coltonsmom

We have an appointemnt with a family doctor that has treated PANDAS kids. He has been 'briefed' on the story and will start him on antibiotics. That is on 7/2, so one more week. I also set up an appointment with a allergist/immunologist. The only thing that made me unsure was that I was asked to pay a $350 for the visit. And that PANDAS patioents are all out of pocket...I assumed it would be pretty pricey, I just wonder if some might take advantage. I am waiting on a breakdown of what the 'fees' are. I was going to start him on OLE, as I read it is good in fighting STREP. I also read that it interferes w/ abx. Should I start him for the next week and then do the abx? Thanks again.

He is also allergic to Augmentin:( anything in the Penicillin family. Our ped said he would continue treatment, but will not start it (as he has never treated it). We can see a family members doctor...who would start treatment. I just was not sure if I should get with a doctor we would stay with...

We live near Charlotte and were recommended to Dr. Corbier. I don't think we can get in until August. We can see Maeve O Connor, who works on his team. She is an allergist, immunologist.His name was listed on a link. Does anyone have experience in the Charlotte area?? Thanks.

Two weeks from our first 'tic' and he seems much better. His tics are not all day long. That seemed to last the first 3 days. Each day thereafter got better. Is this what is meant by episodic. Now they mostly happen when he is tired. We are waiting to test his titers again (I think we have to wait 2 more weeks), and just trying to find the best doctor fit for us.

Thanks everyone...sorry Cara615...I did not mean to kind of jump in on your tread...I am new to all of this! I did start a new one! Thanks for all the help. We trying to find who we want to follow up with!

One more insight, I guess... DS had the MMR 6 days before the tics started. Could this have been a trigger? This was his first MMR. Thanks.

Thanks for the responses. One our our friends actually sees a neurologist that believes in PANDAS (Dr. Corbier in Concord, NC) I read that he is not really big on antibiotics, but he was given a quick recap of DSs situation and thought it might be PANDAS. We are not going to be able to get in with him for a while. I can try to get in with the other doc at that office. I guess my questions are: Should I be trying to get him antibiotics ASAP (another family members doc said they would put him on) I think I can do this while waiting for the appointment in Charleston or w/ Dr. Corbier or should I just wait for a specialist to see him that is open to PANDAS. Any thoughts will help. Also, has anyone gone to a pediatric neurologist that specializes in movements dissorders??? It seems scary to me, but if it is a good choice then I am all for it. Thanks again.

