mrigsby

My son finished a 5 day steroid burst on Jan. 4th. He is also on Augmentin, 1500mg a day, for 10 days, which he will finish on the 9th. As most of you know he just finished a 10 day round of Augmentin, 1500 mg, on the 27th. I took him back on the 31st because I had seen no improvement if anything he only got worse and he tested positive for strep again. Within a day or so after finishing first round of antibiotics, he was so hyper we couldn't hardly stand to be in the room with him, and he started ticking, which he hadn't done since the beginning of summer. Emotional lability and OCD was off the charts. So, in essence, after a round of antibiotics that didn't work, his symptoms actually became much worse. The only difference I've noticed through taking the steroid burst was that the ticks are gone for now, and everything else is milder. Thank goodness. Not gone, just milder. I can only assume that since the first 10day round of Augmentin 1500mg did not rid him of the strep, this round of the same type dosing will probably not do much either. I was hoping that at least during the 5 days of steroids, his symptoms would completely go away. I have read where others have posted that their children where completely symptom free during steroid burst. Is this true for everyone? Is what we have expereinced so far normal to Pandas kids? We just started down the right path for Pandas in Dec., although the doctor doesn't agree with me. I know in my heart and have known for years that Harley had Pandas. I did catch a little break, the Ear, nose, and throat doctor, (that our pediatrician refered us too) has been able to move the appointment up to Jan. 12th instead of Feb. 17th. Harley had his tonsils and adnoids removed in Oct. of 2004. He also had his sinus cavaties enlarged and skin grafted from behind his ear to fill a hole where he had had a tube in his ear. All of this was due to chronic sinus infections and strep. The same ENT doctor that done all of these things and treated for sinus infection is the doctor that we have been refered back to. On one hand I'm thinking since this is where and when our road to PANDAS truely began (almost 6 years ago, as he had sinus infection and recurrent strep for almost a year before these procedures where performed) maybe this doctor will be more willing to except PANDAS as a diagnosis. I am hoping and praying that this doctor will listen to me, especially since he should have the records of the infections. Any advice as to how to approach this doctor to convence him of PANDAS is greatly needed! I do not understand why doctors are so unwilling to give our children prolonged antibiotics. His psychiatrist has been more than willing over the years to give him medication hand over fist that has never truely helped him. So why is it that its so hard to get an antibiotic? The last week of November, I tried to talk to his psychiatrist about how I did not fill that Harley had the diagnosis's he had been given and she basically brushed me off. So, I took it upon myself to research how to wean him off of his medications. In December I managed to get him off of everything except I am still giving him 10mg of Prozac which I will be taking this weekend. Harley's behaviors are the same with or without those medications just like I told her they would be, and I saw no reason to keep giving my child all of that when it was not helping him. In Jan. 09, he was on Concerta 54 mg, once a day. Tenex, twice a day. Focalin 10mg, once a day, Prozac 30mg, once a day. And Trazodone 200mg once a day. (Anybody else been through this much medication at once) Presently Jan. 2010 I am proud to say his is taking 10mg of Prozac (until this weekend) and his anitbiotic. Of cours I'm sure when his psychiatrist finds out, its gonna hit the fan.LOL We met with his therapist yesterday and I told her about taking him off medications, and showed her research about PANDAS and she is behind us 100%. She says she doesn't know why doctors have such a problem excepting this. She said that now that she knows about PANDAS it explains alot to her, where Harley is concerned. She said his case had always been unusal to her. How he can go from off the charts to milder and then he will be off the charts in a totally different direction. She said she has always wondered what was truely going on with him. Sorry to have wrote a book, but Tuesday will be here before we know it and I would really like to be prepared. So, again please, anyone with advise or comments they are greatly needed!!

I am so glad you posted this. I'm glad that I am not the only one who feels like this is above my understanding. Once they start using the big words, my brain tries to go into shut down mode. LOL

