Dedee

Tami, My daughter won't take anything. Not a chew, melt, nothing. She has had a broken leg and a broken arm (at two different times), and she would never take anything for the pain. She recently had hernia surgery and we finally found a way to crush up a pain pill and dissolve it in hot chocolate and she couldn't tell it was there. It is definitely a mental thing. If she even thought it was in there she would never had drank it. One time I was able to mix omnicef in some yogurt and she would eat it. That was how we got her through strep and her pneumonia. She has thrown up so many different types of medications. There is absolutely no forcing it. So honestly, the thought of a shot weekly is fine with me. I am a nurse so I could actually do it myself if I had enough people to hold her down. What type of antibiotic is it that you give by shot? Do they also use a steriod injection? Do you have a local doctor that recommended it or are you consulting from a distance? Good luck with your house full. I just keep telling myself, there is an end. I have seen it before, it must still be there....... Dedee

Thanks so much for everyone's support and wonderful suggestions. For those of you who are getting treatment from Dr. T, are you all traveling for each appointment? I am from Tennessee and I really want my dd to see someone who believes in aggressive treatment. We fooled around way to long with my son and their were too many years that he had to suffer because we didn't go to the right docotr soon enough. My appointment next week is to get titers, do an immunology study, and I will probably go ahead with a Lyme test while we are at it. I don't know how long it takes to get that kind of stuff back but I wanted to have that when I tried to contact a PANDAS expert. I think CBT is a good idea. What is ERB? Someone asked how long it took my son to heal and return to baseline. His worst time was when he was eleven and he had four strep infections in a two month period. His symptoms exploded and that was when the tics started also. He has had PANDAS since he was six, but only had the OCD / anxiety piece till then. So after the fourth episode that winter, I started making the decisions and ignoring the pediatrician. I took him to an ENT and had his tonsils removed. They started antibiotics post op as a routine thing. Immediately after surgery I could tell he was better. No tics at all. OCD behavior gone. However, when the antibiotics ran out, it all came back. So I begged his pediatrician for another round to see what would happen and she agreed to try. When we started the antibiotics back the tics and OCD went away within a couple of days. So I did the research and took it in to my pediatrician on antibiotics being helpful for PANDAS patients. She said if I could find a PANDAS expert to see my son and agree that was he needed she would write the script. So we made an appointment and waited the three month waiting period and wen to see Dr. Murphy in 2007 when she was at the Shands Clinic in Florida (several hours from our house). She was absolutely wonderful and wrote up a treatment plan and sent back to my peditrician. So my ped has been giving us antibiotics for him sense. The last time we were in when I asked her to swab my daughter even though she didn't have fever or sore throat she sort of gave me the "Oh no, not again", look. I told her my daughter had started having tics that she had never had before but she kind of ignored me. The strep test was negative and she didn't say anything more about it. So, I have decided even though she has helped with my son, I don't think she is completely "on board" with the whole thing. I really don't have time to convince anyone. We are in crisis mode and I refuse to go through that whole fighting with doctor's thing again. I can't tell you how many appointments we went to with my son only to be told that there really wasn't anything to PANDAS. I left so many offices in tears. Well, I'm not going through that crap again. There seems to be enough educated physicians out there now who are willing to to be a blessing to these children and families. I just need some guidance on the process of getting there when you live so far away. Who are the best choices when you are going to be traveling? Do I have to have a physician here to collaborate with them? Sorry to be so needy. Once I get my plan, I feel much better. Right now I feel so powerless to help my daughter who doesn't seem to be anything like the daughter I used to know. Thank you all so much for your support. We are all so blessed to have this community of special parents to help one another. Bless you all - Dedee

