Dedee

Ok, I'll bite. We are in Nashville Tennessee. Although we have a large childrens hospital here that is a teaching facility, I have not been successful in finding a provider in this area. We went to the "top notch" pediatric neurologist and ID physicians here. Neither really gave me the time of day on the PANDAS issue. In fact the ID was very condescending. The neuro was fine but just wanted to use meds and not address the real issue (PANDAS). My regular pediatrician admits that she is not very up to date on PANDAS and it's treatments but is a believer and is open to helping with treatment when guided by a specialist. Therefore, we drove to Florida to see Dr. Murphy, who sent a treatment plan to our pediatrician and made some general recomendations and here we are. I am at least thankful for an open minded pediatrician. Sorry it got long. Dedee

There was one thing that jumped out at me when reading your post. Grapefruit or it's by products taken orally can, in some cases, have strong reactions with other medications and / or supplements. It's one of those innocent sounding things that has a tendency to cause negative reactions when mixed with some meds. By itself it is not a problem. It is the drug interaction that is the problem. That may not be the case here, but I just wanted to mention it. Good luck trying to work through this. I am so sorry you are having this set back. Dedee

Yes, we have a definitive PANDAS diagnosis by both the pediatrician and Dr. Murphy. The diagnostic criteria used were the abrupt (overnight) onset of his ocd symptoms following a strep infection, his worsening of symptoms with subsequent strep infections, the eventual tic disorder occurance (again, overnight), following strep, and his continued elevated titers. Lord, it has been a long eight years! Dedee

Erica, I can't believe you said that about your son wanting to teach the class at school! LOL! We used to tell my sons teachers every year that their biggest issue with him would be that he really wanted their job! He is very bright, and excels in science. He actually used to correct his teachers if they said even the littlest thing different from what he had read in a different book. He also took it upon himself to watch over the class if the teacher stepped out and would report to her when she got back what went on. It really disturbed him that the other students wouldn't follow the rules and stay in their seats as she asked the to do. One day he actually came home very agitated and said he just didn't like his teacher because she left the class too much and then all the kids would misbehave. I think it has to do with him not being able to control the enviornment. Even though is is better now, he still has issues with things like group activities. He really only wants to work alone, so that only he will control the results and therefore the final grade. He has never been much on team sports. He does great in karate, and received his black belt just last spring. Even though he has a few casual friends, he is mostly a loner and a little intraverted (except at home). Obviously, he will never work in a group or team enviornment. LOL Oh, well, it takes all kinds to keep this world spinning I guess. Dedee

Myrose, Gosh yes! My son thought that he did everything wrong and confessed things he did the previous year. He would tell me things he thought he was doing wrong and he wasn't even doing them. I told his psychiatrist about a time when he went to a place in the neighborhood that I told him he was grounded from. He did this while in the care of a babysitter, so of course I knew nothing of it. When I got home from work he was pacing outside on the driveway because he needed to confess it to me right away. I mean, what do you do in that situation? The psychiatrist said this was a component of his OCD and actually common in kids with OCD. OK, whatever. It's really a hard one to figure out how to handle. But then again, it all is isn't it? Dedee

Is it possible that you noticed the behavior after you stopped the antibiotics that you mentioned. The reason I asked is that my son took antibiotics after his tonsils were removed and we noticed that all of his PANDAS symptoms disappeared during that time. We were truly excited thinking it was the act of removing the tonsils. However, as soon as we stopped the antibiotics, within 48 hours, the tics and behaviors started again. I convinced the pediatrician to try the antibiotics again to see if this was a coincidence. She agreed and we we started them back. Things began to improve the next day with almost complete resolution within 48 hours. It was actually kind of creepy. I could have set my watch by it. Very predictable. The hard part was convincing any other physician that this was real. We only notice headaches when he had strep. I hope you are able to find some answers soon. Dedee

Erica, My son has never really had rage issues as such. When the OCD started we saw problems with seperation anxiety, fears of contamination, fear of harm to family, excessive handwashing. However, after a couple of years he had a couple more strep infections (still did not have a PANDAS diagnosis at that point), and became more emotional. He would cry very easily and was a bit paranoid that kids at school were talking about him and didn't like him. When I would talk to the teachers, they would be so surprised, saying that he had several friends and all the kids seemed to get along with him. He seemed to interpret things differently and was sooo sensitive. That continued to worsen with each strep infection until we finally got our diagnosis and proper treatment. Now it is resolved for the most part. It seems that most of these kids have some issues with emotions. It just manifests differently in each one. As a parent, it is very difficult. You get very little understanding and support from family and friends who believe it is poor parenting. It has so taught me that I should never judge others situations. Dedee

