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

[momto2pandas]

Not much point to this post, but I had to share it somewhere where somebody would get it, because I'm shell-shocked today. I kept a diary and journal of dreams, pretty religiously, from age 3.5 to age 40. As far as I knew, the many volumes of my diaries were all in sealed rubber tubs in the basement. I've never read them, but I figured I'd go back and read them some time late in my life.

 

But then today, I was looking for something in my office closet, and I found a volume down on the floor. I picked it up and recognized the dates as right around the time that anorexia nervosa, OCD, anxiety, and a bunch of other problems that I hadn't even remembered, suddenly hijacked my life. So I opened it up.

 

I can't believe how painful it was to read, and I couldn't even get through the bad parts. Of course I've always remembered the facts of the anorexia, the obsessiveness, the compulsions, etc... but I was not prepared to read my own completely unguarded descriptions of the excruciating isolation, the utter hopelessness of waking up every morning only to slave more to compulsion, the unrelenting fatigue ("fatigue" doesn't seem a strong enough word, it was more like continuous verge of collapse), the torturous sensory issues that I had all but forgotten about (I had completely forgotten about the need-to-pee issues), the brain fog that made homework that was usally easy impossible, the challenge of trying to explain to a teacher that I just wasn't capable today for some reason...and then the humiliation of getting a lecture about my attitude or some such in response...the yearning for even a bit of being "normal", the sheer pain. It was more jarring than I ever thought it would be to read.

 

And sure enough, right there in black and white, was a description of being sick right before it started. I had written frequently for a while about normal young teen stuff, crushes and cliques and stuff (that part was hard enough to read ), then in the middle of it all was a paragraph about how I must be getting terrible allergies or something because I felt like absolute $hi# physically and in my sinuses...but it was December, not a big allergy month in NJ. Then a month went by with no entries, and then I reappeared with completely different handwriting, and a different life. My handwriting changed oddly throughout the volume, and there are margin issues that I know other people have mentioned in their kids. Once I saw that I remembered the feeling of struggling with margins.

 

I just can't believe that was me. I can't believe that I was able to hang on through those years. It makes me fear deeply again for my children, though they're still doing really great - 100% - at this point.

 

Amazing that eventually, it did all just go away...the girl writing that volume had absolutely no idea that a few volumes later her story would become a happy one. That's perhaps the saddest part. The complete inability to comprehend that it will pass, or to imagine what the "after" might look like.

 

Like I said, not much point to this post except that I'm horrified and needed to write something down. Thanks for listening. And for understanding.

[RNmom]

I could barely breath while reading this. You are golden to share this with the forum. This is a priceless description from the inside out of PANDAS. Priceless. It validates what we see in our children. It stands as proof, to me, that this illness is real and has been ignored for way too long. How incredibly sad that you had to go through all of that alone. And, how amazing that you survived - even thrived. How did it just all go away? I have so much respect for your story.

[wornoutmom]

Wow. Your post just made me cry. Thank you so much for sharing. What I got out of it is that it is possible for a teen to survive this kind of pain, and come out ok as an adult. An amazing adult. I needed this kind of hope today.

[EAMom]

Wow...it seems like this is something a PANDAS researcher (but who?) would want to see. I mean the emotional stuff, the things going on in your head, but also the handwriting and margin issues.

[NancyD]

I wanted to hear more! What a treasure. You should really consider writing a book. You have so much insight and a great story to tell.

[EAMom]

I agree!

[saidie10]

This was hard to read, I can only imagine how tough reading those entries must have been for you . I think it must be ok to let yourself go back there though...to know that there is healing and hope for your children! Stay the tough, fighter mom you are and I agree about writing that book! You do have a story to tell...!

[Fixit]

I agree too...

And want to thank you for sharing this with us TODAY!!!

[kimballot]

Mom to 2 - First and foremost - thank you for sharing this with us. I do hope you are planning to publish these works, along with information about PANDAS. You are the person to do this. What a treasure trove of information you have. First hand accounts that can be interpreted in today's light. Others have written or spoken about what it is like to be the parent of a child with PANDAS, but you can tell us what it is like to be that person - looking back with an educated adult perspective.

[cory2605]

I'm so glad you posted what you did. Thank you for helping me make the connection between what happened to me and what is now happening to my son. I think now some of the other parents will realize that what they also suffered as children was most likely what is now termed 'Pandas'. I have been thinking about how my son's problems started after his flu shot and the problems that I started having at about the same age after the flu shot as well; (I am an older mom, 51). It was soon afterwards the fears, obsessions, anxiety, etc. began. I also suffered anorexia nervosa for many years and panic attacks and up until 9 years ago, alcoholism. I always attributed it to my personality and I was just born that way. Funny though, my parents had none of these conditions. Did they have vaccinations and the types of strep, etc. we had and have? Anyway, in the back of my mind I have been feeling guilty about my son because there is a part of me that thinks he inherited this from me. Thank you for giving me the courage to say this and I plan on telling Dr. Murphy this tomorrow.

 

Trish

[momto2pandas]

Thank you, everyone, for your kind comments.

