Seeking official accommodations via the College Board (SAT/PSAT/AP)

[CMdeux]

As far as I know, nobody else has ever done this.  At least nobody has been successful and put it on the net, anyway. 

Precious little exists in the way, even, of figuring out accommodations re: physical disability to start with.

http://www.collegeboard.com/ssd/student/

http://www.ets.org/disabilities-- this has MUCH better guidance (more specifically that addresses physical disability, not just LD's, though I don't know how much it translates to CB... though to be fair, CB is apparently a subsidiary of ETS, so it might.

Quoting myself from another thread...

Me, I'm kind of panicking, realizing everything that I have to do in the next three months so that DD can have accommodations when she takes the PSAT in the fall.  I would just "let it go" but I can't in good conscience do that when it's likely that she'll be in striking distance of a NMS range... a few points one way or the other (like... if she spends part of the test worried about "smelling peanut butter" nearby) could REALLY matter. 

Of course, allergist has more or less quit even evaluating her PA, since it's obviously stable and ugly as sin.  So now we'll have to schedule an appt with HIM ($$) to figure out just what The Collge Board is looking for in terms of "current" evaluation... plus I'll have to chase down the school and probably insist on a 504 meeting THIS SPRING (rather than next fall) so that that is considered "current" as well...

Ai yi yi...

<sigh>  remind me again when this all gets easier??


Thank GOODNESS I finally found a template for doing this with a diabetic child.  Until then, everything that I found related to LD's, which makes most of the advice irrelevant.  It really looks like I'm going to need to put in place:

a) "clock-stopped" and bathroom breaks as needed to manage minor allergic reactions (asthma, hives from contact, etc.)
b) keeping inhaler, epipens, other medication, and cellular communication IN ROOM, with proctor.
c) proctor must be epi-trained.
d) NO food in room, and enough time to do a thorough wipe-down of all 'touch' surfaces prior to testing.
e) access to non-communal bathroom area (avoids food residue on faucet handles, etc.)


That matches up with current 504 accommodations, anyway, so at least that part of things is easy.  Now we just need the 504C and our doc to validate each request.

I'll post inititial documentation and letters to various persons below.  Note:  I'm well aware that few people see any need to go through this process, preferring to simply deal with it by handing a proctor the epipens and hoping for the best.  I've seen that a number of Type I diabetic families have handled things similarly... but not all.  Similarly, while that is probably okay for kids whose FA's don't seem to render them vulnerable to contaminated surfaces, or lead to symptoms that are invisible and incompacitative...  then certainly, I can see why the official route is incomprehensibly labyrinthine.  Not really looking to debate whether or not this is "necessary."  We've already determined that it IS necessary in our particular circumstances.  For others, maybe not. 

  Do know that there is no asterisk after test scores now, even if those are taken with accommmodations in place.

   

[CMdeux]

First steps:

a) review 504/IEP-- this probably needs to be done within the same calendar year as the initial application for accommodations.  (check-- our review meeting is set for April 10)

b) make an appt. with your doc and think through what you'll need from him/her to give to testing agency as "documentation."  Just as with school 504 eval, there is no reason to provide test scores or a waiver for full access.   (Check again-- April 2)

c) talk to school COUNSELOR, who handles the school-side request for accommodations, and who will (should?) help you and the student through the process of applying for accommodations.  If you homeschool (or virtually school, as we do) then you may wish to contact CB/ETS/ACT directly to discuss application with them prior to applying.  (done on March 22 when counselor finally got back to me... this is going to be our weakest link... may call CB myself, actually...    )

d) allow time-- LOTS of time.  AT LEAST eight weeks prior to the end of the school year for the PSAT, since you pretty much have to have accommodations approved before August, and if you're denied the first time, you need time to turn it around with the help of your school counselor and SpEd staff.  Summer vacation being what it is, plan ahead. 

e) write out your summary of "functional limitations" and specific accommodations-- including justification for each. 





Below, I'll include each of these items (redacted, obviously).

I happened to start with reviewing everything at ETS and CB on the subject, then checked out what TypeI families have had success with, and then worked backwards by doing e) above first. I found that this was helpful in terms of clarifying my thinking on the subject and it has allowed me to have a summary that I could hand off to the school counselor and physician, too.

[CMdeux]

Daily impact of LTFA:
The letter written by (allergist) in 2006 in support of {student}'s eligibility for protections under Section 504 of ADA on the basis of life-threatening food allergy (LTFA) is substantively unchanged at the current time (2012).   (An updated version of that document may be available.)

Risk of anaphylaxis is ever-present, regardless of environment or activities, though the relative level of danger may rise or fall depending upon strict environmental controls of the allergen(s).  A person with LTFA must regard all food, even that consumed by others, as a potential danger to immediate safety.  A person with high sensitivity or documented reactivity to contact alone, such as this student, must regard all surfaces touched by others as potentially contaminated outside of his/her own home (if allergen-free), and will often be particularly distressed by smelling the allergen (it is not unusual for those with immediate hypersensitivity to food allergens to have accurate but extremely heightened awareness of the scent of an allergen).  This type of anxiety is extreme, though not irrational, given that the affected person is aware of proximity to a substance that they are fully aware can kill them in microscopic quantities.
  This student has experienced severe anaphylaxis from occult/casual exposures on multiple occasions, and in most instances a cause could never be identified. An additional concern is that this student has presented with atypical anaphylaxis (CNS and cardiac features, without airway or skin symptoms), which is extremely difficult for even highly skilled observers to identify in a timely fashion.  Such anaphylaxis may initially be erroneously dismissed as anxiety, even by the person experiencing it.  Such a mistake can be deadly, because any delay in proper treatment increases the chance of a fatal outcome.
  During singular, important events such as testing via the College Board's examinations, it is prudent to avoid any risk which can realistically be mitigated or minimized.  This allows the student the same opportunity for success as that afforded to her unaffected peers, and reduces the chance for disruption for other participants.

