Dedee

No, there have been not studies that show this. It was only someone who was theorizing. Which is an important thing to distinguish; someones theory vs. actual results of radomized trials performed at major research facilities. Dedee

Yes, this is true of probiotics. I have not personally given my son any that had the strep strain in it because it seemed to be something that I would naturally want to steer clear of. So when ever I looked for a brand to buy I always made sure this was not a part of the ingredients. Just as with anything else with these children we have to be so careful of all the "hidden ingredients" that most people don't think twice about. Thanks for bringing that up. Dedee

I would like to add my opinion on the theory that antibiotics cause the antibody titers to stay high therefore the neuropsychiatric symptoms to remain evident. My son has had PANDAS for seven years. He has only been on antibiotics for one year. I can promise you that his neuropsychiatric symptoms during the years previous to his antibiotic use were extremely unstable and unpredictable. There was always an association to his strept infections but in addition we would also see flare ups that we could not relate to any specific incidence. There was absolutely nothing we could do to stabilize his moods, his insecurities, his fears or his difficulities in school. About 18 months ago when he developed tics after a series of strept infections we had his tonsils removed and finally got a visit from Dr. Murphy. We have followed only her advice in regards to his treatment for PANDAS realizing that she is the expert on this illness. She did recommend the low dose daily antibiotic treatment for our situation. This has been the only thing that has stabilized our childs tics and his entire life in general. His moods are entirely different. He has been a straight A student all year and a total joy. We still have a few minor tics and issues but we are dealing with it as it comes and with the methods that she gave us. I try not to confuse myself with other outside influence, if I believe this is the right thing for my child. Each child is different and each situation is different. However, when I think of how he was prior to antibiotics and after, there is no doubt that the antibiotics have not caused a build up of antibodies of any kind to worsen any illness. In PANDAS patients, antibodies will often stay elevated for long periods of time regardless of antibiotic therapy. I know that in our desperation as parents to help our children we will often search for answers and be willing to try many things in hopes that it will ease their suffering. I just hope that that we remember that all treatments take time to work and flare ups are an inevitable part of this illness. It is JMHO that switching from one treatment protocol to another to quickly, before really giving it time to work, could cause more harm than good. I do not mean to stir contraversy. I am only speaking in generalities about things that have been swirling in my mind lately in hopes that it may be of help to someone. Everyone here is so nice and helpful and I hope that we can all get the comfort we are searching for to help our children. This is what is truly important. Thank you all so much for your support during this journey. Dedee

I'm not sure who asked me the question about why we havent used Augmentin on my son since he had tonsils out. The answer is that he has not had any strept episodes since that time. He has only had one occurance of neuropsychiatric symptoms that I felt warrented treatment and that was after an exposure to strept (even though he did not actually get strept). Since he is on low dose maintenance amoxicillin, and I had some samples of Omnicef at home, I just gave him a round of the Omnicef then restarted the amoxicillin and that seemed to clear things up. We haven't had any big problems since. This is really a day by day illness and we just keep our fingers crossed and pray for the best. Dedee

Augmentin is stronger and broader than Pen V. It also has a tendency to give kids a tummy upset. My kids usually have very loose stools while on it. It needs to be given with meals or small amount of food to avoid a stomach ache. It was always very effective for my son (before his tonsils were removed) and Dr. Murphy thought about leaving him on it, but I was really sort of glad she didn't because he always does complain with his stomach when he takes it. However, I must say, it completely knocks out his strept and any associated neuropsychiatric symptoms he has. I like the idea of having it as a back up if we need it. We have also used Omnicef. It does work also, but my pediatrician says for her the chain of preference is Amoxicillan (which he takes daily), then Augmentin, then Zithromax, then Omnicef. They generally use the basic stuff first then move on to the stronger stuff after that. Of course, every doctor has their individual preferences, so it may vary per physician. Dedee