For those of you who don't remember me, I have three kids and my oldest ds has had PANDAS for nine years. It has been a long, rocky journy but he is now 15 and doing beautifully on antibiotics, fish oil, and probiotics. We haven't had any real PANDAS symptoms from him in almost two years so we feel very blessed. My youngest daughter is seven. She started having obvious symptoms this past year after having pneumonia three times last winter. Although looking back I can see some definite tendencies since as early as two or three. During the last six months she has become almost impossible to live with. In November she had the flu mist and things started to deteriorate immediately. She stopped writing and doing her homework because she said she hated her hand writing. That lasted about three days. Finally she started writing again and thankfully she isn't having trouble in school yet although her handwriting isn't what it used to be. But since she is only in first grade the expectations aren't that high yet. Her rages are getting worse almost daily which is very difficult for us because my son never had rages. So I'm new to trying to figure this one out. I'm afraid we aren't dealing with it so well. Now she has started this hand flapping thing when she is anxious or stressed. Also, she she has the constant finger movement. This started only two days ago. So, the question I have is why is she getting worse? I would think the flu mist would be working out of her system by now. We had a swab done and she was negative. I have an appointment with someone local in two weeks to start a lab work up on her and see if we can get a diagnosis. My biggest fear is that the lab test will show nothing. Isn't that terrible? It's just that I KNOW that this is the same thing, and I really want to get proof so we can move toward treatment as soon as possible. I wish I could get her to take Motrin but she has (always has had), this fear of taking medications and absolutely refuses to take anything. People really don't understand these type of children. You can not reason with an unreasonable mind. If I force it on her, she throws up. So the thought of daily antibiotics doesn’t seem viable to me. These past few months have been horrible. The thought of going through this again makes me sick inside. It seems so much harder this time, maybe because I know what is ahead or maybe it's all the rage and fits. I am thankful for this forum and all the support and help that everyone offers here. Also, we seem to have more doctors available who actually offer treatment instead of saying we are hysterical parents. That is a true blessing. If anyone has any ideas on how to get her past this flu mist thing I would love to hear it. We are past trying to figure this out. Dedee

I did let my PANDAS son get the flu shot this year. However he is 15 and has been very stable for several years. On the other hand, I made a huge mistake and let my seven year old daughter (early onset PANDAS), get the flu mist and she has been in a downward spiral since that day. I am so mad at myself for doing it. I know that the mist is the live virus vs. the shot which is a dead virus. She was having such a fit about getting a shot so I caved in. I can tell you, she will NEVER have a flu vaccine again. If you decide to do it, just stay away from the mist. Dedee

So strange to hear you say everything got worse after the flu mist. My seven year old daughter has had a history of PANDAS like symptoms (Her brother is confirmed PANDAS)and in November she got the flu mist and has had a downward spiral since. Her rages and behavior are impossible to deal with. Somehow she is able to hold it together at school and her teacher says she is a good student. But as soon as she hits the door it all comes out. She has had two different types of tics and the behavior ranges from adorable and sweet to screaming and kicking in a snap. My husband thinks she just needs more punishment because she is able to behave at school. But I have no doubt that this is PANDAS related. We are going in two weeks to a local provider who knows about PANDAS and start lab work. I can't get there quick enough. I completely understand where you are coming from. I truly hope you continue to see improvement with your current treatment. Good luck on your journey. Dedee

I am sorry you are dealing with another potential PANDAS. I can't tell you yes or no. I will say that I have three children and all three have some degree of PANDAS. My first son is typical PANDAS with the rapid onset following strep. Got worse with each successive infection, then tics, blah, blah, blah. He is doing well now (many years later)after having tonsils out and he has been on daily antibiotics and supplements for three years. My second son has mild PANDAS with mostly sleep issues and some repetative thoughts but has never had medications and is only on a few supplements. My daughter is 7 and we are just now starting the journey with her. She fits the PITANDS criteria more so than PANDAS, but she is going to be a full blown case. WE are about to start lab work up on her now. My guess is she will end up needing IVIG. She has been out of control for several months now and there doesnt seem to be any remission in site. So, I know how devestating it can be to see your self going down that road again. Go ahead and have a really good cry and then pull out and dust off all your good articles and books and search for the new ones. You still have lots of good support (thanks to this board) and so many resources. Your kids are lucky to have you for a parent. They need you to fight for them and stand up for them and their future. You have been chosen and you are the perfect person for the job. This is such a hard fight, but you are doing a wonderful job. You obviously care very much for your kids or you wouldn't be here now. Please hang on tight for this ride and know that it will be worth it in the end for you and your children. May God bless you and your family. Dedee

