michele

Thanks for the interesting input. I never thought about it. However Andrew soes get hyper on red drinks and dyes. How aout the zithromax is it red? Michele

His ASO in March when this all started was 297 and the DNASE was >1460. They have not tested again. How often should I have this tested? My Ped told me that the injection we are using Bicillian LA is a PCN that only targets the strep and won't hurt the good antibodies. He also gags everytime we have tried pills. We are practicing with swallowing M&M's, but he still is having a hard time. I am on a waiting list for Dr. Murphy. To be short about the diagnosis of PANDAS: He was first diagnosed with Sydenham's Chorea by his Ped. The Neurologist disagreed and said PANDAS. I just had my other son tested due to many Strep infections and his ASO was 174 and is DNASE was 960. They are having him see ID. I just wonder if I should start him on PCN also. He did have a neck and arm tic last August that the Ped said was just nerves. It went away after a couple of months and we didn't think anything of it until now. I just had them look back and he had positive strep culture 16 days before I took him in for the tic. Thank you for all the great support. I do not feel so alone anymore! Just wondering have you had him to an allergist for food testing allergies? I have not but that is my next route after I get a hold of a behavioral therapist who works with neurological issues. I have an appointment with a well known DAN Biomedical Dr. in August. I don't know if he will run a full panel with food tests or not. My sons blood work was all borderline for elevated titers and strep. They are at least trying something because of the persistance of me. I have been to the Cleveland Clinic and he said just wait, but I am tired of waiting and seeing him deteriorate. With age he gets worse and with each virus. Is yours just strep? Ours is also viral like flu, strep or colds. It is hard to keep them well so the behviors never seem to go all the way away anymore.

After seeing a pediatric neurologists for 4 years for my five year old son PANDAS I have finally gotten a prescription for penicillin v liquid twice a day for 3 months. He finally was tested by an immunologist for titers and strep bloodwork and tested borderline elevated. I feel happy they are trying something as his emotional state and hyperness has gotten worse recently. I am getting nervous about kindergarten and his behaviors. Has anyone had success with penicillin long term? The Dr. did not seem kowlegable on azith. At least it is a starting ground. Michele Wow! My Ped told me my son had to have the PCN injections until he could swallow pills. I can't wait to ask about the liqid PCN. Thank you for that info! If you go to Google and type in PANDAS NIMH click on the first website and then click on recent publications the first publication that comes up is all about azith vs pcn you can bring to your doctor. I'm going next week and talk to mine about it. I'm also worried about school next year. Do we start the year off telling the teachers and draw attention to my child from the start? It sounds like we are leading similar lives. Andrew is behaving crazy on the antibiotic penicillin V on day five. He is out of control. I have had to deal with one behavior melt down after the next all day. I am really interested in behavior modification. He seems like a master at manipulating us. I am strict and stay on him but he wears us down by his constant tantrums. I have a four month old and would take triplets anyday over dealing with him. I worry the school will label him off the bat and he will be known as a bad kid. His behaviors seem to flare with illness so who knows how he will be at the beginning of the year. He is very smart but may be considered special ed because of his behavior.

My five year old was recently put on penicillin V oral for his symptoms for PANDAS. We were so hopeful this was finally a possible solution to his problem which has recently become worse but has existed for years. Now five days later he is behaving even worse then ever. He has no self control and is getting on everyone's nerves by being loud and obnoxious. He has had one temper tantrum after the next. Today he tried to jump out of the car because I wouldn't stop for a Happy Meal which is one of his repetive favorite things to get. He is obsessed with Happy Meal toys, Webkinz and movies. He is very emotional and is crying and carrying on all day. Could it be the antibiotic? The change in routines now that summer is here? The foods he eats? I called yoday to get him a consult wih a behavioral specialist. This is so hard. I am worried about school in the fall. They already gave him a diagnosis of ADHD for school purposes. I am afraid if I tell this this off the bat they will label him before he ever gets a chance. What can I do? Michele

After seeing a pediatric neurologists for 4 years for my five year old son PANDAS I have finally gotten a prescription for penicillin v liquid twice a day for 3 months. He finally was tested by an immunologist for titers and strep bloodwork and tested borderline elevated. I feel happy they are trying something as his emotional state and hyperness has gotten worse recently. I am getting nervous about kindergarten and his behaviors. Has anyone had success with penicillin long term? The Dr. did not seem kowlegable on azith. At least it is a starting ground. Michele

