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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.
Abstract(emphasis mine) Ding-ding-ding. This one is a MAJOR winner. :yes:
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.
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
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.
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.
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
DD really does have a lot of trouble in environments where people have been allowed to eat food over a long period of time, and she really does not always present with symptoms that (even to her) necessarily seem really obviously "allergic" in nature until she's more or less incapacitated.
Oh, yes, I know that you weren't. :)
Yeah, not sure if the point difference in that anecdote was about blood glucose or repetition. No way to know, but the young man's perception was that it was blood sugar related.
The PSAT is about 3 h including breaks. You'd better believe that I'm right outside... and I'll make that clear when we arrange a testing site and when we speak to the proctor the morning of.
The nice thing about doing this through the College Board (as opposed to ACT) is that you really only have to go through the application process ONCE.
Just once, and with approval, the student has it already in-hand for AP exams, PSAT, SAT, etc. I'm not sure if it carries over to ETS exams or not, but clearly for college-bound kids, it really makes sense to go to the trouble.
{Counselor firstname},
I'm sending this to you since {504C firstname} is apparently out for the rest of the day and didn't respond to my inquiry before she left.
Do you have any idea why this has become an eligibility (as opposed to "review") meeting? Eligibility should not be in question given the nature of {DD}'s disability. What have I missed here?
Do you know which time is correct? {504C firstname}'s earlier webmail had us meeting at {time}, and this one indicates {earlier time}.
Thanks,
{My firstname}
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.
Also, about the PSAT and scholarships, in this day and age, there is very little money given out based on PSATs, almost none. You have to be in the top fraction of 1% (don`t recall if it was 0.1% or even less) and the amount was about $1000. However, this may be California specific. You may want to check on your state. If there is that little riding on your dd`s results, she can relax about the test.
Also, about the PSAT and scholarships, in this day and age, there is very little money given out based on PSATs, almost none. You have to be in the top fraction of 1% (don`t recall if it was 0.1% or even less) and the amount was about $1000. However, this may be California specific. You may want to check on your state. If there is that little riding on your dd`s results, she can relax about the test.
That's true. I think I got $2000 a year from it.
Also, about the PSAT and scholarships, in this day and age, there is very little money given out based on PSATs, almost none. You have to be in the top fraction of 1% (don`t recall if it was 0.1% or even less) and the amount was about $1000. However, this may be California specific. You may want to check on your state. If there is that little riding on your dd`s results, she can relax about the test.
Also, about the PSAT and scholarships, in this day and age, there is very little money given out based on PSATs, almost none. You have to be in the top fraction of 1% (don`t recall if it was 0.1% or even less) and the amount was about $1000. However, this may be California specific. You may want to check on your state. If there is that little riding on your dd`s results, she can relax about the test.
That varies tremendously from state to state and school to school. Being a NMF paid more than a quarter of my (private) college tuition; this was 2000-2004. If I'd gone to a state school in FL, I'd have gotten a full ride on that basis alone.
Ack. GGA. Not the "A" team has just taken on a whole new dimension of absurdity. I'm clearly dealing with Abbott and Costello here.Good golly, the draft that they sent had all kinds of dorky changes, most of them completely out of left field and unrelated to anything discussed in the 504 review meeting from Tuesday.
:banghead:
More later.
Abbott and Costello;
Briefly, my concerns regarding the new draft document dated April 2012 are:
a) Grade level. I'm not clear on precisely when this document is intended to take effect, but it is quite important to us that {DD}'s grade level remain "9" through the end of this academic year. She will otherwise lose an additional year of eligibility with some particular extracurricular activities, and because of her multiple radical accelerations, she's already lost several.
b) Impairment and Life Activities Impacted-- There are some problems with the verbiage in the impairment description. I'm sorry, but I'm a little particular about these statements, and I know that her allergist is as well. "{DD} has been DIAGNOSED WITH AND HAS A HISTORY OF severe food allergies (anaphylaxis). When EXPERIENCING ANAPHYLAXIS, she is profoundly impaired in all life activities. Her HISTORY AND DIAGNOSIS (multiple severe food allergy, asthma) places her at elevated risk of fatal anaphylaxis."