Welcome to the forum. I am sorry about your circumstances. I have two PANDAS children and another who wavers but doesnt need treatment. My oldest is pretty much stabilized after having his tonsils removed and has been on antibiotics for two years. My daughter is 7 and has just started this journey. I related to your story about the flu mist. She was already showing symptoms of PANDAS and I gave her the flu mist in November and she has gone down hill significantly since then. It all started with 48 hours of the mist. I could have kicked myself. You would think I would know better after haveing one PANDAS child. About the IVIG. I wouldn't hesitate a minute. I am trying to get in and get my dd's labs done and try to get enough information to show a definite PANDAS diagnosis and if I can find a provider who is willing we will move forward with IVIG. Of course, I also think it never hurts to cover your bases and while you are doing labs, you should test for every possible diagnosis that fits the symptoms. So we do plan on testing for Lyme even though I really believe she is PANDAS. I just feel it is my responsibility as a parent to be positive of what I am doing before moving forward with something like IVIG. I really want to jump on this while she is young, so we will take the lab results (what ever they are), and seek treatment for what ever they indicate. I just hope it is clear cut. Sometimes you get really ambiguous results that leave you looking more to symptoms for diagnosis. That muddies up the water a bit. Good luck with your son. I hope you find resolution in what ever road you choose. It is awesome that you are working so hard to be his advocate. He is lucky to have you as his parent. Dedee

We live in Tennessee

Sorry to ask what seems to be probably an obvious question to you guys. I have been out of the PANDAS scene for a while since my son got so much better several years ago. Now my 7 year old daughter is gearing up and I am trying to come up with a game plan and figure out what my options are. I think there are a few physicians around who believe in PANDAS but I dont know their stand on IVIG or even if it can be done local or if major travel would be involved. We are capable of the travel if need be, I just need to figure out what I am dealing with here. I really appreciate any help. This forum is such a blessing and the people here are awesome. Thanks so much. Dedee

I found the name under the list of helpful physicians but I don't see much reference to that group. Of course there probably aren't alot of PANDAS parents in the Tennesse / Kentucky area. I'm not quit sure if I am at that point or not yet. My dd is seven and I think she is following in her PANDAS brothers footsteps. She developed a mild tic after a cold. She has always had some OCD "tendencies" and mild anxiety but very managable. She was exposed to strep and became extremely fearful at night and couldn't sleep and then refused to do home work because she said her writing was horrible (It looks the same). I had her strep tested but it was negative. Also, all the homework issues started after she had the flu mist (I know, I should have known better). I tried to give motrin, but she has always refused medicine and she throws it up. I try mixing it in everything, even chocolate syrup, but up it comes. So anyway, although the strep test was negative, she is showing some pretty suspicious symptoms. We had taken my son to Florida to see Dr. Murphy several years back, but I would love to find someone closer who is knowledgable on PANDAS. I appreciate hearing from anyone who knows a Tennessee or Kentucky physician. Thanks so much guys. Dedee

I could be the one confused. Like I said, I'm not up to date on the new "material". I was just wondering if there was any connection between the two infections. I just appreciate any input / opinions. Dedee

