mrigsby Posted July 30, 2010 Report Posted July 30, 2010 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.
peglem Posted July 30, 2010 Report Posted July 30, 2010 I'm so glad to hear about the improvements you are seeing w/ your son! Congratulations! As far as making up for lost social/emotional development, the very best thing I have found is Relationship Development Intervention(RDI). http://www.rdiconnect.com/ The way this program works is you work with a consultant who does a detailed analysis of your child's current developmental level and then devises a program by which you guide him through developmental stages in a very natural way- much the way it would have developed normally w/o interference from PANDAS. The research behind RDI is all based on how normal social/emotional development is acquired. Thanks for sharing your good news with us, that is so uplifting!
tpotter Posted July 30, 2010 Report Posted July 30, 2010 2 things: 1) I agree that he probably needs a low dose abx to stay on (if it's actually diagnosed as PANDAS, some docs (like Dr. L.) are leaving them on abx into early adulthood (like Rheum. Fever.) You might also, what to get a consult at this time from a PANDAS specialist, only because you might need one in the future, and it doesn't hurt to have a 2nd dr. who will tx, and/or guide your local doctor. 2) Thanks Peglem for the suggestion about teaching maturing. I will very much look this up for my sons, who are seriously struggling with this problem (one more than the other.) I am so glad that you got the help for your son, and it worked out so well.
purple66p Posted July 30, 2010 Report Posted July 30, 2010 I'm so happy to hear about your positive results from antibiotics! You son sounds soooo much like mine. He was diagnosed with bipolar and ocd at 7 yrs old and now he's 13 as well. He acts like he's 8 or 9, and plays with younger kids in the neighborhood. He's been through so much pain at school because of the kids in his classes picking on him and making fun of him--the girls were the worst! His lack of social understanding, obsessive talking about topics of his interest, as well as constant tics are hard for other kids to understand (especially middle schooler's!) He recently had a complete OT evaluation and his physical development (motor skills, strength, balance, writing, etc.) just kind of stopped at 8 years old. Once we get his symptoms better under control (we're 30 days into antibiotics now) then he's got a lot of catching up to do. We just found out that he's been accepted into a school especially for kids with learning disabilities, and I am hopeful that he'll make friends there with kids more like him. Does your school have a social skills class? Perhaps he could meet some kids there. I hope your son has a much better school year!
Fixit Posted July 30, 2010 Report Posted July 30, 2010 i have a few thoughts...i hope they are encourageing i am so glad for you...and if that is what is left, you will be fine... i am not saying this is true..but you may be compansating for his age difference....treat him like you would an adult and expect great things from him...and more... i feel like i was born old...i think partially true but aslo the youngest of much older parents and siblings and cousins.... second..i know it is hard..but he is 13..he will grow...and if he gets sad...let him know this is only a small blip in his life and better things are coming..... again back to me...i was outcast some because i wouldn't be childish and play child like games..or do mean things that children do..so in turn i became a target.... tell him to hold on and he will flourish..he can handle it..and like my parents told me...if they are picking on you then they are leaving someone else alone...you are strong and can handle it(this may not be really true for your son...but give him the confidence he can) and with that confidence things will just come to him and it may not be in high school...but watch out college!!!!!!
thereishope Posted July 30, 2010 Report Posted July 30, 2010 (edited) I'm so happy for you! I'm curious, since he finished all antibiotics in June, have you had him tested since? As for maturity, he has a lot of catching up to do. It may take awhile for him to catch up to his peers. With my son's last exacerbation, even once the strep was cleared, it still took months to fully get him back. It also does become blurred in knowing what personality traits are due to PANDAS being around for so long and what is just him. Try to dig dip, find continued patience, and hopefully it will change after a bit. Do make sure he is spends time with his peers so he can see how they act, but also maybe allow him some younger activities or toys if that is what he wants. Let him catch up on lost time of that childhood innocence. 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. Edited July 30, 2010 by Vickie
mrigsby Posted July 31, 2010 Author Report Posted July 31, 2010 I'm so happy for you! I'm curious, since he finished all antibiotics in June, have you had him tested since? As for maturity, he has a lot of catching up to do. It may take awhile for him to catch up to his peers. With my son's last exacerbation, even once the strep was cleared, it still took months to fully get him back. It also does become blurred in knowing what personality traits are due to PANDAS being around for so long and what is just him. Try to dig dip, find continued patience, and hopefully it will change after a bit. Do make sure he is spends time with his peers so he can see how they act, but also maybe allow him some younger activities or toys if that is what he wants. Let him catch up on lost time of that childhood innocence. 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. 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.
saidie10 Posted July 31, 2010 Report Posted July 31, 2010 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. It is wonderful that you persevered to help your son!!! I would think he would need to be on some type of preventative abx when school starts if it is working so good for him. Be sure to find out about that to help keep him protected!
