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Hi all. I'm new to this group but no stranger to PANDAS. My son just turned 16 and is having the biggest backslide in 3 years. This is his 3rd major backslide. At age 8, it went completely undiagnosed, at 11 it took four months of searching his symptom cluster online until I found it, after which I could not get a doctor to buy into the theory (despite ridiculous titer levels and easily meeting diagnostic criteria) until I finally cross referenced the disorder and its prevalence in the Autism community. My son's not autistic though. From there I found a DAN! doc who was willing to think outside the box to a degree but by no means the PANDAS expert some of you are clearly aligned with. My son has never had a trial of abx therapy that lasted more than 2 wks. He was eventually given some relief with Fluconazole (antifungal) as we knew he had yeast issues also. He recovered eventually and we've had a wonderful year and a half with only occasional blips of ocd, panic and separation anxiety.

 

It's back, it's bad and he's 16. He knows how life was just a few weeks ago, he also knows how bad it gets and how long, historically, it lasts for him. Any advice on how to handle the emotional lability piece at 16?

 

momto2pandas, your post from 12/2 reminding us that many (some say most) go on to live happy lives despite lack of cutting edge treatment has saved me today. Thank you so very much.

 

I'm in East Tennessee. Any doc suggestions for the south? We need a steroid burst and abx yesterday.

 

Many thanks,

Gat's mom

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Here's a link to her most recent post. You can send her a personal message (to ensure she reads it) and perhaps she can direct you to a doctor.

 

http://www.latitudes.org/forums/index.php?showtopic=6509

 

Vickie, thanks so much for responding. He started tonight the only abx I could get his DAN! to prescribe. 3 days of Azith 500mg bid, followed by 250mg twice a week for a month. I would be highly surprised if that was enough to bring about significant change in him. We need significant change asap. He wants to be in school but the anxiety about being there is more than he can do. This is worse than at age 11 where he didn't want to be in school at all.

 

I've been reading everything I can find on biofilms as well and we're actually following (since thursday) Dr. Usman's protocol. Very interesting information that I believe may help us get the most out of abx treatment. He's had titers drawn that were wildly high. The rest of the house has never been tested, though I have a long, ugly pediatric history of urethral strictures which an herbalist we know says is almost always strep.

 

I believe I have a kid with multiple layers including some heavy metals from an MMR at 15 mos that went way wrong. Strep is just the one that grinds his world to an immediate half. I'm looking up TracyRee now. Thanks, again, so much for the lead.

 

Gayle

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Others will chime in about the dosing. I know the 250 twice week isn't enough though.

 

Do get everyone in the house tested. you can have strep w/o symptoms. That's the case for all 3 of my kid. if I did have the mentality to "rule it out" when my PANDAS son was +, I would have never know they had strep as well. Get the adults tested too.

 

If he can take Ibuprofen, give him that and see if it helps with his PANDAS symptoms. Some see some relief with it.

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Hi Gat's Mom,

 

So sorry to hear that you are going through this. I know well what it's like to be 16 and to have your mind pulled right out from under you like the proverbial rug. Obviously you need to find a good doctor, which you're working on. In the meantime, you might try a couple of things that you can do right away. For me, in the post-puberty times, the Omegabrite formulation of Omega-3 fatty acids was a lifesaver. Doesn't necessarily get you all the way there, but great support and most of the time got rid of my symptoms 98% once I discovered it. SAM-E, which you can get at any drugstore, also gave me a swift and potent kick in the right direction (within hours) when I headed downhill. I still keep some in the cabinet and use it rarely, if I'm getting sick and feeling "off" - but only a couple of days and only in the morning, else it becomes way too activating for me. Proceed with caution. We've also had good results from IntraKid/IntraMax, not sure which is appropriate at 16. I don't know what it is in there that is so helpful, but it has worked wonders for all of the "background" stuff for our kids and I felt great on it, too, so it might help some. (Hasn't been enough for real acute infections, though.) All of these things are pretty expensive and not enough for a really bad episode, but they have helped us a lot while not on antibiotics.