 
Necessary accommodations:

1)   The environment must be made as free from food and food residue (traces, smells, etc.) as is possible.  The student must have time before the examination begins to decontaminate the surfaces that s/he is likely to touch during the course of testing, and no other persons should subsequently have the opportunity to touch those surfaces during the examination period.  Surfaces may be contaminated unknowingly by anyone who has food residue (even invisible traces) on his/her hands and subsequently touches other surfaces or objects.  This student has demonstrated that she has a very tiny threshold dose necessary to cause a severe reaction—it is certainly a quantity too small to be seen with the naked eye.  This student's history strongly suggests that this type of exposure poses a real risk in any crowded or uncontrolled environment in which others are, or have been, eating an allergen or a food which contains one.  Risk of provoking anaphylaxis—or the anxiety that it might be provoked--must be minimized as much as is feasible, given the high-stakes nature of testing and the difficulty/impossibility of rescheduling.  Crushing anxiety as a result of being trapped in a space which is obviously (to the allergic person) heavily contaminated would impose an undue burden on the student and could also substantially impair his/her performance.  In addition, such a high-stakes situation often provides an incentive to the student to ignore symptoms, hope to "tough it out" and delay proper treatment.

2)   Given that it is impossible to make the risk of anaphylaxis negligible, a responsible adult who has some knowledge how to recognize and respond to anaphylaxis must be present with the student during the examination; during anaphylaxis, impairment can be so profound that the student may not even be able to initiate treatment.  Delays in treatment, even just minutes, may result in death or permanent injury.

3)   Emergency medications (epinephrine, oral antihistamines, topical antihistamines, rescue inhaler, etc.) must remain accessible to the student.  A means of contacting emergency responders (and parents) must also be available in the exam room.  Delays in proper treatment, even just a few minutes, may result in death or permanent injury.

4)   "Clock-stopped" breaks as needed for management/evaluation of symptoms.  In the event of minor symptoms, the student must be allowed a break in order to assess risk and to undertake appropriate intervention with the clock stopped on the examination.  Such intervention may require washing effected skin, changing contaminated clothing, consulting with a parent regarding medication, using an inhaler, or seeking fresh air.  Under no circumstances should the student be allowed to do any of those things without another person being aware of the reason for the break, the student's location, and his/her status at all times.  Allergic reactions can quickly escalate, becoming life-threatening without warning.  If the student requires oral antihistamines to treat a minor reaction, s/he will consider the fact that the cognitive impairment that these medications induce (which generally lasts 4-8 hours) may invalidate the results of testing.

5)   The proctor must be prepared to recognize and respond to anaphylaxis by using an epinephrine autoinjector and then immediately calling 911 from the test site.  The student and her parents will provide education to the proctor to aid him/her in recognizing the warning signs of anaphylaxis and the correct use of an epinephrine autoinjector.  In the event of anaphylaxis, the student must be treated with epinephrine in situ and immediately transported to the nearest emergency room via EMS; delays in treatment may result in death or permanent injury, and persons experiencing severe anaphylaxis may rapidly become incapacitated and unable to initiate treatment. It is also extremely important that a person experiencing anaphylaxis not be moved to an upright position or allowed to walk or stand, as this can result in immediate cardiac arrest.   In the event of anaphylaxis, the student will clearly be unable to complete the examination; his/her scores should be invalidated and, if possible, s/he should be reseated to take the exam at a later date.




That's what DH and I came up with as a succinct but crystal clear set of explanations and justifications.  We already know that this is going to result in individual testing-- just as with Type I students, that's actually the most appropriate thing for a student that may have to evaluate a medical condition during the exam.  I provided this document to (initialy somewhat clueless) school counselor, who now understands the nature of the restrictions imposed by LTFA-- and the specific need for each accommodation.  I have hope that this means that he'll be able to help us; at least now he's willing (whereas before he was somewhat skeptical, frankly).

[CMdeux]

Our physician (remember, he's the totally AWESOME allergist that had no problem simply printing out the FAS gold-standard '504-qualifier' and signing it) is getting the following cover letter:



{Dr. Awesome},

We have an appointment for {date}, but it may be helpful for you to have some information about the purpose of our visit beforehand.  We need updated documentation for {student}'s 504 eligiblity/plan, and also for the College Board, as {student} begins standardized testing in high school.  I expect that the former will require little more than updating the letter that you provided in {year} (included).  I do not know of any instances in which the College Board has granted special testing accommodations specifically for a life-threatening food allergy; {student} may well prove to be the first such case. 

We will need particular documentation of the nature and extent of {Student}'s qualifying disability for the College Board.  This is necessary to secure an appropriate testing environment during the PSAT, SAT, and AP exams.  {Student} will take the PSAT/NMSQT next October, providing that accommodations can be worked out prior to the registration dates (starting in August). Their requirements are beyond the ADA and ADAA standard to demonstrate functional limitation, and the process is lengthy; as much as eight weeks for an initial determination (which may be denied and need to be resubmitted with different verbiage or documentation).  This process is less than clear when it comes to accommodating chronic medical conditions and there is little guidance as to proper documentation and verbiage.  Most of the official guidance simply doesn't apply to chronic physical conditions at all. I've included the information provided by the College Board, though I found it frustratingly vague.  Lacking a template/example, I've been adapting the strategies used by families with Type I diabetes since many of the accommodations are of a similar nature.  I've also included documentation that seems to have been successful for those students, because the verbiage that the College Board is apparently seeking is not obvious, by any means.