Allison, As to answer your question the most support I have gotten has been from this site. My mom believes that I'm on the right track and keeps telling me to stay on it and not take no for an answer on getting treatment for PANDAS, but thats easier said than done. My dad has bad nerves and my son gets on everyone of them. So, I try not to have him around him no more than I absolutely have to, because he inturn gets on my sons nerves. Also, my husband is 15 years older than I am and everything that gets done regarding our family is left to me. He knows my son has problems, anyone thats around my son for more than 10 minutes knows that he has problems. (However most people have the attitude that if I would just discipline him more, maybe he would behave better) People with this attitude have never had to walk in my shoes. And I have one sister, she is not so stable herself, which is understandable. Her only child passed away at 9months and 11days from an extremely rare genetics disorder called POMPE. Most babies born with POMPE don't make it to 5 months. At the time of his death, there were only 15 known cases world wide. POMPE breaks down every organ in the body. There was absolutely nothing we could do for him and no treatment available because it was such a rare disease. When I find myself in the "why is this happening to me mood" I try to remind myself how blessed I am to have two sons. I know that things could be much worse, but it doesn't stop my heart from breaking for my son. My sister is constantly asking about Harley and worrying about him, however she cannot tolerate being around him for very long either. My husband is laid off of work right now again. So money is very tight as usual. My younger child who is 5 is also extremely hyper. So, I donot have the luxury of family members to help me out. They express their concern and tell me that they don't know how I handle everything, but thats as far as it goes. Lately I find myself depressed all of the time, which makes me angry at myself because I have to be the strong one. Harley has a tendency to get on every nerve I have and then I find myself in another room crying because I kept help but think how he must feel inside. I know he doesn't understand why he behaves the way he does, he can't help it. He has been dealing with this for 6 years. And there has never been a time in those 6 years that he has been completely symptom free. Even when one thing eases up, it seems like something else comes along or something gets worse. For instance, until the last couple of days he had been tic free since about June. However, his tics were replaced by emotional lability. He even laughs a goofy laugh when hes aggrivated. He has absolutely no friends. NONE He does not know how to interact properly with his peers. He is extremely intelligent, however he is also extremely immature for his age. He whines constantly, cries...throughs tantrums, and tattletales. Kids his own age just don't want to be around him. He is on Christmas break right now. However, one week before school got out, the school placed him in a BD class. There are only 5 other children in this class. They told me that he would have to remain in this class until his behaviors changed, because he was too disrupting in the regular class rooms. He has an IEP plan because of his motor skill problems, writing is next to impossible for him. He sees an OCCupational therapist through school. He sees a school based counselor. He sees a regular therapist and a psychiatrist. However, I feel like we just go through the motions with these people, none of them have really been able to help him. He is also in a group called IMPACT that does peer group counseling once a month. The psychiatrist that he sees just wants to add more medications everytime I tell her of a new behavior. I don't understand why it has to be so hard to get proper treatment for our children. Harley has ever single diagnoses related to PANDAS, he has proven history of chronic sinusitus infections and strep throat. In the last 14 days he has tested positive twice for strep. Yet his doctor doesn't think that his behaviors are related to strep. I just feel like I'm going to explode. It only makes since to me that if he was on 10 days of 1500mg a day Augmentin and he tested positive again 4 days later then what he was taking was not strong enough. Yet that is what he has put him on again. I can only hope that now that he has added the 5 days of steroids that we will be able to see some improvements. The ear nose and throat doctor that he has referred us to is out of town for the holidays. Harley will not get to see them until Feb. 17th. And even then, I don't know how this doctor will be about PANDAS. Sorry for writing a book. I just needed to vent a little.

To faith and Peglem Harley shows no signs whatsoever of strep, however we finished a 10 day course of Augmentin, 1500mg a day on the 27. I saw no improvement while he was on the antibiotics but everyday since he has been off of them he has became more fidgity and hyper. His emotional lability is driving us all insane. He acts like he needs constant attention from us, yelling and talking loudly constantly. His tics have been flaring up again and he has this kicking thing going on. He can't walk by any of us without kicking at us. If he gets up and walks across the floor he will do a high kick 3 or 4 times. He's picking fights with his little brother and threatening him every time he turns around. I'm starting to fear that he might actually hurt him. He takes his fist and knocks on the walls constantly and hollows "someones at the door." Then he will laugh a goofy laugh that goes on forever. Even though we have been getting on to him and telling him we know that no one is at the door, he still continues to do it constantly. I have noticed that at least for the last couple of days, his eyes are dialated for a couple hours after it gets up of the mornings. Anyways, I took him back to his doctor today and he tested positive again for strep. So, today we started another 10 round of Augmentin, 1500mg a day. He also gave Harley a 5 day prescription for steroids. I hope and pray that they will kick in and give us a sign of improvement.

I read somewhere that kids with Pandas may have dialated pupils. I have noticed the last few days that when Harley first gets up in the morning his eyes are dialated for a couple of hours. Anyone else heard of this? Has anyone else experienced this with their children? Whats going on when this is happening? I wanted to let the doctor see this morning, but by the time he finally got to see Harley, they were no longer dialated. I told the doctor about it, and he acted like it was no big deal. He said this sometimes happens after long periods of rest when kids wake up of the morning and their eyes are adjusting to the lights. BOLOGNA! This has been lasting for like a couple hours or so, when I notice it. I don't see that with my other son or anyone else. And when I say dialated, His pupils are huge, you can barely see a thin circle of color around the black pupil. So, I was just curious if anyone out there knows why this might be happening.