 

Does your son have any acne at all? You can always do what I did when I was young, after getting diagnosed as a "one-off" PANDAS-before-it-had-a-name but before I could convince a shrink to keep me on antibiotics for any extended period of time. I went to a cosmetic dermatologist (pretty easy to get appts with those guys) and complained of acne (even though I never really had more than 1-2 zits per month) and said that I was extremely self-conscious and wanted antibiotics. I found it very easy to get at least a couple of months at a time going that way, and I was always able to convince them to get me up to the doses I wanted to be on. Hate to send you down a path of deception, but desperate times call for desperate measures. Like many here, I know a lot about desperate times.

 

If he is depressed about having such a condition, he might be at an age to benefit psychologically from reading some Kay Redfield Jamison, like "Touched with Fire." She writes about the connection between mental illness and creative genius, basically, and goes through a lot of biographical information about famous artists, authors, etc. who suffered. Quite academic reading, but I read it when it first came out in the early 90's, which was toward the end of my real battles, and I loved it -- it put things in perspective for me and made me see the special side of who I was, not just the "abnormal" side - the latter of which is easy to focus on when you're a teen and your life seems to be slipping right through your fingers. I firmly believe that PANDAS comes with many profound gifts as well as liabilities - and sooner or later, to a large extent, you outgrow the liabilities. I would look through it yourself, first, though, to make sure that he's in the right place to benefit from that sort of thing.

 

Most of all, hang in there! To me, the most important thing I did in my teens was just hang on for dear life. At that time, I didn't even know that it could ever get better, so it would have been easiest to have thrown in the towel. What a shame that would have been. The last couple of decades of my life have been pretty great all things considered.

 

Let me know if there is anything at all that I can do.

 

 

Hi all. I'm new to this group but no stranger to PANDAS. My son just turned 16 and is having the biggest backslide in 3 years. This is his 3rd major backslide. At age 8, it went completely undiagnosed, at 11 it took four months of searching his symptom cluster online until I found it, after which I could not get a doctor to buy into the theory (despite ridiculous titer levels and easily meeting diagnostic criteria) until I finally cross referenced the disorder and its prevalence in the Autism community. My son's not autistic though. From there I found a DAN! doc who was willing to think outside the box to a degree but by no means the PANDAS expert some of you are clearly aligned with. My son has never had a trial of abx therapy that lasted more than 2 wks. He was eventually given some relief with Fluconazole (antifungal) as we knew he had yeast issues also. He recovered eventually and we've had a wonderful year and a half with only occasional blips of ocd, panic and separation anxiety.

 

It's back, it's bad and he's 16. He knows how life was just a few weeks ago, he also knows how bad it gets and how long, historically, it lasts for him. Any advice on how to handle the emotional lability piece at 16?

 

momto2pandas, your post from 12/2 reminding us that many (some say most) go on to live happy lives despite lack of cutting edge treatment has saved me today. Thank you so very much.

 

I'm in East Tennessee. Any doc suggestions for the south? We need a steroid burst and abx yesterday.

 

Many thanks,

Gat's mom

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Hi Gat's Mom,

 

So sorry to hear that you are going through this. I know well what it's like to be 16 and to have your mind pulled right out from under you like the proverbial rug. Obviously you need to find a good doctor, which you're working on. In the meantime, you might try a couple of things that you can do right away. For me, in the post-puberty times, the Omegabrite formulation of Omega-3 fatty acids was a lifesaver. Doesn't necessarily get you all the way there, but great support and most of the time got rid of my symptoms 98% once I discovered it. SAM-E, which you can get at any drugstore, also gave me a swift and potent kick in the right direction (within hours) when I headed downhill. I still keep some in the cabinet and use it rarely, if I'm getting sick and feeling "off" - but only a couple of days and only in the morning, else it becomes way too activating for me. Proceed with caution. We've also had good results from IntraKid/IntraMax, not sure which is appropriate at 16. I don't know what it is in there that is so helpful, but it has worked wonders for all of the "background" stuff for our kids and I felt great on it, too, so it might help some. (Hasn't been enough for real acute infections, though.) All of these things are pretty expensive and not enough for a really bad episode, but they have helped us a lot while not on antibiotics.

