Dedee

That is good to know. He has never taken it but I have considered it in the past. Looks like I am going to need to try something soon. No one is getting much sleep at my house. Thanks for the info. Dedee

Donna, I agree with Chemar. It could go either way. I have found that going to a "better" doctor in a larger facility does not guarantee that they will know anything about PANDAS or other issues that cause tics. We were very excited to get an appointment with what was supposed to be one of the best ped. neurologist in this area. It took two months to get in. Well, she was very nice, BUT she only gave us the options as far as what medications he could take and her opinion on which would be best for him. When I tried to discuss PANDAS and antibiotics she gently blew me off. That is only one of my experiences with "well known" doctors who know nothing about PANDAS but want to tell you how wrong you are about your own child. It is very difficult to find someone who fits with your needs. I encourage you to keep up the good work. It will pay off in the end. Good Luck. Let us know how the appointment goes. Dedee

Kim, Thanks for your concern. Actually the break was very close to the end of the bone (wrist) and the bone fragment was evident since the beginning. Most times they don't cause any problem. With children though, because they are constantly building new bone it isn't unusual for this to happen. I have read of several other cases online. Also, the hand specialist we saw at Vanderbilt said he has seen it before several times, not real common, but it does happen. Of course, it would have to happen to my child. My son has been on Amoxicillin for a little over a year for his PANDAS symptoms. He hasn't needed any other antibiotics since then. I think he is handling it all pretty well except for this sleeping issue. Whew, it is really a problem. Just hoping it resolves soon. Thanks again for your suggestions. Dedee

Well hello, I didn't even think of the epson salt bath. Obviously it has been a while since he was using those to help with his tics. He has been mostly tic free since starting his antibiotics last year, so we haven't changed any of his meds around in a long time. I did notice the other day that he is starting to repeat words and phrases sometimes which the neurologist says is a type of tic that most people don't recognize. But he has been under a tremendous amount of stress so I would expect to see something. Thank you all so much for your input. Sometimes the brain goes dead from dealing with so many other issues involved. It's great to know I can count on everyoe here for great advice and comfort. Thanks for your words of encouragement! Dedee

This is sort of a long story, but I will try to shorten it as much as possible. In March my son (who has PANDAS), had a bad fall off of his bicycle and broke both bones in his right arm. He was taken to surgery that night for repair. About a week later, they noticed on X-Ray that one bone was shifting significantly back out of place, so they took him back to surger next day and pinned the bone. That stayed for a month and after his external pins were removed we thought all was good. Ha - not to be. A few days later he lost the use of two fingers in that hand. So he went back to surgery for tendon repair. The orthopedic doc believed it was damage from the accident that caused the tendon rupture. Well then a week after that surgery, he still could not move those fingers and had lost movement of his wrist as well. So off we went to a hand specialist who recommended another surgery for a bone fragment that had calcified and was causing tendon rupture in the hand. That was done last week and we were told that he had significant amounts of scar tissue in that hand and that a bone fragment had traveled then grew new bone around it causing a large bone spur that was limiting his motion. Ok, so they supposedly have all that fixed now and hi is doing PT / OT every day. There is great concern for more scar tissue and such so I took him off of his cal / mag supplements to try to avoid that issue. Problem is now all of the sudden he can't sleep. I mean hardly at all. When he finally does fall asleep he then wakes up every several hours and has trouble going back to sleep. I tried the timed released melatonin that a doc had recommended, but that helps very little. Last nignt I gave him a benadryl, but that was a joke. Did nothing. I know he has a terrible amount of anxiety over all of this. He is very concerned that he will never have complete use of that hand again. I am sure he lay's there at night thinking about it all over and over. He needs constant re-assurance that all is going to be fine. I just wondered if anyone had any ideas of something I could use to replace the positives of cal / mag, without causing increased bone tissue growth. Hopefully this will only be necessary for a few more months but the poor guy is miserable. His other meds are: multivitamin, amoxicillin, & fish oil. Sorry this is so lenghty. It has been a long three months. I appreciate any advice / opinions. Dedee

