Dedee

Thank so much for everyones input. To answer some of your questions, Topamax is an antisiezure medication, which I think the posted articles ( thanks!) demonstrate, is in the early stages of being tested for use in controlling tic disorders. The neurologist said she had seen great results with few side effects. But again, I think as you all have said, it all comes back to the fact that this child is a PANDAS patient and requires specific treatment. It is just so frustrating that I have now been to both a ID and Neuro and both agree that he definately has PANDAS, but neither will agree to long term antibiotic treatment. His pediatrician wrote me a few months worth till I could see the neurologist and said we would go with her recommendation. Is it just that they really don't understand how to treat this? I guess there really isn't enough documentation to make it well known. I mean these are supposed to be some of the best doctors in our state. It is really scary. My husband is losing faith in my opinions even though I have shown him every article and made him read them. He is the type that just wants to do what the doctor says, because he thinks they know what is best. This battle gets harder every day. Thank goodness my son isn't struggling to bad right now. While on Amoxil he only has a few eye blinking tics left and some throat clearing that no one else would really notice. He also has some sleeping issues that cause problems at night that we are working on with supplements. When really stressed he will still burst out in tears, but it is better than before. I just think if we were on the right antibiotic some of this might clear up also. Well, again, I appreciate all the input and articles that were posted. I have not started the topamax. I am holding out hope that we can get our appointment with Dr. Murphy before our antibiotics run out. I am not sure how we will manage that trip with three kids and keep our sanity, but all we can do is try. Hope everyone has a good week. Dedee

We took our son (who has PANDAS) to see a "wonderful" neurologist last week. She spent alot of time with us, explaining tics, OCD and the relationship to strept. Of course, I had already read everything and more that she was telling me. She agreed that we actually were seeing a decrease in his tics with the antibiotics and I was starting to get excited that finally someone believed me. She listened when I said that I did not want him on Abilify with it's side effects and that I felt that because of his PANDAS, antibiotics were the "medication" for him. I asked about switching from amoxil to Azith to see if we could clear up some remaining symptoms he has. So she tells me her plan is to start him on Topamax and slowly increase this medication. It has no bad side effects like the other "antipsychotic" drugs, will not cause drowsiness, or weight gain, ect.., new to treating tics. She would like to have him on it for a couple of months then start to gradually wean him off the antibiotics. Now, I know about Topamax in that I take it myself for migraine prevention. I also admit that personally, I have had few side effects and it has worked well for me. However, we are talking about a child with PANDAS. Am I missing something here? How is taking him off antibiotics going to treat the under lying cause which is the elevated strept titers? I know I should have jumped in and asked her that question, but she didn't seem the type to appreciate her plan being questioned if you know what I mean. So now here I am trying to decide what to do. I have not started him on the Topamax. I have two more months worth of Amoxil left before I have to find someone to treat this sweet boy. I have our name on the waiting list to see Dr. Murphy in Florida (10 hr drive) but really do not know when that may develop. Looks like around April or May. He is doing pretty well really since the tonsillectomy. I just think we could clear up some remaining tics and anxiety issues with the right antibiotic and I am worried about running out of the current prescription. I have started probiotics, and a cal /mag supplement. He has always taken a multivitamin. What is the general consensus on the Topamax for PANDAS? Love your opinions... Have a good week-end - Dedee

Faith, I agree with Chemar. You really do not owe the school system or his teacher an expanation. I have had to deal with this recently and decided before I made my statement that I am the parent, therefore I make no excuses for my decisions which are based on love and my sons best interest. Basically I just told them that my son has a autoimmune illness (PANDAS) that may cause some behavior that is out of character for him and if they notice this I would like to be notified. I explained that we are in the testing stages, looking for a treatment and he would be missing some school. They were not very happy with that, but my son is an A -B student, and I explained that we must balance his physical, mental and educational development at this time and get him completely healthy so that he may move forward. Again, make no excuses or apologizies for your decisions as a parent. You know your childs needs best, stand firm and strong in your love for your child. This I have learned above all else over the last few months. I know you feel discouraged now, and I am sorry for your pain. Just remember that things will get better. A normal happy enviornment is the best thing for your child right now. I realize how hard that sounds to you, but sending big (((hugs))) your way and hoping you have a better day. Peace and Grace, Dedee

