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"Remission"


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A friend and I were talking about my son's progress last night and I was sharing with her that there is finally at least a light at the end of the tunnel. We both laughed however, at the fact that it's probably not really the end of the tunnel, just a valley in the mountain range and it's just a matter of time before we hit the next "strep mountain"

 

My friend has unfortuantely dealt with far more than her share of cancer in her life and family, so I thought it was a poingant connection when she equated my son's recovery with "remission".

 

The road to recovery for a PANDAS child is similar to that of a cancer survivor (although - not as lifethreatening). This "disease" takes over every facet of your child's and faimly's everyday life, and you fight long and hard until they get better. Every parent becomes an expert on their child's condition, reading medical charts and test results better than some dr's and nurses. But, once they come out of the storm, you still live every day in fear that it will return. Every cough, sneeze, hiccup and you immediately start looking for signs and symptoms.

 

This may not be new to any of you, but personally, I like the word. I think it sums up what we all think and fear even when our kids are "healthy".

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A friend and I were talking about my son's progress last night and I was sharing with her that there is finally at least a light at the end of the tunnel. We both laughed however, at the fact that it's probably not really the end of the tunnel, just a valley in the mountain range and it's just a matter of time before we hit the next "strep mountain"

 

My friend has unfortuantely dealt with far more than her share of cancer in her life and family, so I thought it was a poingant connection when she equated my son's recovery with "remission".

 

The road to recovery for a PANDAS child is similar to that of a cancer survivor (although - not as lifethreatening). This "disease" takes over every facet of your child's and faimly's everyday life, and you fight long and hard until they get better. Every parent becomes an expert on their child's condition, reading medical charts and test results better than some dr's and nurses. But, once they come out of the storm, you still live every day in fear that it will return. Every cough, sneeze, hiccup and you immediately start looking for signs and symptoms.

 

This may not be new to any of you, but personally, I like the word. I think it sums up what we all think and fear even when our kids are "healthy".

 

A branch of my work is off in the fringe of the oncology world so the word remission is part of my vocational jargin. It has long been the word I use to describe the good times when my son is better. Regarding that PTSD fear that we parents possess, I used to believe for a long time that it was just me. I actually beat myself up for not being so strong in the aftermath that I'd be unaffected when the occasional small symptom would pop up out of nowhere. When he recovers this time, I will take a less passive approach to my own PTSD and look for some therapies to implement to add to my own QOL. It's really a good thing that you posted as these are issues that really need to be addressed and become huge without a strong support net beneath you. PANDAS/PITAND does not, at this point in time, tend to attract a big support net from docs/schools/friends/families etc. All the more reason to search out ways to stay grounded through this storm.

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I think that the PTSD burden is one of the bigger ones that we/our kids bear. In some ways, it's just as bad to spend a lifetime worrying as it is to go through an episode. Over time, though, I guess you worry less.

 

Well before I had kids, I thought about the PTSD aspect from my own point of view. Having had anorexia nervosa that came on out of nowhere literally overnight, drove me down to a 40% weight loss in a matter of a few months, socked me in hospitals for two years with what I was told was mortal physical damage and little chance of getting out alive, and then disappeared again overnight such that I gained the weight back again within a couple of months and returned to health - was bizarre, to say the least. Even shortly afterwards, I could not relate to that anorexic girl whatsoever - I felt like I had been possessed. Although the anorexia itself completely ceased, the PTSD aspect of having basically been kidnapped and held at knifepoint for years stayed with me for a long time, and I really never got support for that. Everyone congratulated me on having gotten better, as if it was something that I had done out of my sheer will. The psychological support I got missed the point all along - it assumed that anorexia nervosa was something that I was doing and that healing weight-wise signified that the psychological issues were past, rather than assuming that it had been something that had happened to me and that the psychological issues/shock were in some ways just beginning.