Finally, I've included a summary of {student}'s particular "functional limitations" (the parlance of the College Board) and the justifications for particular testing accommodations that are natural extensions of those limitations.   We will need something like this from you if we are to obtain appropriate testing accommodations for {student}.  It must be quite plainly-worded and specific with respect to accommodations, since her 504 plan alone doesn't include a lot of guidance on the subject (the school never assumes duty-of-care, so it isn't necessary as long as they do individual testing, which is how her 504 plan is written).   We will have the assistance of {student}'s school counselor, though this counselor is new to the position, does not fully understand the nature and impact of food allergy, and given the nature of virtual schooling will not be "on-site" for the testing location. 

I can provide you with electronic copies of any of the materials that I've included, either via e-mail or on a USB drive.

Thank you, as always,


{Us}

[DrummersMom]

Thanks for sharing your experience. I am beginning this process for my DD who has a 504 for anxiety, not food allergies. She won't take PSAT for two years but her school suggested we start the process now. Hopefully, they will be as helpful when we begin the process for DS with FAs in five years.

[CMdeux]

There is some good news, at least unofficially!

When the school counselor spoke with someone at the College Board, they agreed that (based on our no-holds-barred outlay of daily impact and justifications for accommodation) that this all seemed quite straightforward and reasonable.

Keeping my fingers crossed that it still seems that way after next week, but that is at least some good news.

[CMdeux]

Okay, this is one of the documents from the diabetes parent-forum linked above:



Update:

It is necessary for your specialist physician to sign a letter specifically stating much of the following--



Re: [Child's name],

Please find below information to support the Student Eligibility Form for Accommodation on College Board Tests based on Medical Disability for {Diagnosis/condition}.


1. State the specific disability, as diagnosed:
Specific, but succinct detailed description of disability.  E.g.-- Type I diabetes mellitus; requirement for disease management including blood glucose (sugar) testing and management of insulin pump and insertion site.

2. Current status:
E.g.--
[Child's name] has Type I diabetes, which is a chronic disease without remission.  Type I diabetes requires testing of blood sugars and administration of injected insulin multiple times a day, both scheduled and on an as needed basis. The patient was last seen in the [Name clinic or doctor ] on [date]. At that time her blood sugars and hemoglobin A1c were consistent with the diagnosis of diabetes.  She attends the clinic 4 times a year for follow up and medical management.

3. Provide relevant educational, developmental, and medical history
{brief, just a few sentences, but needs to address the range of impact from a medical standpoint}  E.g.--The patient was diagnosed with type I diabetes in [date of diagnosis], at which time she presented to the hospital with a blood glucose over 500. The patient is currently managed with insulin administered via insulin pump.  She has had a school medical treatment plan in place since that time, and currently has a 504 plan to educational performance due to her medical condition, as well (see attached).

4. Describe the comprehensive testing and techniques used to arrive at the diagnosis:
{diagnostic criteria, the significance of test results or history}

5. Describe the functional limitations

{Must explain in what manner and to what degree the student is "impaired" relative to peers and in the context of daily life/management of the condition.}  E.g.--
The student's medical condition requires that she is able to manage her diabetes by frequently testing her blood sugar, and modifying her insulin dose and food intake. In some cases she may need to change her infusion site.  Immediate response is essential to stabilize functional performance and ensure both short and long term health. These are all medically required activities that take away from test taking time and must be addressed immediately. Additionally, careful management of blood glucose is essential because hypo- and hyperglycemia are associated with decreased cognition (see references below).


6. Describe the specific accommodations requested

Justification may be needed for each if the accommodations are "uncommon" in some way (most physically disabling conditions will be in this category).  E.g.--
The student is NOT requesting extended time, but rather to have frequent and/or extended breaks, if needed, as dictated by her medical condition and specific blood glucose measurements at the time of testing.  In some cases it can take 20 minutes or more for adjustments to take effect.  {For less common or well-understood, or more highly variable conditions, additional justification/explanation may be prudent}.

7. Establish the professional credentials of the evaluator:
(M.D., sub-specialty, etc.)


Sincerely,

Health Care Provider's Name and contact info


(the original document included references, but recall that much, MUCH more official "psych" studies have been conducted re: diabetes than with LTFA.)

Allergist loved the formatting on this document, though he agreed with all of our summary statements and justifications above, as well.  I just need to merge the two documents at this point and let him have them back in order to print them on letterhead.  I'll probably be fishing for reference information as I work on this.   

[twinturbo]

I'd wish her luck but I know she's gonna rock that test.

[CMdeux]

   I think so, too.  (Which is why I'm going to all this trouble, basically... if I didn't think that she were likely to score in the top 1-5%, a few points wouldn't matter so much one way or the other, YK?)



Right now, I am pulling everything into the format that the doc liked, but I need to add some references in there.  I know that they are out there, I just need to FIND them again...

(my apologies, this is a lengthy list; I'll eventually split these out into component posts associated with each reference point)


References:

1.   Future anaphylaxis likely in spite of avoidance.

This, but it also plays to several OTHER points.  Terrific article, really:

Nguyen-Luu NU, Ben-Shoshan M, et al. Inadvertent exposures in children with peanut allergy. Pediatr Allergy Immunol. 2012 Mar;23(2):134-140.