Alyssa, Thank you for sharing your story. It is wonderful to hear this from your side. I would be interested to hear who your doctor is in the tri-state area and how satisfied you are as the patient. Thanks again for your input. I am quite sure you are a very special person. Dedee

Does anyone know what the protocal is for Azithromycin coverage in PANDAS? We have had my son on Amoxicillan 250 twice daily, but would like to switch him over. After looking back over his history with the doctors we noticed that he had been treated for strept with amoxicillan without success in the past before having his tonsils removed. So the thought was, it may not be the best coverage for him now. I can not find documentation of the protocal for Azith anywhere to show my pediatrician, but I swear I have read it recently. If you have it, I appreciate the info. Thanks. Dedee

Thanks all for the referral on Probiotics. Do you know if you get the powder form if it can be mixed with milk? Sorry to be so full of questions, just don't want to waste my money if I can't get it down them. My three year old daugher is on daily antibiotics also for a kidney disorder, so I thought she could benefit as well and it is very hard to get her to drink anything unless I disguise it in milk. Thanks again and have a good day. Dedee

Along the same line. I was wondering where or what kind of probiotics everyone uses. I am not sure how much a child along the age of 11 should have. I read one post that said it should be in the billions, but most of what I am finding is only in the millions. So what brand do you all use. Also interested in monolaurin, but don't plan on starting that for a while. Only one thing at at time. We started Natural calm several days ago, and will start probiotics next week or two. So far I have not seen alot of change with the natural calm from my PANDAS son but we are still on the lower dose. Funny thing is, my middle son, who has problems sleeping and makes strange "sucking" noises in his throat during the night, has started sleeping wonderfully quiet. I have the whole family on it, myself included. Hey cant hurt. We all need a little calm right now. So any suggestions on probiotics or anything else welcome. Thanks and hope everyone has a great week! Dedee

Michele, I don't mean to be a downer. I have had my son to an infectious disease specialist and all I got was an ASO and a culture. Not really enough information. I couldn't even get them to repeat the ASO to see if it is going up or down. I am just so frustrated with the whole process that I took the advice of someone here and ordered a PANDAS profile kit from the Immunosciences Lab in California. They will do this at a discounted rate and they know EXACTLY what to look for and how to interpret the findings. I just recently ordered my kit and have not received it yet. If we decide to make a trip to Florida to see Dr. Murphy we may not do the panel. However, if it seems that we may possibly get cooperation from someone here we will move forward with this option. You have probably read about this lab in Dr. Vojdani's article in Latitudes regarding PANDAS. I wish I had the exact link to post for you, but I don't. Maybe someone will come along who does. Good Luck. Dedee

Thank you Colleen, Printing as I type. Very good article. I will add it to my collection. I am glad you decided to join and offer your input. It has been very helpful. Sincerely - Dedee

Thank you Colleen. My son was doing well on Amoxil for about two or three weeks and now we are seeing some break through tics and anxiety symptoms. My ped said she was going to call Dr. Murphy in Florida for advice and get back to me, but that was a week and a half ago and I haven't heard anything yet. I am to see the neurologist in three weeks, but do not feel hopeful since we have already spoken by phone only to get the suggestion of antipsychotics. Very frustrating. It is looking like I will have to make the 10 hour drive to Gainsville Fl. myself. I appreciate the words of encouragement. I will not give up, till we get what we need. Does your child take any additional supplements? Dedee

Thank you all for your input. I never thought about whether he does it in his room. I will try to check some night, if I can ever get him back in there. That only makes sense. I am trying not to worry as overall he is a pretty good kid. His issues are mostly about sleep, and he just can't let go of something once he gets started on it. He will ask the same question over and over till you think you will scream. I have always said he is like a dog with a bone once he gets started on something. Also, mild anxiety, but nothing as bad as his older brother. I may try eliminating the dairy and see if this helps them both. Thanks everyone. Dedee.

