mrigsby

My son just came off of 4 months of Azythromycin at the begining of June. He is 13 and this is the first time since he was 7 that he has had break from Pandas. We live in Johnson County Ky and he has a medical card. However, no doctor around here has heard of PANDAS or beleives in it. It took me forever to get him the antibiotics that he needed and that was because I kept demanding to be referred to other doctors. When we finally got the antibiotics it was a fluke. I thought we were being referred to an immunologist and when we finallly got to Ashland, KY it was an Asthma and Allergy clinic. I broke down and started bawling. I explained to this doctor what had been going on and about Pandas and how I couldn't get anyone to help my son. He told me that he had never heard of it but because my son had repeatedly tested positive for strep after normal 10 day rounds of amoxicillin he would give us a 4 month prescription. It worked all signs of Tourette's and OCD are gone completely! Thank you Lord. However, he will be returning to school on Wednesday. (8th grade) I am expereincing the same anxiety as you. I am absolutely terrified of what is going to happen to him when he comes in contact with strep again. Right now he is on no medications whatsoever. I fear that I will have to go through the same chaos of trying to get referred to doctor after doctor before someone will listen, again. And I can't stand the thoughts of my son having to go through all of this crap again. 6 years is such a long time to be locked up inside yourself. We are a low income family and when you don't have the money to get anywhere and no one near you will listen things seem hopeless. I really don't know what to do. All I know is I finally have my son and I don't want to lose him again. I know I can't lock him away that wouldn't be fair to him but thats what part of me wants to do to protect him. As I set here writing and thinking about it my insides are shaking. I am just plain terrified and I don't know how else to explain it. Misty

Thanks for all of your encouragement. Vickie, I am curious, how old is your son? YOu said with your sons last exacerbation. Am I right in thinking we are not out of the woods? If and when he comes in contact with someone with strep.... are we going to have to go down this same road again? When school starts back he will be in the 8th grade and he wants more than anything to have a girlfriend and just fit it. School starts back on August 4th. I have been taking him to the pool this summer and I watch him when he runs into kids from his school and he tries to speak to them, for the most part, most of them want nothing to do with him. It rips my heart out. I want so much to fix this for him but I know that kids can be cruel he has expereinced it his whole child hood. He has gotten use to this treatment, so when they make it clear that they want nothing to do with him he just goes the other direction. He has been knocked down, (so to speak) , so many times in his life and I just want so much for him to finally be excepted by his classmates. I plan on asking the school to inform me of any strep, however his school is not very dependable when it comes to contacting me, if you know what I mean. I am more concerned about the fact that I have a 6 year old in grade school and there is always lots of strep going around in grade school. I know he will be bringing it home to my older son. My youngest is the complete opposite of my oldest in every way. This really annoys my 13 year old. Because my 6 year old is the kind of kid that all kids seem to get along with and love. He is very popular and even the little girls love him. My 13 year old is constantly telling me its not fair that girls talk to his little brother but girls won't talk to him.lol At times my 6 year old even acts more mature than the 13 year old, so anyways you can imagine the conflict. I just hope and pray that my 6 year old never has to go through what my 13 yearold has. However, my 6 year old had strep 3 times last year. Thank God he bounced back each time with no problems. I encourage my son to spend time with kids his age every chance I get, which is not often. He is involved in the impact group, which gets together once a month with several kids his age that also have problems and they have group therapy followed by pizza and games. He loves that. Thanks for all your advice. For now I guess all I can do is cross my fingers and hope for the best.

Thanks for all of your encouragement. Vickie, I am curious, how old is your son? YOu said with your sons last exacerbation. Am I right in thinking we are not out of the woods? If and when he comes in contact with someone with strep.... are we going to have to go down this same road again? When school starts back he will be in the 8th grade and he wants more than anything to have a girlfriend and just fit it. School starts back on August 4th. I have been taking him to the pool this summer and I watch him when he runs into kids from his school and he tries to speak to them, for the most part, most of them want nothing to do with him. It rips my heart out. I want so much to fix this for him but I know that kids can be cruel he has expereinced it his whole child hood. He has gotten use to this treatment, so when they make it clear that they want nothing to do with him he just goes the other direction. He has been knocked down, (so to speak) , so many times in his life and I just want so much for him to finally be excepted by his classmates.