Myrose, I just wanted to add that my son (who has PANDAS), had the frequent urination issue at one time as well. He actually just felt as though he needed to urinate but couldn't. Similiar to a bladder spasm, if you have ever had that. Anyway, when we saw Dr. Murphy, she said this is definately an issue with PANDAS children. She said they are not sure whether it may be a component of the area surronding the brain which controls bladder function that is affected by the strept antibodies, or possibley that the strept antibodies actually have some affect within the bladder itself causing these urges. Either way her suggestion was not to make an issue of it and basically accomodate the need whenever possible without comments or criticism. I know how frustrating it can be, but with my son it usually never lasted more than a couple of weeks. Now that he is on antibiotics daily he doesn't have these issues at all. Good luck with your child. Dedee

Bonnie, You are right, as my sons psychiatrist tells us, OCD is simply a form or extension of anxiety disorder. When my son first began showing OCD symptoms they were coupled with extreme anxiety. He said he had these thoughts all the time and he couldn't make them stop. He actually stopped eating for about two days because of his fear of comtamination from dirty plates, etc. His symptoms were very debilitating in the beginning so we did end up using medication (SSRI's) to help him through the initial trauma. This did work very well for a while, and as he has shown improvement over the years we have weaned him off of the SSRI's. We also treated his underlying cause (PANDAS), so that is a factor as well. One of his physicians recommended fish oil, which seems to have helped with his anxiety also. I was not able to get his symptoms under control with supplements alone, and only saw great results with the antibiotics for his PANDAS. I have had some minor improvements with supplements since then and mostly the supplements have helped with his tic disorder. He takes probiotics, cal/mag, fish oil, multivitamin, extra vit C, and amoxicillin. As some of the others have stated, you may have to work with a few and see what kind of results you get. Each child's response is so individualized. I hope you are able to find the right answers for your son. It is a terrible thing for a mother to watch her child struggle and suffer. Good luck, and hang around here, you will get some great information from some great people. Dedee

BMOM, I am curious as to when you ran out of the Pen V? Was it before or after the swimming party? My sons tics alway return within 48 hrs of stopping an antibiotic. Also, I have heard of many here who say that the chlorine and other chemicals will worsen their childrens tics. Even though he hasn't done it before, he may just now become sensitive to it. I don't believe that means it is not PANDAS. Many PANDAS children have other triggers other than illness. Regarding the "finger playing thing", Dr. Murphy told us the same thing when I told her how my son had a "tic" that involved his fingers at one time. However, that did pass after he began antibiotics. It doesn't have to be a permanent symptom, only that it has happened at some time during the illness. Usually following a strep episode or a flare up. It could easily be overlooked if there were other tics that were more bothersome. I am so sorry you are struggling. I know how frustrating that is. I hope you are able to find a diagnosis and the help you need. Hugs and prayers..... Dedee

Jenny, I just wanted to add to the great advice you have already received. It has been a while since my sons diagnosis (PANDAS with OCD & tics). However, I can still remember it like yesterday. I kept thinking how hard it was going to be on him at school and with friends. I would cry every day and I was horrible to my poor husband. He just didn't understand any of it and was so willing to take what the doctors said (which was useless) as gospel. I think when I finally just accepted that this is what we have to deal with and he is still my sweet, loving little boy, things started to get better. I continued to fight with doctors until I found the right help, but I wasn't so crazy and uptight. It is so difficult when you can't get the proper care for your child. It is such a helpless feeling. I look back on all of that now and realize that I am a much stronger mother and I am more accepting of my children as they are. I think in many ways the entire struggle was a blessing for my spirtual growth. Of course, no way could I have seen that then. I will pray for you and your daughter. I hope the road smooths out for you. Good luck in your efforts. Dedee

