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Dedee
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I got your PM asking about how my son is doing. You are right, I rarely get time to post anymore. Things have gotten tight at work and home is so busy there is little time. I “pop in”, and catch up on everyone occasionally and marvel at how far we have come as a community. So awesome. Anyway, to answer your question, my son is doing absolutely great. It is funny that you asked at this time. I was watching him just the other day and got teary eyed thinking of how far he has come. Each year he improves more and more. He seems so happy now and laughs and truly interacts with the family. He has made straight A’s all school year. I am so thankful for everything we have experienced and learned from this forum. He is now 14 yrs old. We started this journey when he was 5. Of course, back then I knew no one else with this problem and was totally devastated. He is currently off all OCD and Tic medications. He still takes antibiotics, fish oil, magnesium, & probiotics. We have discussed a trial period of no antibiotics, but honestly, I am terrified at the prospect. I have been taking him to a family counselor for over a year to help him deal with some eating issues that still linger from the OCD. This seems to have helped on many levels. I think these kids are so traumatized by this illness and what it does to them socially and to their self esteem. The counseling has been a big help. I nearly had to drag him there the first couple of times. He is now a willing participant (not necessarily eager) and I believe it has been very helpful. I know how horribly devastating this illness can be to a family, and I pray that everyone can find peace and healing. I am so proud of all the parents who fight so diligently for their children instead of standing back and accepting the usual brush off. I know you are all exhausted and feel like crying most of the time, but it will pay off and your child’s future will be the light at the end of this darkness. God bless you all.

 

Dedee

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Thanks Wendy. I wish I had more time to spend here. There was a time when I was here every day and was able to keep up with everyone. As my children have gotten older and into more activities, I have found that almost impossible. I try to keep up with the advances in PANDAS treatment. I suspect that my six year old daughter has tendencies for PANDAS and worry about a full blown episode in the future. Still holding my breath. I am amazed at how far this forum has come since I first started coming here about four years ago. It's so wonderful that there is so much support out there now for our families. Now if we could just get all the doctors on board.

 

Dedee

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Yeah...... I am definitely interested in what you feel made your son better. Did you do IVIG and how much does he weigh and what dose of antibiotic is he on now? What was his primary presentation and how long do you think he was ill prior to treatment? AND, how long was his recovery process?

 

Truly congratulations on your success in your son's recovery, again its the hope that keeps me going so thank you.

 

-Wendy

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I'm so glad that your son is doing well. Would you say the eating problems were anorexic, contamination fears, choking, etc? My son had eating issues as well. He never really voiced why he had them. I think it was a muti-faceted problem.

 

Thank you for the update. I wish you and your family continued health and happiness!

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Hello everyone, sorry it took so long to get back with answers. Thank you so much for all the kind words. I am happy to share my sons story, but as you can imagine it is very long since it started almost ten years ago. I apologize ahead for the length. In the fall of 2000, while in kindergarten, my then 5 year old son was treated with amoxicillin for strep throat. One week after starting amoxicillin, he abruptly began having extreme separation anxiety, and fear of harm coming to his parents. He started apologizing constantly about very insignificant matters, constantly concerned that he might do something wrong and be punished by God. He required constant reassurance. He did not want to eat on regular plates or with utensils that he had not cleaned himself, in fear of contamination from dirt. He began staying in the house instead of playing outside. Hand washing became frequent to the point that his hands were constantly red and peeling. Sleeping became difficult, and he began sleeping on the floor beside our bed. These symptoms had never been part of his personality before. He awoke one morning with fears and issues we had never experienced with him. Over a three day period, he completely stopped eating due to the fear of contamination, and his teacher reported a near inability to teach class due to his incessant apologies. A visit was made to his pediatrician where a diagnosis of OCD was made. The pediatrician made a comment that sometimes this is triggered by strep, but we can only treat the symptoms. He was started on Zoloft and began treatment with a psychiatrist. The term PANDAS was never mentioned. Symptoms gradually began to decrease, though never to a “pre-illness” state. Over the next six years, he would had strep infections several more times and this would cause an exacerbation of symptoms each time. Most episodes included reoccurrence of separation anxiety, emotional lability, regression in school work, and varying behavior changes. Again no one would mention the term PANDAS. Usually the symptoms would cause us to have to increase or change his SSRI medication in order to get him "better". As the strep resolved, there would be a decrease in symptoms. Periodic strep infections would result in varying behavior changes and anxieties, most of which you are all painfully aware.

