P_Mom

Dedee, Thanks for getting back to me. I am glad your son is doing well. Where are you from? Thanks! Kelly

Hi All, I just finished making an appointment at the Cleveland Clinic for my son. He just turned 5 and I believe him to have PANDAS after sudden, explosive vocal tics and ocd after strep this summer. When he was three and had strep, he showed signs of ocd, mild, went away and we didn't think much of it. This time was terrible. He is doing well now, and I want to keep it that way as I understand with more illness/strep, it just gets worse and harder to manage. He is not taking anything right now, and his lack of protection scaes me. I have had NO success with docs here in Pittsburgh, we either get told PANDAS is not real, or, yes, I heard of it, believe in it, but do not know what to do about it. I found a doc at Cleveland Clinic, 2 hr. drive, who has heard of it, has dealt with it, and treats it!! I was told he would not brush us off or turn us away without helping us! YEAH!! I was wondering if anyone else had gone to Cleveland Clinic ? (Cleveland location, not Florida) Thanks! Kelly

I have heard citrate is best!!

Hi Kim! This is Kelly, I made that remark about the titers. I spoke with Dr. Swedos assistant at the NIMH. She said patients with high titers can be fine, and ones with low, not so good. She said "it really doesn't work that way" when I stated that it seems symptoms depend on high titer levels. It is the dramatic onset associated with strep. Anyway, I believe all kinds if illness, infection, shots, etc., can set this off. With PANDAS, it is clear cut, strep. But PITANDS, well it can be anything. I read a study of an 18 year old girl, with no history of anything, develop severe ocd, becoming completely incompacitated within days. Her strep titers, both aso and AntiDNAase B, were completely noraml, but her Mycoplasma titer (walking pnemonia bacteria culprit), was significantly elevated. She received IVIG and has been symptom free since. Just something to think about, I believe there is a lot of merit to infection related tics/ocd. I think it is much more common than people realize, because the tic/ocd with illness sometimes can't be illicited because these kids can show no symptoms. I believe it is much more common than true inherited TS. Just my opinion! Take care. Kelly

Hi Chemar, Thanks for your reply. Boy, this whole tic/ocd/ts thing is so confusing! Anyway, what is SID? And what tics did he have when he was tiny that you didn't know what they were? Thanks so much again!! Kelly

Hi All. I just wanted to know how inherited TS manifests itself. Did anyones come on suddenly, without warning like PANDAS does? When PANDAS happens, it is so abrupt, without any earlier signs, and the tics are complex, explosive, with ocd and behavioral issues mixed in all of the sudden. Did anyones inherited TS manifest like that? Or does the inherited kind come on kinda slower, with mild tics starting, then becoming more complex, etc. with time? Thanks!! Kelly

Hi Lisa, Hey, could you let me know if you are successful in having Dr. Murphy speak with your family doctor? I may try to do that as well if she is willing. Take Care! Kelly

Michelle, Glad to hear the good news! Just curious, when you say "exposure", do you mean exposure to strep or to any illness? Has he gotten strep while on antibiotic? You know, I have noticed the same thing about diet etc. Sometimes it seems like something they are eating, lacking, etc., is causing tics. But then the next day, the same foods, enviroment, etc., causes No reaction. I think with PANDAS, it is mainly illness, etc. Not 100% sure, it just seems that way. My sons ticcing increased recently, and he did not appear ill at all, except I noticed a mild, rash on his torso that has now gone away. That had to be some kind of virus, and I believe that is why his symptoms increased, although mild, nothing like when he has strep!! Take care. Kelly

