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Telya

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Hello, my 12 year old had is first PANDAS episode in October of 2007. It took almost 6 months to figure out that it was PANDAS. We've gone through a number of doctors and thearpists. He's been in the psych. hospital 2 times for a week each time, in two outpatient programs 3 weeks each time. We've tried zoloft, ativan, lexapro, without much success or worse a sever reaction casusing the hospitalizations. Now he's on prozac 25 mg, focolan 5 mg xr and .05 mg of clonodine. This mix has got him back in school and doing well academically, however his anxiety is over the top. He was moved to a theraputic class after his last hospitalization and school refusal. He was slowly loosing his friends but that put him over the edge. He hasn't had a friend since March of 2010. He spends his days alone in the basement playing video games or watching TV. He's been to CBT thearpy but wont buy into it. Today is his birthday,my 12 year old son is in his room refusing to eat or talk about what is upsetting him. I finally convinced his pediatrician to put him on maintence antibiotics. From the time this all started to today the "good" times are getting fewer and further apart. I'm tired, he's tired, my family is tired. To make matters worse, we lost our health insurance last year and I would like to pursue IVIG but the state health insurance is not likely to cover it. The psychiatrist we see at University of Illinois Childrens Clinic for stress and anxiety is very good, but she doesn't really address the "PANDAS" she's focusing on the symptoms, social anxiety, inattentiveness etc.

 

Jack had a happy life before this, he had a long list of friends and was outgoing and always busy. He had a great sense of humor and got along great with everyone. He was everyones friend. Now he's no ones friend. In addition to his anxiety, he has sensory issues, his diet is crap, he doesn't seem to enjoy anything other than video games and the family cat. Im rambling I know, but his story is long and complicated like most of the people on this site. Any feedback is appreciated. Thanks for reading.

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Hello, my 12 year old had is first PANDAS episode in October of 2007. It took almost 6 months to figure out that it was PANDAS. We've gone through a number of doctors and thearpists. He's been in the psych. hospital 2 times for a week each time, in two outpatient programs 3 weeks each time. We've tried zoloft, ativan, lexapro, without much success or worse a sever reaction casusing the hospitalizations. Now he's on prozac 25 mg, focolan 5 mg xr and .05 mg of clonodine. This mix has got him back in school and doing well academically, however his anxiety is over the top. He was moved to a theraputic class after his last hospitalization and school refusal. He was slowly loosing his friends but that put him over the edge. He hasn't had a friend since March of 2010. He spends his days alone in the basement playing video games or watching TV. He's been to CBT thearpy but wont buy into it. Today is his birthday,my 12 year old son is in his room refusing to eat or talk about what is upsetting him. I finally convinced his pediatrician to put him on maintence antibiotics. From the time this all started to today the "good" times are getting fewer and further apart. I'm tired, he's tired, my family is tired. To make matters worse, we lost our health insurance last year and I would like to pursue IVIG but the state health insurance is not likely to cover it. The psychiatrist we see at University of Illinois Childrens Clinic for stress and anxiety is very good, but she doesn't really address the "PANDAS" she's focusing on the symptoms, social anxiety, inattentiveness etc.

 

Jack had a happy life before this, he had a long list of friends and was outgoing and always busy. He had a great sense of humor and got along great with everyone. He was everyones friend. Now he's no ones friend. In addition to his anxiety, he has sensory issues, his diet is crap, he doesn't seem to enjoy anything other than video games and the family cat. Im rambling I know, but his story is long and complicated like most of the people on this site. Any feedback is appreciated. Thanks for reading.

 

 

Hi Teyla,

I am so sorry for you, you have been suffering for a long time. What antibiotics is he on and how often? Also, what PANDAS doctor do you see? And have you done the Igenex testing for lyme, which for so many, turns out to be underlying PANDAS, which can't clear until the lyme puzzle is solved.

Please stay on the forum. There are so many who will help you here, you are definitely not alone.

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I am so sorry you are here..but there is alot of support to be had.

i do not know if this will make you feel better or not...but just because someone has insurance does not mean they will get coverage for ivig...

hopefully the abx will start to put a little dent into his condition but it will probably take more than a week or 10 days...

and the dosage has to be high enough..and sometimes certian children respond to one abx more than other.

there is a pretty good list of things you should check, to see if your son has a condition or infection that you can find, that he may respond to with certain abxs, before ivig...jmho

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Hello,

 

sorry to hear about your son's troubles. Hope you will find support here. I sure did- I wouldn't be here without this forum. There are so many supportive people with great information to share. Each person can offer something helpful. So, are you comfortable with your present doc, or are you looking for a doc who will address the PANDAS issue, and treat aggressively with antibiotics and other therapies? I would do lots of reading here regarding which antibiotics have been effective. Seems to depend on the child, but there are a couple of preferred drugs. My son was managed almost entirely with antibiotics. He did need some help last year for anxiety so we tried an SSRI, but it really didn't help all that much. It caused some additional problems, so he went off that. His anxiety has resolved with aggressive treatment with antibiotics. Diet is important for my son- he really responds to super nutritious eating habits. It just makes him feel good, which helps overall. Yes, unfortunately, even if you DID have insurance, you wouldn't be guaranteed to get IVIG covered. We have very good PPO insurance and were denied.

