College Related

[ajasfolks2]

Not sure if somewhere else on board this was posted already (before the event -- which has now passed).

Wanted to be sure it's in Schools.

Preparing the Food Allergic Student
for College and Beyond

                                                October 19th, 2011 at 7:00




Massachusetts General Hospital
O'Keeffe Auditorium
55 Fruit Street
Boston, MA 02114


Please join the MassGeneral Hospital Food Allergy Center and the Food Allergy and Anaphylaxis Network for a program on how to manage food allergies in the college setting.


An expert panel will highlight the process on how to inform colleges of the presence of a food allergy, engage college disability services, notify and provide documentation for college health services, secure a safe housing environment, and coordinate dietary needs with food services and how to discuss with peers.


Featured speakers will include:
Wayne Shreffler, M.D., PhD Director of the Food Allergy Center Mass General Hospital
Marion Groetch, MS, RD, CDN Senior Dietitian Jaffe Food Allergy Institute Mount Sinai School of Medicine New York, NY
Christopher Weiss VP, Advocacy and Government Relations of the Food Allergy & Anaphylaxis Network (FAAN)
Sheila Tucker, MA, RD, CSSD, LDN Boston College Executive Dietitian, Auxiliary Services and Part-time Faculty, Connell School of Nursing
Nancy Rotter, PhD Pediatric Psychologist, Food Allergy Center Mass General Hospital
Laura A. De Veau, M.Ed. Assistant Dean of Students for Residence Life Mount Ida College


The program is free and open to the public.  Seats are limited.




Please RSVP to foodallergy@mgh.harvard.edu or at the
Food Allergy Center at MGH Facebook page

Did anyone here happen to attend? 


My bold and highlighting this from above:


An expert panel will highlight the process on how to inform colleges of the presence of a food allergy, engage college disability services, notify and provide documentation for college health services, secure a safe housing environment, and coordinate dietary needs with food services and how to discuss with peers.

[yellow]

Wonder if they have PowerPoint presentations or a summary that they could email over....

[Carefulmom]

Since we are looking at colleges, I have to say that there is so much more to it than that.  Of the colleges I have called or visited, there is only one that I think could safely prepare a meal for dd (allergic to milk, peanut, avoiding tree nuts).  Really it is like eating in a restaurant three meals a day for four years.  Most of us with MFA kids almost never eat in restaurants with our kids.  I wish it were that easy and involved simply informing them....sigh.  The colleges seem very willing to accomodate, just clueless about cross contamination.  And with something like milk, it is going to be in almost everything.  I would love to go to a presentation like that.

[CMdeux]

Honestly, I'm not sure that it is realistic (other than at a very small institution) to EXPECT that dining halls can get this 100% right for a person who is highly sensitive to a food allergen.  Maybe for a single treenut or for peanut alone.  But for wheat?  For soy, egg, or milk?  They simply CANNOT meet their obligations to the rest of the student population without retaining the use of the allergen(s).



Sure-- it "should" be possible for anyone with any disability to be given a fully inclusive college experience just like their peers--

but realistically?

Nobody should believe that it will actually happen that way day in and day out for four years or more. 

That's like insisting that a Thai restaurant SERVE YOU SAFELY if you have a peanut or shellfish allergy.  Or that a pizza place make you something safe if you have a milk allergy.  KWIM?  Then to expect them to KEEP doing it every day.



With that said-- the HOUSING arrangements are what will need coordinating through disability services.  Because MFA/LTFA students may well need the ability to prepare food for themselves in order to reduce risk.  This may be contrary to institution residency requirements, etc. 

Something to know:

many larger institutions (particularly those with graduate populations) may have efficiency apartments and 'family' student housing on or near a campus.  Students who have a NEED for kitchen facilities or other special living arrangements by virtue of disability (such as the need for a live-in aid or service animal) may be prioritized for such housing.  But without going through disability services and being a QID, this is likely NOT going to be an option that will be even mentioned-- much less offered.