Hi All! Hope everyone had a great Thanksgiving. Two questions..... I was reading some old posts the other day and came across one from either Dedee or Michelle and it stated something like " if I would have gotten my son's tonsils/adenoids out sooner, he wouldn't have the tics, but he still has suffered from ocd..." I am not sure who wrote that and I can't find it again right now, but, I am curious as to the conclusion that the author's son wouldn't have tics if the tonsils were removed sooner. Was that a gut feeling, or was it confirmed somehow? I am very curious because my son has just had his tonsils/adenoids removed early November for breathing issues. He did develope two motor tics, (which are mild except for the day they started at baseball , and then at the next baseball game), and this was after a strep infection this past summer, we barely see the tics as of today. Also, with my younger son, who just turned 5 in October and had explosive vocal tics/ocd after strep this past summer also. Well, I should say that after his first strep infection at 3, he developed mild ocd which we thought was strange, but it was mild and went away. This time at 5, big difference! It was bad, and right now he is doing well and almost totally asymptomatic. I, as well as our Ped., am ruling this PANDAS, he fits ALL criteria. My question is this... even though he is doing well right now, without taking anything, should he be on a preventative antibiotic now, to prevent strep and recurrences? (well to try to prevent it anyway?) We have heard conflicting advice on this, what do all the PANDAS mom's think? I am thinking treat it now before it gets worse, right? Some are saying to wait and see what happens, or to wait for another flair? I just don't know what to do. All advice would be greatly appreciated!!! He is doing well and I want to do what I should to keep it that way!! God Bless! Kelly

Hi, Just for PANDAS moms info. I spoke with Susan Swedo's assistant at the NIMH yesterday. She told me that blood titers are not a means to diagnose PANDAS. So, just because your child's is low, or even high, does not define PANDAS. It is mostly the sudden, abrupt, onset of tics/ocd related to strep, and then the exacerbations associated with strep, illness, etc. Take care! Kelly

Hi, My name is Kelly and I am dealing with PANDAS too as of this August. One thing I do know and I noticed in your post, if there is only a sore throat, fever (sometimes), it can very likely be strep. It is usually not strep if the sore throat is accompanied with runny nose, stuffy nose, cough, congestion, etc. The more cold symptoms, the less likely strep. Is your son currently on a preventative antibiotic? I purchased at home strep testers, which help, but, I do not rely on them totally. Anyway, I hope us PANDAS moms stay posted and help each other along this difficult journey. Kelly

Less infections/illness in the summer. Check the PANDAS route just to be sure you know exactly what you are dealing with. If not, well, then atleast you know. PANDAS kids will have more tics/ocd/other behaviors associated with illness, infections, shots, etc. Take care. kelly

Anna, Hi. I just wanted to say that every kid is different. The fact that one kid reacts to red dye, etc., does not mean yours will, or that eliminating these things will help. There are many reasons for tics, your child may not have sensitivities or allergies. Did you get him checked? Especially if your childs behavior is PANDAS related, most likely infection (and remaining high antibody levels), is causing the problem and diet changes, although I agree it can't hurt, may not help at all. Did you have blood work done to check for antibody levels? Is he currently taking an antibiotic? Take care! Kelly I have not had any blood test done as of yet i have a doctors Appointment next week to talk and tell him what i want done no he is not taking antibiotics right now ok i have another question!?? can a child with PANDAS be feeling fine and still have a infection! i tell ya i am so overwhelmed with all the different things! i just thought i would try the basic things right now by taking things away thanks again! i think i should change my name to CONFUSED MOM! Ann Anna, I know how you feel. All this info. is so overwhelming, you can stuck in this.. "oh, I need to do this.. eliminate that, etc", and it can do more harm than good if you stress yourself out over it and try to do everything at once. If you want to do the elimination thing, start WITH ONE THING at a time... wait a week or so and see what happens. The fact that you eliminated red dye 40, yellow dyes, and MSG at once.. well.. how will you know which one is causing a problem if you see an improvement? YES!! It is classic for PANDAS kids to appear perfectly healthy and still have an infection. My son showed absolutely no signs of Strep when he first got it at 3!! He also is the one in the family who always "seems" to be the healthiest and doesn't show signs of sickness much.. The rest of us will be so sick, and he will show a little sniffle. Just something to think about! (as though you don't have enough to think about already). If I were you, just to be sure, get ASO titer, ANTIDNAase B titer, and Mycoplasma titer drawn. Also, if possible, see if your child improves when on antibiotic. One question.. did your child develope these behaviors rather suddenly? Kelly