 

Share some more details and we will all help as much as possible! Take a deep breath, and go give your boy a hug and tell him things will get better...

 

 

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Hey Teyla (and Jack) --

 

Your story sounds very familiar. We've been through all the psych drugs, the therapy, outpatient programs, etc. The truly horrific and hard part of our journey began when he was 12. He, too, dodged his friends, spent hours curled up in the fetal position in his roof, stressed out, or in front of the computer or game station, trying to have fun and forget his fears for just a bit.

 

My son will be 14 in one week. Today he is functional, social, happy, even thriving. We continue with CBT/ERP, and he's on a low-dose SSRI (Zoloft) also. He's not entirely anxiety-free or OCD-free, and after almost 2 years of H-E-Double-Toothpicks, he's still relearning some things about self-sufficiency and being a teenager. But I know deep in my heart, without a shadow of a doubt, that we would not have arrived at this considerably better place without antibiotics.

 

And I also know that if we can get to this place, so can you and Jack.

 

When you say you convinced your pediatrician to issue a "maintenance dose" of antibiotics, what do you mean by that? A prophylactic (lower) dose, or a treatment (higher) dose? And which antibiotic? Have you seen any positive changes . . . however small . . . following beginning the abx? How long has he been taking it thus far?

 

Stay tuned, keep reading and keep fighting for treatment opportunities for your son. We live in Illinois, too; I know help can be hard to find here, but you can find it! Feel free to PM me if you like.

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Hey Teyla (and Jack) --

 

Your story sounds very familiar. We've been through all the psych drugs, the therapy, outpatient programs, etc. The truly horrific and hard part of our journey began when he was 12. He, too, dodged his friends, spent hours curled up in the fetal position in his roof, stressed out, or in front of the computer or game station, trying to have fun and forget his fears for just a bit.

 

My son will be 14 in one week. Today he is functional, social, happy, even thriving. We continue with CBT/ERP, and he's on a low-dose SSRI (Zoloft) also. He's not entirely anxiety-free or OCD-free, and after almost 2 years of H-E-Double-Toothpicks, he's still relearning some things about self-sufficiency and being a teenager. But I know deep in my heart, without a shadow of a doubt, that we would not have arrived at this considerably better place without antibiotics.

 

And I also know that if we can get to this place, so can you and Jack.

 

When you say you convinced your pediatrician to issue a "maintenance dose" of antibiotics, what do you mean by that? A prophylactic (lower) dose, or a treatment (higher) dose? And which antibiotic? Have you seen any positive changes . . . however small . . . following beginning the abx? How long has he been taking it thus far?

 

Stay tuned, keep reading and keep fighting for treatment opportunities for your son. We live in Illinois, too; I know help can be hard to find here, but you can find it! Feel free to PM me if you like.

 

Jack is on 875 mg of amoxicillin 2 x a day for 14 days then 500 mg 1x a day for 30 days. He just finished the 2x 875 for 14 days. Yes a few bright moments here and there... its hard to always say, he doesnt share his feelings and doesn't like to have conversations. He's been at this so long that now he is very guarded with what he says because it may lead to something he doesn't want to do. He's very quiet.

Right now I'm grateful that he gets up and goes to school everyday. When this first started, and he refused school, his anxiety would be so high that when we tell him we were going to make him go, he would run to the kitchen and grab a knife to protect himself. (We never threatened him, and we were as calm and loving as we could be) Ill try to send you a PM if I can figure it out. I have no experience with blogs.... social networking sites. If you dont hear from me will you please send me a PM?

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Hi Teyla,

I am so sorry for you, you have been suffering for a long time. What antibiotics is he on and how often? Also, what PANDAS doctor do you see? And have you done the Igenex testing for lyme, which for so many, turns out to be underlying PANDAS, which can't clear until the lyme puzzle is solved.

Please stay on the forum. There are so many who will help you here, you are definitely not alone.

 

Jack is taking 875 mg of amoxcillian 2x a day for 14 day, we just finished that and then 500 mg 1 x a day for 30 days. We dont have PANDAS doc. Just his ped. What is Igenex? Can my ped do it?