My sons episodes tend to run for about a month then die down until the next virus or infection. The last time he didn't even get sick but must have been exposed to the virus from his kindergarten boosters. The bad news is the tics seem to improve after the episodes but the ADHD and obsessiveness seem to be sticking around now as he is getting older. He is now 5 and started the strep episodes at age one. There is always a chance it will not come back. Sometimes I even believe it when he seems better for a short time. Last one was in Jan. and we are having anothe one now in May. With age could go away or get worse. Only God and time will tell for sure. My son was never on meds for tics. They always went away. Best of luck. Michele

I feel better after reading the replies. Andrew is really a funny kid. He always makes people laugh. A friend of mine who has an autistic son who has made big changes with behavior modification said ADHD medicines change a little bit of who they are. Andrew is still having some bad days wax cycle. He gets kind of compulsive on things like for instance he wants Spider Man 3 kids meals from Burger King everyday. He goes on and on until it sets you crazy. Then when he got the same Spider man toy he cried for an hour. Little things set him off to a major crying spell. He can really go on and on. He is also obsesed with Web Kindz. He really loves collections and getting them all. Also he obsesses on movies and shows like Harry Potter, TMNT turtles, Power Rangers. He kind of drives us mad. We can't reason with him well. However he can be bribed by a kids meal to be good. Same with McDonalds. He wants the toys. The neurologist didn't seem to believe there is alot of research on the elimination dieting. He said it can be overwhelming. Just to use sence and be aware. I try to avoid dies and sugars with him be causethey add to his hyperness. I know he is smart but does not do as well with traditional methods. He loves computers, and action driven learning not sit and write and color. He drives the teacher crazy because he will not give her a clear indication of what he knows. Hopefully net year he will get a creative teacher who is good with kids who are not always perfect acting. I have two older girls who are quiet little mouses in school. The teachers will be shocked when they get him! As far as tics I am seeing more the finger bending and leg bends repeatidly. I don't know if this is tics as much as compulsive. I am not noticing the linking as much this time. He does shout out some words and can be very loud in tone. Plus he talks back alot and gets mouthy. The Dr. notced him lining up his trucks. He has an order for things. I will try to see the DAN Dr. before school. I have an appointment in Aug. Thanks, Michele

Today I took Andrew to the Cleveland Clinic again to the children's neurologist Dr. Erenberg. Now Andrew is 5 and his episodes wax and wane based on what i have guessed is exposure to viruses, possibly shots, and strep throat and fevers. We had blood work done last week by an immmunlogist. Everything was negative to strep and elevated titers. Dr. Erenberg says a diagnosis is not as important as knowing now what. How do we treat this? He is emotional, cries easily, hyper, talks excessively, motor delays, short attention, compulsiveness, some obsessiveness. When in an episode blinks, and repeats finger movements, frequents urination, and does leg bends at the knees. His behaviors improve some when he is not symptomatic but are not going away. The Dr. says ADHD diagnosis for school purpose. He is five and should start kindergarten in the fall. How do teachers handle this? How much do you tell them or let them figure out? His preschool teacher seemed to get upset with his attention span and frustrated by his ininterest to her lessons. He is not bad but beats to his own drum! The Dr. says to start school med free and see how he does and reconnect in the fall with him after the teacher gets to know Andrew. How have the others of you with Attention problem kids dealt with this early on in school? Michele

Boy do I feel like an idiot. My son who has had PANDAS symptoms since he was thirteen months old and had strep is getting ready for kindergarten. So what did I do? I got him into the Dr. and gt all his immunizations up to date on 4-6-07. This is all so I can register him for school. What was I thinking? Now he is in an episode again. I couldn't figure out why when he hasn't been ill. Now I can guess it was the shots. Also he had a flu shot in the fall to keep him from getting sick over the long winter and getting a new baby sick and I remember him getting an episode the next month. Now I just had a newborn and questioned the Dr. about the shots at birth and held off two months but the Dr. response? There is more of a risk of death from not taking the shot then developing a problem from taking it. I am so confused as why we are pressured into these social "norms". I have a friend who refuses many vaccines for her kids and she is sometimes made fun of behind her back as being a weird one. She may be different but at least she is careful! She really researches things and follows her gut. Michele

I gave him the flu shot because I was trying to keep him from getting sick and fevers over the winter. He only gets the tics and symptoms after an illness or virus. He usually has tics(repetitive finger movements), hyperness, emotionalness, feeling the need to urinate frequently, clingyness. This typically lasts about eight weeks or so. Then it goes away until the next virus.

