic, but now I am thinking it was because of the timing of it starting.) Prednisone has never been mentioned to me for PANDAS. I did have a child need to use it once because of a severe allergic reaction. The doctor said that for the short term (5 days) there wouldn't be side effects we needed to worry about, but that those that need to use it long-term could experience weight gain, swelling, and a lot of other pretty significant side effects.

Dedee, So happy to hear such a positive story. I notice mild symptoms with the low dose Pen VK (we are on a lower dose than Michelle, even though my daughter is 9 years older!) -- not sure others would notice, but I watch her like a hawk. Are you giving 250 mgs twice a day of antibiotic? I use Culturelle every day and I have just started one Omega 3. I notice you mention milk. I stopped using all milk for a while and noticed no change. To be quite honest, I noticed no improvement with anything -- we were definitely floundering until the antibiotic -- which worked like a miracle, relatively speaking. But after I reintroduced milk, I noticed that having a glass of milk actually calmed her. Michelle, GLA comes from Borage Oil and Evening Primrose Oil. It is Omega 6 -- which Chemar has said is a no-no for those with autoimmune issues (which PANDAS is). So far, I have tried to stay away from Omega 6, though my doctor didn't seem to have an opinion on whether it would be good/bad. But Chemar really seemed to know what she was talking about. Has your DAN worked with children with autoimmune issues? I remember you saying that the DAN had thought treating the pyroluria would make a dramatic difference. What do you think so far? A small amount of GLA is in a lot fish oil capsules, primarily those made by Nordic Naturals and Equazen. In fact, Nordic Naturals told me Omega 6 or 9 (or both) is in all of their capsules. I have pretty much stopped talking to my daughter as she is doing relatively well, and seems happy. She is at an age where "being different" is just the worst, and she once told me that my questions made her feel different. I try to just watch, though I occasionally cannot contain myself and ask, "So how are you feeling?" or "Feeling OK?" She always says yes.

Thanks so much for the information. I know suppressive therapy is supposed to be low dose, but I can't help but think perhaps this is too low. I am trying to give it a fair trial. It would be good if we could use this low dose, but I've gotten so spoiled with the weeks of no symptoms. I do so understand you "waiting for the other shoe to drop" statement. I am finding that I am really starting to stress out about this. How is your son doing now? Do you "tolerate" some symptoms to stay on amoxil? I finally added fish oil. I am trying to go slow and not add too much too fast. I am assuming that a negative reaction would be pretty immediate, but otherwise, I won't notice much. I hope you son is doing well. Dedee, you seem like you have really done all you possibly could to make this work for you child.

Hi Dedee! Thanks for responding. I am starting to feel discouraged. We tried amoxil (875 mg twice daily) and augmentin -- both were regular dose. The only low dose we have tried is Pen VK at 250 twice a day. I am wondering if this is just too low to get rid of symptoms. I wondered about Amoxil, but the one we used had colors and dyes in it. What dose do you use? I am thinking perhaps the dose is just too low. I am also wondering -- I know your son takes fish oil and perhaps other supplements -- do you feel anything else, beyond antibiotics, helps?