Ok, I had to jump in on this issue because it hits too close to home. Hopefully you guys can tell me if this is the same as what you are discussing. A little history - I don't stop by very often anymore because my PANDAS son who is now 14, is doing very well, and with three kids now, our house is extremely hectic (as you all know). However, my six year old daugher has had some vague issues that fit in the PANDAS category but never an abrupt onset like my son. I haven't really been able to link this to a specific trigger. Mostly behavior issues, regression, sleep issues, and stomach complaints. Well, this winter she has had pneumonia three times. For me (I am a nurse), this seems like way too much for what is considered an otherwise healthy child. The last time, it took a while for her to recover and her pediatrician said it was probably mycoplasma pneumonia and tried to switch her antibiotics from omnicef to zithromax. We have such a hard time getting her to take any meds and she just kept throwing up the zithromax. Never could get her to swallow it and keep it down. So she just finished out the omnicef and she did recover. Seems fine now, one month later. Question is, is there a link from this type of mycoplasma and PANDAS issues. Since I'm not here so much anymore, I am rusty on the latest research. Gosh, I shudder at the thought of having to go through this with her. She is an extremely strong willed child. Getting her to swallow medicine, or do anything outside of what she wants is a major ordeal. It would be huge to get her through everything my son went through. Anyway, just looking for opinions. Thanks so much guys. This forum and everyone here is so great. We are lucky to have each other to turn to. Dedee

You are all so very welcome. My heart goes out to each family dealing with this issue. I worry that we may be right back to the beginning at some point with my daughter who shows definate tendencies toward PANDAS. She is six and had strep only once when she was four. She has always been extremely strong willed and has seperation anxiety that is beyond extreme. We have some trouble with her getting "stuck" on ideas, but possibly she is just very stubborn and just cant let things go. I worry that another strep infection may result in a full blown PANDAS episode. I didn't allow her to have the H1N1 vaccine this year, but I'm not sure what all can be done to truly stop this train if it is coming. I guess we can only wait and pray. Anyway, thanks for listening to my concern. I wish you all the best of luck. God bless you all. Dedee

