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Let's get PANDAS on Oprah


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I wrote to Oprah show about two years ago, explaining PANDAS and pleading for them to consider doing a show, especially b/c it is still not widely known and kids are getting misdiagnosed. I never heard back and did not pursue it further. I would be glad to write to them again!

Colleen

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Thank you so much for that link! I have been talking about this to listmates for about 3 months, but didn't know how to get started. I sent in some information about us and maybe with enough of us doing this, they will realize that there are a lot of us out there and we deserve to be heard. Pat

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FYI Here's what I sent!! YIKES!! The Oprah post will only allow 2000 characters...the below is a lengthier version of what was sent.

 

Dear Oprah,

 

I'm writing to you to request your help in shedding light to a very rare disorder called PANDAS. PANDAS is an acronym for Pediatric Autoimmune Neurological Disorder After Stroptococcus. Please take a moment to read my son's story.

 

Tyler, once energetic, fun loving, compassionate, gentle and polite, a thirteen year old (yes teen aged boys can be all of these things) was stricken with Lyme Disease in the fall of 2008. Prior to the onset of the LD, Tyler weighed in at about 78 pounds (Nov of 2007). Ty had been under antibiotic treatment for the LD but began showing deteriorating signs around January, 2009. His LD specialist informed us of a very rare condition known as PANDAS and suggested the possibility that we were now battling this in addition to the LD. Like most people, I only ever thought about cute cuddly bears gifted by China. This disorder is anything but cute and cuddly.

 

Today (almost 2 years later), Tyler, now 66 pounds, confines himself to his bed, where he has spent most of his time these past 7 months. He gets out of bed only to attend doctor appts (weekly), perform lab tests (monthly), see a psychologist (weekly) and to attend in home tutoring classes (3 times weekly). We're seeking to add a neurologist and psychiatrist and possibly a rheumatologist, which will only increase his already burdened schedule.

 

His OCD behaviors are so crippling that each and every meal he eats (despite an extremely limited diet of only about 10 foods) questions whether or not the meal will give him food poisoning. His separation anxiety is so severe that he hasn't slept alone in the past 5 months. The depression, anxiety, paranoia and complete lack of hope that he will ever be healthy and carefree shatters his entire logical thought pattern and consumes his entire being. His anorexic eating wreaks havok on his nutritional balance and to gain a pound between doctor visits -- monumental. My son, Tyler, hides inside this rare condition...I want him back.

 

The complete lack of information for this very real disorder is appalling. Most treatment approaches seek to band-aid the symptoms with anti-anxiety medication, rather than exploring the underlying cause/reasons for the abrupt change to his behavior. There seems to be no real treatment options; those existing are highly speculative and largely scrutinized by the medical community. Once a specialist is found, to land an appointment one has to be acrobatic in flexibility and endurance. One encountered and recommended pyschiatrist will only take on new patients after the new patient calls in from 2 - 2:20 on M, W, or Thursdays for "the interview". Numerous attempts to reach him via this process have failed...it's like trying to align the stars on a specific day at an exact moment in time. (They say my son is the one with the OCD behavior??!!) We've yet to get an appointment.

 

For those appointments that we do make, none of the specialist seem to take any type of insurance...What have I been paying into all these years, certainly not a reciprocating plan. During very tight financial times, there's no scaling back when it comes to Tyler's health. My "discretionary" spending has moved from purses and shoes to antibiotics, phone consultations, doctor appointment, psychologist appointments, etc.

 

Please help! Show your support to these children, afflicted with this very real illness. The Oprah Show regularly forefronts highly controversial topics, defends ignored or abused sub-groups, supports the plight of those with shattered dreams, enlightens the masses to rare stories. A story on PANDAS showcases all of these missions. You and your show makes such a difference in the lives of so many. Please consider helping Tyler, along with the other children affected by this baffling condition, by airing a show on PANDAS.

 

"Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me". (Matt. 25:35-40).

 

Blessings!

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Beautifully written! I couldn't help but smile when I saw you ran into the same problem I did - the 2000 character limitation!!

 

If anyone gets a response, let everyone know right away! Anyone else getting to this thread late - please consider writing too! You can't ignore the squeaky wheel! :wub:

 

FYI Here's what I sent!! YIKES!! The Oprah post will only allow 2000 characters...the below is a lengthier version of what was sent.