Well today made 4 days since my son has been off his antibiotics. We never noticed any difference in the 10 days of Augmentin. (I was afraid we wouldn't) However his behaviors have gotten worse. Rather than wait to take hime back in Jan. for retest of strep like the pediatrician originally told me, I decided to go ahead and take him this morning. I tried to explain his behaviors to his pediatrician and how they have worsened, but he brushed me off by telling me that he thought Harley's behavior would improve when he returns to school. He said that he thought Harley was just acting out cause he was trying me!!! He also told Harley that he seemed perfectly healthy to him but he would do a quick throat culture for moms peace of mind. Yep, you guessed it. Tested Positive again!!! When he came back in the room he said you were right again. What would you like to see done. I told him that I beleived Harley should be on a burst of steroids and that he should be on prolonged antibiotics. He agreed to a 5 day of steroids, but put Harley back on another 10 day, 1500mg a day, of Augmentin. He still doesn't beleive that Harley's behaviors are connected to STREP. Even though I even printed him some information and gave it to him. He did however refer him to an ear, nose, and throat doctor for further testing. They can't see Harley until Feb. 17. Has anyone had any experience with an ear, nose, and throat doctor that would treat for PANDAS?

Between the ages of 6 and 7 my son had chronic sinusitus. In a years span we saw three specialist. He had asthma, allergies, and strep throat on 5 different occasions. He was hospitalized 3 times during that year. He had tonsils and adnoids removed and sinus cavaties enlarged. At the end of that year our pediatrician contacted the specialist and they came up with the plan to give him an antibiotic shot every day for a week. This was followed by 10 days of anitbiotics. Finally after a year his sinus infections were gone. However, shortly after is when the PANDAS set it.

We live in Kentucky. Today was a very horrible day. I had to go to another room so that I could be by myself and cry. I know as the adult and the mom I am suppose to be the strong one, but I feel like I'm slowly falling apart. He was so hyper today that he drove us all crazy. Flipping and flopping around like he couldn't set still. His bed is right against his window in his room. And he got the urge to flip sideways this evening and then do a kicking stretch. Busted his window out with his feet. Thank God he didn't get cut all to pieces. If something doesn't give soon, I don't know what we are going to do. I dont think you said where you lived.You MUST find a MD who understands PANDAS even if this isnt his issue you must rule it out.These symptoms sound very familure to many of us .I agree 10 days is not going to do much .He has strep so he has probably had it for a while.Dannys tics started around 9-10 and he had strep then too we just didnt know it .He made facial grimmicing throat clearing,handwritting was horrible,OCD was off the charts.Oh the weird laughing is sooo annoying(he had that too)We understand,you must find the right MD as soon as possible Please dont wait. Keep us all posted a god bless you both Melanie

We live in KY. I have mentioned PANDAS several times over the years to various doctors he has been seen by. However they have always brushed me off. (Pandas is still in research and not proven has always been their reply) I'm ashamed to say that it was not until I read Saving Sammy and contacted Beth Maloney that the concept of simply begging for a strep even entered my head. I have always beleived Harley had PANDAS, I just wish I had started pushing the doctors harder a long time ago. Even when I took him to his pediatrician and begged, he told me that he was not familiar with PANDAS but he could not see how Harley's behaviors and STREP could be linked. He thought Harley seemed perfectly healthy. However, he agreed to do the throat test to show me that Harley didn't have strep. IT came back positive. I immediately started crying. I told him that I know he might think awful of me, but it made me so happy to know finally that strep is behind all of this. Even at that, he only gave him the 10 day supply of antibiotics and told me to bring him back in Jan. for another strep test.