Also know that frequently, demand for those housing slots is VERY much higher than supply-- so mention it EARLY ON if you think this is something to pursue.

Many of the people in administrative positions (and certainly in faculty ones) will never have had experience with a true LTFA before.  Know that, and be pleasant and patient with their relative ignorance--

but involve disability services.  Right from the start.  Because they DO know, more often than not-- and they can help others on campus to understand your needs and what is an okay (inclusive/non-identifying) way of handling those needs-- and what is NOT okay.

("Hi-- this is ________, everyone.  S/he has a food allergy.  I'll let him/her explain it to everyone."   )

[twinturbo]

I'm a registered patient at Brigham Women's and my nurse is super friendly. I might be able to have her send me some of the paper or electronic info from it. Although from the looks of Nancy Rotter I may want to contact her instead. They're usually putting on something useful at MGH wrt to FA.

[GingerPye]

http://ryan-vm.dor.uni.edu/FoodPro/shortmenu.asp?sName=UNIVERSITY+OF+NORTHERN+IOWA&locationNum=01&locationName=Piazza+at+Redeker+Center&naFlag=1

Not sure how to make that link shorter. 

The above link is to the dining area at a local university.  DD will be going there for a festival for school.  This, to me, is AMAZING.  All I have to do is set the filters for my daughter's allergens, click on the date, then the apple, and then the menu item -- and I get an ingredient listing for each item.

Plus, I have written info on what they do to avoid cross-contamination.  All my daughter has to do is let them know of her menu choices and they will have it ready for her when she gets there.  They talk the good talk about food allergies, at least on the phone and by email.  I hope that everything goes as well as it sounds.

This may be very common now, but when I went to a food allergy conference in Chicago two years ago, the parents were complaining that a lot of colleges do not get FAs and do not accomodate them; and so they had to rent an apartment for the FA child. 

*****
editing this to add that I understand some people would not be comfortable with this or safe with this.  I'm not sure yet if DD will be safe.  It sounds  good.  I'll let you know her experience after she has gone there.

*****
editing again:  http://www.uni.edu/dor/dining/nutrition/special.html
This is the page that discusses special dietary needs, and then some of the allergens are listed at the bottom as a clickable link.  Clicking on those, they describe procedures they use to avoid cross-contamination.

What I'm having difficulty with is the statement that even tho they have ingredient listings online, manufacturers' formulations may change.

*****
Please feel free to add your two cents! 

[maeve]

Honestly, I'm not sure that it is realistic (other than at a very small institution) to EXPECT that dining halls can get this 100% right for a person who is highly sensitive to a food allergen.  Maybe for a single treenut or for peanut alone.  But for wheat?  For soy, egg, or milk?  They simply CANNOT meet their obligations to the rest of the student population without retaining the use of the allergen(s).



Sure-- it "should" be possible for anyone with any disability to be given a fully inclusive college experience just like their peers--

but realistically?

Nobody should believe that it will actually happen that way day in and day out for four years or more. 

That's like insisting that a Thai restaurant SERVE YOU SAFELY if you have a peanut or shellfish allergy.  Or that a pizza place make you something safe if you have a milk allergy.  KWIM?  Then to expect them to KEEP doing it every day.



With that said-- the HOUSING arrangements are what will need coordinating through disability services.  Because MFA/LTFA students may well need the ability to prepare food for themselves in order to reduce risk.  This may be contrary to institution residency requirements, etc. 

Something to know:

many larger institutions (particularly those with graduate populations) may have efficiency apartments and 'family' student housing on or near a campus.  Students who have a NEED for kitchen facilities or other special living arrangements by virtue of disability (such as the need for a live-in aid or service animal) may be prioritized for such housing.  But without going through disability services and being a QID, this is likely NOT going to be an option that will be even mentioned-- much less offered.

Also know that frequently, demand for those housing slots is VERY much higher than supply-- so mention it EARLY ON if you think this is something to pursue.