I would absolutely start a good probiotic. You can get them online if you need to. Also, if you do believe that this increase in symptoms is caused by an exposure or possibility of strept you need to stop all of the antibiotics that you use daily and choose one that works differently. I would suggest Augmentin. You need to get a doctors advice on proper dosing per kg of body weight etc. It can be dangerous to use antibiotics without a doctors guidance. It sounds like your family is under alot of stress right now. I hope things improve for you. Sending hugs and prayers. Dedee

That completely depends on what antibiotic you are talking about. Different doses for different antibiotics per kg of body weight. As a general rule, in the medical community, children are the most "under dosed" of all patient populations due to incorrect weights and rapid growth. I know my pediatrician thought my son was on a full strength dose (amoxicillin 250mg twice daily), but Dr. Murphy said not at all at his age and weight. He is a big boy for his age and at the time he was 11 and weighed 120 pounds and is very tall. It may be that they want to start at a higher dose for a while and then decrease it later. I would ask what the long term plan is. Good Luck. Dedee

Kelly, It was probably me who spoke regarding the tonsil issue. Now, I can only tell you my story and what happened in our situation. Of course every situation is different and as you said in your last post all children react differently to different illnesses and situations. My son developed OCD literally overnight immediately following a strep infection when he was five years old. We were not given a PANDAS diagnosis, only traditional SSRI therapy (which worked) and a very nice compassionate psychiatrist and go on your merry way. He had strept a couple of times over the next couple of years and he would seem to get a worsening of symptoms with emotional issues, school issue, you know the drill. His doctors would adjust his medicine and we would deal with things best we could. Again, no PANDAS diagnosis. When he was 11 he had strept 4 times within a one year period. During the last infection, he woke one morning with severe tics after never, ever having a single tic in his life. While going to doctors for a help with this issue, we got our PANDAS diagnosis. I talked to a few doctors: Pediatrician, ID, Neurologist, ENT, about his tonsils. Of those, the Neurologist, ENT and Pediatrician suggested we remove the tonsils. His were extremely large and his ENT said we would probably never get all the infection out. That was all I needed to hear. Since that time he has done very well. Of course, you also need to consider that he has also been on antibiotics since then as well. As a mother you just can't help but think that if I had removed his tonsils sooner, maybe he would never have suffered the infection that caused his tics. However, now I try to look at it that if he had never gotten tics, we would never have gotten the right diagnosis and proper treatment. All that matters to me now is that my child is thriving and happy and we are armed with knowledge and a wonderful doctor who can help us if we need it. I hope the information helps in your decision. I know how hard it is. I am currently struggling with what to do about my eight year old. He had strep several times last year and has OCD tendencies but not PANDAS type. I decided to wait and see how he does this year, I hope I don't regret that decision. Let me know what you decide. Good Luck. Dedee