Abstract
To cite this article: Nguyen-Luu NU, Ben-Shoshan M, Alizadehfar R, Joseph L, Harada L, Allen M, St-Pierre Y, Clarke A. Inadvertent exposures in children with peanut allergy. Pediatr Allergy Immunol 2011: Doi: 10.1111/j.1399-3038.2011.01235.x ABSTRACT: Objectives:  To determine the annual incidence, characterize the severity and management, and identify predictors of accidental exposure among a cohort of children with peanut allergy. Methods:  From 2004 to November 2009, parents of Canadian children with a physician-confirmed peanut allergy completed entry and follow-up questionnaires about accidental exposures over the preceding year. Logistic regression analyses were used to examine potential predictors. Results:  A total of 1411 children [61.3% boys, mean age 7.1 yr (SD, 3.9)] participated. When all children were included, regardless of length of observation, 266 accidental exposures occurred over 2227 patient-years, yielding an annual incidence rate of 11.9% (95% CI, 10.6-13.5). When all accidental exposures occurring after study entry and patients providing <1 yr of observation were excluded, 147 exposures occurred over a period of 1175 patient-years, yielding a rate of 12.5% (95% CI, 10.7-14.5). Only 21% of moderate and severe reactions were treated with epinephrine. Age ≥13 yr at study entry (OR, 2.33; 95% CI, 1.20-4.53) and a severe previous reaction to peanut (OR, 2.04; 95% CI, 1.44-2.91) were associated with an increased risk of accidental exposure, and increasing disease duration (OR, 0.88; 95% CI, 0.83-0.92) with a decreased risk. Conclusion:  The annual incidence rate of accidental exposure for children with peanut allergy is 12.5%. Children with a recent diagnosis and adolescents are at higher risk. Hence, education of allergic children and their families is crucial immediately after diagnosis and during adolescence. As many reactions were treated inappropriately, healthcare professionals require better education on anaphylaxis management.

(emphasis mine)  Ding-ding-ding.  This one is a MAJOR winner.   

2.   Anaphylaxis outcomes are unpredictable.

I think that is this one, but I'll check it later:
Sampson HA, Mendelson L, Rosen JP. Fatal and near-fatal anaphylactic reactions to food in children and adolescents. N Engl J Med. 1992;327(6):380-384.
Could be this one instead:
Yunginger JW, Sweeney KG, Sturner WQ, et al. Fatal food-induced anaphylaxis. JAMA. 1988;260(10):1450-1452.

This is the one that pretty much says, Look, you can do everything right, but still have a fatality sometimes.  (This is the scariest freaking article EVER, IMO.) 

Pumphrey RS. Lessons for management of anaphylaxis from a study of fatal reactions. Clin Exp Allergy.2000;30 :1144– 1150

3.   Highest risks for fatality—adolescent, female, previous severe Hx, nut allergy, asthma):

The first of these is the best of them:
Shah E, Pongracic J. Food-induced anaphylaxis: who, what, why, and where? Pediatr Ann. 2008 Aug;37(8):536-41.

Abstract
Food-induced anaphylaxis is a leading cause of anaphylaxis treated in emergency departments and hospitals around the world. Peanuts, tree nuts, fish, and shellfish are the most commonly implicated foods. Food-induced anaphylaxis may occur in any age group and with any food. However, food-induced anaphylaxis fatalities disproportionately affect adolescents and young adults with peanut and tree nut allergy. Individuals who have both IgE-mediated food allergy and asthma are at a higher risk for food-induced anaphylaxis fatality. Delayed administration of epinephrine is also associated with fatal outcome. Often, in fatal reactions, the food allergen is unknowingly ingested away from home, in settings such as restaurants and schools. Although avoidance of food allergens is critical, timely administration of epinephrine is also of great importance in the treatment of food-induced anaphylaxis. Patients, families, and caregivers must be well educated regarding the signs, symptoms and risk factors for anaphylaxis. They must also be counseled on the importance of strict food avoidance of the implicated food allergens, compliance with having self-injectable epinephrine available at all times, and the importance of timely administration of epinephrine, even when cutaneous symptoms are lacking

Muñoz-Furlong A, Weiss CC. Characteristics of food-allergic patients placing them at risk for a fatal anaphylactic episode. Curr Allergy Asthma Rep. 2009;9(1):57-63.

Bock SA, Muñoz-Furlong A, Sampson HA. Fatalities due to anaphylactic reactions to foods. J Allergy Clin Immunol.2001;107 :191– 193


4.   Sampson Pediatrics—Food anaphylaxis, grading chart.(This, by the way, is the source of our community's "plain English" grading chart!)
Sampson HA. Anaphylaxis and emergency treatment. Pediatrics.2003;111 :1601– 1608

5.   Position paper/treatment guidance for diagnosis of food allergy?:

Either of:
Lieberman P, Nicklas RA, Oppenheimer J, et al. The diagnosis and management of anaphylaxis practice parameter: 2010 update. J Allergy Clin Immunol. 2010;126(3):477-480 e1-42.

or
Boyce JA, Assa'ad A, Burks AW, et al. Guidelines for the diagnosis and management of food allergy in the United States: summary of the NIAID-Sponsored Expert Panel report. J Allergy Clin Immunol. 2010;126(6):1105-1118.

6.   DBPC challenge poses unnecessary risk in patients with severe and clear rxn hx.
(well, I think that Pumphrey article from above pretty nicely sums up why THIS is a really crappy way to diagnose a PA in someone who has already anaphylaxed, don't you?  )
Coupled with that one:
van der Zee T, Dubois A, et al. The eliciting dose of peanut in double-blind, placebo-controlled food challenges decreases with increasing age and specific IgE level in children and young adults. J Allergy Clin Immunol. 2011 Nov;128(5):1031-6. Epub 2011 Aug 31.

Mankad VS, Williams LW, et al. Safety of open food challenges in the office setting. Ann Allergy Asthma Immunol. 2008 May;100(5):469-74.

7.   Identifying shock vs. anxiety, docs mistake anaphylaxis in emergency rooms

THIS.

