Prepping for consultation with new doctor.. . ...

[EmersonAilidh]

Made this to keep track of what to mention on the eighteenth. It's quite lengthy, but I wanted to make sure that I covered all of my bases. Feedback would be greatly appreciated. I've never done this before. At first I was trying to keep it professional sounding, but I eventually decided that it was okay to be more personal since I want to get across just how badly I need help.

 

 

Suspected age of onset - About four. 1999.

I've had one specific minor motor tic since I was at least four, but no one can recall when it really began. After saying something

I would repeat it without sound, just mouthing it out, immediately after I said it. No one can remember if this was before or after

a ranula removal procedure that I received that same year. I was completely unaware that I was doing it until my tics exploded in

2006 & my Mom pointed it out to me. I've had compulsions & anxiety problems for as long as I can remember.

 

Suspected age went chronic - About ten/eleven. Late 2006.

In the sixth grade I woke up with explosive motor & vocal tics. Screaming, flailing, you name it. Saw Dr. Ryals within the week of

their emergence, who said he suspected it to be Tourette's & started me on what would turn out to be an arsenal of medications that

did absolutely nothing but make me feel like a zombie. I honestly cannot recall all of the pharmaceuticals that I've been taken, but

I can try my best to remember if need be. After about a year or so of being bogged down by pills I weaned off of all of them to

find that my tics had subsided almost completely. At the time I chalked this up to the medication's success. It was a therapist

named Dr. Walker-Waitt in early 2008 that told me that I was the posterchild for P.A.N.D.A.S. when I mentioned how much school I

missed from asymptomatic strep. I've only EVER had two negative strep cultures, & both have been in the past twelve months. I only

know that I'm infected when those around me start getting sick. The positive tests have always been high in GABHs, specifically.

The one thing that always struck me as different from P.A.N.D.A.S. cases was that I could see a downturn in the rare instance when

I actually knew that I was infected, but when the infection was gone I did get a bit better, but never completely. I am ALWAYS

anxious, ALWAYS compulsive, & ALWAYS tired, regardless of infections or stress, although all of my symptoms get noticeably

worse with both.

 

Things to discuss:

 

Nonspecific gastrointestinal pains - I've never been stabbed but I seriously imagine that this is what it feels like. The pains can last for

a few minutes to about an hour (although they dull over time if it's longer) & they're unbearable & debilitating. Can hardly move

during them. Used to be about 1-3 times a day. More often than not it was about an hour or so after I ate but they were sometimes

random. Started a gluten-free diet on June 16th which initially eliminated all pain but eventually lowered it to only a few times a

week. Haven't vomited a single time since I stopped eating meat about six years ago, but all of my stools are abnormal. It is very

rare that I get anything other than constipation OR diarrhea.

 

Narcoleptic symptoms - First time I can remember mentioning what might have been early Narcoleptic symptoms was in 2007 when I confided in

my therapist at the time that often when I was doing homework, reading, or doing anything else that involved sitting/laying down,

I would look over at the clock & find that, without exaggeration, hours had passed without me noticing at all. In March of 2009

I had my only full on Cataplectic episode where I passed out on my desk in English class. We had a sub who failed to notice so I

remained passed out for about an hour & a half before some students shook me awake. This was also my first experience with sleep

paralysis, depersonalization, & hypnagogic hallucinations, all of which I have only dealt with a few times since. In June of 2009,

after some major family issues, it was like flipping a switch. My insomnia that at times had kept me up for days for about three

years gave way & I couldn't NOT sleep for twelve hours a night. & when I woke up, I could still nap two or three times a day. This

only worsened when I started high school that August & had to begin waking up at 5:30 AM. I slept through every one of my classes.