 

Does your son have any acne at all? You can always do what I did when I was young, after getting diagnosed as a "one-off" PANDAS-before-it-had-a-name but before I could convince a shrink to keep me on antibiotics for any extended period of time. I went to a cosmetic dermatologist (pretty easy to get appts with those guys) and complained of acne (even though I never really had more than 1-2 zits per month) and said that I was extremely self-conscious and wanted antibiotics. I found it very easy to get at least a couple of months at a time going that way, and I was always able to convince them to get me up to the doses I wanted to be on. Hate to send you down a path of deception, but desperate times call for desperate measures. Like many here, I know a lot about desperate times.

 

If he is depressed about having such a condition, he might be at an age to benefit psychologically from reading some Kay Redfield Jamison, like "Touched with Fire." She writes about the connection between mental illness and creative genius, basically, and goes through a lot of biographical information about famous artists, authors, etc. who suffered. Quite academic reading, but I read it when it first came out in the early 90's, which was toward the end of my real battles, and I loved it -- it put things in perspective for me and made me see the special side of who I was, not just the "abnormal" side - the latter of which is easy to focus on when you're a teen and your life seems to be slipping right through your fingers. I firmly believe that PANDAS comes with many profound gifts as well as liabilities - and sooner or later, to a large extent, you outgrow the liabilities. I would look through it yourself, first, though, to make sure that he's in the right place to benefit from that sort of thing.

 

Most of all, hang in there! To me, the most important thing I did in my teens was just hang on for dear life. At that time, I didn't even know that it could ever get better, so it would have been easiest to have thrown in the towel. What a shame that would have been. The last couple of decades of my life have been pretty great all things considered.

 

Let me know if there is anything at all that I can do.

 

 

Hi all. I'm new to this group but no stranger to PANDAS. My son just turned 16 and is having the biggest backslide in 3 years. This is his 3rd major backslide. At age 8, it went completely undiagnosed, at 11 it took four months of searching his symptom cluster online until I found it, after which I could not get a doctor to buy into the theory (despite ridiculous titer levels and easily meeting diagnostic criteria) until I finally cross referenced the disorder and its prevalence in the Autism community. My son's not autistic though. From there I found a DAN! doc who was willing to think outside the box to a degree but by no means the PANDAS expert some of you are clearly aligned with. My son has never had a trial of abx therapy that lasted more than 2 wks. He was eventually given some relief with Fluconazole (antifungal) as we knew he had yeast issues also. He recovered eventually and we've had a wonderful year and a half with only occasional blips of ocd, panic and separation anxiety.

 

It's back, it's bad and he's 16. He knows how life was just a few weeks ago, he also knows how bad it gets and how long, historically, it lasts for him. Any advice on how to handle the emotional lability piece at 16?

 

momto2pandas, your post from 12/2 reminding us that many (some say most) go on to live happy lives despite lack of cutting edge treatment has saved me today. Thank you so very much.

 

I'm in East Tennessee. Any doc suggestions for the south? We need a steroid burst and abx yesterday.

 

Many thanks,

Gat's mom

 

momto2pandas,

 

You have done more for me than you realize. He doesn't think his life will get better, he is beginning to believe he's been singled out for a "horrible life". He doesn't want to fall behind at school and the anxiety of going is wearing him down to a shell. He beats himself up for being weak and feels the pain of it all so intensely (who wouldn't?). I can understand where he gets this thinking, particularly since he's feeling his emotions sooo powerfully during this backslide. At 8 and 11, he was only thinking about the now. At 16, he's wanting some assurances that he gets a good life like everyone else. I can now, honestly, tell him that I know of someone who had it and has grown up, on and away from it.

 

You're correct about the talents though. His the most intuitive human I know with a deep streak of understanding and compassion, neither of which have been returned to him in great depth by our school system. I will review the book but think it sounds fabulous.

 

These are the hardest days we've ever experienced (in all 3 episodes). I wondered today how in the world I'd get through it again and be optimistic, calm and focused for him. You were right on time, such a benefit to me. Thank you so very much.

 

Gat's mom

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Others will chime in about the dosing. I know the 250 twice week isn't enough though.

 

Do get everyone in the house tested. you can have strep w/o symptoms. That's the case for all 3 of my kid. if I did have the mentality to "rule it out" when my PANDAS son was +, I would have never know they had strep as well. Get the adults tested too.