thereishope Posted July 31, 2010 Report Posted July 31, 2010 (edited) My son is turning 7 in Sept. He has had 3 strep triggered exacerbations and for awhile he had exacerbations with viruses and allergies too. Each child really is different. With exposure to strep, some do have the canary effect where they will have a worsening of symptoms just by being exposed. Their immune system begins to mount an attack in order to avoid infection. This is when one has to remember that PANDAS is caused by antibodies and not the strep itself. Currently, thank God, my son is doing well. I do believe if he should contract strep again it will all come back. At the beginning of the school year, I will once again, sit down with the teacher, give history and try to get through to them how important it is that my son does not get strep. I will contact the principal and have a standing order to get a call if strep is in the classroom of any of my kids. I don't have a 504 plan for PANDAS, but the school is willing to call me for reported strep. Do you have your son involved in anything out of the neighborhood where he can be around kids without any preconcieved ideas of what he will be like and react? I do understand what it's like to have kids ignore your child. Mine has experienced it, but mostly because of a speech disorder. His speech is so much better now, but in the past it was very hard to understand and kids were not nice. Your Momma instinct is to intervene, speak up for them, and get them out the awkward situation, but you can't do that. Don't give those teens fuel to the fire by adding "You Mommy has to defend you, huh". Kids can be cruel. Now, if they are really nasty that's one thing and I say intervene, but if something you feel really isn't a sucker punch, let your son deal with it and discuss it later with him in private or let him know ahead of time that you are watching but will not intervene unless they are really mean or he needs you to. I'm so happy for you! I'm curious, since he finished all antibiotics in June, have you had him tested since? As for maturity, he has a lot of catching up to do. It may take awhile for him to catch up to his peers. With my son's last exacerbation, even once the strep was cleared, it still took months to fully get him back. It also does become blurred in knowing what personality traits are due to PANDAS being around for so long and what is just him. Try to dig dip, find continued patience, and hopefully it will change after a bit. Do make sure he is spends time with his peers so he can see how they act, but also maybe allow him some younger activities or toys if that is what he wants. Let him catch up on lost time of that childhood innocence. 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. 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. Edited July 31, 2010 by Vickie
mrigsby Posted August 1, 2010 Author Report Posted August 1, 2010 My son is turning 7 in Sept. He has had 3 strep triggered exacerbations and for awhile he had exacerbations with viruses and allergies too. Each child really is different. With exposure to strep, some do have the canary effect where they will have a worsening of symptoms just by being exposed. Their immune system begins to mount an attack in order to avoid infection. This is when one has to remember that PANDAS is caused by antibodies and not the strep itself. Currently, thank God, my son is doing well. I do believe if he should contract strep again it will all come back. At the beginning of the school year, I will once again, sit down with the teacher, give history and try to get through to them how important it is that my son does not get strep. I will contact the principal and have a standing order to get a call if strep is in the classroom of any of my kids. I don't have a 504 plan for PANDAS, but the school is willing to call me for reported strep. Do you have your son involved in anything out of the neighborhood where he can be around kids without any preconcieved ideas of what he will be like and react? I do understand what it's like to have kids ignore your child. Mine has experienced it, but mostly because of a speech disorder. His speech is so much better now, but in the past it was very hard to understand and kids were not nice. Your Momma instinct is to intervene, speak up for them, and get them out the awkward situation, but you can't do that. Don't give those teens fuel to the fire by adding "You Mommy has to defend you, huh". Kids can be cruel. Now, if they are really nasty that's one thing and I say intervene, but if something you feel really isn't a sucker punch, let your son deal with it and discuss it later with him in private or let him know ahead of time that you are watching but will not intervene unless they are really mean or he needs you to. I'm so happy for you! I'm curious, since he finished all antibiotics in June, have you had him tested since? As for maturity, he has a lot of catching up to do. It may take awhile for him to catch up to his peers. With my son's last exacerbation, even once the strep was cleared, it still took months to fully get him back. It also does become blurred in knowing what personality traits are due to PANDAS being around for so long and what is just him. Try to dig dip, find continued patience, and hopefully it will change after a bit. Do make sure he is spends time with his peers so he can see how they act, but also maybe allow him some younger activities or toys if that is what he wants. Let him catch up on lost time of that childhood innocence. 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. 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.
Fixit Posted August 1, 2010 Report Posted August 1, 2010 i'm sorry to go old school on you...but.. i remember being a little upset...not too much though, about not having a boyfriend my dad said go.to school ,get a dergree, get a house and then worry about boys...(we were very poor). believe it or not ...that did help...and i didn't have a bow until college...and like my dad said boys are like buses and they always come along.... if his pandas are under control..focus on that...and life will happen and the girls will be there...tell him to enjoy just being young and healthy!!!
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