Pathophysiology
Anaphylactic mediators cause vasodilation, fluid extravasation, smooth muscle contraction and increased mucosal secretions. Death may occur from hypoxaemia (due to upper airway angioedema, bronchospasm and mucus plugging) and/or shock (due to massive vasodilation, fluid shift into the extravascular space and depressed myocardial function).17 While compensatory tachycardia in response to hypotension is considered a characteristic feature, sudden bradycardia with cardiovascular collapse and cardiac arrest may occur before any skin features become apparent.18 The cause of this phenomenon is unclear, but it is an important clinical feature to recognise in order to avoid making an initial misdiagnosis of a "panic attack" or "vasovagal reaction" in cases where dyspnoea, nausea, anxiety, and bradycardia may occur just before cardiovascular collapse.

Brown SGA, Mullins RJ, Gold MS. Anaphylaxis: diagnosis and management. Med J Aust 2006; 185 (5): 283-289. 


Not exactly, but related to this notion of rapid cardiovascular incompetence leading to death outside of hospital settings, esp. when laypersons are required to 'evaluate' and decide whether or not such a reaction is or is not anaphylaxis:

Simons FE. Anaphylaxis, killer allergy: long-term management in the community. J Allergy Clin Immunol.2006;117 :367– 377


8.   Anxiety impairs performance?

Staal, M. Stress, Cognition, and Human Performance: A Literature Review and Conceptual Framework, NASA Ames Research Center, 2004. retrieved from www.human-factors.arc.nasa.gov April 2, 2012.


Duncko, R., Johnson, L., Merikangas, K., & Grillon, C. (2009). Working memory performance after acute exposure to the cold pressor stress in healthy volunteers. Neurobiology of Learning and Memory, 91, 377–381.

Lee, J. H. (1999). Test anxiety and working memory. Journal of Experimental Education, 67, 218-225.

Park, C. R., Zoladz, P. R., Conrad, C. D., Fleshner, M., & Diamond, D.M. (2008). Acute predator stress impairs the consolidation and retrieval of hippocampus-dependent memory in male and female rats. Learning and Memory, 15, 271-280.

Baddeley, A., Eysenck, M. W. & Anderson, M. C. (2010). Memory. Psychology Press: New York.

Jelicic, M., Geraerts, E., Merckelbach, H., Guerrieri, R. (2004). Acute Stress Enhances Memory For Emotional Words, But Impairs Memory For Neutral Words. International Journal of Neuroscience, 114, 1343- 1351.
9.   Ignoring symptoms in adolescents?  "Toughing it out" syndrome & anxiety-- psychological factors, basically--

Not specifically about this particular thing, but more about "risk taking" and "peer pressure" which of course is related--

Anaphylaxis in Schools & Other Settings, 2nd Edition Revised, Canadian Society of Allergy and Clinical Immunology. 2005.

Similarly (and I'm following the citations trail from this one here):

Marklund B, Wilde-Larsson B, et al. Adolescents' experiences of being food-hypersensitive: a qualitative study. BMC Nursing 2007, 6:8
(That one is a real treasure trove, by the way.)

Steinberg L. Risk Taking in Adolescence. What Changes, and
Why? Ann N Y Acad Sci 2004, 1021:51-58.

Steinberg L: Cognitive and affective development in adolescence.
TRENDS in Cognitive Sciences 2005, 9(2):69-74.

10.   Early treatment = better outcomes.  Delays = deaths.
Simons KJ, Simons FE. Epinephrine and its use in anaphylaxis: current issues. Curr Opin Allergy Clin Immunol. 2010;10(4):354-361.

11.   Dey—how to use an autoinjector

12.   Standing up during shock = cardiac arrest.
Pumphrey RS. Fatal posture in anaphylactic shock. J Allergy Clin Immunol.2003;112 :451– 452

Brown SG. Cardiovascular aspects of anaphylaxis: implications for treatment and diagnosis. Curr Opin Allergy Clin Immunol. 2005; 5(4):359-64.




I'll have to come back to this later and fill in the references in the list.  The only ones that I know I'm going to be digging for are 6 and 9, but I've seen them published before, so I'm pretty sure that the info is out there.



And on a related note... this is the reference that I wanted to pull out of my purse for DD's surgeon the other day...

Dewachter P, Jouan-Hureaux V, Franck P, et al. Anaphylactic shock: a form of distributive shock without inhibition of oxygen consumption. Anesthesiology 2005; 103:40. 

and this one--

Pumphrey RS, Roberts IS. Postmortem findings after fatal anaphylactic reactions. J Clin Pathol 2000; 53:273.

Most notably--

CONCLUSIONS: In many cases of fatal anaphylaxis no specific macroscopic findings are present at postmortem examination. This reflects the rapidity and mode of death, which is often the result of shock rather than asphyxia.

Yes, that's right.  Fully competent airways and cardiovascular collapse.  NOT mutually exclusive things.  Who knew??   




Finally, even MILD symptoms (treated or untreated) negatively impact performance:

Walker S, Khan-Wasti S, et al. Seasonal Allergic rhinitis is associated with a detrimental effect on examination performance in United Kingdom teenagers: Case control study. J Allergy Clin Immunol. 2007 Aug;120(2):381-7. Epub 2007 Jun 8.

The reason why that one is ultimately important is that most "inhalation" reactive patients aren't considered (at least officially) to be at "real risk" of anaphylaxis from such exposure, which is generaly regarded as "annoying" and not particularly 'dangerous' in nature.  This may be true, but in an exam setting, "annoying" is enough to impair performance significantly. 


I'm still hunting references re: fear and impairment at cognitively demanding tasks.  It's there, but it's also indirect.  The military and NASA have both studied it, for obvious reasons.  Anxiety isn't the same phenomenon as "fear" in physiological terms.  Smelling a potent allergen during a high-stakes, stressful situation is regarded by the amygdala as "important!  Drop everything NOW-NOW-NOW" and is pretty much physiologicaly impossible to "tune out" in order to focus attention on the cognitive tasks requiring working memory.  Having a lot of trouble finding applicable resources for that one, though.  Mostly because it's a highly challenging thing to study, which is the same problem that NASA and the Air Force have had with it.  It's unethical to make someone fear for their life while you are demanding their "best" otherwise.   