 

If he can take Ibuprofen, give him that and see if it helps with his PANDAS symptoms. Some see some relief with it.

 

Vickie,

 

I will have testing ordered on his sister and I. She just finished nursing school and will be living at home for a few months before moving out on her own. All the more reason to get that boy on some sort of aggressive protocol stat! I have noticed that things get a big better when he takes Ibuprofen.

 

He's on a good deal of supplements now as part of the DAN! protocol. We will be keeping those on board as they all support a healthy, but moderated immune system and address some of the focus and ocd symptoms from a natural standpoint.

 

Thank you so, so much for your response. I feel 100X more understood and less isolated than I did this morning.

 

Gat's mom

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Hi Gat's Mom,

 

So sorry to hear that you are going through this. I know well what it's like to be 16 and to have your mind pulled right out from under you like the proverbial rug. Obviously you need to find a good doctor, which you're working on. In the meantime, you might try a couple of things that you can do right away. For me, in the post-puberty times, the Omegabrite formulation of Omega-3 fatty acids was a lifesaver. Doesn't necessarily get you all the way there, but great support and most of the time got rid of my symptoms 98% once I discovered it. SAM-E, which you can get at any drugstore, also gave me a swift and potent kick in the right direction (within hours) when I headed downhill. I still keep some in the cabinet and use it rarely, if I'm getting sick and feeling "off" - but only a couple of days and only in the morning, else it becomes way too activating for me. Proceed with caution. We've also had good results from IntraKid/IntraMax, not sure which is appropriate at 16. I don't know what it is in there that is so helpful, but it has worked wonders for all of the "background" stuff for our kids and I felt great on it, too, so it might help some. (Hasn't been enough for real acute infections, though.) All of these things are pretty expensive and not enough for a really bad episode, but they have helped us a lot while not on antibiotics.

 

Does your son have any acne at all? You can always do what I did when I was young, after getting diagnosed as a "one-off" PANDAS-before-it-had-a-name but before I could convince a shrink to keep me on antibiotics for any extended period of time. I went to a cosmetic dermatologist (pretty easy to get appts with those guys) and complained of acne (even though I never really had more than 1-2 zits per month) and said that I was extremely self-conscious and wanted antibiotics. I found it very easy to get at least a couple of months at a time going that way, and I was always able to convince them to get me up to the doses I wanted to be on. Hate to send you down a path of deception, but desperate times call for desperate measures. Like many here, I know a lot about desperate times.

 

If he is depressed about having such a condition, he might be at an age to benefit psychologically from reading some Kay Redfield Jamison, like "Touched with Fire." She writes about the connection between mental illness and creative genius, basically, and goes through a lot of biographical information about famous artists, authors, etc. who suffered. Quite academic reading, but I read it when it first came out in the early 90's, which was toward the end of my real battles, and I loved it -- it put things in perspective for me and made me see the special side of who I was, not just the "abnormal" side - the latter of which is easy to focus on when you're a teen and your life seems to be slipping right through your fingers. I firmly believe that PANDAS comes with many profound gifts as well as liabilities - and sooner or later, to a large extent, you outgrow the liabilities. I would look through it yourself, first, though, to make sure that he's in the right place to benefit from that sort of thing.

 

Most of all, hang in there! To me, the most important thing I did in my teens was just hang on for dear life. At that time, I didn't even know that it could ever get better, so it would have been easiest to have thrown in the towel. What a shame that would have been. The last couple of decades of my life have been pretty great all things considered.

 

Let me know if there is anything at all that I can do.

 

 

Hi all. I'm new to this group but no stranger to PANDAS. My son just turned 16 and is having the biggest backslide in 3 years. This is his 3rd major backslide. At age 8, it went completely undiagnosed, at 11 it took four months of searching his symptom cluster online until I found it, after which I could not get a doctor to buy into the theory (despite ridiculous titer levels and easily meeting diagnostic criteria) until I finally cross referenced the disorder and its prevalence in the Autism community. My son's not autistic though. From there I found a DAN! doc who was willing to think outside the box to a degree but by no means the PANDAS expert some of you are clearly aligned with. My son has never had a trial of abx therapy that lasted more than 2 wks. He was eventually given some relief with Fluconazole (antifungal) as we knew he had yeast issues also. He recovered eventually and we've had a wonderful year and a half with only occasional blips of ocd, panic and separation anxiety.