Hello everyone, sorry it took so long to get back with answers. Thank you so much for all the kind words. I am happy to share my sons story, but as you can imagine it is very long since it started almost ten years ago. I apologize ahead for the length. In the fall of 2000, while in kindergarten, my then 5 year old son was treated with amoxicillin for strep throat. One week after starting amoxicillin, he abruptly began having extreme separation anxiety, and fear of harm coming to his parents. He started apologizing constantly about very insignificant matters, constantly concerned that he might do something wrong and be punished by God. He required constant reassurance. He did not want to eat on regular plates or with utensils that he had not cleaned himself, in fear of contamination from dirt. He began staying in the house instead of playing outside. Hand washing became frequent to the point that his hands were constantly red and peeling. Sleeping became difficult, and he began sleeping on the floor beside our bed. These symptoms had never been part of his personality before. He awoke one morning with fears and issues we had never experienced with him. Over a three day period, he completely stopped eating due to the fear of contamination, and his teacher reported a near inability to teach class due to his incessant apologies. A visit was made to his pediatrician where a diagnosis of OCD was made. The pediatrician made a comment that sometimes this is triggered by strep, but we can only treat the symptoms. He was started on Zoloft and began treatment with a psychiatrist. The term PANDAS was never mentioned. Symptoms gradually began to decrease, though never to a “pre-illness” state. Over the next six years, he would had strep infections several more times and this would cause an exacerbation of symptoms each time. Most episodes included reoccurrence of separation anxiety, emotional lability, regression in school work, and varying behavior changes. Again no one would mention the term PANDAS. Usually the symptoms would cause us to have to increase or change his SSRI medication in order to get him "better". As the strep resolved, there would be a decrease in symptoms. Periodic strep infections would result in varying behavior changes and anxieties, most of which you are all painfully aware. In Sept of 2006, he was treated with amoxicillin for a strep infection again. Behavior changes and anxiety returned. He was currently on SSRI therapy. Three weeks after stopping the antibiotics he complained of sore throat and was positive for strep. He received amoxicillin for treatment. The next month he was treated twice for strep, again with amoxicillin both times. Behavior changes and anxiety were greatly increased, along with difficulty in school and with homework. He was crying frequently and having difficulty with sleep. In November, with the fourth strep infection, he awoke one morning with severe debilitating head jerking and eye blinking / rolling tics. He had never exhibited any tendency toward tics in the past. The tics were so severe and frequent that initially we thought he may be having seizures. We immediately contacted his pediatrician and psychiatrist. A neurologist was consulted and he was started on abilify 2.5mg daily. The abilify seemed to control the tics, but he complained of constant fatigue and had difficulty staying awake in school. This is when I got to work on trying to help my son. I found this forum and began to read about antibiotic therapy and about doctors who actually knew about this kind of illness. I was determined however that this was our last episode of strep. In December of 2006 he underwent a tonsillectomy & adenoidectomy and was given Augmentin for two weeks post operatively. The abilify was stopped at the time of surgery. We noticed during his recovery period that his tics had completely disappeared. We initially believed it was a result of the T & A. However, two days after his post op antibiotics ended, his tics began to return. We became curious as to whether there was a connection. I called his pediatrician and explained the situation. She agreed to another two weeks of antibiotics. He was given two weeks of Amoxicillin. Within 48 hours of starting the antibiotics, his tics were significantly decreased, and by 72 hours they were not noticeable. When the amoxicillin was stopped at the end of two weeks, the tics returned . He also began to complain of involuntary movement in his fingers. This movement made him feel compelled to frequently hold onto his fingers in order to keep them still. The amoxicillin was restarted and we began searching for a physician who could guide us, and our pediatrician in an acceptable treatment plan. Our pediatrician was very compassionate and agreed that we could keep the antibiotics until we found someone experienced in PANDAS to guide his treatment. It was through this forum that we heard about Dr. Tonya Murphy, then at the Shands clinic. This was some distance from our home, but we felt it worth the investment. We put our son on the waiting list. When we were able to see Dr. Murphy (about four months after calling) she confirmed the appropriate use of “maintenance” antibiotics, and offered a treatment plan for our pediatrician. We have continued with amoxicillin 250mg twice daily and added fish oil and probiotics. After his visit with Dr. Murphy in summer of 2006, we slowly, and gradually decreased his celexa. He continued to do very well with only antibiotic therapy. Shortly after his celexa was completely stopped, his tics returned but he really didn't feel like they were a problem. There were no behavior changes or regression in school work. I gave him 5-HTP for a while and the tics gradually decreased to barely noticeable. Not sure if that would have happened anyway. He is now off of 5-HTP and I occasionally see a shoulder shrug that I recognize as his tic. No one else can tell that it isn't voluntary. I'm sure you all know what I mean. He has done very well since then and is now 14 years old. He is a sweet, bright, child who makes A honor roll (occasional B's) He started playing football this year. We haven’t seen personality issues related to PANDAS in several years (since antibiotics). There are rare episodes of tics that are noticeable only to family. Of course, no one knows what will happen when antibiotic therapy is stopped. Haven't considered that yet. I am sure that the turning point for him was when he had his tonsillectomy and was started on antibiotics. I know there is some contraversy over tonsillectomies. I think everyone has to do what they feel is right in their specific situation. These kids all react so differently it is highly individualized. There have been a couple of times over the years, mostly with the tics, that I have asked the pediatrician to give us a full dose of antibiotics for a couple of weeks to see if that calmed things down and then we went back to the maintenance dose (amoxicillin 250mg twice daily). Some asked about his eating issues. He had big issues when he was having OCD symptoms. He would only eat certain random things. Really made no sense what he would or would not eat. No meat, no vegetables. Mostly peanut butter, milk crackers, french fries, cookies and a few more odd things. As he got better his menu expanded somewhat but never to what anyone would consider normal by any stretch of the imagination. Also, as he became a teenager and more social, this started to bother him because he couldn't eat around the other kids when they were at events because they weren't serving anything he would eat. It was really causing him anxiety and I wasn't able to help so I decided to try a little family counseling. He has responded beautifully to that and has really started to come out of his shell more. He has, so far, eaten two new items so I guess that is progress. But mostly I see him smiling and laughing so much more which tells me he needed a little talk therapy(Hey, who doesn't). Gosh, I know this is a novel. I was trying to cover everything. His current meds are still: same dose of Antibiotics (Amoxcillin 250mg twice daily), fish oil, probiotics, magnesium & multivitimin. We never went the IVIG route, but it wasn't very big when we were seeking treatment. I certainly would have considered it. I am forever grateful to this forum for the support I received and for sending me in the direction for appropriate treatment for my son. The families here are awesome. Dedee