[Mfamom]

Good Job!!  Wow, very thorough, well thought out.  You put a lot of time in this and I appreciate you sharing with us. 

[CMdeux]

Okay-- more about processing and 'acute stress' (or basically, threat-perception);

van Marle HJ, Hermans EJ, et al. From specificity to sensitivity: how acute stress affects amygdala processing of biologically salient stimuli. Biol Psychiatry. 2009 Oct 1;66(7):649-55. Epub 2009 Jul 12.


Interesting.  Basically, this says that your brain tends to become pretty damned FIXATED on threats, and become 'primed' to see everything that way, fixating on evaluation of danger/risk to the exclusion of other activities...  (Duh.  Who knew??)

RESULTS: A variety of physiological and psychological measures confirmed successful induction of moderate levels of acute stress. More importantly, this context manipulation shifted the amygdala toward higher sensitivity as well as lower specificity, that is, stress induction augmented amygdala responses to equally high levels for threat-related and positively valenced stimuli, thereby diminishing a threat-selective response pattern. Additionally, stress amplified sensory processing in early visual regions and the face responsive area of the fusiform gyrus but not in a frontal region involved in task execution.

CONCLUSIONS: A shift of amygdala function toward heightened sensitivity with lower levels of specificity suggests a state of indiscriminate hypervigilance under stress. Although this represents initial survival value in adverse situations where the risk for false negatives in the detection of potential threats should be minimized, it might similarly play a causative role in the sequelae of traumatic events

[CMdeux]

More on olfactory threat-perception in particular:

Elizabeth A. Krusemark, Wen Li. Enhanced Olfactory Sensory Perception of Threat in Anxiety: An Event-Related fMRI Study. Chemosensory Perception, 2012; 5

It is really important to know that this is a direct line to the meso-limbic brain in understanding the (probably) profound cognitive impairment induced by 'smelling' an anaphylaxis trigger.  There is almost no way for the cortical regions of the brain to 'over-ride' this kind of input in order to function completely normally.  It'd be like ignoring someone screaming profanities and waving a gun within a few feet of you.    Seriously.

In animal studies, this kind of input (predator scent, basically) has really profound impact on behavior.    Olfaction also has a significant ability (beyond other sensory inputs, according to some researchers) in triggering PTSD episodes.  Obviously the PTSD association probably isn't valid for someone who hasn't experienced severe anaphylaxis, but it very well could be for someone who has.


(I've been kind of digging getting to know the research in this area after spending over a decade away from the field of neuroscience research.  Really interesting stuff-- once subjects associate olfactory inputs with threat, their powers of discrimination and detection become pretty super-human-- and very accurate, even to the point of differentiating sterioisomers which are classed as "non-differentiable" believe it or not.  It's fascinating.  I think that it goes a long way to explaining "that smell" that some allergic people experience with their food allergens.      I might pass that along to our allergist just for fun, even though it doesn't really have a place in the official packet for the College Board or our 504 team. )

[CMdeux]

Taking a deep breath...


This is the finished document.



Re: {Student name},

Please find below information to support the Student Eligibility Form for Accommodation on College Board Tests based on Medical Disability (Life-Threatening Food Allergy/Anaphylaxis).

1. State the specific disability, as diagnosed.

{student} has food-induced life-threatening anaphylaxis to {allergens}.  Management requires avoidance of all ingestion, inhalation, or contact with allergens.  This task requires continuous risk management in surroundings, avoidance of known/observed risks, and evaluation of possible symptoms of emergent anaphylaxis.  Most critically, proper management requires the understanding that future anaphylaxis is likely in spite of avoidance (1).  Patients and their families must always be prepared to rapidly treat anaphylaxis with life-saving medications and to seek professional emergent medical care.  Anaphylaxis may result in death or permanent injury within minutes; appropriate response reduces the likelihood of poor outcomes, but anaphylaxis may be fatal in spite of optimal care (2, 3).

2. Current status

{student}'s history and test results (RAST, skin-prick testing) indicate that her allergies must be regarded as life-long and life-threatening.  Management requires aggressive measures to reduce her risks of exposure, such as: a) avoiding areas where allergen consumption is ubiquitous, b) frequently washing her hands and surfaces, or requesting that others do so, c) carrying safe food and drink as needed/anticipated, and/or d) leaving environments which she has reason to regard as unsafe.  She always carries emergency medications (epinephrine autoinjectors, bronchodilators) to treat anaphylaxis and a means (cellular phone) to call for emergency medical assistance and transportation to the nearest hospital.  She takes daily antihistamines to minimize allergic sensitivity, but this does not mitigate anaphylaxis risk.  {student} is seen by a board certified allergist at least biannually for management advice, testing as needed, and evaluation. She was last seen by {Dr. Awesome} on {date}. 

3. Provide relevant educational, developmental, and medical history

{student} has required emergency medical care for anaphylaxis on multiple occasions.  She has a history of rapidly progressing anaphylaxis involving the gastrointestinal, skin, respiratory and cardiovascular systems.  Due to this reaction history and her age she is at elevated risk of fatal anaphylaxis (3, 4).  {statement of educational history}  {Student} has had an active 504 plan which addresses {specific areas} since {date}.  That plan is current and will be (was) reviewed on {Date} (see attached).