 

That "PTSD", while not marked by some of the usual features like flashbacks, etc., had a big influence on my life for a long time. In my late teens and early 20's, I felt that the "extra time" I had gotten by surprisingly getting better was sort of a random lottery winning and that there was no guarantee of any future for me, and so I was VERY reckless with my life - even compared to others that age. If I had no control anyway over whether I lived or died, functioned or didn't function, etc., then why not go for broke and test fate? I'm lucky I lived through THAT. If my kids ever do what I did, I pray that I will never know about it.... Once I settled down a bit in my mid-20's, I always had a low-level paranoia about my future, assuming on some level that a time would come when I would be hit again and wouldn't be able to work, cope, function...so I worked very hard and long hours, scrimped and sacrificed and saved my pennies to ensure that when I got to that point, I was able to get medical care and take time off without becoming basically homeless, if I couldn't work. That put me in a nice career and financial position eventually given that I never did become disabled again (at least not yet!), but it's kind of sad way to spend one's youth -- always preparing for disaster rather than looking to the future in a more balanced, normal, positive way. If it weren't for the experiences I had had as a teenager, I would have had every reason to expect a very bright future that I had some control over.

 

Nevertheless, that's reality, at least it was for my generation. Hopefully it's not reality for our children. Now I feel pretty much out of the woods myself, but I still feel like I need to prepare, save, etc. for whatever might befall my kids...hoping and praying all along the way that we are on the brink of established better solutions for them than I had, so that they/I don't need to live in fear. It's hard for me to even think about what my life would have been, or could be, like without the burden of worry about the worst case. I think it is very much like cancer in that way.

 

 

A friend and I were talking about my son's progress last night and I was sharing with her that there is finally at least a light at the end of the tunnel. We both laughed however, at the fact that it's probably not really the end of the tunnel, just a valley in the mountain range and it's just a matter of time before we hit the next "strep mountain"

 

My friend has unfortuantely dealt with far more than her share of cancer in her life and family, so I thought it was a poingant connection when she equated my son's recovery with "remission".

 

The road to recovery for a PANDAS child is similar to that of a cancer survivor (although - not as lifethreatening). This "disease" takes over every facet of your child's and faimly's everyday life, and you fight long and hard until they get better. Every parent becomes an expert on their child's condition, reading medical charts and test results better than some dr's and nurses. But, once they come out of the storm, you still live every day in fear that it will return. Every cough, sneeze, hiccup and you immediately start looking for signs and symptoms.

 

This may not be new to any of you, but personally, I like the word. I think it sums up what we all think and fear even when our kids are "healthy".

 

A branch of my work is off in the fringe of the oncology world so the word remission is part of my vocational jargin. It has long been the word I use to describe the good times when my son is better. Regarding that PTSD fear that we parents possess, I used to believe for a long time that it was just me. I actually beat myself up for not being so strong in the aftermath that I'd be unaffected when the occasional small symptom would pop up out of nowhere. When he recovers this time, I will take a less passive approach to my own PTSD and look for some therapies to implement to add to my own QOL. It's really a good thing that you posted as these are issues that really need to be addressed and become huge without a strong support net beneath you. PANDAS/PITAND does not, at this point in time, tend to attract a big support net from docs/schools/friends/families etc. All the more reason to search out ways to stay grounded through this storm.

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Mom2pandas-

 

Thanks for that!

 

I am thinking about this a lot these days.

 

I have a pandas dd, age 6, who, I think really doesn't know what happened. I think she kind of internalizes what happened, as that is just her personality.

 

My pandas dd, age 9, I think, has more of the feeling of her life being hijacked, thinking life is not fair, but at the same time, I don't really know if she remembers what she was like before (she has had some form of this for a year now- that is a long time for a 9 yr old).

 

I try to continuously remind them of who they are, and that they are not their illness.

 

I would like them to learn positive things; compassion for others, putting their health first, not taking life for granted, etc BUT I would not like them to learn negative things, or learn anything from the pandas symptoms themselves (if that makes sense to you).