Lacy, Gosh I am so sorry to hear what your daughter is going through. You said she had been on antibiotics for nine months, is she still on them? My son gets some symptoms when my other kids get strep, even though he is on antibiotics and doesn't culture out himself. It usually passes in a couple of weeks. It sounds as if this is more serious. I am interested to see what you find out about her titers. I know you feel really bad for your daughter. It does sometimes seem so unfair. But I am telling you that your little girl is very lucky to have a mother who loves her so much that she is willing to do anything to get her help. Many parents will blindly accept whatever the first doctor tells them and their poor kids are misdiagnosed their entire childhood with horrible consequences. Yes, it is terrible that she must endure these dark times. But you are her light, and you will see her through. She couldn't ask for more. Dedee

Heveritt, Thanks for coming back to share your experience. It is so helpful to hear others experiences on and off antibiotics and other treatments. I am sorry to hear you are having trouble again. I hope you are able to get things setteled soon. BTW, how old is your child? Dedee

In response to the question about why the recommendation to try to take my son off antibiotics. At our visit with Dr. Murphy when we were discussing the whole antibiotic issue and I just asked her if this was something he needed to take until he was an adult or how do you determine the apporpriate stopping point. Her answer was that most PANDAS kids start to improve at around age 17 or 18 with complete resolution in the early twenties. She said that if he were COMPLETELY symptom free after two years we could see how he does without them. However if this was a time of hormonal surges or other changes to wait until those have leveled out. Some children will begin to improve a little earlier (around 16), and no longer need the antibiotics. Just like everything else with this illness, I am sure it is trial and error. We just take it day by day. I am just so thankful we have him on them and he is doing so well. It is different for each situation. Dedee

I just wanted to jump on the band wagon for a minute about the doctors and such. It's a personal soap box of mine. Sarah, I love it that you were able to actually give a "nonbeliever" proof. What a validating moment that must have been. I always felt like I had to be so careful not to get too defensive too soon when they started with the condescending comments, because I knew they would just wright us off as being "crazy parents". Of course, it didn't really matter, they did that in the end anyway. You get to where you know within the first few minutes of the visit how it will end up. Several times I just wanted to get up and walk out after the first few questions. You can tell the ones that are closed minded. But, oh, how wonderful it was to first speak to a knowledgable professional about your child who takes it all seriously and understands your struggles. I only pray that there are more doctors like that to be found for everyone's sake. And I agree, we should all be warriors for our children! Dedee

Colleen, I agree with the above post. What I would worry about with a skeptical doc is that if the titers were not high you would get the "I told you so" speech and end up with nothing. Of course we all know that PANDAS kids do not all have high titers. In our case, we didn't have titers checked until about four months after tonsils were removed (and the last strep infection). We got them at the request of Dr. Murphy prior to our visit. He had been on antibiotics for many weeks and his titers were still through the roof. I would have to look up the ASO, but I remember the AntiDNAse was almost 3,000. My pediatrician was VERY shocked. Dr. Murphy just said it was very typical in cases like this. I would really like to know what his are now since he has been on amoxicillin for well over a year. I just haven't gotten around to asking the ped for a order for them. Is there anyway to find a doctor who agrees with the PANDAS issue to be of more help for you? It sounds like your son would do so much better with them. If you do go forward with titers please post and let us know what they were. Good luck! Dedee

The only reason we are considering a trial without antibiotics is because it was something that Dr. Murphy said we should try every couple of years. In the summer it will be two years for us. Of course we will take into consideration what is going on in his life. If there are any outside stressors, we will simply delay it. I am certainly happy where we are now and don't want to rock the boat. On the other hand if he could be off and still do well, that would be great also. I always leave the door open to change our course of action because any little thing can cause relapses. I may chicken out when the time comes or, if I am feeling at peace and he is peaceful we will see. Things can change so quickly with this illness. Dedee

Kim, Unfortunately, we can all identify with your frustration and I feel angry and frustrated just reading what you are going through. I had two "top notch" specialist, one ID and a neurologist basically tell us there isn't a behavioral association with strep. I invited them both to live with us for a few months. I mean, do these people really think that Mothers do not know their children. Uggg, it infuriates me! Anyway, please just immediately dismiss this ignorant person and move forward in finding someone who can help your son. It may be hard, but you will find the right person for you and that will give you great peace. The only thought that came to mind in reading your first post was that in many PANDAS cases the strep can be located in other areas of the body, not just the throat. Have you used antibiotics lately and seen any difference in behavior? Just something to keep in mind. I hope you find the help you are looking for soon. Your son and your family have been through enough. God bless. Dedee