 

It's back, it's bad and he's 16. He knows how life was just a few weeks ago, he also knows how bad it gets and how long, historically, it lasts for him. Any advice on how to handle the emotional lability piece at 16?

 

momto2pandas, your post from 12/2 reminding us that many (some say most) go on to live happy lives despite lack of cutting edge treatment has saved me today. Thank you so very much.

 

I'm in East Tennessee. Any doc suggestions for the south? We need a steroid burst and abx yesterday.

 

Many thanks,

Gat's mom

 

Further...that's brilliant about the dermatologist for abx. Yes, he does have acne, enough to warrant the abx. I am not opposed to sliding in a back door to have his needs met. I gave up conformity when it was clear how many times he was misdiagnosed. You rock!

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Hi Gat's Mom,

 

So sorry to hear that you are going through this. I know well what it's like to be 16 and to have your mind pulled right out from under you like the proverbial rug. Obviously you need to find a good doctor, which you're working on. In the meantime, you might try a couple of things that you can do right away. For me, in the post-puberty times, the Omegabrite formulation of Omega-3 fatty acids was a lifesaver. Doesn't necessarily get you all the way there, but great support and most of the time got rid of my symptoms 98% once I discovered it. SAM-E, which you can get at any drugstore, also gave me a swift and potent kick in the right direction (within hours) when I headed downhill. I still keep some in the cabinet and use it rarely, if I'm getting sick and feeling "off" - but only a couple of days and only in the morning, else it becomes way too activating for me. Proceed with caution. We've also had good results from IntraKid/IntraMax, not sure which is appropriate at 16. I don't know what it is in there that is so helpful, but it has worked wonders for all of the "background" stuff for our kids and I felt great on it, too, so it might help some. (Hasn't been enough for real acute infections, though.) All of these things are pretty expensive and not enough for a really bad episode, but they have helped us a lot while not on antibiotics.

 

Does your son have any acne at all? You can always do what I did when I was young, after getting diagnosed as a "one-off" PANDAS-before-it-had-a-name but before I could convince a shrink to keep me on antibiotics for any extended period of time. I went to a cosmetic dermatologist (pretty easy to get appts with those guys) and complained of acne (even though I never really had more than 1-2 zits per month) and said that I was extremely self-conscious and wanted antibiotics. I found it very easy to get at least a couple of months at a time going that way, and I was always able to convince them to get me up to the doses I wanted to be on. Hate to send you down a path of deception, but desperate times call for desperate measures. Like many here, I know a lot about desperate times.

 

If he is depressed about having such a condition, he might be at an age to benefit psychologically from reading some Kay Redfield Jamison, like "Touched with Fire." She writes about the connection between mental illness and creative genius, basically, and goes through a lot of biographical information about famous artists, authors, etc. who suffered. Quite academic reading, but I read it when it first came out in the early 90's, which was toward the end of my real battles, and I loved it -- it put things in perspective for me and made me see the special side of who I was, not just the "abnormal" side - the latter of which is easy to focus on when you're a teen and your life seems to be slipping right through your fingers. I firmly believe that PANDAS comes with many profound gifts as well as liabilities - and sooner or later, to a large extent, you outgrow the liabilities. I would look through it yourself, first, though, to make sure that he's in the right place to benefit from that sort of thing.

 

Most of all, hang in there! To me, the most important thing I did in my teens was just hang on for dear life. At that time, I didn't even know that it could ever get better, so it would have been easiest to have thrown in the towel. What a shame that would have been. The last couple of decades of my life have been pretty great all things considered.

 

Let me know if there is anything at all that I can do.

 

 

Hi all. I'm new to this group but no stranger to PANDAS. My son just turned 16 and is having the biggest backslide in 3 years. This is his 3rd major backslide. At age 8, it went completely undiagnosed, at 11 it took four months of searching his symptom cluster online until I found it, after which I could not get a doctor to buy into the theory (despite ridiculous titer levels and easily meeting diagnostic criteria) until I finally cross referenced the disorder and its prevalence in the Autism community. My son's not autistic though. From there I found a DAN! doc who was willing to think outside the box to a degree but by no means the PANDAS expert some of you are clearly aligned with. My son has never had a trial of abx therapy that lasted more than 2 wks. He was eventually given some relief with Fluconazole (antifungal) as we knew he had yeast issues also. He recovered eventually and we've had a wonderful year and a half with only occasional blips of ocd, panic and separation anxiety.