It does seem strange that they would not use Zithromax as that is usually the next line antibiotic for those allergic to the penicillins, and it works so well for strep also. My middle child (not PANDAS child) got strept again just a few days ago and I talked the doctor into Zithromax because I like the way he can take fewer doses and I can still get in probiotics etc. I really think it is a good choice for the old nasty strep also. I hope your child improves soon. Dedee

Just to make sure that you have all of your information correct; When you say that IVIG is safe, are you sure that is completely a true statement? I am a RN and I can tell you that all invasive procedures risks. We did consider trying to find someone to do IVIG for our son if the antibiotics did not work. However, I had great reservations, and would have only done this as a last resort. I understand that many have children who are suffering greatly and in that situaton I would certainly consider it, but to say that it is without risk is a misconception. I have seen many "safe" procedures result in devestating outcomes though this is often times not discussed or documented. I am certainly not telling anyone what they should or should not do. As I said, we considered it as well. I am only saying, you should make informed decisions. Good luck to all. Dedee

I am sorry that I am not familiar with your sons history. Does he have TS, PANDAS, what is his background. It is not at all unusual for children with PANDAS to have issues with urination. Dr. Murphy told us there is a unknown component in PANDAS children that affects the bladder. They aren't sure if it is a direct affect on the bladder itself or an affect on the portion of the brain that interprets messages from the bladder. Anyway, many children feel the urge to urinate even though they really do not need to and make frequent trips. This is an issue that comes and goes and often correlates with strep flare ups, exposures, or illness. My son has had this problem in the past but it has been many years. I occasionally notice him making more trips but rarely for more than a day. In regards to the RLS, we also have issues with that but not with my PANDAS son. My other son had that at one point but it seemed to get better when I started giving him calcium and mag. I have also read that B vitamins are a treatment as well. I also have a 4 year old daughter who recently told me one night that she could not go to sleep because her legs would not stop moving. Of course, she is to young to take calcium supplements, so I am at a bit of a loss at how to help her. There are many nights that she tosses around and throws those little legs all over the place. I have tried to get her to drink the kids calm and so forth but she will have none of that. She is very particular and can usually tell if I have added anything to her food or drink. I can't even get her to take a multi vitamin yet. I wish I knew what to do to help her. I am sure it is a pediatric form of RLS, and since I suffer from RLS as well I know how miserable it can be. I hope you get some help for your son soon. Take care. Dedee

Just wanted to chime in with my experience. I can not give you any input on official names. I can however tell you that my son has been to a neurologist and to Dr. Murphy. Both of them asked about him repeating phrases or words, and when I said yes he does, they wanted to know specifically if it was repeating things that I said to him or things he had said to me. I was assured that this was a type of tic, and would come and go as his other tics do. Indeed it does and currently he does not do it at all. Many children do this and parents do not recognize it as a type of tic. My friend has a child who whispers words over and over that sound different or unusual whenever they come up in a conversation. I have read that this can be a mild type of tic. He also has OCD so it is not surprising that he would do this also. Anyway, just wanted to let you know of my experience. Hope it is helpful. Dedee

To answer your question, we gave him Augmentin 875mg twice daily for ten days then went straight back to the Amoxicillin 250mg twice daily. As I said we really only hit a very mild bump in the road with this occurance and he still continues to do well. I hold my breath to see what the rest of the winter brings. Time will tell. My pediatrician doesn't mind doing this of course because Dr. Murphy has written the letter of recomendation stating that this is the best course of action for him. Now, I am not sure what will happen if things were to get worse or whatever. I suspect we would make a call and make another trip back to see Dr. Murphy to discuss the need to switch preventive antibiotics or what she might suggest at that point. But I try not to look for trouble where it doesn't exist. So far so good. Hope this is helpful and I hope you have good luck with your son in the new year. Dedee