Anna, Hi. I just wanted to say that every kid is different. The fact that one kid reacts to red dye, etc., does not mean yours will, or that eliminating these things will help. There are many reasons for tics, your child may not have sensitivities or allergies. Did you get him checked? Especially if your childs behavior is PANDAS related, most likely infection (and remaining high antibody levels), is causing the problem and diet changes, although I agree it can't hurt, may not help at all. Did you have blood work done to check for antibody levels? Is he currently taking an antibiotic? Take care! Kelly

Hi Rachel, Sorry to hear about your situation, although I know very well what it feels like. My 4 year old son developed severe vocal tics and ocd out of the blue this past August as well after a strep infection, which his older brother 7, also had. I remember standing at the counter picking up their anti-biotic when Ethan let out this huge grunt. The lady said, "oh my goodness," and he was so embarrassed and waved his hands and said "no, I didn't mean...." then he just hid. It was then I realized something was wrong because he didn't mean to do it. After starting Pennicillan that day I really didn't notice anything else and kinda forgot about it. After 10 days they went off meds. and everything was fine until about 2 days later when my older son said his throat hurt and the strep was back. (which it wasn't totally eradicated to begin with ) He went on med. again, but Ethan showed no signs of strep (typical for PANDAS kids), so he didn't go back on. I felt uncomfortable with it, so Ethan did go back on about 5 or 6 days later.(thank god) Well, within this time he was exposed to his brother and probably had strep with out symptoms and his anitbodies had time to increase over those days, and I remember on Aug. 15, it all "hit the fan." Explosive vocal grunts/ocd, it was the most frightening thing I or my husband had ever seen. We had no idee what was happeneing, and after extensive research we found PANDAS, it couldn't be anything else. Well, after about 2 weeks of this, ( I didn't eat or sleep and lost 15 pounds), the strep was eliminated and slowly over time his antibody levels came down as well as his symptoms. He is almost asymptomatic right now, lingering, very mild stuff that only I would notice. He is not on antibiotic but we do do the vitamins and fish oil. I need to mention that about 2 weeks after this stuff with Ethan just about ended, my older son developed two motor tics that came on suddenly one day. He did not have any behavioral issued like Ethan , but, I believe this is a milder form of PANDAS (so far and I pray it stays that was). Right now his tics are so mild and occur maybe once every other day or so, not noticeable. Anyway, my older son just had his tonsils/adenoids removed also, he had large blockage and needed them removed for breathing issues. (snoring, mouth breathing .) He is doing well, still occasional tics, but I feel good about it because this should help, I know not eliminate, future infections. We are considering it for Ethan based on PANDAS. What you need to do is get blood work done to check for ASO and ANTIDNAase B titers. These will measure levels of strep antibodies in your children and I will expect from what you described they will be significantly elevated, one or both. With Ethan his levels are now normal, which coincides with his symptoms being for the most part gone, but he didn't have strep nearly as much as your kids. (twice total) What I think happens is, the more they have strep, almost back to back, the higher and higher their anitbodies get without having a chance to come down,(it is the antibodies to strep that cause the problem, not the strep itself) and that is why ( I believe), even without active strep, they still show symptoms when off Anti-biotics, their levels are still high and, even given no future strep, it takes a while for them to return to normal, every kid is different and sometimes it can be very long. The anti-biotics modulate their immune system somehow and keep symptoms under control. There are other treatments: steriods, IVIG, that can be considered. Where do you live? Please go to www.webpediatrics.com, Dr. Kovacevic, out of Chicage, has special interest in PANDAS and has been very helpful to us and is more than willing to help. Check out that web-site and then get back to me, I'd like to know what you think. In the meantime, you are not alone, I know how scary this is, I willl be praying for you and your family. Something that may help, although this is new, it seems these kids eventually grow out of this, although you do need to manage it. This is what a MOM told me whose daughter had a bad case starting at 8, then it stopped when she had her period. Is this true for all PANDAS kids, I certaintly hope so. Hope to hear from you soon. Kelly Rachel, Just another two things. Being your kids have had so many strep infections so far at this young age, and the fact that they are home schooled and probably don't get exposed as much as other kids, you may want to check for a carrier in the house. Also, on the tonsil issue, yes, they can act as germ barriers but they can also harbor germs, become chronically infected, etc. Any study or ENT will tell you that in the event of recurrent strep infections, tonsil removal is recommended and reduces, not totally eliminates, future infections. A woman here, Ronna, has a son with PANDAS, with recurrent strep, who greatly benefited after tonsil removal. To try to cure or prevent PANDAS, well, that is when tonsil removal is not recommended, but it is also not advised against if there are medical reasons. (recurrent infections, breathing issues. etc.) I do not know of any study or info. where tonsil removal actually made PANDAS worse. Tonsils are necessary in the first couple years of life to fight off infections, then after a childs immune system develops, they MAY actually become a nuisance/problem. Take care! kelly Rachel. Me again. I keep thinking of things I want to tell you! First, after course of antibiotics for strep, go back and make sure the infection is gone, otherwise it linger and continue to imerge, cause PANDAS symptoms, but no physical ones. Also, being PANDAS kids don't show physical sign of strep most of the time, whenever behavior/ocd/tics increase, get them tested for strep asap! The faster you treat the strep, it can stunt the production of antibodises. You can purchase strep testing kits on line to help you with this, I did. Last thing, you said after tonsil removal you noticed a flow of symptoms. I also noticed you said they had strep after tonsil removal. I would much faster attribute this increase of symptoms to the fact they had strep, not tonsil removal. Remember... more strep/more antibodies/more symptoms. Also, don't get overwhelmed with all the info., other things definitely may help to allieviate symptoms, but, your #1 culprit with PANDAS is infection, more so than allergies, food, etc. Although, like I said, these things can help. Personal disclaimer . This is just my advice after extensive research, consulting with Doctors, and my own experience. I am not a doctor, just keep that in mind. Every situation is different.