{the caps there were to fix new and incredibly screwed up verbiage that demonstrated a pretty profound lack of understanding of the nature of LTFA}
Secondly, the passage of ADAA in 2008 has resulted in a need to consider episodic conditions, meaning that the life-activities listed under qualification must be those which would be impaired "if the condition were active." Anaphylaxis very definitely impairs pretty much everything on that list. It's hard to imagine a more pervasive set of impairments that full body shut-down of multiple organs. Episodic? Certainly-- and until 2008, the items currently listed would have been complete and sufficient under the law. This is not in compliance with current legislation, however.
Finally, under "Breathing" in the notes, this information is not correct. {DD}'s asthma is episodic and quite well-controlled. What *can* limit her ability to maintain a regular study schedule for weeks is the course of treatment following anaphylaxis. The medications taken to prevent relapse or death can impact executive function and cognitive skills for an extended period of time.
c) Curriculum Accommodations and/or Modifications: the verbiage on the provision of wet-wipes has been changed from "{school} will provide" to "parents will provide." This is incorrect. {National} has been through this particular accommodation (presumably with legal) and it MUST not be in writing that *we* are obligated to additional expense for {DD}'s participation. We may *choose* to provide wipes, or to donate them. (And we often do.) But we cannot be obligated to do so because it is a violation of FAPE.
d) Curriculum Accommodations and/or Modifications: if you've seen my note from late Tuesday, I still believe that an addendum regarding "daily work" and the environment that is required might be added. Yes, I know that the school is obligated to do very little there, but I think that it is a missing piece for the College Board, since familiarity with virtual schooling may well be somewhat fuzzy for outsiders.
e) Curriculum Accommodations and/or Modifications: "testing" in the context of curriculum accommodations and/or modifications cannot, in my own understanding, include modifications to the practices, policies, and procedures of those agencies not affiliated with {school} in pursuit of meeting {DD}'s educational needs to the same degree as her unaffected peers. I'm not convinced that colleges and universities, much less the College Board, can be covered here. Perhaps for an AP examingation, yes. I feel that it would be better to indicate the basic NEEDS which must be met routinely for all assessment, and to explain how those needs are currently met by us. That is, we as partners supply an allergen-controlled environment at all times (materials and environment), and parents alone supply any necessary oversight and medical evaluation.
The paired statements in d) and e) do not overstep the bounds of the family-school partnership. I am concerned that the current statement in the draft *does* do so. We can't dictate conditions to external agencies without input from them, and I have concerns that this current document may do that. It also includes accommodations which are not in place at all, and won't ever be, given the nature of virtual schooling. This doesn't meet the standard of "necessary" in the context of FAPE and LRE with {SCHOOL}. Ergo, I'm not sure that it properly has a place in her 504 plan. Adjusting the verbiage so that it better matches the terminology in the document submitted to the College Board is fine, but we're getting the cart in front of the horse, here, I think. The 504 plan is about {DD}'s educational access via {School}, so accommodations needed from the College Board shouldn't be driving accommodations in this document. Technically, since {Another magically appearing accommodation that has been in place for years but was never in writing} isn't about disability accommodation but about GT accommodation, I'm not sure that even that belongs in here, unless we are going to roll gifted needs into this document. I'm fine with that approach, though the more obvious route to GT accommodations is via an IEP.
f) Notes: {DD}'s percentage hasn't been %% in several years (if ever), at least not until sometime yesterday. It most properly isn't NOW, either, if not for the fairly zealous application of "temporary zeros" by one teacher in particular, and on a single assignment which is not yet a week overdue and requires us to make a trip to check out materials at a local research university. {please note that there ARE no 'official' due-dates for assignments anyway in DD's school given the way it operates} We've had to fit this trip in around her other academic and extracurricular obligations and numerous medical appointments, and our family's other obligations. I think it is fair to see how that might take additional time. I am not at all happy about this percentage being unfairly reported in this document. If the College Board is going to see this, then let them see reality, at least. That percentage is continuously something like {+10% higher percentage}, a fact that her transcripts reflect much more accurately. The current statement is therefore misleading and also potentially deeply damaging to {DD}'s credibility. {Identifyin statements} and there is nothing borderline about her qualifying academic performance in earning that honor. I realize that neither of you is especially familiar with {DD} as a student at this time, and also that for many students, such an average would be cause for delight-- but I noted that statement with horror. I suspect that {teacher} would be equally horrified to know what potential trouble a single temporary zero inadvertently caused.