Last night was a rough night at my house. My oldest son was complaining that he has a new tic that involves his ring finger and pinky finger jerking making him want to pull on them. Ok, so I am thinking where are the supplements I ordered. Not here yet. I am about to start the Peter Gillhams Magnesium supplement to try to aid in his "break through" tics. So instead he wants to sleep in my room to help him go to sleep. That means that my middle son comes in also to sleep. Well, what I notice is that as soon as they go to sleep, #2 son starts making this noise in his throat and he pretty much does it off and on all night. Then I start to think about it and I realize that he has done that pretty much every time he comes in there for a long time. So my question is, am I paranoid, or is this some kind of night time tic? What else could it be? I can not imagine that it is some allergy drainage or something. Really wierd. He is asthmatic, but is on medication and all of that is currently under control. This has been going on for some time, I just never made the connection until last night as I lay there thinking of my oldest sons new tic and listening to my middle son and thinking, wow that really sounds like a tic, I wonder..... I just wondered if anyone had ever heard of children who only tic during sleep. He has always had some anxiety issues about sleep and would love to sleep in our bed all the time, but I manage to keep him and his brother together in their room most nights. Occasionally I am weak, and give in and the whole clan ends up in one bed, that is when I notice it. Anyway, just thought I would ask the experts. Please let me know what you think. Thanks. Dedee

Michele, Honey, I am so right there with you! My son is just classic PANDAS, of course no one told us about it till we researched and found it on our own. Then couldn't convince them of the need for antibiotics. We even went to the big Vanderbilt research hospital where they are supposed to know everything about everything. Well they do know, and they do agree about PANDAS, but just not about antibiotics. The opinion is, that if the tics stop when he takes antibiotics it really is just a fluke. After all, his culture was negative. We tried to buy into it, after all they are the experts. So once again we stoped the antibiotic, and what happened, the tics started back. Started the antibiotics back, major improvement in the tics. There are other associated symptoms as you described, but none as debilitating. He has mood swings, irritability, concentration problems, but these are mild compared to the other issues. We have dealt with this for 6 years. My son became an overnight OCD when he was five immediately following a strept infection. All I was told at the time was that the strept had triggered it and that he would most likely grow out of it, nothing you can do. So he has been on SSRI since then. He got worse at age 7 with another strept infection and we increased the SSRI. I still knew nothing of PANDAS. I just thought is was a strept trigger. It wasn't until he started having terrible tics in November after several strept infections that I started doing my own research and came up with PANDAS. When I went to my ped. with it, she says "well yes we have known that all along". Hmmm. Wonder why no one gave me the name, so I could make some decisions about my child. Anyway, long story not so long, several doctors / specialists later and still no one wants to write that long term antibiotic script. We have a one month supply now, so we are currently looking for another physician who can make our pediatrician a believer. Thank goodness she is an open minded person and trying to make sure we do what is right for my son. Anyway, What I was trying to let you know is that I really feel your pain and wow I bet with you being pregnet you must be so much more upset and worried. Stay strong. Knowing the problem is half the battle. And now at least you have a place to come for advice and guidance. Listen to these ladies who have used the supplements, sounds like they have had great success with them. Hope things go well with your new arrival. You must take care of yourself. That is the first step to helping your children. Get plenty of rest and good luck. Dedee

Thanks Alison for your advice, sounds like a good plan. We did start the antibiotics back last night. My son was really down because he could not control what he described as fierce "episodes" of head jerking. Although they only last about 5 to 7 minutes, then will completely go away for several hours. I am sure that this will only get worse the longer he remains off the antibiotics. I believe we will leave him on twice a day for a two week course, then when we add in the Calcium / Magnisum supplement, I am going to see if I can back him off to once a day on the antibiotics. We sill haven't heard anything from the ped, as to if she spoke to another doctor. I am just trying to keep the faith and know that if I have to, I will go there or where ever I have to myself. Thanks - Dedee