I apologize for being a way so long. Many things have happened in the last 7 months. First off a refresher. My son has been receiveing diagnosis since he was 7 years old. He turned 13 in March. He has been diagnosised with everything you can imagine including Tourette's and OCD. Anyways to make a long story short I found you and I want to thank all of you for the change it has made in our life. In December 09 I started taking things in my own hands. My son has went from taking 9 medications to none. He no longer sees a psychiatrist, i fired her. I had him tested for strep and he repeatedly tested positive with no signs or symptoms. He does still receive some therapy services for immaturity, social and emotional problems. After several months I finally found a doctor who was willing to give him 4 straight months of azythro., and he no longer has any signs of Tourette's or OCD. Praise the Lord. His handwriting has improved slightly. He finished up his antibiotics in June. So far, it is wonderful. Howwever, he is still very immature for his age and is unexcepted by his peers. He acts like he is 8 or 9 rather than 13. Don't get me wrong, I am not complaining, we are dealing. But as a mom I wonder will he ever be excepted.? Has anyone experienced this? Also school is getting ready to start back and I wonder what may happen when he comes in contact with someone with strep. Any advice would be greatly appreciated.

Does anyone on here have a family member or know anyone personally that has been cured of PANDAS? The only person I have heard of that was cured of PANDAS was Beth Maloney's son. It would be nice to know that there are a lot more out there.

I have been wanting so desperately to be able to do something in the help for awareness of PANDAS. Thanks for this post. I am going to contact Beth Maloney and see if I can help with theses cards.

This story is kind of weird so bare with me. Today we finally had our appointment in Ashland KY with who I previously thought was an infectious disease specialist. That is, the ENT told us he was referring us to an infectious disease specialist so that they could get into deeper test with blood work and maybe figure out if there is something that is causing the strep to hang on. However, when we arrived at our destination, it was an asthma and allergy center. We were sent to an asthma and allergy immunologist. At this point I was totally confused because the paper work that I was given to feel out was all about what symptoms of asthma and allergies he is having right now. (WHICH HE HAS NONE) I explained to them that I was told we were coming to see an infectious disease doctor about recurring strep. I was so disappointed because I had set up until 2a.m. last night preparing to give it both barrels if need be to get my son the testing he needed so that he could have the antibiotics he needs. Also, we drove 2 hours on ice roads this morning to get to that doctors appointment. Anyways, they contacted ENT and asked what he was referred for and he told them something to do with checking for nose allergies. By this time, I was ready to cry. Then I made up my mind I was going to give my PANDAS speach anyways. Suprisingly, this doctor listened to me! Then he told me to excuse him for a few minutes. After about 15 minutes he came back to the room. He had went in his office and looked up PANDAS on the internet to breif himself. (HOW cool is that?) Anyways, he says after checking it over, you do realize that PANDAS is still a controversial diagnosis right now. I said yes, I do realize. I also realize that a child cannot possibly have all the diagnosis's that mine has been given in the last 6 years and I also know that you don't grow out of Tourette's and my son had it severely for almost 3 years and 9 months ago it just stopped all together and was replaced by other things. He said I see where you are coming from but I can tell you that this is not my expertise and you may be better suited for an infectious disease specialist or a pediatric neurologist to evaluate your son. He said he would be glad to do a immune work up on him for me. I asked him, if this was your child who would you take him too. He said he would take him to anyone that would see him if it was him until he got the answers he needed. I told him that I had seen with my own eyes that Harleys symptoms improve on antibiotics and all I want is for someone to put him on Azythremicon(not sure of spelling) long term so that he has a fighting chance with this illness. AND here's the kicker. HE said, well I can do that, I do it for a lot of my patients that have chronic infections. I thought I would bust into crying right there. I said thats all I've been trying to get. So, he ends up writing us a 4 month prescription and sending Harley for blood workup. They took 10 vials of blood. We go back on March 9th to find out blood test results. And I am so Happy tonight that I can't even begin to explain how I feel. Now its time to hope and pray that this makes a difference in my sons life, which I truely believe it will. And to think, after all the doctors we have been too, today we go to a wrong one and he is the very one who gives us what we need. God works in mysterious ways. The wrong one turned out to be the only one that mattered!!!