Hi Rachel, Sorry to hear about your situation, although I know very well what it feels like. My 4 year old son developed severe vocal tics and ocd out of the blue this past August as well after a strep infection, which his older brother 7, also had. I remember standing at the counter picking up their anti-biotic when Ethan let out this huge grunt. The lady said, "oh my goodness," and he was so embarrassed and waved his hands and said "no, I didn't mean...." then he just hid. It was then I realized something was wrong because he didn't mean to do it. After starting Pennicillan that day I really didn't notice anything else and kinda forgot about it. After 10 days they went off meds. and everything was fine until about 2 days later when my older son said his throat hurt and the strep was back. (which it wasn't totally eradicated to begin with ) He went on med. again, but Ethan showed no signs of strep (typical for PANDAS kids), so he didn't go back on. I felt uncomfortable with it, so Ethan did go back on about 5 or 6 days later.(thank god) Well, within this time he was exposed to his brother and probably had strep with out symptoms and his anitbodies had time to increase over those days, and I remember on Aug. 15, it all "hit the fan." Explosive vocal grunts/ocd, it was the most frightening thing I or my husband had ever seen. We had no idee what was happeneing, and after extensive research we found PANDAS, it couldn't be anything else. Well, after about 2 weeks of this, ( I didn't eat or sleep and lost 15 pounds), the strep was eliminated and slowly over time his antibody levels came down as well as his symptoms. He is almost asymptomatic right now, lingering, very mild stuff that only I would notice. He is not on antibiotic but we do do the vitamins and fish oil. I need to mention that about 2 weeks after this stuff with Ethan just about ended, my older son developed two motor tics that came on suddenly one day. He did not have any behavioral issued like Ethan , but, I believe this is a milder form of PANDAS (so far and I pray it stays that was). Right now his tics are so mild and occur maybe once every other day or so, not noticeable. Anyway, my older son just had his tonsils/adenoids removed also, he had large blockage and needed them removed for breathing issues. (snoring, mouth breathing .) He is doing well, still occasional tics, but I feel good about it because this should help, I know not eliminate, future infections. We are considering it for Ethan based on PANDAS. What you need to do is get blood work done to check for ASO and ANTIDNAase B titers. These will measure levels of strep antibodies in your children and I will expect from what you described they will be significantly elevated, one or both. With Ethan his levels are now normal, which coincides with his symptoms being for the most part gone, but he didn't have strep nearly as much as your kids. (twice total) What I think happens is, the more they have strep, almost back to back, the higher and higher their anitbodies get without having a chance to come down,(it is the antibodies to strep that cause the problem, not the strep itself) and that is why ( I believe), even without active strep, they still show symptoms when off Anti-biotics, their levels are still high and, even given no future strep, it takes a while for them to return to normal, every kid is different and sometimes it can be very long. The anti-biotics modulate their immune system somehow and keep symptoms under control. There are other treatments: steriods, IVIG, that can be considered. Where do you live? Please go to www.webpediatrics.com, Dr. Kovacevic, out of Chicage, has special interest in PANDAS and has been very helpful to us and is more than willing to help. Check out that web-site and then get back to me, I'd like to know what you think. In the meantime, you are not alone, I know how scary this is, I willl be praying for you and your family. Something that may help, although this is new, it seems these kids eventually grow out of this, although you do need to manage it. This is what a MOM told me whose daughter had a bad case starting at 8, then it stopped when she had her period. Is this true for all PANDAS kids, I certaintly hope so. Hope to hear from you soon. Kelly Rachel, Just another two things. Being your kids have had so many strep infections so far at this young age, and the fact that they are home schooled and probably don't get exposed as much as other kids, you may want to check for a carrier in the house. Also, on the tonsil issue, yes, they can act as germ barriers but they can also harbor germs, become chronically infected, etc. Any study or ENT will tell you that in the event of recurrent strep infections, tonsil removal is recommended and reduces, not totally eliminates, future infections. A woman here, Ronna, has a son with PANDAS, with recurrent strep, who greatly benefited after tonsil removal. To try to cure or prevent PANDAS, well, that is when tonsil removal is not recommended, but it is also not advised against if there are medical reasons. (recurrent infections, breathing issues. etc.) I do not know of any study or info. where tonsil removal actually made PANDAS worse. Tonsils are necessary in the first couple years of life to fight off infections, then after a childs immune system develops, they MAY actually become a nuisance/problem. Take care! kelly