 

In Sept of 2006, he was treated with amoxicillin for a strep infection again. Behavior changes and anxiety returned. He was currently on SSRI therapy. Three weeks after stopping the antibiotics he complained of sore throat and was positive for strep. He received amoxicillin for treatment. The next month he was treated twice for strep, again with amoxicillin both times. Behavior changes and anxiety were greatly increased, along with difficulty in school and with homework. He was crying frequently and having difficulty with sleep. In November, with the fourth strep infection, he awoke one morning with severe debilitating head jerking and eye blinking / rolling tics. He had never exhibited any tendency toward tics in the past. The tics were so severe and frequent that initially we thought he may be having seizures. We immediately contacted his pediatrician and psychiatrist. A neurologist was consulted and he was started on abilify 2.5mg daily. The abilify seemed to control the tics, but he complained of constant fatigue and had difficulty staying awake in school. This is when I got to work on trying to help my son. I found this forum and began to read about antibiotic therapy and about doctors who actually knew about this kind of illness. I was determined however that this was our last episode of strep.

 

In December of 2006 he underwent a tonsillectomy & adenoidectomy and was given Augmentin for two weeks post operatively. The abilify was stopped at the time of surgery. We noticed during his recovery period that his tics had completely disappeared. We initially believed it was a result of the T & A. However, two days after his post op antibiotics ended, his tics began to return. We became curious as to whether there was a connection. I called his pediatrician and explained the situation. She agreed to another two weeks of antibiotics. He was given two weeks of Amoxicillin. Within 48 hours of starting the antibiotics, his tics were significantly decreased, and by 72 hours they were not noticeable. When the amoxicillin was stopped at the end of two weeks, the tics returned . He also began to complain of involuntary movement in his fingers. This movement made him feel compelled to frequently hold onto his fingers in order to keep them still. The amoxicillin was restarted and we began searching for a physician who could guide us, and our pediatrician in an acceptable treatment plan. Our pediatrician was very compassionate and agreed that we could keep the antibiotics until we found someone experienced in PANDAS to guide his treatment. It was through this forum that we heard about Dr. Tonya Murphy, then at the Shands clinic. This was some distance from our home, but we felt it worth the investment. We put our son on the waiting list. When we were able to see Dr. Murphy (about four months after calling) she confirmed the appropriate use of “maintenance” antibiotics, and offered a treatment plan for our pediatrician. We have continued with amoxicillin 250mg twice daily and added fish oil and probiotics. After his visit with Dr. Murphy in summer of 2006, we slowly, and gradually decreased his celexa. He continued to do very well with only antibiotic therapy. Shortly after his celexa was completely stopped, his tics returned but he really didn't feel like they were a problem. There were no behavior changes or regression in school work. I gave him 5-HTP for a while and the tics gradually decreased to barely noticeable. Not sure if that would have happened anyway. He is now off of 5-HTP and I occasionally see a shoulder shrug that I recognize as his tic. No one else can tell that it isn't voluntary. I'm sure you all know what I mean.

 

He has done very well since then and is now 14 years old. He is a sweet, bright, child who makes A honor roll (occasional B's) He started playing football this year. We haven’t seen personality issues related to PANDAS in several years (since antibiotics). There are rare episodes of tics that are noticeable only to family. Of course, no one knows what will happen when antibiotic therapy is stopped. Haven't considered that yet.

 

I am sure that the turning point for him was when he had his tonsillectomy and was started on antibiotics. I know there is some contraversy over tonsillectomies. I think everyone has to do what they feel is right in their specific situation. These kids all react so differently it is highly individualized. There have been a couple of times over the years, mostly with the tics, that I have asked the pediatrician to give us a full dose of antibiotics for a couple of weeks to see if that calmed things down and then we went back to the maintenance dose (amoxicillin 250mg twice daily).

 

Some asked about his eating issues. He had big issues when he was having OCD symptoms. He would only eat certain random things. Really made no sense what he would or would not eat. No meat, no vegetables. Mostly peanut butter, milk crackers, french fries, cookies and a few more odd things. As he got better his menu expanded somewhat but never to what anyone would consider normal by any stretch of the imagination. Also, as he became a teenager and more social, this started to bother him because he couldn't eat around the other kids when they were at events because they weren't serving anything he would eat. It was really causing him anxiety and I wasn't able to help so I decided to try a little family counseling. He has responded beautifully to that and has really started to come out of his shell more. He has, so far, eaten two new items so I guess that is progress. But mostly I see him smiling and laughing so much more which tells me he needed a little talk therapy(Hey, who doesn't).