 

It's back, it's bad and he's 16. He knows how life was just a few weeks ago, he also knows how bad it gets and how long, historically, it lasts for him. Any advice on how to handle the emotional lability piece at 16?

 

momto2pandas, your post from 12/2 reminding us that many (some say most) go on to live happy lives despite lack of cutting edge treatment has saved me today. Thank you so very much.

 

I'm in East Tennessee. Any doc suggestions for the south? We need a steroid burst and abx yesterday.

 

Many thanks,

Gat's mom

 

momto2pandas,

 

You have done more for me than you realize. He doesn't think his life will get better, he is beginning to believe he's been singled out for a "horrible life". He doesn't want to fall behind at school and the anxiety of going is wearing him down to a shell. He beats himself up for being weak and feels the pain of it all so intensely (who wouldn't?). I can understand where he gets this thinking, particularly since he's feeling his emotions sooo powerfully during this backslide. At 8 and 11, he was only thinking about the now. At 16, he's wanting some assurances that he gets a good life like everyone else. I can now, honestly, tell him that I know of someone who had it and has grown up, on and away from it.

 

You're correct about the talents though. His the most intuitive human I know with a deep streak of understanding and compassion, neither of which have been returned to him in great depth by our school system. I will review the book but think it sounds fabulous.

 

These are the hardest days we've ever experienced (in all 3 episodes). I wondered today how in the world I'd get through it again and be optimistic, calm and focused for him. You were right on time, such a benefit to me. Thank you so very much.

 

Gat's mom

 

 

I remember that anxiety about keeping up at school intently. I had to drop out a few times during high school, just couldn't do it any more. It felt like giving up on my whole life. Fast forward a few years, and I was first in my class at Harvard, went on to get a PhD at Princeton and then on to a very successful career, marriage, etc. In my application to college, I used my essay to be totally straight up about what had happened to me in high school; I got in early admission. I was always straight up with my boyfriends about my condition; I don't think anyone ever held it against me. This is not leprosy, and not sociopathy. People get sick. They recover. They learn a lot about life in the process. He's allowed to get sick, and he's allowed to rest when he gets sick just like anyone else, and not strain about school. (I know that you know this - it's hard for teens to understand, though.) He will recover, and he'll catch up. If teachers are jerks about it - and I had some of those - well then, they're jerks. He'll leave them in the dust before he knows it. That has been an important life skill for me - giving myself permission to be sick when I'm sick, and not beat myself up over it. Easier said than done, I know.

 

Anything else I can do, let me know, truly.

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The last post of mine below sounded like a brag and I really didn't mean it that way. I just really, really wanted to get across that it's possible to go a LOOOONG way downhill with this condition at 16 and still rise pretty much all the way back up to your potential by the time "it counts" for your long-term future... and I forgot my modesty in my ardour. Sorry about that. I hope that it wasn't too off-putting.

 

Hi Gat's Mom,

 

So sorry to hear that you are going through this. I know well what it's like to be 16 and to have your mind pulled right out from under you like the proverbial rug. Obviously you need to find a good doctor, which you're working on. In the meantime, you might try a couple of things that you can do right away. For me, in the post-puberty times, the Omegabrite formulation of Omega-3 fatty acids was a lifesaver. Doesn't necessarily get you all the way there, but great support and most of the time got rid of my symptoms 98% once I discovered it. SAM-E, which you can get at any drugstore, also gave me a swift and potent kick in the right direction (within hours) when I headed downhill. I still keep some in the cabinet and use it rarely, if I'm getting sick and feeling "off" - but only a couple of days and only in the morning, else it becomes way too activating for me. Proceed with caution. We've also had good results from IntraKid/IntraMax, not sure which is appropriate at 16. I don't know what it is in there that is so helpful, but it has worked wonders for all of the "background" stuff for our kids and I felt great on it, too, so it might help some. (Hasn't been enough for real acute infections, though.) All of these things are pretty expensive and not enough for a really bad episode, but they have helped us a lot while not on antibiotics.