Thanks Wendy. I wish I had more time to spend here. There was a time when I was here every day and was able to keep up with everyone. As my children have gotten older and into more activities, I have found that almost impossible. I try to keep up with the advances in PANDAS treatment. I suspect that my six year old daughter has tendencies for PANDAS and worry about a full blown episode in the future. Still holding my breath. I am amazed at how far this forum has come since I first started coming here about four years ago. It's so wonderful that there is so much support out there now for our families. Now if we could just get all the doctors on board. Dedee

I got your PM asking about how my son is doing. You are right, I rarely get time to post anymore. Things have gotten tight at work and home is so busy there is little time. I “pop in”, and catch up on everyone occasionally and marvel at how far we have come as a community. So awesome. Anyway, to answer your question, my son is doing absolutely great. It is funny that you asked at this time. I was watching him just the other day and got teary eyed thinking of how far he has come. Each year he improves more and more. He seems so happy now and laughs and truly interacts with the family. He has made straight A’s all school year. I am so thankful for everything we have experienced and learned from this forum. He is now 14 yrs old. We started this journey when he was 5. Of course, back then I knew no one else with this problem and was totally devastated. He is currently off all OCD and Tic medications. He still takes antibiotics, fish oil, magnesium, & probiotics. We have discussed a trial period of no antibiotics, but honestly, I am terrified at the prospect. I have been taking him to a family counselor for over a year to help him deal with some eating issues that still linger from the OCD. This seems to have helped on many levels. I think these kids are so traumatized by this illness and what it does to them socially and to their self esteem. The counseling has been a big help. I nearly had to drag him there the first couple of times. He is now a willing participant (not necessarily eager) and I believe it has been very helpful. I know how horribly devastating this illness can be to a family, and I pray that everyone can find peace and healing. I am so proud of all the parents who fight so diligently for their children instead of standing back and accepting the usual brush off. I know you are all exhausted and feel like crying most of the time, but it will pay off and your child’s future will be the light at the end of this darkness. God bless you all. Dedee

ShaesMom, Thanks for sharing your story. It is so helpful for so many to hear of others experiences and learn from them. I hope you see great results. I notice in your initial post that you said something about complaints of leg pain. Could you expand on that some? I think my other son is experiencing PANDAS symptoms. He has had the issues for several years in a wax and wane pattern. The thing is, they have just never been the huge blown out obvious things that we experienced with our first son. However, now I am worried that he is having panic attacks. His pediatrician is working him up / treating him for other things, but I think I may have to start stearing her in a different direction. Of course, I am worried that I could be wrong and then we would miss some big physical thing because I insisted they start looking at the brain and so forth. Anyway, to get to the point, one of his vague symptoms is persistant complaints with his legs hurting. I haven't heard other parents discuss that so I hadn't added that on my list of "PANDAS indicators" for him. I have e-mailed Dr. Cunningham about getting the new lab work done and see if that may offer any insight. Haven't heard back from her yet. I will pray that your sweet daughter has a complete recovery. Dedee