 

Gosh, I know this is a novel. I was trying to cover everything. His current meds are still: same dose of Antibiotics (Amoxcillin 250mg twice daily), fish oil, probiotics, magnesium & multivitimin. We never went the IVIG route, but it wasn't very big when we were seeking treatment. I certainly would have considered it. I am forever grateful to this forum for the support I received and for sending me in the direction for appropriate treatment for my son. The families here are awesome.

 

Dedee

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Dedee- Thank you for taking the time to share your story. So much of pandas (for the parents) is worry about the future. It is so great to hear a happy, but realistic, picture of recovery, and happiness. If we can have hope that in the end things will work out and be okay, it gives us the strength to get through the rough times. Your son is so lucky to have you, and it sounds like the route you took addressing the medical and psychological part of this disorder really worked.

Thank you!

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Hello everyone, sorry it took so long to get back with answers. Thank you so much for all the kind words. I am happy to share my sons story, but as you can imagine it is very long since it started almost ten years ago. I apologize ahead for the length. In the fall of 2000, while in kindergarten, my then 5 year old son was treated with amoxicillin for strep throat. One week after starting amoxicillin, he abruptly began having extreme separation anxiety, and fear of harm coming to his parents. He started apologizing constantly about very insignificant matters, constantly concerned that he might do something wrong and be punished by God. He required constant reassurance. He did not want to eat on regular plates or with utensils that he had not cleaned himself, in fear of contamination from dirt. He began staying in the house instead of playing outside. Hand washing became frequent to the point that his hands were constantly red and peeling. Sleeping became difficult, and he began sleeping on the floor beside our bed. These symptoms had never been part of his personality before. He awoke one morning with fears and issues we had never experienced with him. Over a three day period, he completely stopped eating due to the fear of contamination, and his teacher reported a near inability to teach class due to his incessant apologies. A visit was made to his pediatrician where a diagnosis of OCD was made. The pediatrician made a comment that sometimes this is triggered by strep, but we can only treat the symptoms. He was started on Zoloft and began treatment with a psychiatrist. The term PANDAS was never mentioned. Symptoms gradually began to decrease, though never to a “pre-illness” state. Over the next six years, he would had strep infections several more times and this would cause an exacerbation of symptoms each time. Most episodes included reoccurrence of separation anxiety, emotional lability, regression in school work, and varying behavior changes. Again no one would mention the term PANDAS. Usually the symptoms would cause us to have to increase or change his SSRI medication in order to get him "better". As the strep resolved, there would be a decrease in symptoms. Periodic strep infections would result in varying behavior changes and anxieties, most of which you are all painfully aware.

 

In Sept of 2006, he was treated with amoxicillin for a strep infection again. Behavior changes and anxiety returned. He was currently on SSRI therapy. Three weeks after stopping the antibiotics he complained of sore throat and was positive for strep. He received amoxicillin for treatment. The next month he was treated twice for strep, again with amoxicillin both times. Behavior changes and anxiety were greatly increased, along with difficulty in school and with homework. He was crying frequently and having difficulty with sleep. In November, with the fourth strep infection, he awoke one morning with severe debilitating head jerking and eye blinking / rolling tics. He had never exhibited any tendency toward tics in the past. The tics were so severe and frequent that initially we thought he may be having seizures. We immediately contacted his pediatrician and psychiatrist. A neurologist was consulted and he was started on abilify 2.5mg daily. The abilify seemed to control the tics, but he complained of constant fatigue and had difficulty staying awake in school. This is when I got to work on trying to help my son. I found this forum and began to read about antibiotic therapy and about doctors who actually knew about this kind of illness. I was determined however that this was our last episode of strep.

