Write a letter to TIME Magazine!

[EmersonAilidh]

Send a letter to "letters@time.com" urging them to do a feature on P.A.N.D.A.S.

Yes, I got the idea from Beth Maloney's email, but I hadn't seen it mentioned on the forum yet! This would be a GREAT way to reach millions of people across the world! We deserve it.

 

This is the first draft of my letter. Comments/ideas would be appreciated.

 

 

 

 

 

 

I'm a fifteen year old girl in Texas living with an autoimmune disease called P.A.N.D.A.S., or Pediatric Autoimmune Neurological/Neuropsychiatric Disorders Associated with Streptococcus. I'm writing you to ask about possibly doing a feature/story on the condition. Right now, we are trying to get the word out about our condition because it is not nearly as well known as it should be & is commonly misdiagnosed when it could be treated & relieved easily.

 

 

Pediatric Autoimmune Neurological/Neuropsychiatric Disorders Associated with Streptococcus is an Autism Spectrum Disorder that occurs when strep antibodies (specifically GABHs - Group A Beta-Hemolytic streptococci) misfire & attack the Basal Ganglia in the patient's brain instead of bacteria. The Basal Ganglia is responsible for motor control, learning, cognition, & many other things. This onslaught of antibodies irritates & damages the neuronal cells in the brain, leading to OCD & Tourette's like twitches in ALL patients. For the vast majority of patients, "flare-ups" of these two symptoms can be directly linked to strep throat infections, but it gets much more complex. P.A.N.D.A.S. also involves a process known as molecular mimicry, where these neuronal cells basically make the antibodies think that they're attacking strep bacteria & in turn make our confused brains show symptoms of disorders/conditions that we don't necessarily have. Personally, I have dealt extensively with Narcolepsy, although I have also had experience with Depersonalization Disorder, Cataplexy, Sleep Paralysis, extreme anxiety, Hypnagogic Hallucinations, ADD, & anorexic tendencies. Other symptoms include, but are certainly not limited to, assorted sleeping disorders, behavioral regression, aggresiveness/uncontrollable rage, inattentiveness, dilated pupils, enuresis/frequent urination, non-specific gastrointestinal pain, & last but not least, an abrupt, strange change in handwriting. P.A.N.D.A.S. typically has an overnight onset during adolescence, meaning that children go to sleep one night perfectly fine, & wake up afflicted. My family can recall symptoms from when I was two years old with my first motor twitch & compulsions. They thought nothing of these "quirks" until I woke up with explosive, debilitating twitches when I was ten years old in the sixth grade that landed me in the special ed room when my school didn't know what to do. About to enter my sophomore year of high school, I have still received no real treatment because the lack of information/recognition among even doctors. Traditional pharmaceuticals (which I received an absolute ARSENAL of while misdiagnosed with simple OCD & Tourette's) do not have an affect on children with P.A.N.D.A.S. since the mechanisms causing our symptoms are not the typical ones. It is incredibly important that children with P.A.N.D.A.S. receive diagnosis & treatment early on because if you catch the disorder early enough it can be treated with antibiotics or IVIG (IntraVaneous ImmunoGlobulin)/PEX (Plasma Exchange). If not, it is suspected that every antibody onslaught left untreated causes more & more damage to our brains, inflaming the Basal Ganglia so much that it can affect even the Thalamus & Globus Pallidus or cause brain damage. I am a perfect example of someone who could have been saved by a correct diagnosis/treatment early on. With a suspected thirteen years worth of untreated episodes, I have lapsed into what is known as "chronic P.A.N.D.A.S.", where at fifteen years old I have not grown out of a disease not expected to last through puberty. I experience my symptoms all the time, instead of exclusively when exposed to strep (although they do become exponentially worse when I am). Because of what these antibodies have done for my brain, there is little to no hope that I will ever be "normal" or really feel "better". By getting the word out about this disorder, we are trying to save children from that fate. We are also trying to make sure that schools & teachers are understanding & accommodating with P.A.N.D.A.S. patients, that doctors are equipped to recognize P.A.N.D.A.S. & treat it accordingly instead of wasting precious time with mis diagnoses & ineffective treatments, & above all else, to make sure that every child with P.A.N.D.A.S. knows what it is that is happening to them.

 

 

 

I am one of the few people in the P.A.N.D.A.S. community who writes from the patient's point of view. I am not a concerned parent, I am not a doctor, I am a fifteen year old girl who will never get to experience a fully normal childhood thanks to my defunctive antibodies/lack of treatment. I'm writing this letter to you, asking you to publish an article just to inform the public on even the existence of this disease, because, quite frankly, no child deserves to go through what I've been through, & if caught early on enough, they can be saved from years of mental & physical ######.