Hi Everyone, Here is what happened last week...trying to figure it all out. DS (age 4) woke up at 3 pm from a nap last Monday and started some strange behavior. He would thrust out an arm like he was saying ‘stop’. Then it was both arms. By 6 pm, when I got home, he would have to stop what he was doing to do this. From what my family said it seemed to be getting more frequent. By the time we finished dinner it was pretty obvious that he was not right. We called the pediatrician who said to bring him to the ER. I was lucky enough to video tape these ‘movements’ while we were waiting (5 hours). They were happening almost constantly and were very exaggerated. He had to touch every surface he came up to or sat on, he was bending down and almost scooping up at the floor and, of course, still saying stop and hello with his arms in some weird repetition. If anyone has ever seen ‘can’t buy me love’ with Patrick Dempsey, it was almost like the dance in that. After a CAT scan and blood work they sent us on our way. There was no sign of head trauma. We were told to follow up with the pediatrician the next day and possibly meet with a neurologist. The next dayhe woke up and for a little while seemed much better. We had our appointment at the pediatrician and when he saw him he said he has ‘Tics’ and made it seem like no big deal. We mentioned that another family member had just had something similar happen and it was related to STREP, the doctor dismissed this and again said it was no big deal. I showed him the video clips I took, he got a little more serious and called them ‘alarming’… We were off to a pediatric neurologist to have an EEG. This was to see if he was having any kind of seizure activity. It did not look like a seizure, but the doctor said they can come in many forms. The rest of Tuesday was OK. He was very happy, always alert, but consistently flapping about. DS also seemed to not be able to relax…he was always moving. That night it took us about 45 minutes to get his arms and legs to stop flapping for him to go to bed. Wednesday morning came. Still smiling and happy, the flapping or ‘tics’ started immediately. We tried to keep him busy as we thought this helped, but by now he couldn’t even ride his bike because of the movements. I got a call from the pediatrician who read us the report from the EEG. There was abnormal activity in his frontal left lobe…possible seizure activity. We had an appointment on Monday to follow up with the neurologist. We were told to just look for any changes or worsening. Well, by this point he was having his whole little body tense up and he told me he was just cold. After another call to the pediatrician we were told to go to Hospital. The movements were not supposed to be a constant occurrence. My little man was admitted to Hospital Wednesday for uncontrolled body movements. Thank God for those videos. He could pass all the neurological ‘field’ assessments. But all the doctor’s were completely shocked by his movements and constant tics. We met with about 6 different doctors before the Pediatric Neurologist came in. He instantly said this was a tic disorder, not seizure activity. He asked us some questions and we realized that he may have had some tics prior to all this. We were pretty dumbfounded at this point, because the first report said there was seizure activity. He had an overnight EEG, more blood work, 2 EKGs and an MRI. We kept pushing this STREP thing, but it was brushed off and we were told that he had strep too long ago for this to be a reaction. he had an entire day of constant tics. Some worse than others. They did not even stop until he was asleep for about 2 hours. At about 11:30 pm, another doctor came in saying that he had to have his 2nd EKG. He was asleep so we were not thrilled with this, but she said it was because his STREP titers were elevated and that we had to make sure there was no swelling around his heart. We had a sigh of relief that maybe this was just caused by the strep. By Thursday morning it seemed like we were just having all these test done with no outcome. No one else mentioned the STREP until we asked. We were told they were not actually elevated. Then when he had his MRI, he woke up in the tunnel. It was not by best moment when I was told that. The neurologist reviewed the MRI and the EEG and said that everything was normal. Although his tics were ‘odd’ he was diagnosed with a tic disorder. We were discharged Thursday night with a few blood tests left to come back, which we were assured they would be fine. We had the task of deciding to medicate and just coming to terms with this change. At this point I was still upset, but after looking around the hospital felt pretty lucky. We had a great weekend. His ‘tics’ seemed to get much better and we were pretty relieved. We had a follow up with the pediatrician on Monday. We asked again about the STREP (my sister now has it) and the doctor initially blew it off. Come to find out the 2nd STREP antibody test (DNASE came back EXTREMELY elevated. About 20 times the normal amount (1480). We asked the pediatrician about PANDAS (pediatric autoimmune neurological disorder associated with STREP) and he only knew what he read about it. He did not brush us off, but had to contact the neurologist and the infectious disease doctor. He has never treated it. We asked for a long course of antibiotics and at that point he was going to see how to handle it. About an hour later I got a call from him that the neurologist said DO NOT treat for PANDAS and that they want us to go to a Movement Disorder Specialist in Charleston. Both the pediatrician and the neuro say his tics seem 'choreiform' like. But this is not Chorea??? The appointment is not until sometime in August. And from what we gather is to rule out a tic disorder, which is his current diagnosis?!?!? Right now we are still waiting to see if he has an active case of STREP without symptoms…he could be a carrier (which I think I might have joked about a few months back…little did I know). UPDATE: Strep culture is negative. From what Google has taught me, PANDAS is pretty controversial. Some believe in it and some don’t. Right now I think I do, my little man went from 0-100 in less than a day. We are waiting for an answer as to why his levels are so high and what is the harm in some antibiotics, but we can’t seem to get that just yet. We have been lucky to have some friends who have heard of it and have doctors who treat it. We are going to try and get him in ASAP. I can’t say 100% that it is PANDAS but I can’t say it is not. Something was definitely triggered. He tries to cover his movements up a little bit but that seems to be the worst. From where we were last Wednesday and Thursday, I would say it is about 50-75% better. He still has all the tics, and there are a lot, but they are not constant. Looking back, DS has been clearing his throat for a few months, we thought it was just a habit, but maybe not. He also does not like to be too far from home. Anywhere we go he wants to know how far we are from our house. It does not affect his mood, he just asks. He went through a couple of weeks of wanting to wash his hands after he touched his nose, and would cry about it, but that seems to have passed. Any help would be appreciated! Thanks!