Kelly, I am sorry it took me so long to respond. I have been away for Christmas and so busy I haven't had time to check the board. Hope you had a good Christmas as well. I will try to sum things up as best I can and I hope that I don't leave out anything important. At age 5, my son suddenly experienced an "explosive" overnight transformation with severe OCD symptoms including constant handwashing, fears of contamination, fear of harm to parents and loved ones, etc. This occured as he was finishing a round of antibiotics for a strep infection. We were not given a PANDAS diagnosis at that time. We did start him on an SSRI (Zoloft, at that time), so that he could function in school, which worked very well for him, and things went back to a relatively normal state. When he was 7 yrs old he got strep again, and he began to have some behavioral problems in school, more emotional, seperation anxiety, so we changed his SSRI around which helped a little, but we were still not given a PANDAS diagnosis and I was just in the dark as to what to do. He was maintaining fairly well, but I knew in my heart that he had so much more potential. He just struggled so much, and didn't seem happy like the other children. He always complained that he didn't have any friends. It always broke my heart. So anyway, when he was about 9, he started getting alot of ear infections for no real reason, very strange. He ended up getting tubes in his ears at 9 years of age. Very odd. Then at age 11, during the school year, he got strep throat three times, just one right after another. Well, you can imagine we were very concerned and when the third came back positive, and we had already talked to his pediatrician about taking his tonsils out since he had been infected three times since school had started. (We were still pondering the possibility) On the second day of his strep infection, while on antiobiotics, he woke that morning with violent, frequent, head jerking and eye rolling tics. My husband thought he was having some sort of seizure because they were so bad. My son had never had any sort of tic before. At that time he was started on Abilify 2.5mg, by a neurologist. This did help his tics, but it made him so sleepy that he could hardly stay awake in school. We also scheduled him to have his tonsils removed. While he was recovering from his tonsilectomy we stopped the abilify and he was on post-op antibiotics. At that time we noticed that he was completely free from tics. We were so excited thinking that having his tonisls removed had taken care of the tics. However, when the antibiotics were finished, the tics returned within about 48 hours. I thought that maybe it was a coincidence, so I called my pediatrician and spoke to her about my observation and asked if she would agree to put him back on and see what happened. She agreed and gave me a prescription. Of course, you can imagine the results, after 24 hours his tics were better and after 48 hours they were gone. This is when I decided that I needed to take matters into my own hands and do my own research. Much to my surprise, when I started doing research I found my PANDAS diagnosis. So, again I go back to my pediatrician with what I have found, and she says yes she has always thought that was what he has had, but there really isn't anything to do but treat the symptoms. (Thanks for telling me!) So we talk about the whole antibiotic issue and she said that she really isn't comfortable giving me long term antibiotic therapy for him without a specialist giving the OK. So, I think fair enough, I'll just take him to a specialist. (Yeah, right). Well, we go see a ID, who basically thinks that PANDAS is over rated and you should only take antibiotics is you have a positive culture. I left there mad. Then we went to a pediatric neurologist who said he could take them for a while then he needed to switch over to some anti-siezure medicine. We didn't go back. So then, I printed off the study from the NIMH on antibiotic therapy and PANDAS, I took that to my pediatrician and asked her to just give me enough antibiotics till I could get in to see Dr. Murphy. Thanks goodness she agreed. It took about 5 months to see Dr. Murphy from the time I called to get on the waiting list and we traveled about 8 hours. But I assure you it was worth every minute and every mile. Basically Dr. Murphy validated that he needed the antibiotics based on the fact that he had been on and off of them several times by then with documentation that his symptoms would return each time that they were stopped. I mean you could almost time it to the hour of when his tics would return after stopping the antibiotics. It is almost scarry. Of course she reviewed his lab work, his titers and have alway remained extremely elevated, even up to a year after having a strep infection. Not unusual in a PANDAS child. She asked what he was taking and made the suggestion of adding the fish oil and increasing his probiotics. We even talked some about my other children and she suggested that I give them fish oil as well. So the supplements he is currently taking are cal/mag, multi-vit, fish oil, probiotics, and amoxicillin 250mg twice daily. He has had strep once since starting the antibiotics about 15 months ago. That was a little over a week ago. He is doing very well. He did get a few tics from that for about two days, but really nothing that caused us much stress. We really only added some epsom salt baths and a little extra calcium/mag. I don't think anyone noticed but family, as they were very mild. I believe if he hadn't been treated so quickly or already on antibiotics it could have been so much worse. My son is doing so well now as compared to how he was doing a couple of years ago. I am so thankful for the changes that the antibiotics have made not only in his tics but also in his behavior. He has made straight A's all year this year in school and has more friends than ever before. He is just so much happier. We have not really followed a specific diet. I started in the beginning but he was so resistant that he stopped eating and then he had his tonsils out, so we never really tried it agian. I know that so many people have great luck with that and I applaud their hard work and dedication. I can't think of anything else to tell you. Hope this is helpful. Have a great New Year! Dedee

