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New eBook: Your Child Has Changed; Should You Consider PANDAS?


Have you seen the ACN Latitudes PANDAS eBookOur helpful book is a 37-page primer in a friendly question & answer format.  This eBook contains useful information to understand the symptoms of PANDAS, how it is diagnosed (including lab tests), the different types of treatments, approaches for prevention, and how to find the help and support that you need. Learn more

 


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Letter explaining PANDAS to teachers?


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6 replies to this topic

#1 marylandmom

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Posted 28 September 2010 - 01:16 PM

I remember seeing this back during the summer. Someone had been nice enough to write it and post it. Does anyone know where this is? I need it for a conference tomorrow.
Thanks


#2 karam

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Posted 28 September 2010 - 01:43 PM

I don't have that letter, but if your child presents with OCD symptoms, I have an article about the role of school personnel and accomodations that can be made.
I also have an article from 2004 issues of School Nurse magazine.

Send me your email if you want either or both.

Kara

DD 11: Severe OCD & other PANDAS symptoms Fall 2009, PANDAS dx spring 2010; Bartonella dx spring 2011; Lyme diagnosis Fall 2011.
On various abx combos for three years. Stopped abx in March 2013. Doing GREAT!!!!!
DS 13: Emotional Lability past 4 years; suspected Lyme spring 2011, confirmed January 2012.
On abx since Feb. 2012. Doing really well, too.
Myself: Lyme dx Jan 2012. Treating. Improving.


#3 phillypa

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Posted 28 September 2010 - 02:26 PM

That was on facebook. The Pepsi/Pandas link. Just click on the link on your facebook page. Scroll back to around August. It should be there.

#4 ma2ar2rm2

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Posted 28 September 2010 - 03:43 PM

here is what they had on the pepsi refresh thing.. I saved it and have used it often..

P.A.N.D.A.S.(Pediatric Autoimmune Neuropsychiatric Disorder Assoc. with Strep)When a child contracts strep, antibodies that are aimed to kill the strep turn on the child and begin to ATTACK THEIR BRAIN causing inflammation. This swelling causes dramatic behavior changes. A once "normal" child suddenly has OCD, tics, high anxiety, sensory issues, and more. Most doctors are not aware of the complexity of PANDAS, how it presents itself, or how to treat it. This may lead to a misdiagnosis of clinical OCD, TS, or other mental disorders. Imagine a childhood of unnecessary psychotropic meds, suffering, and unanswered questions. With CORRECT DIAGNOSIS and treatment, remission is possible!We need this grant to fund Dr. Cunningham's study because it gives hope for correct diagnosis and treatment of this alarming disorder.Please help these kids and REFRESH the RESEARCH! Vote Project P.A.N.D.A.S!


I had a 504 meeting today with my dd's school and here is the site I used to get alot of good info explaing PANDAS.

http://www.pandasresourcenetwork.com/

it has stuff like this

"PANDAS is a pediatric autoimmune disorder characterized by the dramatic onset of neuropsychiatric symptoms such as obsessions, compulsions, motor or vocal tics [Swedo1997]. PANDAS is thought to be similar to Sydenham Chorea where there is dramatic symptom exacerbation following a strep infection [Kirvan2006].



PANDAS is thought to be caused by the following sequence of events in this order:



•The production by the immune system of an antibody that can interact with neuronal tissue [Kirvan2006]
•A failure of the immune system to suppress this antibody
•A breach of the blood brain barrier such that the antibody reaches neuronal tissue [Yaddanapudi2009]"

and this
"Signs and Symptoms



Children with PANDAS must be initially diagnosed with Obsessive Compulsive disorder or a tic disorder [Swedo2004]. These children may have some of the following symptoms that accompany the OCD or tic disorder [Swedo1998][Moretti2006]:



•Obsessions (e.g., preoccupation with a fixed idea or an unwanted feeling, often accompanied by symptoms of anxiety)
•Compulsions (e.g., an irresistible impulse to act, regardless of the rationality of the motivation)
•Choreiform movements (e.g., milk-maid grip, fine finger playing movements in stressed stance)
•Emotional lability (e.g.,irritability, sudden unexplainable rages, fight or flight behaviors) (66%)
•Personality changes (54%)
•Age inappropriate behaviors particularly regressive bedtime fears/rituals (50%)
•Separation anxiety (46%)
•Oppositional defiant disorder (40%)
•Tactile/sensory defensiveness (40%)
•ADHD, fidgetiness, or inability to focus (40%)
•Major Depression (36%)
•Marked deterioration in handwriting or math skills. (26%)
•Daytime urinary frequency/enuresis (12%)
•Anorexia (particularly fear of choking, being poisoned, contamination fears, fear of throwing up)"

and this
"Even though there is every reason to have hope for our kids improving after a diagnosis of PANDAS it is an autoimmune disorder, and like most autoimmune disorders tricky to control. On top of that, being a newly recognized disorder PANDAS forces you to live with ambiguity; a place where there are more questions than answers.