Ronna, That is so interesting about restless leg syndrome in post strept. individuals. I have had RLS for many years, and last year my middle son started crying at bedtime with complaints that his legs would not "stop moving". It was very hard for him to describe, but I understood completely. He was almost 6 at the time, and started sleeping with me so that I could soothe him and help him get to sleep. I discussed this with my sister (who has RLS also) and my husband after it continued for over a month and started to talk to the pediatrician about it, but I truely thought she would think I was crazy. Finally after a few months my son settled down and only complains when extremely tired now. He still has difficulty getting to sleep some. For the life of me though, I can not remember if there was an associated Strep around that time or not. He has had several infections just as his older brother, who has PANDAS. I only watched for that sudden onset of OCD back then as that was all we were aware of at the time. I am so much more in tune now. Anyway, I thought that was interesting. Thanks for the post. Dedee

Thanks Alison, he is on Amoxil. I have heard I should start Magnisium and Probiotics. Also, he is such a huge milk drinker and so many of you all speak of your children doing much better off of dairy. I wonder if this is something I should consider as well. He may start a mutiny if I try to take his milk away. Chemar and Ronna, thank you both for all of the info you have provided thus far. The links to articles and everything else have been so helpful. You all are such a blessing and answer to my prayers. Dedee

Hello everyone! Thank you all for your input! Your wealth of information is invaluable. I wish I had known more about PANDAS years ago. Ronna, my son did have an abrupt onset of OCD at age 5 that was associated with Strept. However my pediatrician at that time did not mention PANDAS, and only said that this would go away with time. He exacerbated at age 7 with another strept infection. Again no one mentioned PANDAS and I had no idea that there were other illnesses that strept could bring on. It wasn't until this year that he had 4 strept infections over 4 months that resulted in anxiety disorder and TS, that I did my own research and found out about PANDAS. Since then it has been one doctors visit after another and the most information I have found out has been through wonderful people like you who are willing to share your experience and wealth of knowledge. Each time he has strept, he literally has an overnight change of some kind. My child absolutely changes before my eyes. We had his tonsils and adnoids taken out after the tics started in november. That is when we made the correlation between the antibiotics and the tics. After stopping his post-op course of antiobiotics his tics came back full force. I talked his ped. into trying some for just a few weeks to see what happended and again, they stopped all together. However, the infectious disease specialist would have nothing to do with long term therapy, and would not recommend this to my pediatrician even though they believed he is a PANDAS patient. Alison, thanks for asking about my appointment Friday. My pediatrician wanted us to take him off the antibiotics for a few days, (we were out anyway), just to document what happens when he is off of them. In the mean time, she said she would try to get in touch with Dr. Murphy at Shands Clinic, and tell her of my sons history. Maybe she can get a recommendation by phone from Dr. Murphy. Well, at about 36 hours off of the antibiotics his tics started in clusters. He has "bursts" of about 5 minutes where he can't control them, then it stops for several hours. We will see where things go from here. As a mother, and being so new to this, I wonder if I should start some supplements that I have read about at this point to try to calm down what he is going through, or should I watch and document. My pediatrician did give me another month of antibiotics that I could start back until we hear something back from this doctor or until I can find a specialist on my own to take him to. She just doesn't seem really comfortable writing the prescription long term without the ok from someone who knows more about it giving the thumbs up. So, I am open to suggesions. I have heard that I should really treat the PANDAS as he is 11 yrs old and so close to puberty. Does that mean use antibiotics to stop the tics (it obviously works for him), instead of spending alot of time trying to find out if supplements will help? I really only want to do the right thing for my son. I think there is no doubt in anyones mind regarding the PANDAS diagnosis. Some physicians are concerned about resistance in long term antibiotic therapy. I am not so concerned about that as I am about the results of PANDAS on my sons basal ganglia if left untreated through puberty. I don't mean to open a can of worms, I am just at an impass. Any and all opinions welcome..... Dedee

Wow, I am overwhelmed with everyones response. I can't believe how much support I have received here. I can not imagine where I would be if I hadn't found you all. Thank you so much for your concern and willingness to help. The information is so helpful. Carole, could you please give me the e-mail for the doctor in Tenn. That is so close to me. What kind of doctor is he. Do you have personal experience with him? I am so ready to make an appointment. I am willing to go to Florida, but that would be about a 10 hour drive. This would be closer. Did you have a good experience with him? I am going today to try one more time to see my regular pediatrician with information in hand. Not feeling very optimistic since she has already spoken to the ID specialist. Well, one can only hope. Again, to everyone, Thanks, Thanks, Thanks DeDee