Wow, Airbucket this is very surprising. It doesn't sound at all like what I would have expected. I'm not referring to the diagnosis, just the experience in general. Dr. Murphy usually spends as much time as needed with her patients and I am so disappointed that you were not able to get that opportunity as well. I am sure you had so many questions after having that bomb dropped in your lap. I wonder if she had some appointment or something she was needing to rush off to. But still, they shouldn't schedule patients if there is not time to answer all of their questions. I'm sure you left as confused as you came in. So do you have a DAN doctor picked out or did she suggest one? I am sorry for your disappointment. I hope you get more guidance and answers soon. Keep us updated on his progress. Hope your family has a Merry Christmas. Dedee

Here is the thing, my son does not take what is considered a "full dose" of antibiotics daily. The amoxicillin is only 250mg twice daily. This dose is considered low dose as he is the weight of an average adult. So if you have a strong strain of strep in a weakened system (tired run down child), then all the conditions are favorable for the strep to win the battle. Nothing is 100%. Since he has started the Augmentin we have seen the few tics but nothing else really to speak of. I consider that a blessing. Yesterday both of my other children complained of a sore throat so my pediatrician called in antibiotics for them as well. I am hoping we can get everyone well by christmas. I am keeping a positive mind set and feel like this is still a winning situation since he has been exposed before and stayed negative. So far the symptoms have been minimal, for sure nothing we can't deal with and stay in a good frame of mind. It doesn't seem to be bothering him at all, so again, I try to let him be my guide. Epsom salt baths seem to do the trick in the evenings and it really isn't that noticable to most people. But of course, Moms always watch. Still keeping my fingers crossed. Dedee

Yep, I was very suprised as well. But he never complains of a sore throat and he woke up saying that it was KILLING him. I had some home strep tests and I tested him at home and it was positive. I was afraid that maybe I did it wrong so I just took him on in to the pediatrician and he was positive there as well. But really, everyone in this area that has had strep has been so extremely sick from it and literally no one has gotten better on just the amoxicillin alone. I think this must be some super strain that is immune to the "cillin" family alone. I think we have been very lucky in general though, because last year both my daughter and my other son had strep and he did not have a positive result after living in the same house with them. So I am hoping this is just some fluke. So far he is still doing well, I saw some tics emerging last night, mostly head bobbing and neck stretching. I had him take an epsom salt bath and that helped some. I gave him an extra calcium/mag this morning, and I will probably add another tonight and keep up the baths through the week. I don't know if that is just the beginning or if that is all we will see. Time will tell. Thanks for the good wishes. Dedee

My son is taking Amoxicillin 250mg twice daily. He has been on this for a little over a year now. The strep that is going around his school is really a strong strain. Two children that I know have been treated for the strep then progressed on to pneumonia. My niece got strep and was treated with amoxicillin but after 8 days of treatment had to be switched to Augmentin because she continued to run fever. So evidently this is a strong strain of strep that is going through the community. Of course, I am sure that my other two children will get it now and I worry that he will continue to have this exposure untill we get everyone well in the house. I may try to get more augmentin and keep him on that until all is clear house wide so to speak. So far, he has not shown any neurologic symptoms, but it usually takes about 24-48 hours. Holding my breath... Dedee