My son had his tonsils and adnoids removed in 2004 and he has had every symptom of PANDAS since then. So in our case I would have to say that it did not help. He even got strep throat and wound up in the hospital somewhere in the neighborhood of 2 months after tonsilectomy.

This same ENT removed his tonsils and adnoids, enlarged his sinus cavities, and graphed skin from behind his ear to fill in a hole from removing an ear tube, IN OCT. 2004. The whole year of 2004 was horrible! He had a sinus infection that we ended up going through 3 specialist before we were able to knock it out. Also allergies and asthma (according to doctors.) During that same year he had strep throat on 5 different occasions. 3 which landed him in the hospital, severly dehydrated. It would hit like a ton of bricks, fever would spike ridiculous, he would start vomiting and by the time I would get him to the doctor he would already be dehydrated. Last time he was put in hospital he also had scarlet fever!!! Mind you the last time he was put in hospital was approximately 2 months after tonsil and sinus surgery. It was almost 5 months later before they were able to rid him of the sinus infection. Within 2 months of the sinus and strep chrisis finally being over the school insisted I have him evaluated for ADHD. And thats when we began this rollercoater ride we've been on with PANDAS. However, until recently I never knew what it was! I will have to say that since 2005 Harley has not had strep that I have been aware of. He has been ASYMPTOMATIC. Apparently after all of what we went through it went intercellular. However, after reading Saving Sammy, I immediately took him to pediatrician and begged for strep test. Sure enough throat swab was positive. His symptoms were milder while on antibiotics and within a few days of finishing the 10 day course, he was unbearable to be around. I took him back and he tested positive again. Thats when we were referred back to the ENT, and now he is sending us to an IMMUNOLIGIST. I thought it was an infectious disease specialist but they called to confirm appointment tomorrow and it is an allergy/immunologist. I just hope and pray that they will help us!

Just curious if anyone else can relate. My son has had OCD for years. He was diagnosed with Tourettes at 10 years old. From around the age of 9 until barely over 12 years of age he had severe motor and vocal tics. For the last 9 months there have been no tics. I am aware that with Tourette's there tics can wax and wane, however there should not be a break for more than 3 months. Therefore, I know that he does not have Tourette's. When the Tourette's went away the OCD got worse and we gained emotional lability. Currently we are going through ODD. He has been placed in a emotional, behavoiral disorder class at school because of his behaviors. We have an appointment Tuesday with an infectious disease specialist that I only hope and pray will listen to me as I have yet to find anyone who will. The ENT referred us because he said he suspected that my son was a carrier and if he was there wasn't much that could be done by way of treatment. I just don't understand this. My child is not currently on any medications whatsoever. However, in the past he has been on numerous psy drugs. They don't seem to care to give him them and diagnosis him falsely with something so why is PANDAS so hard to get a doctor to diagnosis? From the age of 7 my child has been given the following diagnosis's(keep in mind he will be 13 in March): ADHD Pediatric Anxiety Disorder OCD Tourette's Syndrome Emotional Lability Oppositional Defiant Disorder (Accompanied by sensory problems and motor skill problems, ie. writing problems) Hello!! I'm not a doctor, but I got enough sense to know that he can't have all of these. To paint a better picture, the ADHD pretty much disappeared when we went through the Pediatric Anxiety Disorder. He became withdrawn and closed off and very defpressed. Then the OCD came into play and he started doing down right freaky stuff. The Pediatric anxiety disappeared and along with OCD he started ticking ridiculously. This lasted a very long time. ( I was told OCD and Tourette's were lifetime diagnosis's, in other words if you got it, it can be helped but you will always have it) Well, Now the Tourette's is gone!!! OCD is still very present accompanied by Emotional Lability and Oppositional defiant disorder. He also still has sensory and motor skill problems. It's like just when we are glad that something is gone, something else comes along and takes its place. He has a big history with strep and sinus infections. He tested positive twice in December with strep. The second time was only 5 days off of a 10 day round of Augmentin 1500mg a day. The doctor turned around and gave him another 10 round of Augmentin. (Both time symptoms were somewhat milder during antibiotics and worse after. ) He then referred us to ENT doctor who has now referred us to infectious disease doctor, meantime he hasn't had any antibiotics since the first week of January. And yes his symptoms have gotten MUCH worse! So, I originally started this to ask, has anyone else expereinced being given a diagnosis only to have that disappear and be replaced by something else? It really blows me away that he had severe motor and vocal tics for 3 years and he hasn't had any in over 9 months. Thank God for that!!!