Actually I have been using Inositol for my two younger children who have OCD tendencies for about 6 months now. I have not seen any huge differences, but I do notice that they rest better at night after their dose. The part of the article that I found most interesting was the part that refered to the amino acid NAC as that is such a safe supplement to try. It stated: ".......If glutamate is indeed dysregulated in OCD, one might hypothesize that pharmacologic agents that directly modulate glutamatergic neurotransmission would be beneficial in its treatment. Candidate agents include drugs that decrease presynaptic glutamate release, increase glial uptake of glutamate, or attenuate the postsynaptic effects of glutamate.................The amino acid N-acetylcysteine (NAC) is widely used for its antioxidant properties and as treatment for acetaminophen toxicity; however, recent preclinical studies suggest that NAC also modulates CNS glutamate. NAC is converted to cystine, a substrate for the glutamate / cystine antiporter located on glial cells. The uptake of cystine by glia causes glial release of glutamate into the extrasynaptic space, where it appears to stimulate inhibitory metabotropic glutamate receptors on glutamatergic nerve terminals and thereby reduces the synaptic release of glutamate. Systemic administration of NAC has been shown to reverse the susceptibility to reinstitution of compulsive cocaine use in a rodent model by restoring re-establishing normal extracellular glutamate concentrations in the nucleus accumbens. In addition to attenuating synaptic glutamate release, NAC may enhance clearance of glutamate by glial cells at the synapse. Elevated levels of glutamate deplete glutathione within glial cells, impair cystine transport, and thereby increase the vulnerability of glia to oxidative stress. Preclinical studies demonstrate that NAC protects glial cells against glutamate toxicity, repletes levels of glutathione, and attenuates toxic levels of glutamate. The authors of this article hypothesize that NAC, through its inhibition of presynaptic glutamate release and protection of glial function, may be beneficial in disorders of glutamatergic dysregulation. If effective in OCD or other disorders, NAC would be an attractive treatment option because of its benign safety profile and low cost. Therefore, a small number of OCD patients have been treated with NAC, and evidence for benefit in compulsive behaviors has been found in two preliminary case reports. As noted above, NAC also reduces the tendency toward relapse in a rat model of cocaine abuse, suggesting that it may have more general efficacy against compulsive behyaviors and maladaptive habits. This agent merits further investigation......" So the article just made me wonder if people are taking NAC anyway as an amino acid for its anti-oxidant effects, what harm could it do to try it if needed for some flare ups in OCD behavior? Like I said I have been kicking it around a bit. It seems to be a very safe alternative. I may try it to first. Of course we aren't having any problems now (knocking on wood). Just thinking ahead. Dedee

Primary Psychiatry - Treatments in Obsessive Compulsive Disorder I found this article while doing a search on using NAC to treat OCD. I haven't started my son on NAC, but I have thought about it since Dr. Murphy had mentioned that it could be used for neurtoxicity. Since then, I have read a few short things about it being under investigation for use in OCD. I have my son almost completely off of his celexa and I am concerned that we may start to see some OCD symptoms return after this is completely out of his system. So I am just looking for safe alternatives. Anyway just found this very interesting. Dedee

Hi bmom, I just wanted to re-enforce what Michele had said above about not beating yourself up because you didn't get a swab done or whatever. I have played that "what-if" game over and over before and believe me it does no good. I had convinced my self that if I had gotten my sons tonsils out sooner none of the tics would have occured and so forth. But now that I look back, the tics were truly a blessing. Wiithout that we would never have been led to the correct diagnosis and treatment. Yes he would be tic free, but he would still be suffering from all of the emotional instability and insecurities that he is free from today. I have beaten myself up over and over in the past years, but looking back now I see that it was all leading up to a solution. Please try to relax some and just enjoy your child and trust that this too shall pass. I also wanted to bring up another thing that I have been pondering lately. I ran across an article recently that had a statement about NAC (N-acetyl Cysteine) saying that it is under going trials in the United States for the treatment of OCD. I found this interesting because Dr. Murphy had mentioned that it is a good supplement for neurotoxicity. The way I understand it, it is a type of healing supplement from the damage of the increased titers on the basal ganglia. But the small amount that I was able to find says they are looking at it as therapy for OCD. I find that very interesting. Anyone else heard anything about this?? Dedee

Lisa, Well, I am new to this antibiotic thing and have only had "permission" (from Dr. Murphy) for them for about 6 months. Prior to that, my pediatrician gave them to us reluctantly (sp?) for about four months while we were waiting for our consult. Now, Dr. Murphy did mention that if my son was exposed to strept that his symptoms would probably worsen even if he did not actually acquire the illness. She went on to say that he may even need a stronger antibiotic for a couple of weeks to alieviate those symptoms if they were extremely bad. So, all that being said, it has only happened once that I felt the need to increase the strength of his dose. At that time I was certain of his exposure to strept because his best friend was being treated for it and his mother told me he had been complaining all week with his throat. So I knew the two had been together. My son never complained of feeling ill, only had increased tics and very emotional with some behavior issues at school. Since I already had a two week course of "samples" at my house, I didn't even think twice, I immediately made the switch and he improved within a day. Now, there have been other times that he has had some mild return of symptoms but nothing that I felt like deserved more antibiotics. I would just increase his supplements in some way until things got better. I really don't notice any relationship to a virus much. Mostly only strept. I know there are alot of parents who do see that. I think it is most likely the stress on the immune system. I believe that is why it is important to use vitamins and supplements to keep the immune system strong. Probiotics are very good for that as well. I am sure that there will be times in the future that this will be challanged. My daughter is now 4 and she is just starting school and getting exposed to strept and bringing it home and so forth. So I would imagine that between her and my other son, they will expose him enough to challenge this theory. We will see as the winter progresses. Keeping my fingers crossed. Dedee