I can only give an opinion. If it were me, I would increase the antibiotic back to the original dose and see what happens. If no change after 48-72 hrs, I would start giving Motrin. My son would always start to show symptoms two days (you could almost time it), after stopping antibiotics. After the third day, symptoms would be back full force. That is the only thing that leads me toward the antibiotics. Of course, all kids are different. Let us know what you decide and how things work out. Dedee

Rant on girl. How absolutely ridiculous. Can you get a letter from your doctor who treats the PANDAS explaining that this is a physical reaction? Also, I would take in some articles to educate the teachers. That is a horrible way to treat a parent. It is so much easier to just say that it is poor parenting than to open their mind to something they can't understand. People are so mean and judgemental. I'm proud you are standing up for your daughter. How I wish PANDAS was more recognized and accepted. I guess many people will alway feel uncomfortable when faced with psychological issues, regardless of the cause. Just know we are all behind you and praying things improve with your daughter. Stay strong. Dedee

P.Mom, Interesting that Dr. K. advised against any viral vaccines. Did he say anything specifically. I would love to hear more. Thanks for everyone's response. Dedee

Hello All, I would like to hear personal opinions / experiences regarding your kids vaccinations and PANDAS episodes. You all may remember that my 13 y.o. son is PANDAS and currently doing well on daily antibiotics. I have another son and also a 5 y.o. daughter. My daughter had her 5 year check up yesterday and recieved some of her vaccines. I declined the varivex, but she did get the MMR and DPT. My only concern is the fact that she has always shown some "pre-PANDAS" traits. Mainly that she has seperation anxiety that most people can not begin to understand (except those of you here). She has been like this her entire life. I always thought she would out grow it, but here we are at age 5 and still, she clings to me like a life line. Even her pre-school teacher made suggestions as to what I should tell the school in regards to choosing a teacher for her next year in kindergarten. Still, she is eventually able to go on to school and have a good day, it just takes a while. She has only had strep one time, so really I can't tell if she will react or not. So, I wondered what you guys thought about the relationship between PANDAS and vaccines. Not trying to open a can of worms or anything. I know every situation is different. I just like to hear of others experiences, good or bad. I never could link my son's PANDAS to anything but the strep, but I think I've heard others say they thought it played a part. Thanks for any input. Dedee

This is just my guess. I wonder if there is some sort of stimulation of the sympathetic nervous system when the exposure to strep causes an immune reaction. When the sympathetic nervous system is stimulated is does cause increased heart rate, dilated pupils, and other symptoms preparing the body for "flilght". I can't figure out why it would be there some days and not the next. That is very odd. There is so much we don't understand about the illness. Hope things improve soon. Dedee

Pat, Can you tell me more about the oregano oil? How are you giving it? If it has a bad taste, are you successful in hiding it in something to get it down? I have never heard of that before, and it sounds like a great option for keeping kids healthy. Dedee

Deanna, I just wanted to comment on the Topamax. My son is PANDAS, so I spend most of my time on the PANDAS board. When we went to the neurologist two years ago when my sons tics were at their worst, she suggested topamax. She said it was very new in the treatment of tics, but showing great results. She is supposed to be one of the best in the field of neurology. We did not choose to go that route because of the PANDAS and we were looking for antibiotic therapy. Unfortunately, she was not a PANDAS believer. I also wanted to mention the Topamax is used for the preventative treatment of migraines and that I take it for this reason. It has been a life saver for me. My migraines are almost completely gone. There are a few side effects. Weight loss is seen in most people. Also, some issues in the first few weeks with difficulty formulating words. It is hard to explain, but you have difficulty finding the right word to explain what you are trying to say. That usually goes away after a few weeks. Also, it can change your taste sensation for a couple of weeks. I didn't experience that. Really, though, I felt the reward very much worth a couple of weeks of minor inconvience. I have heard of others who have used it for tics with good results. I hope the information helps with your decision. Good luck. Dedee

I don't mean to state the obvious here regarding the birth trauma, but babies normally don't have teeth to be traumatized at birth. I have heard of antibiotics causing discoloration though. Dedee