Well I really thought I might be on the right track. I took my son to an Infectious disease specialist. They did labs and said his culture was neg. and talked about how high his ASO titters were. We discussed the fact that his OCD and recent TS is PANDAS related and she seemed to agree. She wanted to discuss this with a pediatric neurologist and do more research before making a recomendation. So I get the call today, and her only recomendation is to take him off antibiotics. I am like WHAT! So I explain again, that when he is not on antiobiotics his tics return in a big way. She tries to tell me that this really makes no since if he is currently strept negative. I basically said then come live at my house. Anyway, that is her recomendation and we will not be back. So now I am back to square one. I have about 4 days of antibiotics left that my primary pediatrician gave me awaiting this persons advice. I sent a copy of the most recent NIMH study of antibiotic therapy in PANDAS patients to my pediatrician hoping to convince her that this is the way to go, but I think she wants the advice of a specialist. I really am at my wits end. What am I to do now. We are to see pediatric neurology on Feb 6th, but I have no faith at all in that. They just want him on ant-psychotics. That is not the answer. My son is 11 years old and has suffered from OCD since he was 5. This TS is all new to us. He has been on and off antibiotics for 3 months and there is absolutely no doubt regarding the effect it has on his tics. Should I consider going out of state? Someone had mentioned the Shands Clinic in Florida. Does anyone have personal experience with this? It would be quite a long drive, but if this is the only hope for getting help for my son then maybe I should consider it. Any suggestions????? Dedee

Wow, thank you so much for this information. It is great to have something in hand to show instead of just saying, well I read it on the internet. I am sure you all understand. Even though I have a good relationship with my pediatrician, it is still hard sometimes to convince her. This is so valuable, thanks so much. My son is just so much better on antibiotics and I am so afraid I am going to have to fight tooth and nail to convince these specialists that I know what I am talking about. They just should spend some time with him, there is no doubt at all. Again, thanks to everyone for all your support and help. Hope everyone has a great new year! Dedee

Thanks so much for your replys. I knew that I wasn't crazy. We stoped my sons antibiotics once and within 36 hours he had a throat clearing type tic. My pediatrician was doubtful, but agreed to try Amoxicillian just to satisfy me. It took 3 days before the tics began to significantly decrease. Now they are only slightly noticeable. However, both my pediatrician and the infectious disease doctor seem reluctant to agree to long term antibiotic therapy. They are going to consult with his neurologist tomorrow and let me know. Where can I get the info from NIMH on long term antibiotic therapy for PANDAS? I would love to have that for reference. I really don't know what the big deal is. No one thinks twice about giving it to my three year old daughter for the last year for a kidney disorder. Why should OCD and TS be any different? Thank you again for all your help. I feel stronger with support from those who have been there and survived! Dedee

Well, I took my son to see an infectious disease specialist last week. Over all it wasn't too bad. They didn't look at me crazy when I mentioned PANDAS, which is a start. We got started with a couple of basic labs. They called me today to say that his Strep Culture was negative. However his Strep Antibodies were "significantly elevated" at 1,284. She wants me to keep him on his antibiotics for now until she speaks with his neurologist. I want him on the antibiotics because when he is off, his tics get much worse. They are barely noticable while on antibiotics. Of course not many doctors approve of on going antibiotic therapy. So what does anyone think of the antibody results? How high is 1,284? He hasn't had a strep infection in a month. Has been on continuous antibiotics since then. Sounds pretty high to me, but hey I'm just the Mother right?? Any input would be greatly appreciated!! Dedee

Thanks for the information. I am in Tennessee, but would travel if necessary. I would love some names. We have started to see a variation in his tics now. Very upsetting. I have taken him off of his antipsychotic medication as he could not stay awake while taking it and I am planning on trying some supplements, but I want to make sure that I get all of my information correct first. We plan to see an immunologist the first of the year. This is all so stressful and I am searching for all the information I can find. Thanks for anything you can provide.