While it is clear that certain treatments such as IVIG and high dose antibiotics are helpful in treating PANDAS, the disease can have a saw-toothed presentation which means that from hour to hour it is as if you are dealing with a different child. Other people describe the clinical course as acute, dramatic, relapsing and remitting. Either way your child’s presentation is not static."

and alot more that I printed off and highlighted for the teachers,

#5 vickie

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Posted 28 September 2010 - 06:58 PM

Hi. Here's the example school letter for a child in an exacerbation from the pepsi page. There was another one as an example for a child in remission too. Along with a letter, you can bring the PANDAS Fact Sheet http://www.latitudes...?showtopic=6265, the NIMH post, and if you feel they will be standoffish on the whole idea of PANDAS, you can even bring a print off of the Columbia mouse study. If links for those are needed, let me know.

http://www.facebook.com/notes.php?id=332059986829&notes_tab=app_2347471856#!/note.php?note_id=142933665738910



The letter below is an example of a letter a parent may send to a teacher informing them of their child's PANDAS. This is written for a child that is attending school while in an exacerbation and is still suffering from symptoms. It is written without too many details of the actual disorder itself in order to keep it concise. It also written assuming you will have a face to face meeting where you can discuss symptoms in more detail, discuss severity, and determine ways you can make the school year go smooth. Obviously, edit and personalize this as you see fit. It is only an example. I will refer to the child as Chris for this letter.



Mr/Mrs. _______,



My child, Chris, will be in your class this year. Before the year starts, I wanted to take a moment to send some information out about an autoimmune disorder Chris has. This disorder is called PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep). When a child has PANDAS, there is an autoimmune reaction that occurs as a result of a strep infection. The reaction varies child to child but may cause tics, OCD, separation anxiety, sensory issues, ODD (oppositional defiance disorder), change in handwriting and math skills, ADHD, and more.



Currently, we are working on getting Chris' PANDAS better. This can be a long process. Chris still exhibits (list main symptoms here). I ask that you find patience and understanding as we attempt to fight this disorder and find remission. Our ultimate goal is to be symptom free. If you are concerned about any new behaviors you may see surfacing, please don't hesitate to let me know. It is best to err on the side of caution and allow us to determine if we need to see the doctor. Also, if you witness any improvement and breakthroughs, I would love to hear those too!



I will be asking (school's name here) to inform me if anyone in your class or his/her sibling's class calls in sick with strep. Strep is the trigger for Chris and needs to be avoided at all costs. PANDAS has been referred to as RF (Rheumatic Fever) of the brain. Neither Chris, nor his/her siblings gets symptoms of strep -- no sore throat, no fever. So, if they are directly exposed, they need to be brought in for testing. I ask, if you should ever be diagnosed with strep during the school year, that you inform the office so I can then be notified.



I would like to set up a face to face meeting with you to discuss this further, provide you with papers that may help explain the disorder even more, and to answer any questions you and I may have. Please remember that Chris is like any other child, he/she just happens to have an autoimmune disorder that may affect movement and/or behavior. Together, I believe we can make this a wonderful school year. Rest assure that PANDAS is not contagious. No one in the school can catch this from my child. I am simply asking you to be part of our "team" in getting Chris healthy and well. You are an integral part of his/her life and I appreciate your help.



Here is useful link on PANDAS that you may be interested in reading prior to our meeting.



PANDAS Fact Sheet http://pandasnetwork...ily/fact-sheet/



Thank you for your time and understanding. I look forward to hearing from you and scheduling a meeting.

Edited by Vickie, 28 September 2010 - 07:01 PM.


#6 marylandmom

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Posted 28 September 2010 - 08:13 PM

Thanks so much for your replies. I will be cutting and pasteing this for my conference ( private school so no IEP, etc to back me up) to "prepare" dd(8) teacher should this PANDAS rear its ugly head again. I have had too many years ( hindsight IS 20/20, right?) of school were things are going well and BAM teachers are looking at me like, "WHAAAAT IS GOING ON?!"
At least now I have a talk track.

#7 buster

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Posted 29 September 2010 - 12:21 AM

In our case, we did the following:

We selected 4 handwriting samples:
  • one pre-illness (February)
  • one during exacerbation (March)
  • one pre-treatment (June)
  • one post-treatment (August)

This was incredibly effective at conveying the effect treatment had on legibility and fine motor skills.

We then had a cover letter that said:

______ has a dysfunction in her basal ganglia specifically around fine motor and orthographic memory. This is a medical condition and not a lack of trying or lack of desire to do better. Like someone who has had a stroke, it is incredibly frustrating for ________ to do simple tasks everyone else can do. Even copying a word is a chore.

Orthographic memory is pattern matching that affects both how we recognize words/numbers (sight reading) and how we know how to spell words. ______ struggles to produce words in the right shape. You may be surprised to see that ______ is misspelling a word that is written in the question above her answer. This is because copying is more difficult for her than guessing at the word shape. As such, please provide ways that she doesn't have to copy material particularly far-point copying. ______ is recovering from this illness and it will take some time for her brain to relearn prior skills.

In our case, handwriting deterioration is the most noticable sign that something is wrong. We will likely notice symptoms before you will -- but if you do see significant deterioration in legibility please let us know. We would also appreciate being informed if a child in the class is out with a contagious bacterial infection such as strep throat. _______ is particularly sensitive to strep throat and early awareness will help us help her.


---------------

In our case our daughter is post treatment but we still had a tough time with the school. It really is tough for them to see her skilled in all sorts of other ways and still not able to spell certain words.

Buster




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