Many of the people in administrative positions (and certainly in faculty ones) will never have had experience with a true LTFA before.  Know that, and be pleasant and patient with their relative ignorance--

but involve disability services.  Right from the start.  Because they DO know, more often than not-- and they can help others on campus to understand your needs and what is an okay (inclusive/non-identifying) way of handling those needs-- and what is NOT okay.

("Hi-- this is ________, everyone.  S/he has a food allergy.  I'll let him/her explain it to everyone."   )

Replying to the part I bolded about small institutions:  That might really depend on the school.  I went to a very small scholl (fewer than 300 resident students when I attended) and I honestly could not see the food services there being able to accommodate food allergies.  Even though a school is small, it will still usually contract out food services and being a smaller school, it's not as likely to get the newer food options that largest institutions (and I imagine that this might also encompass training and facilities).

[CMdeux]

Ugh... yeah, I'm thinking that this is probably not adequate for some people with high sensitivity, though, Ginger-- their advice for milk allergic persons includes:

• Avoid any breaded products (chicken sandwiches, breaded-fish sandwich, chicken nuggets, pork fritter, etc.) as the batters on these items often contain milk proteins. Also items could be fried in the same oils as products that contain this allergen.
• Avoid the desserts as they may or may not have dairy products in the mix. All desserts are baked in a large convection oven and have the possibility for cross contamination. Fresh fruit is the most nutritious dessert and it is dairy free!
• The breads made in the bakery can contain dairy products. Manufacturers may change the formulation of the product and we may not be aware of it. Always just ask to read a label.
• Soy Silk milk is available in all of the residential restaurants.
• Following a milk-free diet can be tricky! Milk and milk products can show up on a label under many different names.

Bolded items mine... 


The advice-- just generally, I mean-- seems well-intended, but probably not sufficient to allow a student with a low milk threshold to adequately eat with a dining plan as a resident, IMO.

I noticed some of the same issues with the egg, wheat, and soy advice. 

If it's been a while since you've eaten in a dining hall on campus-- I really recommend that you pop in and see what it looks like during a rush.

There is quite simply no way that a student could have something "special ordered" and expect it to be handled carefully.  It's like a military mess hall, almost.

So the advice to make sure that food isn't on a shared grill, etc. is fine in theory, but I have some misgivings about how that would/could be implemented in reality.

What that also boils down to is that students with ONE LTFA might be able to navigate successfully with avoidance and label-reading-- but it does place entire categories of foods off-limits.

For example, my egg-, nut-, and peanut-allergic daughter would have to avoid:

a) desserts-- all.
b) items grilled on a communal grill-- all.
c) breads/bakery products-- all.
d) self-serve areas
e) anything deep-fried
f) anything wok-prepared
g) pizza (and anything made in the area/ovens)
h) salad bar areas
i) anything ASIAN.

I'm not entirely sure what someone like her WOULD eat safely, in light of those mind-boggling restrictions.  Each and every meal would be a 'special order.'

In spite of the cheery admonition to "just let us know" and to "quickly educate" those without a clue about LTFA...

huh... call me a bit skeptical.   

I also find it very peculiar that no mention is made ANYWHERE about fish or shellfish allergies, which are also high risk for lethal anaphylaxis in high volume food preparation.  (Shared fryers, etc.) In young adults, this is often an EMERGENT and brand new LTFA.  It seems like that ought to be a real focal point in a food service program that 'gets' LTFA, because those individuals are at very high risk due to relative inexperience, if nothing else.



Maeve, that is a really good point.  Smaller may just mean smaller staffing and facilities, too.  I just meant it in terms of high-volume at peak demand-- meaning that mealtimes at a large dining hall might be especially challenging on a campus of 20K students, and less chaotic at one with only 2K students. 

[GingerPye]

For what it's worth, they do have fish and shellfish listed on the filter --- so that can be eliminated for choices on the menu. 

But I get what you are saying.  Yes, someone like your DD would have very few choices. 

[CMdeux]

It's encouraging, though, that they recognize those situations as high risk for XC.

Many places would not have known that much a decade ago, for sure.   