bmom, Did I understand that the original symptoms occured within 10 days of the strept infection? That is considered to be a common time to see PANDAS flare ups. Just because you did not see actual strept with the next episode of symptoms does not mean you still are not dealing with PANDAS. My son would have OCD and emotional issues that would peak during the winter months even when his strept cultures were negative. Of course when he did actually develop a strept infection it would become horrible. This went on for a couple of years and we really did not have any idea of what was going on and actually punished him at times for his behavior. It wasn't until the development of his tics that we got the proper diagnosis and moved forward until we received the correct treatment. I know how difficult it is to struggle as you try to find a diagnosis for your son. I would not completely rule out PANDAS. You should try to find an expert in the field of tics and autoimmune issues and give a complete medical history. I am sure that you can get some answers and some piece of mind. In the mean time start keeping written records of his behavior on a calendar and record his illnesses so that you can see any association between the two. It helps to have that when you go to the office. I hope you are able to get some answers soon. Good luck. Dedee

Sorry for the late reply, I have been out of town for a while. Rachel, I am so sorry for what you are going through with both of your children. I can not even imagine what it would be like to have two kids with PANDAS. You have my prayers and support. I noticed you said you started probiotics and fish oil. You may want to try cal / mag as that often helps a great deal with tics. The other thing that comes to mind is your other child who may be a carrier and exposing them to strept. Even if they do not actually aquire strept, just the exposure to the bacteria will cause their antibodies to rise and increase their symptoms. So I would take a look at everyone else they are close to and see if they may be getting exposure you are not aware of. I think you can expect to see some symptoms come and go through out childhood and then taper off and go away as they enter the later part of the teens and early twenties. The goal of course is to try to keep the symptoms to a minimum and as mild as possible. As far as whether or not I saw explosive symptoms in my PANDAS son. We definately did. But by explosive I mean that one day he was his normal every day self and then literally he woke up the next morning with extreme fears and constant hand washing and refusal to eat "dirty food". That was when he was five. He was absolutely a different child over night. I believe that is the defination of "explosive" in the PANDAS literature. Years later after several strept infections he had another over night change, where he literally woke up one morning (while on antibiotics for strept), with a horrible head jerking and eye rolling tic. It was so frequent, and abrupt that it almost looked like seizures. He had never ever had tics before that morning. It was very frightening. It wasn't until several days later that we got our PANDAS diagnosis. I still can not believe how many physicians continue to be ignorant regarding this disease and it's treatment. I'll stay off my soap box and save that for another post. It just breaks my heart to hear of so many children suffering because no one knows the proper course of treatment. Children have enough to deal with, they should not suffer the effects of illness needlessly. Oops sorry, still on the soap box. Well, that's all I have. Hope everyone has a great Thanksgiving. For those traveling, be safe. Peace and Grace - Dedee

The tic I see only rarely is him stretching his neck out and turning his head. It is sort of like his old head jerking tic only disguised (if that makes sense). It is more obvious when he is doing it more frequently. But then I usually increase his supplements or give him a higher antibiotic for a few days and it will go away. He did have a finger movement thing in the beginning, when his tics first started. He said he felt like he needed to hold his fingers and stretch them. Dr. Murphy told us this was a classic sign in almost all PANDAS kids. He has not had this at all since the antibiotics though. Just my two cents on the tummy trouble with the nystatin. If you aren't already using probiotics, try those to see if it might help some. My daughter never had that issue with nystatin, but she tends to be constapated all the time anyway. Hope things get better soon. Dedee