 

In December of 2006 he underwent a tonsillectomy & adenoidectomy and was given Augmentin for two weeks post operatively. The abilify was stopped at the time of surgery. We noticed during his recovery period that his tics had completely disappeared. We initially believed it was a result of the T & A. However, two days after his post op antibiotics ended, his tics began to return. We became curious as to whether there was a connection. I called his pediatrician and explained the situation. She agreed to another two weeks of antibiotics. He was given two weeks of Amoxicillin. Within 48 hours of starting the antibiotics, his tics were significantly decreased, and by 72 hours they were not noticeable. When the amoxicillin was stopped at the end of two weeks, the tics returned . He also began to complain of involuntary movement in his fingers. This movement made him feel compelled to frequently hold onto his fingers in order to keep them still. The amoxicillin was restarted and we began searching for a physician who could guide us, and our pediatrician in an acceptable treatment plan. Our pediatrician was very compassionate and agreed that we could keep the antibiotics until we found someone experienced in PANDAS to guide his treatment. It was through this forum that we heard about Dr. Tonya Murphy, then at the Shands clinic. This was some distance from our home, but we felt it worth the investment. We put our son on the waiting list. When we were able to see Dr. Murphy (about four months after calling) she confirmed the appropriate use of “maintenance” antibiotics, and offered a treatment plan for our pediatrician. We have continued with amoxicillin 250mg twice daily and added fish oil and probiotics. After his visit with Dr. Murphy in summer of 2006, we slowly, and gradually decreased his celexa. He continued to do very well with only antibiotic therapy. Shortly after his celexa was completely stopped, his tics returned but he really didn't feel like they were a problem. There were no behavior changes or regression in school work. I gave him 5-HTP for a while and the tics gradually decreased to barely noticeable. Not sure if that would have happened anyway. He is now off of 5-HTP and I occasionally see a shoulder shrug that I recognize as his tic. No one else can tell that it isn't voluntary. I'm sure you all know what I mean.

 

He has done very well since then and is now 14 years old. He is a sweet, bright, child who makes A honor roll (occasional B's) He started playing football this year. We haven’t seen personality issues related to PANDAS in several years (since antibiotics). There are rare episodes of tics that are noticeable only to family. Of course, no one knows what will happen when antibiotic therapy is stopped. Haven't considered that yet.

 

I am sure that the turning point for him was when he had his tonsillectomy and was started on antibiotics. I know there is some contraversy over tonsillectomies. I think everyone has to do what they feel is right in their specific situation. These kids all react so differently it is highly individualized. There have been a couple of times over the years, mostly with the tics, that I have asked the pediatrician to give us a full dose of antibiotics for a couple of weeks to see if that calmed things down and then we went back to the maintenance dose (amoxicillin 250mg twice daily).

 

Some asked about his eating issues. He had big issues when he was having OCD symptoms. He would only eat certain random things. Really made no sense what he would or would not eat. No meat, no vegetables. Mostly peanut butter, milk crackers, french fries, cookies and a few more odd things. As he got better his menu expanded somewhat but never to what anyone would consider normal by any stretch of the imagination. Also, as he became a teenager and more social, this started to bother him because he couldn't eat around the other kids when they were at events because they weren't serving anything he would eat. It was really causing him anxiety and I wasn't able to help so I decided to try a little family counseling. He has responded beautifully to that and has really started to come out of his shell more. He has, so far, eaten two new items so I guess that is progress. But mostly I see him smiling and laughing so much more which tells me he needed a little talk therapy(Hey, who doesn't).

 

Gosh, I know this is a novel. I was trying to cover everything. His current meds are still: same dose of Antibiotics (Amoxcillin 250mg twice daily), fish oil, probiotics, magnesium & multivitimin. We never went the IVIG route, but it wasn't very big when we were seeking treatment. I certainly would have considered it. I am forever grateful to this forum for the support I received and for sending me in the direction for appropriate treatment for my son. The families here are awesome.

 

Dedee

Thank you Dedee for your story. It has brought me hope for the future. We are just at the start of our journey and I am so scared. Hearing your sons story has helped me more than you will ever know. I wish you and your family all the best. Lisa

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You are all so very welcome. My heart goes out to each family dealing with this issue. I worry that we may be right back to the beginning at some point with my daughter who shows definate tendencies toward PANDAS. She is six and had strep only once when she was four. She has always been extremely strong willed and has seperation anxiety that is beyond extreme. We have some trouble with her getting "stuck" on ideas, but possibly she is just very stubborn and just cant let things go. I worry that another strep infection may result in a full blown PANDAS episode. I didn't allow her to have the H1N1 vaccine this year, but I'm not sure what all can be done to truly stop this train if it is coming. I guess we can only wait and pray. Anyway, thanks for listening to my concern. I wish you all the best of luck. God bless you all.

 

Dedee

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