 

How much do we tell our kids? How do we minimize their PTSD?

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I think that the PTSD burden is one of the bigger ones that we/our kids bear. In some ways, it's just as bad to spend a lifetime worrying as it is to go through an episode. Over time, though, I guess you worry less.

 

Well before I had kids, I thought about the PTSD aspect from my own point of view. Having had anorexia nervosa that came on out of nowhere literally overnight, drove me down to a 40% weight loss in a matter of a few months, socked me in hospitals for two years with what I was told was mortal physical damage and little chance of getting out alive, and then disappeared again overnight such that I gained the weight back again within a couple of months and returned to health - was bizarre, to say the least. Even shortly afterwards, I could not relate to that anorexic girl whatsoever - I felt like I had been possessed. Although the anorexia itself completely ceased, the PTSD aspect of having basically been kidnapped and held at knifepoint for years stayed with me for a long time, and I really never got support for that. Everyone congratulated me on having gotten better, as if it was something that I had done out of my sheer will. The psychological support I got missed the point all along - it assumed that anorexia nervosa was something that I was doing and that healing weight-wise signified that the psychological issues were past, rather than assuming that it had been something that had happened to me and that the psychological issues/shock were in some ways just beginning.

 

That "PTSD", while not marked by some of the usual features like flashbacks, etc., had a big influence on my life for a long time. In my late teens and early 20's, I felt that the "extra time" I had gotten by surprisingly getting better was sort of a random lottery winning and that there was no guarantee of any future for me, and so I was VERY reckless with my life - even compared to others that age. If I had no control anyway over whether I lived or died, functioned or didn't function, etc., then why not go for broke and test fate? I'm lucky I lived through THAT. If my kids ever do what I did, I pray that I will never know about it.... Once I settled down a bit in my mid-20's, I always had a low-level paranoia about my future, assuming on some level that a time would come when I would be hit again and wouldn't be able to work, cope, function...so I worked very hard and long hours, scrimped and sacrificed and saved my pennies to ensure that when I got to that point, I was able to get medical care and take time off without becoming basically homeless, if I couldn't work. That put me in a nice career and financial position eventually given that I never did become disabled again (at least not yet!), but it's kind of sad way to spend one's youth -- always preparing for disaster rather than looking to the future in a more balanced, normal, positive way. If it weren't for the experiences I had had as a teenager, I would have had every reason to expect a very bright future that I had some control over.

 

Nevertheless, that's reality, at least it was for my generation. Hopefully it's not reality for our children. Now I feel pretty much out of the woods myself, but I still feel like I need to prepare, save, etc. for whatever might befall my kids...hoping and praying all along the way that we are on the brink of established better solutions for them than I had, so that they/I don't need to live in fear. It's hard for me to even think about what my life would have been, or could be, like without the burden of worry about the worst case. I think it is very much like cancer in that way.

 

 

A friend and I were talking about my son's progress last night and I was sharing with her that there is finally at least a light at the end of the tunnel. We both laughed however, at the fact that it's probably not really the end of the tunnel, just a valley in the mountain range and it's just a matter of time before we hit the next "strep mountain"

 

My friend has unfortuantely dealt with far more than her share of cancer in her life and family, so I thought it was a poingant connection when she equated my son's recovery with "remission".

 

The road to recovery for a PANDAS child is similar to that of a cancer survivor (although - not as lifethreatening). This "disease" takes over every facet of your child's and faimly's everyday life, and you fight long and hard until they get better. Every parent becomes an expert on their child's condition, reading medical charts and test results better than some dr's and nurses. But, once they come out of the storm, you still live every day in fear that it will return. Every cough, sneeze, hiccup and you immediately start looking for signs and symptoms.

 

This may not be new to any of you, but personally, I like the word. I think it sums up what we all think and fear even when our kids are "healthy".

