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Thirty years later, happened upon my diary from age 13, right when PAN


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I had the same experience with acne, though it wasn't what I would call horrible. You could basically get a good guage on my state of mind by looking at my skin. I have always figured that it was a combination of poor immune function (hence bacterial overgrowth), and excessive inflammatory function (cytokines) - because I wouldn't get just little whiteheads all over, I would get big "inflammatory nodules" (cystic acne). So the same excessive inflammatory cytokine reaction that was leading to breached BBB and associated symptoms was also leading to excessive inflammation in response to acne bacteria. Like Bronx, when I went on antibiotics, everything got better.

 

To this day, sometimes I see people with skin like I had and a certain look on their faces, and I think "PANDAS".

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I am absolutely certain that it was.

 

Or, some deep-rooted infected kept the acne going.

 

On the few occasions when I overcame my shame and went to a dermatologist for an abx prescription, I always felt immensely better. I thought it was just psychological relief at my appearance, but I know now it was much deeper.

 

Bronxmom (and momto2pandas), your descriptions of yourself just make me believe even stronger, that I, too, am currently suffering from pandas. I have had some waxing and waning intense emotional problems (the details of which would not even be appropriate to put on the forum) ever since my oldest son's first strep infection. All along, I have always believed that I was falling apart b/c HE was falling apart, or that it was PMS intensified by having a baby. However, that was 4 long years ago and I have seen patterns of my own behavior go up and down with the onset of strep in the house. Not to mention, this is not the first time in my life that I have had extreme levels of stress/crises, yet this is the first time that I completely lose control of my emotions and/or completely shut down! Also, my abrupt onset of symptoms along with diagnosed strep in the house has also happened during times of the month that I do not have PMS and can usually handle anything. I, too, seem to lose all anxiety/panic when I go on an antibiotic!

 

I'll never forget, sometime within the past few years my husband looked at me and said, "boy, you do NOT do well when you are sick!".

 

Thank you for posting this, the details of your diary. I would SOOOO love to read it myself if you ever publish it!!

 

By the way, my cousin as a teenager had abrupt onset anorexia which lasted about a year and then went away....hmmmm.....

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This is so IMPORTANT!

 

Survival -- i.e., caring for yourself, your kids, and your spouse -- must come first. But, if you could survive AND publish -- how wonderful!...

 

In my view, it's not your diaries alone and in their entirety, however, but what you might write about them now (including selected excerpts, of course!) that could be published, and could be really earth-shaking and ground-breaking. The larger meaning of the diaries can only be elucidated by looking back at them from your vantage point today. And you're the only one who can do this. I envision not the publication of a series of teen diaries, but the publication of an insightful adult memoir, incorporating the essence of those diaries and saying much more....

 

This is so fascinating -- and more evidence that post-infectious neuropsychiatric autoimmune disease is not new. A particular strain of bacteria might be new, or a particular disease outbreak, but the fundamental phenomenon has always been there (and likely on levels that quickly self-resolved, levels that led to asylums, and all kinds of levels in between). It just wasn't identified as PANDAS.

 

Tenacity

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Oh yes, it's always been there. In fact, my family's history is very interesting that way. Once we figured out that my condition was autoimmune and infection-triggered nearly 20 years ago, my father set about interviewing generations of his relatives (big Italian immigrant family) about their histories of infections, autoimmune conditions, and psychiatric disorders, and put it all into a big family tree. Very fascinating histories of dramatic suicides, murder, jail sentences, intermingled with autoimmune diagnoses, rheumatic fevers, loads of pneumonias and other chornic infections, obsessive "genius" success stories, relataives thought to have had special spiritual healing powers, etc...for generations.

 

Of course at this point, no-one in his family is speaking to anyone else; it's a very interesting picture but not a happy one :-).