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Telya,

I know many parents will share their advice with you and try to get you further along on your journey. I think testing for infections beyond strep is wise and if you go up to the upper right corner of your screen, you'll see a seacrh bar where you can type in words like "igenex" or other things and find previous discussions on a topic. FYI - Igenex is a company that does lyme testing - it is considered a more sensitive lyme test than any test you may have done locally because they look for lyme markers not looked for by other labs. Several parents on this forum who thought their kids have/had Pandas have also found that lyme has been at least a part of the problem. So it's good to test for it early on with a lab that specializes in it.

 

But the thing that made me want to reply to your post was the heartbreaking comment that Jack doesn't like to talk about what's going on. I can totally understand. Very often, when a kid is overwhelmed with anxiety or OCD, the anxiety tells him that talking about it will make it worse. It's like a kidnapper telling the victim that if they try to escape, the kidnapper will kill the victim's family. So the victim stays even when freedom could be a quick run for help.

 

So while your son is on antibiotics (abbreviated abx), if you see his anxiety lessen a bit, take the opportunity to start a line of communication with him. Talking about anxiety/OCD weakens it. Think of it as a kidnapper. It's really important to help your son start to talk about what's going on and let him know you are on his side. Anxiety may have him so overwhelmed with fear that he/it sees you as a threat - someone who will make him do things he finds utterly terrifying. Start to break down that invisible jail by letting him know you will be his coach. He will have to be the one who ultimately conquers his fears, but you can be his cheerleader and not his enemy. Sympathize with him and let him know you understand how hard this is for him. How awful he must feel to be forced to give up the things he loves because the anxiety/OCD monster is telling him he has to.

 

You may want to see if you library has - or will order - the books "Talking Back to OCD" by John March or "What to Do When your Brain gets stuck" or "What to do when you worry too much". These books help create an understanding of what's happening and gives tools for fighting it. You can also use the search bar to look for key words like CBT (cognitive behavior therapy) and ERP (exposure response prevention). At the height of a Pandas episode, these tools are less effective because the fears are so great. But often as antibiotics start to help the body, CBT abd ERP tools help the child re-claim their lives. Opening lines of communication with your son is like throwing him a lifeline back to his former life.

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Welcome. I'm happy you were able to convince your doctor to put him on maintainance antibiotics, but he probably needs full dose, stronger antibiotics for a possible infection if he is still showing so many strong symptoms. If the current doctor you are seeing is not working with you on searching out the root cause or giving the right antibiotics for a possible hidden infection, search for a different pediatrician. I think a lot of times people forget that they do not need to stick with their doctor if the doctor is not willing ot help. You can change.

 

Also, not many PANDAS kids respond to amoxicillin. Here is a link about the failure rate of amox http://www.entrepreneur.com/tradejournals/article/169459644.html

 

It seems the two antibiotics that work for the majority of PANDAS kids are Augmentin and Zithromax.

 

 

Hello, my 12 year old had is first PANDAS episode in October of 2007. It took almost 6 months to figure out that it was PANDAS. We've gone through a number of doctors and thearpists. He's been in the psych. hospital 2 times for a week each time, in two outpatient programs 3 weeks each time. We've tried zoloft, ativan, lexapro, without much success or worse a sever reaction casusing the hospitalizations. Now he's on prozac 25 mg, focolan 5 mg xr and .05 mg of clonodine. This mix has got him back in school and doing well academically, however his anxiety is over the top. He was moved to a theraputic class after his last hospitalization and school refusal. He was slowly loosing his friends but that put him over the edge. He hasn't had a friend since March of 2010. He spends his days alone in the basement playing video games or watching TV. He's been to CBT thearpy but wont buy into it. Today is his birthday,my 12 year old son is in his room refusing to eat or talk about what is upsetting him. I finally convinced his pediatrician to put him on maintence antibiotics. From the time this all started to today the "good" times are getting fewer and further apart. I'm tired, he's tired, my family is tired. To make matters worse, we lost our health insurance last year and I would like to pursue IVIG but the state health insurance is not likely to cover it. The psychiatrist we see at University of Illinois Childrens Clinic for stress and anxiety is very good, but she doesn't really address the "PANDAS" she's focusing on the symptoms, social anxiety, inattentiveness etc.

 

Jack had a happy life before this, he had a long list of friends and was outgoing and always busy. He had a great sense of humor and got along great with everyone. He was everyones friend. Now he's no ones friend. In addition to his anxiety, he has sensory issues, his diet is crap, he doesn't seem to enjoy anything other than video games and the family cat. Im rambling I know, but his story is long and complicated like most of the people on this site. Any feedback is appreciated. Thanks for reading.