It was out of my control. I would try to write but I physically couldn't keep my eyes open. So I tried to write with my eyes closed

only to find that when I opened them what I had written was either complete scribbles or something entirely different than what I

had been trying to write. In one class in particular that I had every other day from 8:45-10:30, the class I had the other day

during this time required little writing, holding my pencil was almost impossible. I would be writing & my head would suddenly droop

(sometimes to the point where it would smack my desk) & I would just drop my pencil. It would happen over & over & over. It felt

like I would just fall asleep for a few seconds at a time. When I did completely fall asleep it wasn't so much just flatout passing

out as it was just... Drifting. Without even trying. I only know that I've fallen asleep when I wake up. My Dad has Narcolepsy &

mixed Sleep Apnea. This is by far my worst symptom. I used to be out with friends all the time. I was so social. But ever since this

has come along I never want to do anything just because I am SO tired. & my friends rarely want to do anything with me because they

know that all I'm going to want to do is sleep, & even if I don't actually lay down & try to sleep that I'll just fall asleep

if I sit down for too long. Some days are better than others though, & these past two weeks haven't been THAT bad,

comparatively speaking.

 

Headaches - After a full night of sleep (which is normally ten-twelve hours if left undisturbed), I more often than not wake up with a

headache that can only be described as disorienting. If I keep my head on my pillow, I can HEAR my head throbbing more than I can

feel it. It almost sounds like it's throbbing enough to make a sound against the fabric. Tylenol, Advil, etc.. Do absolutely

nothing. It can last less than an hour or all day & I can feel it all in my head, not just in one specific spot.

 

Tics - My tics are honestly probably the least of my complaints. At one point they were horrible, but they have all but subsided now. My

very first tic, mouthing, still comes up occasionally, although I can't say how often because it's the only tic where I am STILL

totally unaware when I'm doing it. Besides that I just have a few in my hands, specifically my fingers, & toes. If I do have a vocal

tic, which is the rarest of all, it's just a little bark. No more screaming or shouting. This is the symptom that has approved more

than any other over the years.

 

Anxiety - There's not much to be said about my anxiety. However, I will say that it got exponentially worse at the same time that my

Narcoleptic symptoms came about. Last summer was the single most stressful time of my life & made my P.A.N.D.A.S. flare up like no

other. Before that point I would have anxiety issues every now & then, really nothing too terribly out of the ordinary. I had some

major friend issues last summer & my confidence (which was sky-high before then) was pretty much crushed & my anxiety issues that

had been ignorable before made themselves known in a very new, undeniable way. They've gone down substantially since then, but they

are still more apparent than they were before last summer. It's mostly social anxiety. I went from being a social butterfly to

practically a hermit. As I said, this has gotten immeasurably better in this past year. I go out & do things now but not nearly as

often as I used to. This is the one symptom that really leaves me at a loss for words, I really just don't know how to describe it.

Anxiety is anxiety as far as I'm concerned. Some days it feels like I'd rather die than be around new people.

 

OCD - My OCD mainly manifests through pacing. Like the anxiety, it's really hard to explain. I just can't stay still. If I'm sitting at the

computer for too long, I have to get up & do a little lap around the downstairs. If I'm cooking something, I'm walking "laps"

while it's cooking. If I'm watching television, if I'm reading a book, if I'm doing anything... I have to get up & take a lap before

long. I live with my Mom & stepdad, & whenever they go to bed I'll seriously just walk around the house. Around & around & around

the house. I'll get fat if I don't. If no one else is around I talk to myself while I'm walking. My OCD is the only symptom that

just makes me feel like I'm crazy. Besides that my compulsions revolve around the number three. This isn't too terribly severe

but in the sixth grade, when my P.A.N.D.A.S. exploded, it was bad enough to where I would make my teachers rearrange desks to be in

threes. Now it's just simple things like the number of bracelets on my arm or where I leave the volume on the television. We think

that I got strep on July nineteenth, although we never went to the pediatrician for a test. I'm asymptomatic nine times out of ten

so when I felt "off" one night & then my Mom & stepdad both felt sick the next day it's just kind of assumed. ANYWAY, ever since

then I've been experiencing a P.A.N.D.A.S. symptoms that I had only read about previously; choking fears. When I went gluten-free

about a month before the infection, my diet mainly consisted of nothing but mashed potatoes. After the infection when my Mom took me

to Whole Foods for some REAL food, which I was ECSTATIC about at first, I found that it was really hard to eat. It's not so much

mentally thinking "This is going to make me choke" as it is actually feeling the sensation of choking the second the food hits my

tongue, which is made especially odd by the fact that I don't think I've ever choked on food before. I'm trying my best to eat the

food that my Mom bought for me but sometimes it's hard. The only things I can eat comfortably are Carnation Instant Breakfast &

mashed potatoes but I have been pushing myself as hard as I can not to fall into the pattern of avoiding solid food.