Myrose, Let me go over what I have understood about PANDAS. I have also read / been told that continued strep exposures resulting in flare ups can cause irreversable damage if not addressed. That is why daily antibiotics were recommended for our son. The antibiotics will (hopefully) keep away further infection, and in theory, decrease current antibody levels to decrease the damage to the brain. My sons antibody levels were through the roof, although this is not always the case. Furthermore, antibiotics are certainly not the answer alone. That is why Dr. Murphy suggested to us that we use fish oil for my son. This will help with healing the portions of the brain that have been damaged and it has antinflammatory properties as well. I am personally a believer in antibiotics. However, it isn't the answer in and of itself, nor is it the only answer. I think that is why so many of us use several different supplements to get the desired result. Unfortunately, it is often a case of trial and error. Please don't beat yourself up. This is a very complicated illness. So much so that even the majority of the health care profession do not understand it. We are all just feeling our way through dark, unchartered territory. It's good we have each other to lean on. Dedee

I am sorry you are so conflicted. This is such a hard decision and very individualized. Try to remember that what ever you decide isn't written in stone. If you decide at any point that you do not see the results you expected (or hoped), or if you see symptoms worsening you can always change your path. There is no shame in changing your mind. I would say we have all tried many different options before finding the one that works in each situation. We have personally chosen to use amoxicillin daily for our PANDAS son. He has done very well with this and a few other supplements for almost two years now. I have had a couple of doctors tell me how mild amoxicillin is compared to other antibiotics, which makes me feel much better. I like the idea of having something stronger to move up to if needed. However, I think I am very fortunate in that many children will not respond to amoxicillin and need something stronger. I know many have had great success with Zithromax. Keep in mind also that this is strep and flu season. I always dread the school year. It's inevitiable that someone in my family will get strep a couple of times during the winter. For that reason alone, I prefer to have my PANDAS son on antibiotics daily. I agree that changes should be made during summer months for a couple of reasons. We plan to attempt to take our son off of antibiotics for a while next summer and see how he does. We can always restart if we see symptoms coming back. If you do use antibiotics frequently or daily, make sure you add a good probiotic. I am sure you will get feed back from others here with similiar experiences. Good luck in your decision. Dedee

I only wanted to add what we have seen and heard. My son who is on daily amoxicillin, does have very mild symptoms when his little brother or sister have a strep infection. It usually resolves over about one to two weeks. These are very mild forms of previous tics or anxieties. Dr. Murphy had told us that this was a strong possibility with any exposure to strep as it will activate antibodies even if he is not infected himself. I always have him cultured as well to make sure and he is negative so I try not to worry. In regards to the length of this disease, all I have been told was by Dr. Murphy. She said that often times hormone surges (as in puberty) may cause exacerbation of symptoms, but that MOST PANDAS kids begin to improve around the age of 17 or 18 with complete resolution in the early twenties. I am sure this is very individualized, as is this illness. All I can do is cross my fingers and pray. Good luck to us all. Dedee

Nicole, I just wanted to say how sorry I am for what your daughter and your family are going through. That is a horrible situation. I hope you will stick around here and allow the wonderful people on this board to help and support you. My biggest suggestion is to get to a physician who knows PANDAS ASAP! This will help you get some control over your situation and begin a plan for healing your precious daughter. Also I wanted to add that there was a time several years ago when my son (PANDAS) was taking SSRI's and his psychiatrist switched him to Luvox to try to help with a flare up. He actually got worse on Luvox. I'm not sure why, as he had taken Zoloft and Celexa with no problems, but the Luvox made him nuts. We ended up going back to Celexa and increasing the dose slightly and he did well. Since that time we have been fortunate enough to get antibiotic therapy for him and have gradually weaned him off of the Celexa. Sometimes the meds we give to help, don't always help. It is just so hard to tell when you have so many issues occuring at once. I hope that you soon find the right physician for you. Your family has suffered long enough. Dedee

Ugggg, that really bugs me that they would label her "emotionally disturbed". I agree that you should take medical records and any other supporting information and ask that it be changed. I am sure they will think it is no big deal but I assure you it is. Of course my sons education file reflects that he has OCD, and in the past I have spoken with the teachers each year about the best way to handle things, etc. Well last year he was doing so well that I didn't say anything at the beginning of the school year. However, while on a field trip I was talking with one of his teachers and somehow his "quirks" came up so I mentioned that he actually has a diagnosed OCD but has been very stable lately. She responded "Oh yes, I know, I read it in his file". OK, so I didn't really take to much offense because she was very nice and he did well in her class. But my point is, that many people in the future will read your daughters file and have pre-conceived ideas before ever having an experience with her. These things really need to be treated with professionalism and tact. Some people are so judgemental. That attitude makes me so mad. As if the parents don't have enough to deal with, now they have to deal with uninformed, judgemental, inconsiderate adults. Sorry for the rant. Obviously I had issues on this topic. I hope you have a positive outcome. Good Luck. I'll be praying for you! Dedee