 

A branch of my work is off in the fringe of the oncology world so the word remission is part of my vocational jargin. It has long been the word I use to describe the good times when my son is better. Regarding that PTSD fear that we parents possess, I used to believe for a long time that it was just me. I actually beat myself up for not being so strong in the aftermath that I'd be unaffected when the occasional small symptom would pop up out of nowhere. When he recovers this time, I will take a less passive approach to my own PTSD and look for some therapies to implement to add to my own QOL. It's really a good thing that you posted as these are issues that really need to be addressed and become huge without a strong support net beneath you. PANDAS/PITAND does not, at this point in time, tend to attract a big support net from docs/schools/friends/families etc. All the more reason to search out ways to stay grounded through this storm.

 

Momto2pandas,

 

I KNEW you would have something insightful to say on this subject. You definitely bring an element of experience to this that most of us lack. I am so thankful everyday that my ds16 talks about his future in casual ways that show me he doesn't live in the fear of recurrence that I do. Everytime he says something like, "I want to live in NYC someday" or "When I have kids, I'm going to have them involved in sports right from the start." He says them with ease and without dissecting to make sure they are legitimate and able to be achieved by him. What was life like for your parents and I've been wanting to ask you for so long, did they recover and go on to live happy lives?

 

Thanks for all you contribute!

Gayle

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I use the word remission too. If they are still confused, I bring out the peanut allergy analogy. Instead of a peanut...it's strep. Instead of not being able to breathe, their mind, reasoning and ability to function correctly slips away.

 

I know for most of our kids, this disorder isn't as "life or death" as some diseases. I say some because if your child was one of the ones that threatens to do harm to themself or has wished to just go to heaven, then it is "life or death" in that parent's eye. I do say that they may not be physically dying but they are mentally dying and it peeves me that some in the med community deem that to be okay.

Edited by Vickie
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I also have been using these terms for years (to the non pandas community - people who don't know about Pandas or understand it) - I state that my son is in "recovery" - pandas is in remission - although Dr. K - again believes he is "cured" - I also compare Pandas to that of a brain injury someone might receive in a car accident - how their personalities change.

 

AFter IVIG - its like coming out of a coma - things are MUCH better then it takes a while for everything to get back to normal.

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My son's doctor compared it to a parent who had treated their child for leukemia..with every "bruise" their hearts stop beating and they relive the fear of the disease...only time will heal this. My son who is 99% now and started hopping on only the yellow squares in the store the other day. My heart skipped a beat and then I tried to reaasure myself he was only eight and this is normal. I think time will heal but it will take a while. As I have seen him return to baseline though now with PEX, steroids, and IVIG I still do not feel I really know the enemy but I know what works to help cure.

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My dd16's first PANDAS episode happened when she was 10, and we didn't know it was PANDAS. It was as though she was possessed, although we didn't really believe that literally. I discovered then that I actually had PTSD; something I never knew because it had never been triggered so dramatically.

 

When I was about 6 or 7 my mother had a psychotic episode that landed her in a mental hospital. It was diagnosed as schizophrenia, although that was a good 40 years ago, and I think just about everything looked schizo to the medical world back then. She doesn't have it now, nor has she for over 30 years. In any case, I was, as they say, "scarred for life," by this experience. Although, I never knew that I had developed PTSD from it.

 

When dd started cycling in and out of "loopy land" as I called it, I started freaking out to the point of disfunction, and I ended up eventually talking to a very nice therapist for more than a year after dd went into what we now call "remission." That therapist explained about PTSD, and a little bit about how it works in mysterious ways. I began to see the patterns and triggers, and I learned to diffuse the energy most of the time when dd would start exacerbating over the years.

 

Now that dd is into her second huge PANDAS attack in the past year, I've started back with a new therapist to help with this new level of stress. One of the techniques she uses for my PTSD is "EMDR" (Eye Movement Desensitization and Reprocessing), which is one of the most studied and proven techniques known to science. It really really really really works. I highly recommend finding a trained, certified, and experienced practitioner near you. It really does work.