My son has been dealing with Pandas for 6 years. During this time he has been diagnosed with ADHD, Pediatric anxiety disorder, Sensory problems, OCD, Tourettes, Motor skill problems, Emotional lability. You name it, he's probably been told he has it. My question is, for those of you who have witnessed motor skill problems such as difficulty in writing and awkward walking movements, have you seen improvements with antibiotics? Will he every be able to write in a straight legible line? As for his awkward movements, I don't really even know how to describe them. They change all the time.Sometimes he walks slumped over, sometimes he turns both feet inward, sometimes he will take weeks about walking on the outside of his foot. I had to buy new shoes in October because he had destroyed them. And then the week before Christmas, he managed to split the side out of one of the new shoes and I had to go buy another pair. Will this improve with time. He is 12, will be 13 in March. As I said before, he has been going through this since he was going on 7 years old. We battled a year long chronic sinusitus infection, during which time he got strep throat on 5 different occasations and was hospitalized 3 times that year. Shortly after recovering from the sinusitus, is when our nightmare truely started and it hasn't stopped yet. With my son things seem to go from one extreme to the next. For instance, when he was diagnosed with OCD, OCD symptoms were extremely bad. (He was to the point of digging sores in his ears constantly, among other things.) When he was first diagnosed with pediatric anxiety, he always looked like he had lost his best friend, and nothing we could do would bring a smile to his face. He was so unhappy. Then there was the Tourette's diagnoses, he started around 9 years old ticking like crazy, vocal and motor...throat clearing, sniffing constantly, head jerking. He got to the point where he could not even write and stay in the lines, his hand writing was never very good, but it has gotten worse. His awkward movements change all the time. At present OCD symptoms are mild, He very seldom every ticks. But now we are dealing with emotional lability. He laughs constantly, (annoying laughs, that go on and on) at things that are not very funny. He laughs when he's being scolded for things, or he smiles this really goofy smile. This really frustrates everyone, especially his teachers. For the longest time I wondered if he would ever smile or be happy again. Right now, he smiles even when I know hes really aggrivated. (so I know its not real and hes still not a happy kid.) I took him and had him tested on Dec. 17 for strep, after reading Saving Sammy. It was positive. The doctor gave him a 10 days of Augmentin. He has finished the antibiotics and I haven't been able to tell any difference at all in his behaviours. I hope and pray that when i take him back to be tested that the doctor will see that he needs prolonged antibiotics.

My son will be 13 in March. I'm just now after 6 years getting to the bottom of things. From 6 to 7 he had chronic sinusitus and strep throat 5 times, ended up in hospital 3 times that years. Had tonsils and adnoids removed and sinus cavities enlarged. After we made it through all of that and I finally thought he was healthy, around 4 or 5 months later he was diagnosed with OCD. Since then he has had every diagnoses you can thnk of. Pediatric anxiety disorder. Tourette's. Emotional labiltiy. He has a motor skills problem, very poor hand writing. After reading Saving Sammy at the beginning of month, I took him to pediatrician and begged him to test my son for strep. He seen no connection between my sons behaviours and problems and Strep, yet agreed to do the test to satisfy me. It came back positive. My son finished a 10 day course of Augmentin today. I could tell NO difference in his behaviours, but I think he will need a lot more antibiotics to help him. I am hoping when we go back to be retested that the doctor will finally understand our need for prolonged antibiotics.

I completely understand the frustration you girls are going through. My son has been sick since he was 6 years old and he will be 13 in March. Although I have known about PANDAS, everytime I have mentioned it over the years I have been giving one reason or another why this could not be what he has. Mainly because its still a research thing. Anyways, After seeing Beth Maloney on tv and reading her book, I now know for certain this is what my son has. Its just a matter of getting him treated. I live in KY. When my son was 6 years old he had chronic sinusitus for over a year. We went through 3 different specialist. During this year he had strep throat 5 times and was hospitalized 3 times. Once he was finally over these things, (or so I thought) it was only months until other things started coming our way. I couldn't begin to list everything he has been diagnosed with over the years. However I will say that he meets every single criteria for PANDAS. (ALL of them) After reading Saving Sammy, I immediately took my son to his pediatrician and begged him to do a strep test. He did not beleive my son had strep and said that he could not see a conection between my sons behaviors and body movements, and STREP. My son seemed perfectly healthy to him. But to satisfy me he did a strep test. It was positive. My son finished a 10 day supply of Augmentin today. However, I can tell NO difference in his behaviors. I'm quite sure that he will need much more. But I am hoping when we go back to be retested the doctor will finally see where I'm coming from. As for my husband. He knows our son has problems. EVeryone who is around my son knows he has problems. He has OCD and Tourette's and every little thing that can go with them. He was just recently placed in a BD class at school. (Behavior Developmental Class) There are only 5 other kids in this middle school class, and most of them are very mean. However, the school said they had no choice but to put my son there because his behaviors have started disrupting the other children. The behaviors that got him into this class are resulting from emotional lability. He laughs at everything continously, even when hes being scolded. The issue that I have with my husband is that he knows our son has all of these problems, but, because our son is above average intelligence he somehow thinks that our son should be able to control all of these behaviors. He is constantly yelling at him and threatening to take his stuff away and grounding him. My dad is the same way, he knows my son has problems, yet my son gets on every nerve he has cause he thinks he should act his age. I can't get it through their thick skulls that he can't help it. I admit, he drives me crazy too at times. He fights with his 5 year old brother constantly. Someone is always yelling or crying at my house. It causes constant Kaos! I hope and pray that I am on the right track and can get my son the treatment he so desperately needs. I have been weaning him off of medications all year long. Because for one think, none of them have helped. He has been on as high as 12 medications a day. And to think the culprit behind all of this is a strep infection.