Praying is also a big compulsion for me. I say the same prayer in my head everytime I eat. "Lord, please bless this food & the hands

that made it. Please bless it to my body full of vitamins & minerals & rid it of all germs & bacteria. Please let it multiply to

those who need it most. Amen." If I mess up, I start over. I can say this prayer ten times or more before I can actually eat. I've

NEVER talked about this compulsion before just because it feels like no one will believe me since I'm not praying out loud & I'm not

even really that religious. The same goes for my night time prayer, which I won't type out just because it's longer.

I have also been dealing with trichotillomania for about a year now. When I couldn't stay awake when school started last August I

started tearing my hair out in an attempt to wake myself up. I straightened my hair everyday so I would comb through my bangs with

my fingers & tear out the hairs that felt wrong. At first it was just a little mechanism to wake up, but it got to the point where

my hands would HURT if they were not pulling my hair. By April I had a bald spot so big that people noticed it & it was visible in

pictures. I started tearing at my eyebrows, which I then started drawing on, & my eyelashes, which I replaced with fake eyelashes.

I've stopped with my eyelashes but not my eyebrows, & I don't do it that much now that school is out. I do have pictures of it.

 

Emotions - I am always angry. Always. It's in different degrees & sometimes it's mixed with happy, but I am ALWAYS at least a little bit

ticked. I find it so difficult to empathize. My Mom has called me the "Least sympathetic person on Earth" before. After joining the

ACN forums I read about so many kids taking their rages out on their parents, but for the most part (although they would argue

otherwise since I made sure they never had to see the severity of it) mine have all been taken out on myself. Quite frankly I used

to beat myself. I would get furious, oftentimes over nothing in particular or something totally insignificant, & just start wailing

on my legs & torso. I honestly don't think that I've done that in about two years though. I've hit myself a few times but not to the

extent that I used to. I cut myself once while grounded in 2006 right after my symptoms exploded. I was just young, angry, & it was

really barely anything. Just scratches. In June of last year, when as you can probably tell EVERYTHING took a nosedive, I did it

regularly. I stopped that August. I never told anyone but my friend Linzee. I am still a very angry person but I am NOT SELF-

DESTRUCTIVE at all anymore. I've matured in a huge way since then & would never dream of doing any of that again but I just felt

that it needed to be included.

 

Others - I experienced the abrupt handwriting change. My handwriting is some of the weirdest my teachers have ever seen. I have HORRIBLE

short term, but incredible long term, memory. I haven't experienced any urinary frequency. I am as clumsy as they get & get asked

"Are you okay?" all the time because I look upset when I'm not. My vocabulary is insane, not to mention just flatout weird.

Whenever I get interested in something I become FIXATED on it. I can read online for hours about random things like parasites or

feminism. I have a really hard time telling when people are interested or not, because I'll go on these tangents where no one is

responding at all or showing ANY interest but I think that they're just as interested as I am. Earlier in the summer I gave my

friend & some people I didn't know well a half hour speech about the history of Greenland. I don't know when to shutup. But

other times I'm terrified to say anything in a social setting, especially when around new people. I can actually sit there, turning

a phrase over & over in my head a million times before I get the nerve to say it, & more often than not I'll end up just staying

silent & having my own little panic attack. Over absolutely nothing.

[Worried_Dad]

Wow - this is quite thorough, and I'd say you're well prepared. And you show great courage to share this with the community! Many of your symptoms are familiar, based on what we observed with our son; he was never able (or willing) to verbalize them this way, though.

 

Establishing the correlation between symptom flares and the positive throat cultures (if you can do that based on your history) should help reinforce the PANDAS diagnosis. I didn't see any mention of antibiotics: were abx ever prescribed for you? Which ones, and did they help at all? That might be useful info for the doc.