Well, I am not sure if I can give you the answer you are looking for but I will tell you what they told me. My son does take antibiotics to help his symptoms so my case may be a little different. Dr. Murphy said the PANDAS typically begins to subside between 17-20 years of age. So she recommended that every couple of years or so that we should do a "trial" period off of antiobiotics and see how his symptoms are. If he regresses, and everything comes back then obviously he still needs them. If he does beautifully, then it may be ok for him to stay off. This is just such a day to day experience for us, I am sure we will play it by ear and see how things are going at about age 14 or so (which will be in 2 years). I am very concerned about my son today. He had a positive strep test this morning after complaing with a sore throat. This is the first time he has actually had a positive stept test in about 16 months since his tonsils were removed and we started antibiotics. He has been exposed to strep before but didn't actually get it, and he still regressed and got symptoms. So I really am scared to think what this could potentially do. Well, we started Augmentin as soon as we could, so all I can do is hope for the best. Wish us luck. Dedee

I also just absolutely loved this lecture and am so glad that it was posted. I saw it a while back and have tried to down load it to a disc to give to my pediatrician but can't get it done. I think it is worthy of every physician accross the nation seeing. Maybe then we would be taken more seriously. I fear that it will be years before PANDAS will be recognized and respected as a "real" disease. I have said it before and I will say it again; health care providers (I can say this, because I am one), just do not want to think "outside the box", and try to understand things that do not fit into a specific mold. And since PANDAS is so varied in each child, and doesn't always present the same, it is easier to dismiss it as bogus. You would think that health care would be more open minded, but in reality it is just the oposite. You either have conventional doctors who generally think only in "cook-book" type medicine, or you have to search out a research type or non-conventional physician who can think in a more "open minded" manner. Thankfully, there are also a blessed few who fall in the middle of that spectrum that have been able to help some of us out. Sorry, to get on another soap box. I'll step down now. Have a good day everyone. Dedee

Wow Kim, I find this so interesting. My mother has so much trouble with most all medications. She always has the strangest reactions. Her health is really deteriorating lately and it seems that most is related to her PD. I can't wait to find the time to read the entire article. Thanks for the post. Dedee

bmom, I guess the thing I would ask myself is how bad is this affecting our family and his life at this point. Do you feel like you are able to handle it well enough on your own right now? If it really isn't bothering him that much right now, then maybe you could wait a little longer and see what happens. JMHO, but I always think you should go by how the childs life is being altered as to how quickly you should rush for intervention. Sometimes for me, it is hard for me to seperate my anxiety, from the way my child is feeling, and very often it is very different. Good luck in your decision. Don't you just hate the winter time. Dedee

bmom, I completely understand your frustration. Can you find another doctor? That was exactly my arguement at one time when I was trying to find someone to listen to me about my son. I said why is it that they will give antibiotics to a teenager for years while they have acne, but not to a 11 year old for tics. Is it maybe because this is something they simply can't understand? I just wish doctor's could think "outside the box" for just once and maybe get somewhere when it comes to actually finding a solution for these poor children. No one has even thought twice about my daughter being on antiobiotics for the last two years for a kidney problem. Heck, no one has even suggested we try her off of them. Well, I just wanted to let you know I share in your frustration. Good luck. Dedee

I think this is a great thread in showing both the genetic link and the chemical link with all of these movement disorders. I have read somewhere on this board a very short article on an association between RLS and strept as well. I only remember it because my non-PANDAS son had a few months of severe RLS after a strept episode and I thought I must be going crazy to think that was what he had back then. However, in our family the link is that my mother has Parkinson's disease, my sister and myself have RLS. We all had strept, according to my mother, constantly as children, and I had Rheumatic fever as a child. I think when you connect the movement disorder genetically and the strept connection there has to be something to that. Anyway, it is just interesting information. Dedee