Just a bit of info. about vaccines, (which I will not be vaccinating my kids anymore, nor getting flu shots, etc.) I just read that all but two states (I forget which ones) allow you to deny vaccinations for religious reasons.

I wouldn't say antiDNAase is low, still above limits. (if I am reading it right.) It means your child had a recent strep infection and he has high levels of antibodies, which children can have high levels of one, both, or none. If you are checking for PANDAS, this is definitely a result worth looking into. How long ago did your child have strep? Did tics/ocd/ or unusual behavior develop? If so, is this behavior still continuing? Kelly

Yes. prednisone is not good long term, but shows excellent results for flair ups. ( 5 days worth of it)

PANDAS Mom's, I don't know if any of you have heard of this, or would be willing to try for I know this is a very natural Forumn, but, a five day course of Prednisone given in a flair up for PANDAS kids can produce SIGINIFICANT symptom improvement. Prednisone is an anti-inflammatory and immune suppresent, just what PANDAS kids need. I read a forumn from a girl, now 16, who had PANDAS as a child and backed this up, as well I have read several articles on the success of Corticosteriods (you just can't use it long term like antibiotics.) She is well today, when there was a point she thought she wouldn't be able to function normally, and she stated her treatment consisted of Prednisone, IVIG, and corticosteriods ( which prednisone is one) She stated she felt she was well today because of the steriods. Just wanted to make you all aware, something to think about. God Bless. kelly