Thanks. I will get it posted!

Hi Everyone, Here is what happened last week...trying to figure it all out. DS (age 4) woke up at 3 pm from a nap last Monday and started some strange behavior. He would thrust out an arm like he was saying ‘stop’. Then it was both arms. By 6 pm, when I got home, he would have to stop what he was doing to do this. From what my family said it seemed to be getting more frequent. By the time we finished dinner it was pretty obvious that he was not right. We called the pediatrician who said to bring him to the ER. I was lucky enough to video tape these ‘movements’ while we were waiting (5 hours). They were happening almost constantly and were very exaggerated. He had to touch every surface he came up to or sat on, he was bending down and almost scooping up at the floor and, of course, still saying stop and hello with his arms in some weird repetition. If anyone has ever seen ‘can’t buy me love’ with Patrick Dempsey, it was almost like the dance in that. After a CAT scan and blood work they sent us on our way. There was no sign of head trauma. We were told to follow up with the pediatrician the next day and possibly meet with a neurologist. The next dayhe woke up and for a little while seemed much better. We had our appointment at the pediatrician and when he saw him he said he has ‘Tics’ and made it seem like no big deal. We mentioned that another family member had just had something similar happen and it was related to STREP, the doctor dismissed this and again said it was no big deal. I showed him the video clips I took, he got a little more serious and called them ‘alarming’… We were off to a pediatric neurologist to have an EEG. This was to see if he was having any kind of seizure activity. It did not look like a seizure, but the doctor said they can come in many forms. The rest of Tuesday was OK. He was very happy, always alert, but consistently flapping about. DS also seemed to not be able to relax…he was always moving. That night it took us about 45 minutes to get his arms and legs to stop flapping for him to go to bed. Wednesday morning came. Still smiling and happy, the flapping or ‘tics’ started immediately. We tried to keep him busy as we thought this helped, but by now he couldn’t even ride his bike because of the movements. I got a call from the pediatrician who read us the report from the EEG. There was abnormal activity in his frontal left lobe…possible seizure activity. We had an appointment on Monday to follow up with the neurologist. We were told to just look for any changes or worsening. Well, by this point he was having his whole little body tense up and he told me he was just cold. After another call to the pediatrician we were told to go to Hospital. The movements were not supposed to be a constant occurrence. My little man was admitted to Hospital Wednesday for uncontrolled body movements. Thank God for those videos. He could pass all the neurological ‘field’ assessments. But all the doctor’s were completely shocked by his movements and constant tics. We met with about 6 different doctors before the Pediatric Neurologist came in. He instantly said this was a tic disorder, not seizure activity. He asked us some questions and we realized that he may have had some tics prior to all this. We were pretty dumbfounded at this point, because the first report said there was seizure activity. He had an overnight EEG, more blood work, 2 EKGs and an MRI. We kept pushing this STREP thing, but it was brushed off and we were told that he had strep too long ago for this to be a reaction. he had an entire day of constant tics. Some worse than others. They did not even stop until he was asleep for about 2 hours. At about 11:30 pm, another doctor came in saying that he had to have his 2nd EKG. He was asleep so we were not thrilled with this, but she said it was because his STREP titers were elevated and that we had to make sure there was no swelling around his heart. We had a sigh of relief that maybe this was just caused by the strep. By Thursday morning it seemed like we were just having all these test done with no outcome. No one else mentioned the STREP until we asked. We were told they were not actually elevated. Then when he had his MRI, he woke up in the tunnel. It was not by best moment when I was told that. The neurologist reviewed the MRI and the EEG and said that everything was normal. Although his tics were ‘odd’ he was diagnosed with a tic disorder. We were discharged Thursday night with a few blood tests left to come back, which we were assured they would be fine. We had the task of deciding to medicate and just coming to terms with this change. At this point I was still upset, but after looking around the hospital felt pretty lucky. We had a great weekend. His ‘tics’ seemed to get much better and we were pretty relieved. We had a follow up with the pediatrician on Monday. We asked again about the STREP (my sister now has it) and the doctor initially blew it off. Come to find out the 2nd STREP antibody test (DNASE came back EXTREMELY elevated. About 20 times the normal amount (1480). We asked the pediatrician about PANDAS (pediatric autoimmune neurological disorder associated with STREP) and he only knew what he read about it. He did not brush us off, but had to contact the neurologist and the infectious disease doctor. He has never treated it. We asked for a long course of antibiotics and at that point he was going to see how to handle it. About an hour later I got a call from him that the neurologist said DO NOT treat for PANDAS and that they want us to go to a Movement Disorder Specialist in Charleston. Both the pediatrician and the neuro say his tics seem 'choreiform' like. But this is not Chorea??? The appointment is not until sometime in August. And from what we gather is to rule out a tic disorder, which is his current diagnosis?!?!? Right now we are still waiting to see if he has an active case of STREP without symptoms…he could be a carrier (which I think I might have joked about a few months back…little did I know). UPDATE: Strep culture is negative. From what Google has taught me, PANDAS is pretty controversial. Some believe in it and some don’t. Right now I think I do, my little man went from 0-100 in less than a day. We are waiting for an answer as to why his levels are so high and what is the harm in some antibiotics, but we can’t seem to get that just yet. We have been lucky to have some friends who have heard of it and have doctors who treat it. We are going to try and get him in ASAP. I can’t say 100% that it is PANDAS but I can’t say it is not. Something was definitely triggered. He tries to cover his movements up a little bit but that seems to be the worst. From where we were last Wednesday and Thursday, I would say it is about 50-75% better. He still has all the tics, and there are a lot, but they are not constant. Looking back, DS has been clearing his throat for a few months, we thought it was just a habit, but maybe not. He also does not like to be too far from home. Anywhere we go he wants to know how far we are from our house. It does not affect his mood, he just asks. He went through a couple of weeks of wanting to wash his hands after he touched his nose, and would cry about it, but that seems to have passed. Any help would be appreciated! Thanks!