 

Every time she gets "loopy" or mis-behaves, I'm so much more calm, centered, and in control as an adult. Sometimes I find myself getting hooked, but I'm usually able to catch it and diffuse it before I make things worse for her and me.

 

When dd had her 1 month of Prednisone this past winter, it was like a switch flipped on and we had her back, even better than before. That was a great remission for her, and for us. I also like to think of it in terms of "Re-missioning" our lives. When she's better, even for a short time, we can re-purpose our days to take advantage of the clear time and make the most of it.

 

Those are my thoughts and experiences with PTSD and Remission.

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I agree with you 100%.

 

I was diagnosed in 2000 with PANDAS. I was better and living life normally after being on antibiotics and anti anxiety meds by 2001 and was thriving till 2005 (I stopped antibiotics in 2002). In late 2005/2006 I became really really depressed which i believe to have been a relapse of the PANDAS. I was in bed all the time and I slept non stop, my anxiety wasn't terrible though. Then I was better, but I don't think I ever felt as good as I did in 2002-2004. In 2007 I got pregnant and had a beautiful baby girl, after she was born my hormones went into overdrive and I was a complete mess. I recently have been feeling worse and worse with my anxiety and have been seeing a Dr and been on Clydamicin. I feel better when I am on the antibiotics but I can't be on them forever, I feel like relapse is definitely possible and may happen to many PANDAS suffers years after the original onset, keep pursuing your Dr's even after you or your child feels better, I wish I had.

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My dd16's first PANDAS episode happened when she was 10, and we didn't know it was PANDAS. It was as though she was possessed, although we didn't really believe that literally. I discovered then that I actually had PTSD; something I never knew because it had never been triggered so dramatically.

 

When I was about 6 or 7 my mother had a psychotic episode that landed her in a mental hospital. It was diagnosed as schizophrenia, although that was a good 40 years ago, and I think just about everything looked schizo to the medical world back then. She doesn't have it now, nor has she for over 30 years. In any case, I was, as they say, "scarred for life," by this experience. Although, I never knew that I had developed PTSD from it.

 

When dd started cycling in and out of "loopy land" as I called it, I started freaking out to the point of disfunction, and I ended up eventually talking to a very nice therapist for more than a year after dd went into what we now call "remission." That therapist explained about PTSD, and a little bit about how it works in mysterious ways. I began to see the patterns and triggers, and I learned to diffuse the energy most of the time when dd would start exacerbating over the years.

 

Now that dd is into her second huge PANDAS attack in the past year, I've started back with a new therapist to help with this new level of stress. One of the techniques she uses for my PTSD is "EMDR" (Eye Movement Desensitization and Reprocessing), which is one of the most studied and proven techniques known to science. It really really really really works. I highly recommend finding a trained, certified, and experienced practitioner near you. It really does work.

 

Every time she gets "loopy" or mis-behaves, I'm so much more calm, centered, and in control as an adult. Sometimes I find myself getting hooked, but I'm usually able to catch it and diffuse it before I make things worse for her and me.

 

When dd had her 1 month of Prednisone this past winter, it was like a switch flipped on and we had her back, even better than before. That was a great remission for her, and for us. I also like to think of it in terms of "Re-missioning" our lives. When she's better, even for a short time, we can re-purpose our days to take advantage of the clear time and make the most of it.

 

Those are my thoughts and experiences with PTSD and Remission.

 

 

A BIG Ditto on the EMDR. It is the one thing that has been very effective helping our PANDAS son process and get "unstuck" on very emotional experiences. E.g., returning to school after being in the hospital, stuck on being scared & angry .about a situation. When used on kids, a therapist needs special training. Oh, and other bilateral stimulation besides eye mvt . is often used with kids. Tapping, buzzies, auditory. It has been the fastest, most efficient method to help him "move on". It sounds really hokey. It is not.

 

Dawn

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