 

 

 

I would be more than willing to contribute if/when you do the article. In fact, I would LIKE to. Many patients' P.A.N.D.A.S. manifests more autistically than mine, making it hard for them to reach out & explain to strangers. Also, unlike many (maybe even most cases) that last nine months to a few years, I have been experiencing symptoms for as long as I can remember. I have more than my fair share of experience with P.A.N.D.A.S., although my case is definitely not as severe as it can get. Many of us want to hide our disease in an attempt to salvage what little normalcy we may have left. We think that if we deny it, if we don't acknowledge it.. Then it might as well not be there. I lived with this mentality for years, but now I realize that we cannot afford for our condition to be kept a secret. People need to know about P.A.N.D.A.S., & all of us in the P.A.N.D.A.S. community believe that your magazine would be a great venue to reach millions of people.

 

 

Thank you for listening, & PLEASE consider this.

 

~Emerson Ailidh.

 

 

 

 

 

 

 

 

 

(I included my last name. Didn't want to post it here.)

[LNN]

EA- you have an incredibly bright future ahead of you! We are all so proud of you!

[KaraM]

Emerson,

 

You are an inspriation. I'll send my letter.

 

Kara

[EmersonAilidh]

Thank you both very much! Sweet posts like these make my day. <3

[NancyD]

Emerson,

 

You are wise beyond your years. You really blow me away! You should seriously think about writing a book someday soon. Your insight, experience, and ability to write so beautifully would be very appealing to a publisher.

 

Nancy

[Mary M]

I can only hope that my dd12 will become even half the amazing teen you are. Thank you for sharing this and please submit it to TIME. I look forward to PANDAS being a feature article...with you as our childrens' representative.

Mary

from Michigan

[EmersonAilidh]

Is there anything that I should omit/change/add to the letter??

 

& thank you both very much! Those posts made my day. I've ALWAYS wanted to write a book, English is my favorite thing on Earth. But I want to get some kind of treatment or something first because right now my story would basically be "One day I got P.A.N.D.A.S... & then it sucked for thirteen years.", haha. & I DO want to be a representative of P.A.N.D.A.S.! I am very aware that I'm fairly high functioning (comparatively speaking) as far as P.A.N.D.A.S. kids are concerned, & I've had far more experience than I should. Also, like I said in the letter, I'm the perfect example of why P.A.N.D.A.S. needs exposure. Someone commented on my attitude towards all of that being "exploitative", but right now exposure is exactly what we need, even if I do just have to send random emails that other people see as saying "I have P.A.N.D.A.S. & you should write an article about it."

 

Although, I will confess that I am MUCH chattier on here than real life. You guys just make it easy, haha.

[3boysmom]

Is there anything that I should omit/change/add to the letter??

 

& thank you both very much! Those posts made my day. I've ALWAYS wanted to write a book, English is my favorite thing on Earth. But I want to get some kind of treatment or something first because right now my story would basically be "One day I got P.A.N.D.A.S... & then it sucked for thirteen years.", haha. & I DO want to be a representative of P.A.N.D.A.S.! I am very aware that I'm fairly high functioning (comparatively speaking) as far as P.A.N.D.A.S. kids are concerned, & I've had far more experience than I should. Also, like I said in the letter, I'm the perfect example of why P.A.N.D.A.S. needs exposure. Someone commented on my attitude towards all of that being "exploitative", but right now exposure is exactly what we need, even if I do just have to send random emails that other people see as saying "I have P.A.N.D.A.S. & you should write an article about it."

 

Although, I will confess that I am MUCH chattier on here than real life. You guys just make it easy, haha.

 

 

Hello Bright One,

 

Loved the letter...Maybe I would leave off: "is an Autism Spectrum Disorder" from your first sentence of your second paragraph. (Pediatric Autoimmune Neurological/Neuropsychiatric Disorders Associated with Streptococcus is an Autism Spectrum Disorder.)

 

Although many seem to find a link, it is not the case for many others. I teach children with Autism and as of yet PANDAS is not on the spectrum.

 

Thank you for all you do to help move this forward!

Edited July 21, 2010 by 3boysmom

[EmersonAilidh]

Is there anything that I should omit/change/add to the letter??

 

& thank you both very much! Those posts made my day. I've ALWAYS wanted to write a book, English is my favorite thing on Earth. But I want to get some kind of treatment or something first because right now my story would basically be "One day I got P.A.N.D.A.S... & then it sucked for thirteen years.", haha. & I DO want to be a representative of P.A.N.D.A.S.! I am very aware that I'm fairly high functioning (comparatively speaking) as far as P.A.N.D.A.S. kids are concerned, & I've had far more experience than I should. Also, like I said in the letter, I'm the perfect example of why P.A.N.D.A.S. needs exposure. Someone commented on my attitude towards all of that being "exploitative", but right now exposure is exactly what we need, even if I do just have to send random emails that other people see as saying "I have P.A.N.D.A.S. & you should write an article about it."