 

Side note: I believe that you and emmalily have made a unique contribution to this forum and the PANDAS community by providing insights into what it's like to experience this disorder firsthand. Your willingness to share this "insider's view" of PANDAS could be invaluable to other children, teens, and young adults who are struggling with it. I believe emmalily is blogging about this at an "undisclosed web location" ( http://www.latitudes.org/forums/index.php?showtopic=9320 ), and another young man whose mom is a member of this forum has created a PANDAS web site specifically for the PANDAS patients, not the parents ( http://pandas-syndrome.webs.com/ ). Maybe there's a way you could combine forces to forge a "safe place" for PANDAS sufferers to compare notes and provide support directly to each other? I'd imagine it would be reassuring for many young people to realize they're not alone in this.

 

I know you've got your hands full already with everything you're dealing with. Thanks for giving us parents a glimpse "behind the veil" (or ring of fire) that PANDAS places between us and our kids. It's eye-opening!

[EmersonAilidh]

I'll admit to feeling a little doubtful when posting this, but I feel like I owe the P.A.N.D.A.S. community full disclosure. I couldn't leave out any details knowing that it could possibly help a patient feel less alone or help a parent understand better.

 

EmmaLily was the very first person to talk to me on this forum. She's one of the few people I've seen with P.A.N.D.A.S. that are older than me, & even though we don't talk as much as we initially did I find her to be a huge inspiration. She's a superhero, as far as I'm concerned.

I'm also seriously considering taking up the blogging.. I think that a little day to day "journaling" could be pretty useful. Thank you so much for your kind words!

 

Also, it's extremely difficult for me to establish a correlation between symptom severity & strep infection. I just posted this on Dave's inflammation vs. underlying infection post, which I'm not sure if you're following, so sorry if I'm repeating myself here. Up until twelve months ago I had never ever had a negative strep test, rapid, culture, or otherwise. Every single one that I had ever taken was positive. I've had TWO negative ones this past year, which seems like a good thing. My first pediatrician, who I stopped seeing at the age of eight, was unbelievably confused. She just didn't see how a seemingly otherwise healthy kid (motor tics were all minor & my compulsions were kept to myself at this point) could possibly have this much strep. On that note, however, in the rare occasion that I DO know when I'm experiencing an infection, I can see a definite rise in symptoms. I developed my new choking fears after my (suspected) infection on July 16th.

[EmersonAilidh]

I'll admit to feeling a little doubtful when posting this, but I feel like I owe the P.A.N.D.A.S. community full disclosure. I couldn't leave out any details knowing that it could possibly help a patient feel less alone or help a parent understand better.

 

EmmaLily was the very first person to talk to me on this forum. She's one of the few people I've seen with P.A.N.D.A.S. that are older than me, & even though we don't talk as much as we initially did I find her to be a huge inspiration. She's a superhero, as far as I'm concerned.

I'm also seriously considering taking up the blogging.. I think that a little day to day "journaling" could be pretty useful. Thank you so much for your kind words!

 

Also, it's extremely difficult for me to establish a correlation between symptom severity & strep infection. I just posted this on Dave's inflammation vs. underlying infection post, which I'm not sure if you're following, so sorry if I'm repeating myself here. Up until twelve months ago I had never ever had a negative strep test, rapid, culture, or otherwise. Every single one that I had ever taken was positive. I've had TWO negative ones this past year, which seems like a good thing. My first pediatrician, who I stopped seeing at the age of eight, was unbelievably confused. She just didn't see how a seemingly otherwise healthy kid (motor tics were all minor & my compulsions were kept to myself at this point) could possibly have this much strep. On that note, however, in the rare occasion that I DO know when I'm experiencing an infection, I can see a definite rise in symptoms. I developed my new choking fears after my (suspected) infection on July 16th.

[EAMom]

Hi Emerson,

 

Great writeup...it's really interesting getting a firsthand perspective of PANDAS.

 

Was the July 19 strep infection treated? Was your mom/stepdad treated? I would really recommend getting current throat cultures on everyone, even if they were treated.

 

I would also ask about being tested for strep in the gut (esp. b/c of your GI symptoms). I don't know much about how it is done, but maybe others will chime in.