Ann, No worries about butting in on a post, it was actually meant for you, I just got the names mixed up! Anyway, it is worth investigating, about the strep at birth, etc. Reactions come on stronger with each additional infection, so, that MAY be why you didn't notice anything before. With my son's first strep infection, he was almost 3, his reaction was so minimal, mild ocd symptoms, we didn't even worry about it, and it went totally away. Next strep, almost 5, whole different story!! Dramatic ocd/vocal tics. Do your sons symptoms get worse lately after illness, infection, or immunizations? Does he have separation anxiety, clinginess, nighttime fears or other odd behaviors (anger, moodiness, etc.) that goes along with his tics? Kelly well he was just sickl about 1 month ago with Bronical asthma and yes the tic's did come more!! he gets fevers all the time that will last a day or 2 and go aways when i bring him to the doctors there is no reason for the fever but he does not do a strep test on him either!last year when i really noticed the Tic's was when he had a fever bad and could not find any infection just after that was when i noticed the Tic's as for (separation anxiety, clinginess, nighttime fears or other odd behaviors (anger, moodiness, etc.) that goes along with his tics?) he just started school this year and he was fine with me leaving him with the teacher at the door but now he needs me to go into the school with him also he says to me when i pick him up where were you i was waiting for you! it is so sad but he is fine in a few mins! Nighttime well he has and still does wake up all the time at the least 2 to as many as 6 times a night! he just needs to see me and i rub his back he will go back to sleep! anger, moodiness well if he has been ticing alot he will get upset really easy and lash out at me him yell swear what ever he can do to get it out! i feel so bad for him when he is like this b/c it is like he has got to a point where he cant take no more! (he dont sit and cry or anything like that it is more a frustration thing)KWIM? i must say the tic's did go away in the summer for a little bit well not totally but it didnt bother him as much! Ann Ann, If I were you I would definitely look into the PANDAS/PITANDS possibility. Did he ever at all get tested for strep when he had the fevers? PANDAS kids can show minimal symptoms with strep (No sore throat) and still have it. Request swabs and better yet, throat cultures. You can even have a bolld test done to check his anti-body levels. It really sounds like PANDAS, but,I am not a doctor and I am just giving you some advice with my own experience. Do his symptoms improve when on an anti-biotic? They could actually still improve on an anti-biotic right now even without a current illness! Kelly

Ann, No worries about butting in on a post, it was actually meant for you, I just got the names mixed up! Anyway, it is worth investigating, about the strep at birth, etc. Reactions come on stronger with each additional infection, so, that MAY be why you didn't notice anything before. With my son's first strep infection, he was almost 3, his reaction was so minimal, mild ocd symptoms, we didn't even worry about it, and it went totally away. Next strep, almost 5, whole different story!! Dramatic ocd/vocal tics. Do your sons symptoms get worse lately after illness, infection, or immunizations? Does he have separation anxiety, clinginess, nighttime fears or other odd behaviors (anger, moodiness, etc.) that goes along with his tics? Kelly

Caryn, (I mean ANN!) Hi, my name is Kelly. I jst was reading your post and I noticed your son had a flu shot. Was this recently and do you think the tics started after the shot or increased after the shot? Tics, mood and behavioral issues, can be the result of an immune disorder, , like an over active immune system affecting areas of the brain responsible for behavior and movement, and this can be aggravated by immunizations, shots, infections, strep, etc. Go to www.webpediatrics.com, click on PANDAS/PITANDS and read the info. I don't know, maybe this can help. Wax and wane means to increase for a time (WAX) and then periods of decreased activity (wane). This is a pattern of some tic disorders, wax and wane. Kelly

Caryn, Hi, my name is Kelly. I jst was reading your post and I noticed your son had a flu shot. Was this recently and do you think the tics started after the shot or increased after the shot? Tics, mood and behavioral issues, can be the result of an immune disorder, , like an over active immune system affecting areas of the brain responsible for behavior and movement, and this can be aggravated by immunizations, shots, infections, strep, etc. Go to www.webpediatrics.com, click on PANDAS/PITANDS and read the info. I don't know, maybe this can help. Wax and wane means to increase for a time (WAX) and then periods of decreased activity (wane). This is a pattern of some tic disorders, wax and wane. Kelly

Hi Nicks Mom, Just quick info. on PANDAS.. Stands for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep. This means your kids tics and or ocd come on suddenly and/or dramatically, and also dramatic increase in these behaviors occur after a strep infection. There can also de dramatic increases in this behavior after other illness or infections. Do you recall your son being ill before this recent increase? Just something to consider. god Bless. kelly