 

Does your son have any acne at all? You can always do what I did when I was young, after getting diagnosed as a "one-off" PANDAS-before-it-had-a-name but before I could convince a shrink to keep me on antibiotics for any extended period of time. I went to a cosmetic dermatologist (pretty easy to get appts with those guys) and complained of acne (even though I never really had more than 1-2 zits per month) and said that I was extremely self-conscious and wanted antibiotics. I found it very easy to get at least a couple of months at a time going that way, and I was always able to convince them to get me up to the doses I wanted to be on. Hate to send you down a path of deception, but desperate times call for desperate measures. Like many here, I know a lot about desperate times.

 

If he is depressed about having such a condition, he might be at an age to benefit psychologically from reading some Kay Redfield Jamison, like "Touched with Fire." She writes about the connection between mental illness and creative genius, basically, and goes through a lot of biographical information about famous artists, authors, etc. who suffered. Quite academic reading, but I read it when it first came out in the early 90's, which was toward the end of my real battles, and I loved it -- it put things in perspective for me and made me see the special side of who I was, not just the "abnormal" side - the latter of which is easy to focus on when you're a teen and your life seems to be slipping right through your fingers. I firmly believe that PANDAS comes with many profound gifts as well as liabilities - and sooner or later, to a large extent, you outgrow the liabilities. I would look through it yourself, first, though, to make sure that he's in the right place to benefit from that sort of thing.

 

Most of all, hang in there! To me, the most important thing I did in my teens was just hang on for dear life. At that time, I didn't even know that it could ever get better, so it would have been easiest to have thrown in the towel. What a shame that would have been. The last couple of decades of my life have been pretty great all things considered.

 

Let me know if there is anything at all that I can do.

 

 

Hi all. I'm new to this group but no stranger to PANDAS. My son just turned 16 and is having the biggest backslide in 3 years. This is his 3rd major backslide. At age 8, it went completely undiagnosed, at 11 it took four months of searching his symptom cluster online until I found it, after which I could not get a doctor to buy into the theory (despite ridiculous titer levels and easily meeting diagnostic criteria) until I finally cross referenced the disorder and its prevalence in the Autism community. My son's not autistic though. From there I found a DAN! doc who was willing to think outside the box to a degree but by no means the PANDAS expert some of you are clearly aligned with. My son has never had a trial of abx therapy that lasted more than 2 wks. He was eventually given some relief with Fluconazole (antifungal) as we knew he had yeast issues also. He recovered eventually and we've had a wonderful year and a half with only occasional blips of ocd, panic and separation anxiety.

 

It's back, it's bad and he's 16. He knows how life was just a few weeks ago, he also knows how bad it gets and how long, historically, it lasts for him. Any advice on how to handle the emotional lability piece at 16?

 

momto2pandas, your post from 12/2 reminding us that many (some say most) go on to live happy lives despite lack of cutting edge treatment has saved me today. Thank you so very much.

 

I'm in East Tennessee. Any doc suggestions for the south? We need a steroid burst and abx yesterday.

 

Many thanks,

Gat's mom

 

momto2pandas,

 

You have done more for me than you realize. He doesn't think his life will get better, he is beginning to believe he's been singled out for a "horrible life". He doesn't want to fall behind at school and the anxiety of going is wearing him down to a shell. He beats himself up for being weak and feels the pain of it all so intensely (who wouldn't?). I can understand where he gets this thinking, particularly since he's feeling his emotions sooo powerfully during this backslide. At 8 and 11, he was only thinking about the now. At 16, he's wanting some assurances that he gets a good life like everyone else. I can now, honestly, tell him that I know of someone who had it and has grown up, on and away from it.

 

You're correct about the talents though. His the most intuitive human I know with a deep streak of understanding and compassion, neither of which have been returned to him in great depth by our school system. I will review the book but think it sounds fabulous.

 

These are the hardest days we've ever experienced (in all 3 episodes). I wondered today how in the world I'd get through it again and be optimistic, calm and focused for him. You were right on time, such a benefit to me. Thank you so very much.