4. Describe the comprehensive testing and techniques used to arrive at the diagnosis:

{Student} was diagnosed with life-threatening food allergies at the age of 11 months, following emergency medical care for peanut-induced anaphylaxis.  Since that time, she has also been diagnosed with life-threatening allergies to tree nuts (almonds, cashews, pistachios, etc) and eggs.  She has experienced several life-threatening allergic reactions.  {Student} has a clinical history of reactivity to ingestion of microscopic quantities of allergens, contact with allergens, and inhalation of allergens.  {Student's} history includes reactions which feature many of the clinical observations known to be associated with food anaphylaxis (5).  Current best practices (6) indicate that clear patient history of severe reaction, confirmed by skin prick testing or allergen-specific RAST to evaluate blood IgE levels, is an adequate means of diagnosing a life-threatening food allergy.  {Student} has a history ranging from localized reactions through life-threatening anaphylactic responses to multiple routes of exposure (ingestion, contact, and inhalation).   With {student}'s reaction history, she is not a candidate for a food challenge (6-8).   Skin prick testing and/or IgE values have confirmed the diagnosis suggested by her clinical history with peanut, tree nuts, and egg.  Accidental exposures and reactions have occurred with unfortunate regularity in spite of good compliance with avoidance measures, indicating that there is little reason for annual diagnostic testing for peanut or tree nuts at this time.

5. Describe the functional limitations

Risk of anaphylaxis is ever-present, regardless of environment or activities, though the relative level of danger may rise or fall depending upon strict environmental controls of the allergen(s) and the individual's physiological state, which can vary unpredictably.  A person with life-threatening food allergies must regard all food, even that consumed by others, as a potential risk to immediate safety.  A person with high sensitivity or documented reactivity to contact alone, such as this student, must additionally regard all surfaces touched by others as potentially contaminated outside of his/her own home (if allergen-free).  Such individuals will often be distressed by smelling an allergen (it is not unusual for those with immediate hypersensitivity to food allergens to have accurate but extremely heightened awareness of the scent of an allergen).  This type of anxiety is not irrational, given that the affected person senses proximity to a substance that they are fully aware (both viscerally and rationally) can kill them in microscopic quantities within minutes, and that the individual must consider that this allergen is likely to be lurking on surfaces nearby if it can be smelled.

This student has experienced severe anaphylaxis from occult/casual exposures on multiple occasions, and in most instances a cause could never be identified.  Once systemic allergic symptoms begin, no matter how mild, it is impossible to know how the reaction will progress, particularly when no cause is obvious.  For this reason, all allergy symptoms must be treated as possible precursors to life-threatening anaphylaxis.  An additional concern is that this student has presented with atypical anaphylaxis (CNS and cardiac features, without airway or skin symptoms), which is extremely difficult for even highly skilled observers to identify in a timely fashion (3, 8).  Such anaphylaxis may initially be erroneously dismissed as anxiety, even by the person experiencing it; this is clearly much more probable in a situation which is plausibly anxiety-provoking and in any situation where pausing to evaluate symptoms has a high cost.  If the symptoms are not test anxiety, but anaphylaxis-induced shock, such an error might easily be fatal.
  During singular, important events such as testing via the College Board's examinations, it is prudent to avoid any risk which can realistically be mitigated or minimized in order to reduce the opportunity for such confusion.  This allows the student the same opportunity for success as that afforded to her unaffected peers, and reduces the chance for disruption for other participants. 


6. Describe the specific accommodations requested

Necessary accommodations:

1)   The environment must be as free from food and food residue (traces, smells, etc.) as is practical.  The student must have time before the examination begins to decontaminate the surfaces that s/he is likely to touch during the course of testing, and no other persons should subsequently have the opportunity to touch those surfaces during the examination period.  Surfaces may be contaminated unknowingly by any person who has food residue (even invisible traces) on his/her hands and subsequently touches other surfaces or objects.  This student has demonstrated that she has a very low threshold dose necessary to elicit a severe reaction—quantities too small to be seen with the naked eye.  This student's history strongly suggests that this type of exposure poses a real risk in any crowded or uncontrolled environment in which others are, or have been, eating an allergen or a food which contains one.  Areas used for food preparation or consumption are not suitable.   Risk of provoking anaphylaxis—or the anxiety that it might be provoked--must be minimized as much as is feasible, given the high-stakes nature of testing and the difficulty/impossibility of rescheduling.  Crushing anxiety as a result of being trapped in a space which is obviously (to the allergic person) heavily contaminated would impose an undue burden on the student and could also substantially impair his/her performance (9, 10).  In addition, such a high-stakes situation often provides an incentive to the student to ignore symptoms, hope to "tough it out" and delay proper treatment.   Adolescents in particular do not weigh risks ideally at the best of times, and less so when under stress (11-13).  It is worth noting that {student} is not yet thirteen years of age, and her relative immaturity may enhance those already significant issues.


2)   Emergency medications (epinephrine, oral antihistamines, topical antihistamines, rescue inhaler, etc.) must remain accessible to the student.  A means of contacting emergency responders (and parents) must also be available in the exam room.  Delaying treatment, even just a few minutes, may result in death or permanent injury (2-5, 8, 14, 15).

3)   "Clock-stopped" breaks as needed for management of symptoms.  In the event of minor symptoms, the student must be allowed a break in order to assess risk and to undertake appropriate intervention with the clock stopped on the examination.  Such intervention may require washing effected skin, changing contaminated clothing, consulting with a parent regarding medication, using an inhaler, or seeking fresh air. The proctor must be aware of the reason for the break, the student's location, and his/her status at all times.  Allergic reactions can quickly escalate, becoming life-threatening without warning.  If the student requires oral antihistamines to treat a minor reaction, or is experiencing significant allergy symptoms, s/he will consider the fact that the cognitive impairment thus induced may invalidate the results of testing(16).