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Oh yes, it's always been there. In fact, my family's history is very interesting that way. Once we figured out that my condition was autoimmune and infection-triggered nearly 20 years ago, my father set about interviewing generations of his relatives (big Italian immigrant family) about their histories of infections, autoimmune conditions, and psychiatric disorders, and put it all into a big family tree. Very fascinating histories of dramatic suicides, murder, jail sentences, intermingled with autoimmune diagnoses, rheumatic fevers, loads of pneumonias and other chornic infections, obsessive "genius" success stories, relataives thought to have had special spiritual healing powers, etc...for generations.

 

Of course at this point, no-one in his family is speaking to anyone else; it's a very interesting picture but not a happy one :-).

 

Interesting, there is a history of suicides on my mom's side. Of course not much is known about what illnesses people had (at least in my family) so long ago (and in the country). As my mom said, people got sick, but you didn't know what it was they were sick with. If there was rheumatic fever, it wouldn't have been diagnosed as such.

 

Now that I think of it, I think there was also a suicide on my dad's side (my father's mom's dad). That was a long time ago...before the turn of the century, in another country.

Edited by EAMom
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I believe that we had rheumatic fever diagnosed back to my grandmother's generation, and interestingly, my grandmother had been diagnosed with anorexia nervosa (among other things), but before that, as you said, it's all vague stories of sickness, craziness, etc - nothing that could be tied directly to PANDAS but all stuff that makes you say "hmmmmm".

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this would make a great, yet painful, book Momto2. Have you ever heard of the book "Devil in the Details"? I read it about 2 years before pandas. Just because it looked interesting. And funny (the author with severe OCD and hypochondria is HYSTERICAL - her parents gave her an amazing perspective on her illness). As funny as it was, I'm sure if I were to pick it up again I would cry all the way through. Its a quick read if you are interested.

 

I'm waiting for yours to come out!heck, maybe you should start a blog where each week you publish a couple pages of your diary and take readers through your story.

 

http://www.amazon.com/Devil-Details-Scenes-Obsessive-Girlhood/dp/0316158771

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I hope you do publish your story and include: diary, family history, current PANDAS knowledge, and insight... when you are able (as Tenacity said earlier).

 

Also, there are a lot of posts about Rheumatic Fever here. I had Rheumatic Fever when I was 6 years old. I remember it was early springtime. I spent a month in the hospital and missed 60 days of first grade. Oddly, I also had a huge problem with unexplained fits of screaming, crying, and rage during the summer after first grade. I remember feeling overwhelmed by it all and desperate for someone to help me. My parents first tried to "correct" my behavior by ignoring these "fits." Later, they resorted to beating me - sadly. They finally "broke" me of the rages but, unintentionally, they broke my spirit too.

 

I will never allow this to happen to my son with PANDAS.

 

Thanks to everyone who bravely posted their painful PANDAS memories on this thread.

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I hope you do publish your story and include: diary, family history, current PANDAS knowledge, and insight... when you are able (as Tenacity said earlier).

 

Also, there are a lot of posts about Rheumatic Fever here. I had Rheumatic Fever when I was 6 years old. I remember it was early springtime. I spent a month in the hospital and missed 60 days of first grade. Oddly, I also had a huge problem with unexplained fits of screaming, crying, and rage during the summer after first grade. I remember feeling overwhelmed by it all and desperate for someone to help me. My parents first tried to "correct" my behavior by ignoring these "fits." Later, they resorted to beating me - sadly. They finally "broke" me of the rages but, unintentionally, they broke my spirit too.

 

I will never allow this to happen to my son with PANDAS.

 

Thanks to everyone who bravely posted their painful PANDAS memories on this thread.

 

Oh how sad. I do wonder how many PANDAS kids end not only misdiagnosed, but also victims of child abuse...which then just compounds the PANDAS problems.

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you bring up a good point RNmom and EAMom - I bet there are ALOT of kids being abused. I'm even a little guilty - ds's presentation was not dramatic and sudden over night - and we just thought he was rushing throgh work, and not trying at school, and being disrespectful. I remeber erasing a bunch of his homework once and making him do it over because it was messy (we thought he wa rushing through and being careless). He melted down of course. AGGGGHH. I still feel horrible thinking about it.

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