Hi, Last week my 4 year old son woke up from a nap with some unusaul body movements...after a trip to the ped, ER and an overnight stay at the hospital he was diagnosed with a tic dissorder. Although pediatrician and neuro say his tics are not your average tics and mentioned choreiform movements. Because of this we are being referred to a movement dissorder specialist???? For 2 days the tics were almost constant. They have subsided a good bit but seem to be worse at night or when he is watching tv. In the hospital we asked about PANDAS and pretty much got blown off. Here is what we have: Normal EEG, MRI Normal ASO titers High DNASE B titers (1480) Strep Culture Negative He had Strep on January 30th. He is allergic to penicillin, so was treated with zythromax. He started clearing his throat a few months back, which we thought was just a habit. He also went through a phase of wanting to wash his hands every time he touched his nose, but that has ended. He is a little more clingy, but not excessive. He always wants to know where we are, but is fine to be on his own too. He also wants to know where his house is compared to where we are. If we go for a walk he will ask if our house is near or far. He is still very happy and smily. Our ped has never seen PANDAS and is open to talking about it, but wants a neuro to start treatment. He does not think my DS meets all requirements right now so takes the path of waiting a watching. We also had his MMR on 6/4, 6 days prior to this outbreak of tics. This was his first MMR, he had previously had the measles and ruebella separately. I am not sure what my little guy has, one minute I think PANDAS and the next I am just confused. I don't want to treat for something it is not be it PANDAS or a Tic Disorder. I am grateful to have found this site, I hope someone has some insight! Thanks.