4)   The proctor must be prepared to recognize and respond to anaphylaxis by using an epinephrine autoinjector and then immediately calling 911 from the test site. Given that it is impossible to make the risk of anaphylaxis negligible, a responsible adult who has some knowledge how to recognize and respond to anaphylaxis must be present with the student.  During anaphylaxis, impairment can be so profound and so rapid that the student may not be competent to initiate treatment.  Delays in treatment—even just minutes—may result in death or permanent injury.  The student and her parents will provide education to the proctor to aid him/her in recognizing the warning signs of anaphylaxis (5, 14) and the correct use of an epinephrine autoinjector(15).  In the event of anaphylaxis, the student must be treated with epinephrine in situ and immediately transported to the nearest emergency room via EMS; delays in treatment may result in death or permanent injury, and persons experiencing severe anaphylaxis may rapidly become incapacitated and unable to initiate treatment. It is also extremely important that a person experiencing anaphylaxis not be moved to an upright position or allowed to walk or stand, as this can result in immediate cardiac arrest (17).   In the event of anaphylaxis, the student will clearly be unable to complete the examination; her scores should be invalidated and, if possible, s/he should be reseated to take the exam at a later date.


7. Establish the professional credentials of the evaluator:

Awesome Person, M.D.
Diplomate, American Board of Allergy and Immunology.







References:

1.   Nguyen-Luu NU, Ben-Shoshan M, et al. "Inadvertent exposures in children with peanut allergy." Pediatr Allergy Immunol. 2012 Mar;23(2):134-140.

2.   Pumphrey RS. "Lessons for management of anaphylaxis from a study of fatal reactions." Clin Exp Allergy. 2000;30 :1144– 1150

3.   Pumphrey RS, Roberts IS. "Postmortem findings after fatal anaphylactic reactions." J Clin Pathol 2000; 53:273.

4.   Shah E, Pongracic J. "Food-induced anaphylaxis: who, what, why, and where?" Pediatr Ann. 2008; 37 (8):536-41.

5.   Sampson HA. "Anaphylaxis and emergency treatment." Pediatrics.2003;111 :1601– 1608.


6.   Lieberman P, Nicklas RA, Oppenheimer J, et al. "The diagnosis and management of anaphylaxis practice parameter: 2010 update." J Allergy Clin Immunol. 2010;126(3):477-480 e1-42.

7.   van der Zee T, Dubois A, Kerkhof M, et al. "The eliciting dose of peanut in double-blind, placebo-controlled food challenges decreases with increasing age and specific IgE level in children and young adults." J Allergy Clin Immunol. 2011;128(5):1031-6. Epub 2011 Aug 31.

8.   Brown SGA, Mullins RJ, Gold MS. "Anaphylaxis: diagnosis and management." Med J Aust 2006; 185 (5): 283-289. 

9.    Staal, M. Stress, "Cognition, and Human Performance: A Literature Review and Conceptual Framework," (2004) NASA, Ames Research Center. Retrieved from www.human-factors.arc.nasa.gov April 3, 2012.

10.   Duncko, R., Johnson, L., Merikangas, K. et al. "Working memory performance after acute exposure to the cold pressor stress in healthy volunteers." Neurobiology of Learning and Memory 2009;91, 377–381.

11.   Marklund B, Wilde-Larsson B, et al. "Adolescents' experiences of being food-hypersensitive: a qualitative study." BMC Nursing 2007, 6:8.

12.    Steinberg L. "Risk Taking in Adolescence. What Changes, and Why?" Ann N Y Acad Sci 2004, 1021:51-58.

13.    Steinberg L: "Cognitive and affective development in adolescence." TRENDS in Cognitive Sciences 2005, 9(2):69-74.

14.    Simons KJ, Simons FE. "Epinephrine and its use in anaphylaxis: current issues." Curr Opin Allergy Clin Immunol. 2010; 10(4):354-361.

15.   "How to Use EpiPen." www.epipen.com/how-to-use-epipen; Retrieved April 2, 2012.

16.   Walker S, Khan-Wasti S, et al. "Seasonal Allergic rhinitis is associated with a detrimental effect on examination performance in United Kingdom teenagers: Case control study." J Allergy Clin Immunol. 2007; 120(2):381-7. Epub 2007 Jun 8.

17.     Pumphrey RS. "Fatal posture in anaphylactic shock." J Allergy Clin Immunol.2003;112 :451– 452





Wow.  It's a baby review article!      

Cheeky of me to provide this to the allergist?  Oh, sure.  It might be if we didn't know one another so well.  But odds are good that he's read most of those references himself anyway and will recognize them immediately.  (I don't think that I quoted him as an author anywhere... but he might be on the practice parameter.)

Fair to say that I don't think that the College Board can complain that they haven't been given more than adequate documentation.  LOL.

[CMdeux]

I will now type up the original-- and then the revised version-- of the magical eligibility letter. 

Hopefully we can get that posted here so that others starting out with their schools can have a great example to work from.

[Carefulmom]

CM Deux, just so you know, they are not allowed to eat in there.  I don`t think it will be that bad for your dd.  She would just need to clean her desk really well, maybe ask anyone who is passing out the test to wash hands or use wipes if she is worried about residue on the test papers.  You could probably sit outside the room and read for four hours (actually the test was more like 4 3/4 hours, because there were experimental questions) and thus eliminate needing an epi trained person.  I wouldn`t suggest that if this were an ongoing situation like a class, but it might make it easier for you.  I realize it is their legal responsibility to have an epi trained adult there, just saying it`s one morning out of her life and once you make them aware of her disability, I don`t think it will be that hard to get a few accomodations.  I wasn`t sure if you knew how strict they are about the eating.  It really is impossible to eat in there.  And no issue with bringing her meds and cell phone.  All the girls brought purses, tote bags, etc.  The kids were not allowed to access it during the exam (obviously).  I cannot imagine for the few accomodations that she will need that the testing people will give you a hard time.  Really it is just a few small things that she needs beyond what is normally allowed.