 

Although, I will confess that I am MUCH chattier on here than real life. You guys just make it easy, haha.

 

 

Hello Bright One,

 

Loved the letter...Maybe I would leave off: "is an Autism Spectrum Disorder" from your first sentence of your second paragraph. (Pediatric Autoimmune Neurological/Neuropsychiatric Disorders Associated with Streptococcus is an Autism Spectrum Disorder.)

 

Although many seem to find a link, it is not the case for many others. I teach children with Autism and as of yet PANDAS is not on the spectrum.

 

Thank you for all you do to help move this forward!

 

I've always been told that it was! I'm confused now. :/

Thank you though!

[3boysmom]

Here is Dr. K's website link. I copied his “patient phenotype” paragraph for you. He has a section on there that discusses Autism.

 

http://www.webpediatrics.com/pandas.html

 

 

QUOTE:

(2) Particular patient phenotype. PANDAS patient is frequently highly intelligent, very communicative child who is also a very good student. It is common that patient's past medical history contains information about occasional ("transient") tic(s), certain degree of obsession with order, cleanness, preciseness, etc. In addition, infantile problems with colic, poor sleeping habits are frequently reported in PANDAS patients.

 

 

Dr. K's information is great. Not everyone with PANDAS is on the Autism spectrum (seems that most are not). Having said that, there seems to be too many that also have autism to dismiss a connection. Many seem to be very highly intelligent (with Asperger's). Which is actually the case with our son. Very bright but rambles on too much and about topics that are way over the heads of most 10 year olds. For the most part he fits in and most would not know...not in any special classes, but PANDAS has rocked his world and now he struggles.

[NancyD]

3boysmom is correct. PANDAS is not considered to be an autism spectrum disorder. There are many children on the autism spectrum who have undiagnosed PANDAS (I come across these children quite frequently) but it is still considered a co-existing disorder. We may find in the end that there is a correlation between the two disorders but I think we are a long ways away from that.

 

Nancy

[KaraM]

OK Emerson,I did it: Thanks for motiviating me...this is what I sent.

 

In December 2009, at seven years old, my daughter was diagnosed with Obsessive Compulsive Disorder. One symptom of OCD I am now realizing she had (and sometimes still has) was a need to collect papers, newspaper flyers and coupons. For her (albeit not for all), this symptom was minor in comparison to many of the other symptoms she experienced, primarily due to her fear of germs and contamination. Those fears eventually interfered with her ability to function normally: at her worst she was unable to put clothing on; unable to go to school, unable to eat food from the refrigerator; unable to enter or exit the house from any door but the basement; unable to walk or drive down the streets leading to our home; unable to sleep in her bed (or any bed in the house) and unable to be touched, helped or hugged by either me or her father.

My daughter's OCD and fears developed over the course of a few months. Prior to the fall of 2009, she was a normal, healthy child. By December 2009, in addition to germ contamination fears, she was also experiencing extreme mood changes, irritability, rages, depression, as well as ADHD like behaviors at home and school. Through the help and encouragement of people on the OCD and Parenting and on the Latitudes online support groups we decided to have our daughter blood tested for Strep. We also sent her blood to be included in a study being conducted by Dr. Madeleine Cunningham at the University of Oklahoma. The results from both of these tests indicated that our daughter in all likelihood has PANDAS (Pediatric Autoimmune Disorder Associated with Strep). Since we got those results, our daughter has been on prophylactic antibiotics. I am happy to report that her symptoms have dramatically improved. She fluctuates between 80 and 90% better. She gets dressed, goes to school, eats food from the fridge, uses all the doors in the house, drives and walks up and down all the streets in our neighborhood, sleeps in her bed, sits in her parent's laps and hugs us many times a day.

Unfortunately, most doctors do not have a solid understanding of what PANDAS is. They have either never heard of it, don't believe it exists or use outdated and/or incomplete information in determining whether their patients have PANDAS. Instead, they very willingly write prescriptions for psychotropic drugs such as Celexa, Zoloft or Prozac; drugs that may actually make things for a PANDAS child worse.

There needs to be more research, education and communication about PANDAS. I hope TIME considers publishing an article on such a worthy topic.

Sincerely,Kara McLaughlinSalem, MA

[mama2alex]

Your letter moved me to tears. You're a better writer than many adults at this point! I'm PMing you with my email address - I can provide some edits if you send me a Word doc. Thank you!!

[EmersonAilidh]

3boysMom & NancyD - Thank you for clearing that up! That's good to know. I've always had Asperger's tendencies (I made a post once after feeling more alienated than ever when I went on a thirty minute tirade about the history of Greenland) but I've never got an answer one way or the other.

 

KaraM - Your letter almost made me cry. Thank you so much for helping! I could honestly see TIME going for this... We just have to get more people to send letters!!

 

Mama2alex - Thanks for offering editing advice! I want to be an editor when I get older.