Thank you for the test information but this is overwhelming. How would I know what to order or how to administer or read them. These sound very scientific. I have no medical background. Can't the Dr. order these? Should I have him test mercury and food allergies? Do immunologist know how to test for tics ocd ADHD behaviors? What are typical PANDAS or PITANDS tests ? Michele

I don't really know anything about yeast symptoms. Could you explain on that? I had him get the flu shot a couple weeks before he came down with strep in Nov. He had a penicillin shot then. It was Dec. when he started with the explosive symptoms again after the flu and fever. He had been symptom free before that for some time summer I believe because he had not been sick in while. Yes I am due anytime now. I am not sleeping well. Thanks. Michele

Because Andrew has had the blinking, finger chorea movements, hyperness, obsessiveness,emotionalness, frequent urination, seperation anxiety,following the stress of illness and high fever,it is not related entirely to strep infections. He has shown the symptoms after strep, after ear infections, virus such as flu and colds. The neurologist has seen some kids outgrow these behaviors as their immune system matures and they get less illnesses with fevers. The neurologist stated there is no treatment to improve long-term outcomes. He ran no tests not even a strep test or titers. My pediatrician also felt because of his age he may improve his behaviors and hyperness and is too young to treat for ADHD or OCD. So I have never received an official diagnosis. The neurologist I saw a few years ago gave me the info on PANDAS and said it may be this or PITANDS. They never ran blood work or did the panel of tests. What sort of Dr. does the PANDAS/PITANDS testing? I called the DR. in Florida but never heard back from her. There is a DAN Dr. who sees and treats PANDAS an hour away but I can't get in to see him until July. What sort of Dr. tests food sensitivity? I ordered monolorin but it never came in yet. My son was hyper the past few days and is now getting a cold. It is challenging in the winter with a household of kids to keep him healthy. My son has been having this trouble since he was one. Now I wonder if flu shots have made him worse. I was trying to keep him well but the Mercury may have made him have more trouble. I know very little about all of this other then what I read online. Are there any good books to look up? Thanks. Michele

I was able to get my five year old into the immunologist on Mon. This is a starting block because I have never got any where with ped, or neorologists. He has had all the symptoms of Pitands. The only blood work he has had done was a strep culture. What blood work should he have done? Any advise for the appointment?

I ordered the MonoLaurin last week. I could not find it in any stores or anyone who knew any details about it. Has anyone tried it for Pitands or Pandas kids? I called Dr. Sweedo in Florida but never heard back from her as to a Dr.she would refer in Ohio for Pitands. My son keeps bending back his fingers and stretching out the joints in his knuckels.Could this be a symptom of OCD or touretts? He has been viral free for a month and still has symptoms and is hyper. Thanks. Michele

Thank you I will try to get a hold of her tomorrow. Michele

I am south of Akron, Ohio not too far from Cleveland Clinic. The Clinic DR. are supposed to be some of the best Dr. in the world. This is why we went there. Yes, the Dr. did say it takes time for the tic meds to kick in. He did not believe he should be on antibiotics seeing he only gets one or two strep infections a year and it viral not an infection right now. None of the DR. even checked his titers. He felt they would be elevated from the Nov. strp infection. In the past the PITANDS symptoms only come on couple times a year most often in the winter. I went to several vitamin shops today not a one had heard of Monolarin or had it in stock. I guess I will have to order it. I could go Dr. to Dr. and not find one that buys into the diagosis of Pitands. I feel very alone because no one I associate with has heard of this. The Dr.'s don't seem concerned because he got over it in the past. I am 9 months pregnant and a bit emotional having to deal with this alone. I wish there was a Dr. near by who understood. Thanks for sharing your knowledge and experiences. Are there support groups? Michele