Jennifer, I am so sorry for everything you are going through. I know it is horrible to watch you son struggle and suffer like that. I pray that you can find some answers soon. The key to that is to find a doctor who believes that PANDAS is real and is up to date on the treatments. There are many physicians who still don't believe in the PANDAS diagnosis. It is realitively new in the medical arena and still contraversial. However, those of us who live it everyday know just how real it can be. It is very important to find someone who specializes in PANDAS to help you sort this out and come up with a proper diagnosis and treatment plan. It sounds as though you have all suffered long enough. Just remember as you go to all of these appointments that you have set up, that it is very possible that some or all of them may tell you that is a crazy diagnosis. Do not let this discourage you. Again, I urge you to find a physician who is experienced in treating PANDAS. This will give you hope and direction. My heart goes out to your family. I am sure there is a beautiful, smart, wonderful little boy in there, just waiting to come out. I pray you find the right medical care very soon. Keep us updated. Dedee

Linda, I think Michelle may have answered some of your questions. In my case, we made our appointment a couple of months ahead of time and drove down the day before the visit. We saw her the next day and the visit took several hours. After the visit we drove straight home. It really went very smoothly. We had left our other children with their grandparents so the trip wasn't so stressful. As far as treatment, he takes antibiotics daily along with fish oil, multi vitamin and magnesium. This seems to work for him very well. Her suggestion was that we attempt to take the antibiotics off after about two years and see how he does. If he doesn't do well then back on for another year then try again and so on. We are planning on attempting to take him off next summer. Definately not during school. He turns 13 this month so will be having lots of hormone surges, and other changes that tend to exaserbate (sp?) PANDAS. However, he already is going through much of that and hasn't had any trouble. He is now 5'9" and weighs 165 so he is really growing. I am nervous about trying to wean antibiotics but I know it is necessary. I am sure it feels like this is never going to end for you. But just hang in there and keep searching for the right treatment plan for your situation. You can do it. Your a great mother, if you weren't you wouldn't be here looking for answers. Keep us updated and good luck! Dedee

Michelle, I am so sorry you are having trouble again. Gosh, that is really a hard one. It is hard to say wheather it is a OCD issue or a tic. It sounds like it could be either or a combination of both. IMHO, it is probably best to just focus on trying to treat the underlying cause. Which ever it is, it sounds like it was brought on by this most recent illness. If he is already on antibiotics then you have that avenue covered unless you wanted to switch to something different for a try. If what he had was a virus, then it may have to run it course, hoping that wouldn't take long. I have read several posts where some are using advil (or some type of ibuprophen), to help reduce swelling in the brain, hoping to decrease symptoms. I really don't have any other suggestions. There may be some here who know of some natural anti-inflammatories. I hope you can find some answers soon. God Bless - Dedee

Pat, I am so happy to hear that Gaby is doing better. Whenever I hear of a child receiving treatment that is helpful, I rejoice. It's great that we have this forum to share information. I am sure your experience will help someone else. My hope is that there will soon be a recognized plan of care for these children, and we are getting there one child at a time. Thanks for sharing. Dedee

Linda, I'll try to answer your questions about Dr. Murphy. She did not recommend Tennex or any other meds for him because as his behavior spread sheet showed, when he was on antibiotics the tics were almost completely gone (only a mother would recognize what was left). At that time he was still on celexa for his ocd which was working well and we had not attempted to wean it off at that point. When she saw and heard how well he did with his remission of symptoms while on antibiotics she just felt that was the way to go. The general consesus was that we would continue the amoxicillin, since it is not very strong and that way if it stopped working at some point we would have something stronger to move up to. She was very open to considering something stronger if needed. I like the idea of using something that isn't as strong. I think we are just very fortunate, I know there are many PANDAS children who need some of the stronger antibiotics to eliminate their symptoms. I did not really speak to her in terms of more aggressive therapy (such as IVIG) because that just wasn't my goal at the time. We talked of antibiotic therapy and other supplements that should be on his treatment plan (fish oil, probiotics, multivitamin). We also discussed the future in terms of when we should stop antibiotics or if he had a flare up, those kinds of things. She was extremely helpful to my family. I just don't have any idea on how she weighs in on the IVIG and other more aggressive therapy. I wish I could be more help. All I can tell you is that my son has continued to do well on antibiotics and we have since weaned him off his celexa. I am hopeful (probably dreaming), that we may be able to stop his antibiotics for a while next summer and see what happens. If nothing else, I'm sure it would be good for his body to take a break for a time. Good luck in your decision. Keep us updated. Dedee

Thanks so much for the number for Dr. Murphy. I was freaking a little when I didn't think I had access to her if needed. I appreciated the input. Dedee