 

Re. question about how it went away, I don't know for sure since the idea that it could have been infection-triggered was totally foreign in the early 80's, but the recovery happened over a very short period of time during my (antibiotic) treatment for tuberculosis, so I assume it had to do with that. Yes, 4 years into that terrible episode, 2 years of which were spent in hospitals, someone finally figured out that I had TB, and I spent 2 years on antibiotics after that.

 

That's not to say that I never had any issues after that, but nothing like that severe again. I had some stuff in my early 20's, but life went on during that stuff - and then by mid-late 20's episodes got milder and briefer until they eventually became pretty negligible. I was also diagnosed in my 20's (not with PANDAS per se, not named yet, but with "infection-triggered psychiatric disorder"), so I think that helped.

 

Cory, did your parents have rheumatic fever? That seems to have been a more common strep issue in that generation. My Dad, uncle, and aunt all had it. My father-in-law had it, too.

 

It has been suggested to me before that I consider publishing something based on my diaries, just because it's kind of an unusual thing for anyone to keep 37 years of pretty detailed first-hand accounts of their lives starting so early, and now that PANDAS is known, it's even more interesting. But the truth is that most of the reading is dreadfully boring. It's tiresome enough to read about the crushes on boys that came and went, the jockeying for social position, etc., before I got sick, but it becomes an awful read once you get to the OCD parts - just redundant pain, gazillions of obsessive machinations, more pain, more machinations, more promises to myself to try harder tomorrow, etc. (That was heartbraking - how damn HARD I was trying to get better and to find answers, how diligently I tried working with therapists even though their theories struck no chords, how I read the Bible from cover to cover hoping to find answers, how I kept trying every day to muster more will-power, how, in that era of "tough-love" for teens, I was charged with 100% personal responsibility for my actions...when the answer, creepily, was right there on page whatever with the illness that precipitated the whole thing.) One thing I have to say is that the disease didn't seem to interfere with my writing, at least during this volume (in later years I think it did). The writing itself is surprisingly good; it's the content that's so tiresome.

 

There are parts that are really interesting to me (but probably not others) - like the dreams. For example, right before I got sick I described a dream that I would only do 2 years of high school, and that in order to graduate, I would have to hunt down a particular bug and kill it...and then I could move on with my life. And in my dream, I hunted a long time through labyrinthine hallways to find that bug (it was like a flea), and then I did get it and kill it and was allowed to graduate and go to college. And oddly, that's kind of what happened - I did only do 2 years of high school (in hospital for the other 2), and I did graduate, but in order to move on with my life after that, the "bug" that had been infecting my body had to be "found" and "killed". How creepy is it to have had that dream right before I got sick...

 

In any case, I don't know if I could ever share any of it. I mentioned to my husband that I had found it and was having a hard time after reading a bit, and he mentioned lightly that it would be really interesting reading for him. I practically froze in my boots. It was a very long time ago, it is all very long past, but that was still me, those dark innards exposed in there were mine, that was my ######, my demons. I can barely look at it myself.

 

I wasn't looking for that thing this morning, just found it by accident, but now I feel kind of stuck trying to figure out whether it's healthy for me to read the whole thing and maybe even before/after volumes, or not. I think that ultimately, it would be healthy for me to go back there and come to terms with it, to read and understand the whole story and to accept the tragedy of the understanding being only retrospective, but I need to be better prepared for it than I was, standing there in my closet looking for gift-wrap.

[peglem]

I think, since that book has been there for many years, that it was no accident you found it. I think there must be a reason why it turned up now. (maybe to help Allie w/ your rifampin info)

[bronxmom2]

Wow, amazing.

 

I also was constantly sick, starting with pneumonia as an infant, CONSTANT throat infections, then a terrible case of mono and finally the mumps at age 17, which no one through was strange even though I'd been vaccinated...

 

By the age of 14 I developed a problem where I had a constant, third person narration in my head describing my own thoughts and actions and I was plagued by irrational feelings of guilt. I was constantly sick, and my older sister always accused me of faking (for my mother's attention), which due to the guilty feelings I believed. I started to secretly write a novel in a notebook which, if I found ever found it, would no doubt be as heartbreaking as your journal. Anyway I somehow managed to turn my constant emotional pain into the belief that I was born to write, got a full scholarship to college and moved to NYC. I believed that NYC would save me from despair, but of course, instead, I REALLY fell apart. In less than a year, I was in Bellevue because I was fixated on suicide. I also had a number of compulsions at this time of which I was deeply ashamed, such as peeling almost all the skin off my feet and picking at my face. I had terrible acne. I was living in a state of deep and constant shame, tormented by guilt, unable to shake fantasies of suicide, and convinced I was faking the whole thing.

 

I am so, so sad for this person. It is so strange to mourn for yourself in this way. I was by all accounts an unusually bright, imaginative child, full of promise. And while I am grateful to finally understand what happened to me, and proud of the fact that I managed to pull some art from all my anguish, I hope that none of our children have to go through this.

 

ps-- no psychiatric medication or therapy ever helped me in the slightest. There is only one thing that ever helped me: marijuana. (I know there are some people on this board who have considered using medical marijuana for their children's OCD...)

[EAMom]

I had terrible acne.

 

I wonder if the acne was keeping your PANDAS (pitands) going strong at the time?

[bronxmom2]

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.