 

Dear Oprah,

 

I'm writing to you to request your help in shedding light to a very rare disorder called PANDAS. PANDAS is an acronym for Pediatric Autoimmune Neurological Disorder After Stroptococcus. Please take a moment to read my son's story.

 

Tyler, once energetic, fun loving, compassionate, gentle and polite, a thirteen year old (yes teen aged boys can be all of these things) was stricken with Lyme Disease in the fall of 2008. Prior to the onset of the LD, Tyler weighed in at about 78 pounds (Nov of 2007). Ty had been under antibiotic treatment for the LD but began showing deteriorating signs around January, 2009. His LD specialist informed us of a very rare condition known as PANDAS and suggested the possibility that we were now battling this in addition to the LD. Like most people, I only ever thought about cute cuddly bears gifted by China. This disorder is anything but cute and cuddly.

 

Today (almost 2 years later), Tyler, now 66 pounds, confines himself to his bed, where he has spent most of his time these past 7 months. He gets out of bed only to attend doctor appts (weekly), perform lab tests (monthly), see a psychologist (weekly) and to attend in home tutoring classes (3 times weekly). We're seeking to add a neurologist and psychiatrist and possibly a rheumatologist, which will only increase his already burdened schedule.

 

His OCD behaviors are so crippling that each and every meal he eats (despite an extremely limited diet of only about 10 foods) questions whether or not the meal will give him food poisoning. His separation anxiety is so severe that he hasn't slept alone in the past 5 months. The depression, anxiety, paranoia and complete lack of hope that he will ever be healthy and carefree shatters his entire logical thought pattern and consumes his entire being. His anorexic eating wreaks havok on his nutritional balance and to gain a pound between doctor visits -- monumental. My son, Tyler, hides inside this rare condition...I want him back.

 

The complete lack of information for this very real disorder is appalling. Most treatment approaches seek to band-aid the symptoms with anti-anxiety medication, rather than exploring the underlying cause/reasons for the abrupt change to his behavior. There seems to be no real treatment options; those existing are highly speculative and largely scrutinized by the medical community. Once a specialist is found, to land an appointment one has to be acrobatic in flexibility and endurance. One encountered and recommended pyschiatrist will only take on new patients after the new patient calls in from 2 - 2:20 on M, W, or Thursdays for "the interview". Numerous attempts to reach him via this process have failed...it's like trying to align the stars on a specific day at an exact moment in time. (They say my son is the one with the OCD behavior??!!) We've yet to get an appointment.

 

For those appointments that we do make, none of the specialist seem to take any type of insurance...What have I been paying into all these years, certainly not a reciprocating plan. During very tight financial times, there's no scaling back when it comes to Tyler's health. My "discretionary" spending has moved from purses and shoes to antibiotics, phone consultations, doctor appointment, psychologist appointments, etc.

 

Please help! Show your support to these children, afflicted with this very real illness. The Oprah Show regularly forefronts highly controversial topics, defends ignored or abused sub-groups, supports the plight of those with shattered dreams, enlightens the masses to rare stories. A story on PANDAS showcases all of these missions. You and your show makes such a difference in the lives of so many. Please consider helping Tyler, along with the other children affected by this baffling condition, by airing a show on PANDAS.

 

"Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me". (Matt. 25:35-40).

 

Blessings!

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I have written Oprah, Dr. Phil and the Dr's twice and heard nothing yet! Let's keep trying.

 

I have written twice already and I also sent a letter to Frontline and never got a response from anyone

 

very disheartening but we should keep trying!

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I sent an email the other day. If no response is given to anyone, one last try is to priority mail a typed letter to Oprah studios. Have a signature by staff be required. Also, the person in charge of writing the letter can post the letter and and do an electronic petition. Give contact info for each person who "signs" it. If you want, each person signing it can give their brief personal story since everyone's experiences have similarities, but also differences. That's one thing the show will look for. The opportunity for more guests and more discussion.Print it off and include it in the written letter.

 

It's tedious process, but at least it's something to do if you feel you're hitting a dead end with Oprah.

 

I did not notice if there was a time frame for response listed anywhere n the website. I would think it could take months. Not really sure.

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