Edited by Vickie
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Jack is on 875 mg of amoxicillin 2 x a day for 14 days then 500 mg 1x a day for 30 days. He just finished the 2x 875 for 14 days. Yes a few bright moments here and there... its hard to always say, he doesnt share his feelings and doesn't like to have conversations. He's been at this so long that now he is very guarded with what he says because it may lead to something he doesn't want to do. He's very quiet.

Right now I'm grateful that he gets up and goes to school everyday. When this first started, and he refused school, his anxiety would be so high that when we tell him we were going to make him go, he would run to the kitchen and grab a knife to protect himself. (We never threatened him, and we were as calm and loving as we could be) Ill try to send you a PM if I can figure it out. I have no experience with blogs.... social networking sites. If you dont hear from me will you please send me a PM?

 

Got your PM and responded; hopefully you'll get that notification.

 

I'll second LLM and Vickie. Breaking through that OCD/anxiety wall -- either directly yourself, or with the help of a good therapist -- is important. With PANDAS, the medical help (abx, etc.) is key, but coping until the appropriate medical intervention can be sourced and given sufficient time to kick in is a minefield, too. In our case, ongoing therapy is helping, even after the abx have gone to work.

 

Also, yes, I'm not sure amoxicillin, especially at only 14 days, is going to provide adequate assistance. Most of our kids are on stronger abx with longer activations and/or half-lives, like Augmentin XR and/or azithromycin, and many of us have used treatment doses of at least 30 days, and sometimes much longer than that.

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Welcome. I'm happy you were able to convince your doctor to put him on maintainance antibiotics, but he probably needs full dose, stronger antibiotics for a possible infection if he is still showing so many strong symptoms. If the current doctor you are seeing is not working with you on searching out the root cause or giving the right antibiotics for a possible hidden infection, search for a different pediatrician. I think a lot of times people forget that they do not need to stick with their doctor if the doctor is not willing ot help. You can change.

 

Also, not many PANDAS kids respond to amoxicillin. Here is a link about the failure rate of amox http://www.entrepreneur.com/tradejournals/article/169459644.html

 

It seems the two antibiotics that work for the majority of PANDAS kids are Augmentin and Zithromax.

 

 

Hello, my 12 year old had is first PANDAS episode in October of 2007. It took almost 6 months to figure out that it was PANDAS. We've gone through a number of doctors and thearpists. He's been in the psych. hospital 2 times for a week each time, in two outpatient programs 3 weeks each time. We've tried zoloft, ativan, lexapro, without much success or worse a sever reaction casusing the hospitalizations. Now he's on prozac 25 mg, focolan 5 mg xr and .05 mg of clonodine. This mix has got him back in school and doing well academically, however his anxiety is over the top. He was moved to a theraputic class after his last hospitalization and school refusal. He was slowly loosing his friends but that put him over the edge. He hasn't had a friend since March of 2010. He spends his days alone in the basement playing video games or watching TV. He's been to CBT thearpy but wont buy into it. Today is his birthday,my 12 year old son is in his room refusing to eat or talk about what is upsetting him. I finally convinced his pediatrician to put him on maintence antibiotics. From the time this all started to today the "good" times are getting fewer and further apart. I'm tired, he's tired, my family is tired. To make matters worse, we lost our health insurance last year and I would like to pursue IVIG but the state health insurance is not likely to cover it. The psychiatrist we see at University of Illinois Childrens Clinic for stress and anxiety is very good, but she doesn't really address the "PANDAS" she's focusing on the symptoms, social anxiety, inattentiveness etc.

 

Jack had a happy life before this, he had a long list of friends and was outgoing and always busy. He had a great sense of humor and got along great with everyone. He was everyones friend. Now he's no ones friend. In addition to his anxiety, he has sensory issues, his diet is crap, he doesn't seem to enjoy anything other than video games and the family cat. Im rambling I know, but his story is long and complicated like most of the people on this site. Any feedback is appreciated. Thanks for reading.

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Thanks for the link, I'm making an appt to talk with jacks ped. He's been supportive and is open. I think if I provide him the info he will do what I ask. Jack has gotten better at sharing with us and no longer thinks were the enemy. But yourrightthat anxiety is a brainwashed and kidnapper. I'm trying to find kids in our area that he might be able to connect with.

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Thanks for the link, I'm making an appt to talk with jacks ped. He's been supportive and is open. I think if I provide him the info he will do what I ask. Jack has gotten better at sharing with us and no longer thinks were the enemy. But yourrightthat anxiety is a brainwashed and kidnapper. I'm trying to find kids in our area that he might be able to connect with.

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