 

Gat's mom

 

 

I remember that anxiety about keeping up at school intently. I had to drop out a few times during high school, just couldn't do it any more. It felt like giving up on my whole life. Fast forward a few years, and I was first in my class at Harvard, went on to get a PhD at Princeton and then on to a very successful career, marriage, etc. In my application to college, I used my essay to be totally straight up about what had happened to me in high school; I got in early admission. I was always straight up with my boyfriends about my condition; I don't think anyone ever held it against me. This is not leprosy, and not sociopathy. People get sick. They recover. They learn a lot about life in the process. He's allowed to get sick, and he's allowed to rest when he gets sick just like anyone else, and not strain about school. (I know that you know this - it's hard for teens to understand, though.) He will recover, and he'll catch up. If teachers are jerks about it - and I had some of those - well then, they're jerks. He'll leave them in the dust before he knows it. That has been an important life skill for me - giving myself permission to be sick when I'm sick, and not beat myself up over it. Easier said than done, I know.

 

Anything else I can do, let me know, truly.

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In reference to acne and abs. EAMom did post once that Zithromax is great for acne and it is cited to have less side effcets than the traditional tetracycline dermatologists give. I can probably find the article if you want. Zith is a great choice for PANDAS. Anyway, I cannot take tetracycline. I took it for acne and had bad side effects. So, if you decide to go the dermatologist route, it may be benficial to add that he is sensitive to tetracycline. Say that he gets migraines and his vision began to blur. Ask for Zithromax.

 

If you want to ensure that the Zith scipt is a possibilty, call teh offcies ahead of time, tell them about the tetracylcline problem and confirm they will give Zith for the acne problem. Calling around can save you time and money.

 

I would still try to get the meds for an infection while doing the dermatologist route. For acne, they will probably give a lower dose than they would for something like hidden strep.

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Agree. I didn't mean to imply that going to the derm was a substitute for going a PANDAS-treatment route, just that it could be a stop-gap given how long it can take to get going with the PANDAS-treatment route.

 

In reference to acne and abs. EAMom did post once that Zithromax is great for acne and it is cited to have less side effcets than the traditional tetracycline dermatologists give. I can probably find the article if you want. Zith is a great choice for PANDAS. Anyway, I cannot take tetracycline. I took it for acne and had bad side effects. So, if you decide to go the dermatologist route, it may be benficial to add that he is sensitive to tetracycline. Say that he gets migraines and his vision began to blur. Ask for Zithromax.

 

If you want to ensure that the Zith scipt is a possibilty, call teh offcies ahead of time, tell them about the tetracylcline problem and confirm they will give Zith for the acne problem. Calling around can save you time and money.

 

I would still try to get the meds for an infection while doing the dermatologist route. For acne, they will probably give a lower dose than they would for something like hidden strep.

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Mom2pandas- Please, "brag" all you can. It gives us all hope for our kids. It also helps put school in perspective- the main thing is that they are healthy, when they are healthy- they will catch up and live up to their potential. This is easier to see from the outside, than when you are in the midst of an episode. I would like weekly reminders from you about how bad you were, and how great everything turned out in the end :lol:

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Mom2pandas- Please, "brag" all you can. It gives us all hope for our kids. It also helps put school in perspective- the main thing is that they are healthy, when they are healthy- they will catch up and live up to their potential. This is easier to see from the outside, than when you are in the midst of an episode. I would like weekly reminders from you about how bad you were, and how great everything turned out in the end :)

 

Agreed...it is life giving to me at this point. I told him about you this morning when he tried and failed to get to school again. I have searched back through three years of medical journals on him and we have never tried Azith at 500mg, only 250mg and then only in short doses and even that was when he was very deep in an episode. No steroids have ever been tried.

 

Dermatologist, if necessary.

My dentist who is a good friend and has watched me go through this with him for years, you bet.

My ex-bf who is a doc in another state, absolutely.

 

Whatever it takes. I've done the homework. I knew the answer three years ago and let others pull me away. I'm very thankful for what I've learned on the DAN! it has served us well. I strongly suspect a biofilm but even so we still need a robust trial of abx.

 

You've all been wonderful, a Godsend for certain.

Gat's mom

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