Do we need an additional meeting to discuss this? Hopefully my explanations for each item above make sense. I apologize for the length of this message, but I wanted to be very clear about my objections and the reasons for each.
Thank you for your continued hard work on this document,
CM
| 2013-2014 Test Dates | Accommodations Request and Documentation (Where Required) Must Be Received by: |
| SAT® and SAT Subject Tests™ October 5, 2013 October 6 | August 16, 2013 |
| PSAT/NMSQT® October 16 and 19, 2013 | August 28, 2013 |
| SAT and SAT Subject Tests November 2, 2013 | September 13, 2013 |
| SAT and SAT Subject Tests December 7, 2013 | October 18, 2013 |
| SAT and SAT Subject Tests January 25, 2014 | December 6, 2013 |
| SAT March 8, 2014 | January 17, 2014 |
| SAT and SAT Subject Tests May 3, 2014 | March 14, 2014 |
| Advanced Placement Program® (AP®) May 5–9, 12–16, 2014 | February 21, 2014 |
| SAT® and SAT Subject Tests™ June 7, 2014 | April 18, 2014 |
Send all materials to ACT, Attn: National Standard Time with Accommodations, PO Box 168, Iowa City, IA, 52243-0168, postmarked by the registration deadline for your preferred test date. Requests postmarked after the regular deadline, but received by the late deadline, will be processed. Forms received after the late deadline will be processed for the next test date.
What we asked for.
--he be able to have two autoinjectors on his person during testing
--food free room, including the proctor (of course, if another student's accommodations include food, we fully understand)
--the proctor have a working, charged cell phone to use in case of emergency
--if DS thinks he's having a reaction, he has the ability to leave the room, administer medication and to contact 911 and/or his parents.
--he not be singled out by the proctor of anyone else for his accommodations
--he be allowed to enter the room early to wipe down his desk before the other students enter
If ANYTHING were ever a CLEAR, CLEAR reason to get a 504 plan in place no matter how well things are covered by school policy, though, this is it. One of the easiest ways to be denied by the College Board is to have no 504 plan, or one that has been active less than a year.
I just hope that spurs someone to act while their child is still in elementary-- this stuff really matters later on in terms of history of documented accommodations and longevity of official qualification under 504. :yes: It will matter in college, too.
It takes about 3mo to run through the official process with CB. If she's taking it in October, that ship will have sailed already-- the choices will be: a) take your chances and do it as-is, b) hope to negotiate 'no-food' with test site personnel on the day, or c) skip it.
What's concern in is the possibility of the PSAT being taken in the cafeteria, and it's clear that's been the case for some.
What's concern in is the possibility of the PSAT being taken in the cafeteria, and it's clear that's been the case for some.
They are required to sit each student at a separate desk, so it would be difficult to find a cafeteria that has individual desks rather than the standard cafeteria tables. Normally they divide the students into different classrooms in order to comply with the rule about desks.
What's concern in is the possibility of the PSAT being taken in the cafeteria, and it's clear that's been the case for some.
They are required to sit each student at a separate desk, so it would be difficult to find a cafeteria that has individual desks rather than the standard cafeteria tables. Normally they divide the students into different classrooms in order to comply with the rule about desks.
OK, I received word this morning from the Spec. Ed contact at DD's school that we can still apply for accommodations from the College Board. She is requesting individual testing. I think I should also ask that her meds and phone be kept with the proctor; I'd even suggest that we can put them in a Ziploc so that it's obvious that nothing else was brought in.
I need to contact the director of the school she's applying to, which will be administering the test, to see what accommodations they can grant.
Any other suggestions?
Carefulmom, at our school they are not taken at separate desks. Neither was son's AP test. The lecture hall consists of ten rows of tables. Now, kids are seated far apart from each other. But they are tables.
Food is ubiquitous at our school unfortunately. :/
But DS didn't have trouble during his ap test. He doesn't have trouble going from class to class or sitting at desks in five different classrooms every Saturday at speech tournaments. So I'm not too worried that he needs to wipe things down. Though that was one accommodation for his ACT.
We'll see how it goes. Missing the deadlines for the SAT and the PSAT (he'll take the SAT before the PSAT, lol) were not what I had planned, but I think will work out.
Frankly DS use to keep two epis in pants pockets. If she could find keeping one of them and a phone in pockets comfortable, she could have control in case she needed them.