Thanks for everyones replies! He is not on any medication at this time. He use to be very, very, picky and underweight. However, he is making up for it now.LOL He's not overweight at the moment. I'm just afraid that if he doesn't slow down, we are headed in that direction.

My son is 12, will be 13 in March and he takes spells where he walks on the sides of his feet too. He has a lot of awkward movement, (motor skill problems). But I just had to buy him a new pair of shoes because he had been walking on the sides of his feet and busted the seem out of one of them.

Just wondering, has anyone else had a child to have a compulsion with eating? I know my son will be 13 in March and it is normal at this age for them to have a big appetite. However, he is litterally obsessed with food right now. He wants to stick something in his face constantly. Example: This evening when he came home from school, he put his bookbag in his room and went straight to the fridge and got a soda. Then to the cabinet and got a snack cake. Not 5 minutes later he was eating cheese nabs. I told him I had spagetti on and it would be ready in a few minutes. When I gave him the spagetti he handed me the cheese nabs back. My husband will not eat spagetti, he had salsberry steak and mashed potatoes. Before you couldnot have made Harley eat salsberry steak. Anyways as soon as he finished his bowl of spagetti he asked his dad if he could have some salsberry steak and mashed potatoes. When he finished this he got a bottle of water and drank it straight down. About 10 minutes later he eat a cup of apple sauce and grabbed a banana off the table. All of this was between 4 and 6 this evening. When he got the banana I dared him to get anything else for a while. I told him his belly needed a break. At 6:40 he was back in the kitchen, got another water and a pack of peanutbutter and chees crackers. I told him he wasn't allowed to have anything else tonight. Of course he tried and I made him stop. But if he could have snuck and got something he would have. This has been going on for the last few months. If I buy snack packs of candy bars, I have to put them up and give them to him one at a time, because he will grab the whole pack and run to his room and set and eat everyone of them. I couldn't tell you how many empty cracker wrappers and candy wrappers I have found stuffed away in his room. And if he's not eating, he wants to be drinking something. I know he is growing. Grew 3 inches in the last 5 months, but he also put on 20 pounds in the last 5 months. Has anyone else seen this compulsion out of there child.?

Can someone tell me what the difference between a throat swab and a throat culture for strep is. My son has always been given the throat swab. However, I have a friend who suggested that her pediatrician test her child for strep and he sent her to the hospital to have a throat culture done. He told her he wanted to see what grew out of it. Does anyone know what the purpose of this is? Just wondering out of all the times my son has had strep we have never had this done.

He was taking 500mg 3x a day of Augmentin. I did change his tooth brush. So far I haven't been able to get anyone to do any blood work. ONly the throat swabs, which has tested positive each time. He is getting more hyper everyday he is off his antibiotics. His eyes were somewhat dialated today. And his OCD is starting to get worse. Feb. 9th seems like a long way away right now.