Yes, it is the Amoxicillin 250mg capsules twice daily. Like you said, pretty much a miracle for us. Still some residual very mild tics (not every day), that really no one else notices but me. My husband even says it isn't a tic, but we mothers know from constant observation :-). But, I can most definately live with that. I just hold my breath and pray alot that things dont go hay-wire. Dedee

Ann, I am so very sorry for what you and your son are going through. I know it seems so unfair. I remember when my son was five and suddenly started having horrible OCD symptoms, I would cry every night wondering what I did wrong to put this on my son. I didn't have this board then and didn't even know about PANDAS. It was a very dark time. I can feel the great love you have for your son in your writing. Right now you need to just draw on that and stay strong. You have gotten great advice already and you will get so much knowledge here. With that knowledge you will get more strength. Your son will get better. As he gets older and is able to swallow tablets, you will be able to get him to take supplements such a calcium / magnesium which is very helpful for tics, and slowly add others that will be helpful. With his young age, I think it is appropriate to look at dietary changes, allergies, and cleaning up the enviornment. You can always try epsom salt baths, those are very simple and give some temporary relief of tics. Most children his age will take a kids multivitamin. Make sure he is getting one that is dye free. It sounds like you are doing everything you can. Make sure you take care of yourself also and give him lots of love and hugs. Peace and Grace - Dedee

It's very strange that I haven't noticed it with my son. We are very diligent with the probiotics and also he uses milk with probiotic cultures. However, my daughter is on antibiotics daily for a kidney problem for 2 yrs now and I give her probiotics also. Now let me tell you, she has yeast all the time. She has it in her mouth at times and of course the usual female yeast also. I am constantly treating her. We use Nystatin for her mouth and then an ointment for her bottom. There have been a couple of times when it was really bad and she had to have diflucan. It may have to do with the different type of antibiotic that she is taking. She just turned four so it is kind of hard to tell if it gives her cloudy thinking or not. I have heard alot of bad things from chronic yeast overgrowth. Probiotics is all we have ever tried though. Good Luck. Dedee

Actually he is doing very well right now. He just brought home his report card a couple weeks ago and it was his first one with all A's. He was so very proud of himself. It is a complete full circle to where we were this time last year. I had noticed about a month ago that he was having a few more head tics than usual and I increased his calcium and also added the B vitamins. Of course I didn't say anything to him and he never mentioned it either. I also gave him a 10 day omnicef course that I had samples of because I thought he had been exposed to strept from some friends at school and I guess I was trying to ward off evil spirits so to speak :-). Now we are back on all the regular stuff and everthing seems to be back to normal with just some rare tics that only a Mom would notice. He really is such a happy kid this year and has even made a good friend that he has some things in common with. This is such a HUGE difference from the emotional lonely weepy clingy little boy he was last year. Of course, I watch everything like a hawk, but I mention very little. Not that I want him to think that I am ashamed. I just want him to go on with his life without feeling different. I do ask him about once a week how he is feeling, and he always smiles and says "Good Mom". So I just Thank the Lord and go on my way. We will see how things go as I continue to taper off the rest of this Celexa. Keeping my fingers crossed on that one. Dedee

Emma, The amoxicillin we use is in capsule form so I don't have to worry about dyes or flavors. He also takes calcium / mag, a multivitamin, fish oil, and probiotics. I only recently added a B-vitamin last week which so far he is tolerating well. We are very slowly weaning him off of Celexa which he has been on for several years. He is doing very well so far, I am just very scared and sort of waiting for the other shoe to drop. My goal is to one day be able to manage him only with the supplements, low dose antibiotics, and lots of love and prayers. This has been a long bumpy and very emotional road. Let me know if I can help. Thoughts and prayers - Dedee