Thanks again for your response. It is interesting you mentioned his joints hurting. My son is constantly trying to bend and stretch his knuckles. He puts down a book, a ball, a toy to stretch his fingers out. It is strange. Maybe a tic, maybe nerves? He also is hyper and restless after a virus. His attention span is short and he talks nonstop. I notice him urinating over and over. The Dr. said no iUTI nfection. He gets easily emotional and is hard to distract. He has a one track mind. I do not know where to turn as far a a DR. I've seen three neurologists with none of them taking me/him seriously. His ped Dr. seemed clueless. Do I need to contact a Dr. in another state? I was praying this would disapear. He had his first episode at one year old. I am anxious about his long term prognosis. I looked in the phone book and did not see a immune Dr. listed. Michele

Thank you for your input. How long do these tic episodes typically last after a virus/strep? What is the best type of Dr. to see? Neuorology, infectious disease, rheumotology? How many Dr. are aware of this diagnosis? Does anyone on this site hace experience with Pitands? Anyone try MonoLaurin? Has anyone known of children who outgrow these symptoms? Michele

I guess that was the Dr point he is young and may outgrow this. He has only had a couple episodes a year that last a couple of months. He didn't think medicine in the form of antibiotics would be the route to go. Plus he said once the syptoms come out and you start meds it can take a month for the meds to kick in. By then he is usually better. I will research the natural route. Dr. said he may outgrow this if his immunity improves with age. He also mentioned there are cases when it just stays and doesn't go away. He mainly deals with ocd and tourettes. He seemed knowledgeable and listened well. Are there studies out there for pitands? Thanks for the info. Michele

When I took my son to the neurologist at Cleveland Clinic he felt his symtoms were more viral related then strictly strep. He said there is no medicine or tests to give him since his symptoms/behaviors come on after viral infections and fevers. The symptoms have gone away before after a month or so. This time he was sick the week before xmas with flu and fever. Then he started repetitive bending of his fingers, touching his cheeks by pressing his fingers down, frequen urination and emotional and hyperness. Now he is left bending his fingers all the time and seeming anxious. Dr felt it may go away with age as he is four. How is pitands treated or diagnosed? Dr. felt meds would not help viral induced ocd. Any idea? How rare is all this? Michele

I am taking my four year old to the neurologist tomorrow for repetive hand movements he developed after a virus. He also tested negative to strep so the ped. would not try the antibiotics. I wonder how so many of these parents with kids having PANDAS symptoms get the antibiotics. So far I have never found a DR. who believed in this theory. Most DR. don't even get the PANDAS diagnosis. I find it nice to read your messages. It is reasuring. Best of luck with your son. Michele

Thanks for the information. His pediatrician seems clueless to the strep/viral/tic connection. I asked her to check on the step culture she sent in last week for antibodies and she went on about how the neurologist had never sent her any info on the strep cultures they had done. She kept saing the hyperness and talking about his privates is typical boy behavior. I think she feels he is too young to treat with anything. I asked her if she thought he should be on anantibiotic and she said you don't want to give him one if the strep was negative. Her nurses look at me like I am from mars when I try to explain his problems. Is this an unusual thing for a kid to get?

My four year old had strep three years ago that exploded into blinking eyes and finger twitches. We saw several neurologists. They did not seem too concerned due to his age and the fact that the symptoms disappear over time. They gave me literature on PANDAS.It seems everytime he gets a fever or virus the symptoms return. He also gets bad behaviors and cries easily and acts hyper after flu with fever or strep. Now he had strep again a month ago. They gave him a shot of penicillin which helped him get better in a day. Then he had flu and a fever a few weeks ago then all his symptoms came out again. Now he is pressing his fingers against his cheeks repetitively. He bends his fingers back often too. He has been hyper. He can be relentless when it comes to getting his way. He gets very moody. I took him to he pediatrician who said he may have mild ocd or hyperness. She said because of his age there is little to do medically. She thought because the symptoms have gone away before they should again. The strep culture was negative. She did not give him an antibiotic. She told me to stay in touch. He is still pressing his fingers to his cheeks today so I called the neurologist at Cleveland Clinic. I can get in next Thurs. Can someone give me advise on how to approach the PANDAS testing, most DR. don't want to give antibiotics if no strep infection is present. What about food sensitivity? Do I need to see an alergist for testing? Any advise? michele