Hi Emma, Just jumping in on the Augmentin issue. My son also did great on Augmentin and Dr. Murphy did kind of bat around whether or not to have him on it daily or not. In the end we left him on Amoxicillin 250 twice daily because he was doing fine. Actually he probably did better on the Augmentin, meaning that we truly saw no tics what-so-ever while on that. However, I think her reasoning was that we would hold on to that for when he had flare ups, thats when we give him about two weeks of it then go back to the Amoxicillin twice daily. I think Amoxicillin is somewhat different than Pen V although it is still a Penicillin base. I wonder if you would see different results with that or have you already tried it? Hope you find an answer soon. Dedee

Hey I am right there with you. Tell me where I can get the rapid strep test. I am a nurse and I know how to read them, but I never knew where you could purchase them. Does your daughter still have her tonsils? My son has done much better since we had his removed. Of course he has been on antibiotics most of the time since then as well so I'm not sure which has helped the most. Keep us updated. Thanks. Dedee

YES, Gosh I just loved Dr. Swedo's part. I really may try to download that to give to my pediatrician. I want to just send it to every doctor in the nation after some of the crazy responses we got from some "specialists". So Lisa, how is your daughter doing now? Any better? I think the school year is the hardest on these kids. My son told me last night that his throat was hurting a little. I almost came un-glued. He doesn't have his tonsils anymore so it is really hard to tell anything when you look. I think it is just some sinus drainage from a little cold going through the house. You just can't help but be a bit paranoid. Hope things a looking up for you. Let us know. Dedee

Lisa, I am so sorry for what you are going through. I only wanted to say that I viewed a presentation that discussed PANDAS given by Dr. Swedo that was posted on this site. It was very informative. I am sure others here viewed the posted link as well. Anyway, I believe that I remember correctly that she said that often times they see symptoms in PANDAS children before they ever see the titers actually start to rise and that is more common than you would expect. So it is very likely that you are not loosing your mind and you know exactly what is going on with your child. Just stay strong and remember that you know your child better than anyone and whatever you do, don't let anyone make you doubt yourself. It would certainly not be life altering to try a round of antibiotics to see if you got any improvement in her symptoms. If there was no improvement, you simply stop them. No harm done. I am sure you know all the other things to try as well. BTW, seperation anxiety is one of the BIG PANDAS initial symptoms according to the Dr. Swedo lecture. If you haven't view that you really should. I am awful about not being able to remember where these posts are. I had saved it to my hard drive then viewed it and deleted it. I found it awesome, and wanted to send it to every doctor in our area :-). Well, I must be off to bed so I can get up to work in the morning. Please keep us updated on your daughter. I will pray for your family. Stay strong and take care of yourself also. Dedee

Just jumping in to say that I whole heartadly agree with what Chemar said about Dr. Murphy. Even though she is a "traditional" doctor, she is so very open to treatments outside the traditional methods. This is not to say that she will not tell you if she thinks it will not be helpful, but she did suggest alternative supplements for us in addition to the antibiotics that other physicians would have blown off. As for time, we were literally there for hours. She was so relaxed and did not seem to have anything to do but talk to us and our son. It was such a great feeling. The entire staff is great. As Chemar said, any labs you need will be drawn there and best yet, she will do the interpretation, which she is trained to do and explain it all to you, which most physicians will not do. Honestly, if we lived close by, I would take my son in every few months whether he needed it or not :-). Emma, I know what you mean about getting confused about everything. Yes my son does take a few other things. I give probiotics, and calcium / magnesium along with the fish oil, antibiotics and a multivitamin and that is all. Things seem to be pretty stable that way and I am not sure I can afford much more :-). Of course we would do whatever we have to or spend whatever we need but I tell you I am about to go broke keeping all five of us on fish oil. I think I going to have to start buying it by the case. Hope things are going well for you....... Dedee