[CMdeux]

Okay, Ginger-- one thing that you'll want to be VERY careful about is that the filtering that the system does is not inclusive of cross-contamination risks.

ONLY actual ingredients, and even that isn't foolproof-- for example, "Margarine and Mayonnaise" popped up as being 'fine' even after I filtered for results that didn't contain egg...

and "ice cream, vanilla" was included when I filtered for treenuts and peanuts.

Basically, what THEY thought was safe as breakfast fare was hot/cold cereal (which, okay-- MAYbe... though I know of quite a few items there that are UNSAFE in terms of PN/TNA), sausages, and fruit... but some of the listings rang alarm bells for me with my years of experience-- for example, cut-up fruit and sausages are both risks in a kitchen that uses eggs and treenut containing foods.

KWIM?

There are things there that the filters claim as "okay" but that the advice on the main page suggests are NOT okay due to cross-contamination avoidance advice.  So do be wary of anything that seems too good to be true. 

Let us know how it goes, too-- because this is definitely one of the better systems that I've seen in action-- provided that it works the way it is supposed to.  (That is, if dining staffers know to keep labels, etc. available and have been trained to recognize XC risks and answer questions.)

[maeve]

CM,
All valid points in your last post.  Another thing to consider with the cold cereal is that it is most often stored in dispensers (like candy machines) and you  have no idea what has been stored in those dispensers previously.

Basically, depending on the school and its dining options, most dining halls are buffets/cafeterias and I don't let DD eat at one of those now, why would I expect her to be able to when she goes to college?

As with the small college, at my school only three meals were served per day (and only two per day on weekends) and there were no other dining options other than the dining hall (there were no cards that you could use at other food vendors).  So even though the volume of students was small there were limited options and peak times because serving times were limited. 

I think any size school can pose a risk.  It's a shame that college dining halls are not required to have EpiPens on hand just in case (many have AED devices).  I just keep thinking of that Georgia college student (who, yes did have his Epis). 

[maeve]

CM,
The last part of your post had me thinking that this is really an area where FAAN and FAI could lead the way.  They should get on the forefront of developing a good practices guidelines for colleges and universities and then offer a searchable database to FAAN members looking at colleges of those schools who participate in the program.

[Carefulmom]

Okay, Ginger-- one thing that you'll want to be VERY careful about is that the filtering that the system does is not inclusive of cross-contamination risks.

ONLY actual ingredients, and even that isn't foolproof-- for example, "Margarine and Mayonnaise" popped up as being 'fine' even after I filtered for results that didn't contain egg...

and "ice cream, vanilla" was included when I filtered for treenuts and peanuts.

Basically, what THEY thought was safe as breakfast fare was hot/cold cereal (which, okay-- MAYbe... though I know of quite a few items there that are UNSAFE in terms of PN/TNA), sausages, and fruit... but some of the listings rang alarm bells for me with my years of experience-- for example, cut-up fruit and sausages are both risks in a kitchen that uses eggs and treenut containing foods.

KWIM?

There are things there that the filters claim as "okay" but that the advice on the main page suggests are NOT okay due to cross-contamination avoidance advice.  So do be wary of anything that seems too good to be true. 

Let us know how it goes, too-- because this is definitely one of the better systems that I've seen in action-- provided that it works the way it is supposed to.  (That is, if dining staffers know to keep labels, etc. available and have been trained to recognize XC risks and answer questions.)

Having looked at dining services at several colleges now, I have to say that the scary thing is the colleges want to accomodate, think they can accomodate, but don`t get it.  Some of the things CM Deux pointed out are scary to me.  I cannot fathom letting dd eat vanilla ice cream (assuming she were not allergic to milk, referring only to the peanut issue) without my calling the manufacturer, and most likely it would be shared equipment with nuts.  We did find one school that does not serve any peanut or tree nut products other than a jar of pb out where the silverware is for the students.  So that school has no risk of nut cross contamination.  Unfortunately, that is not the school that is most academically compatible with dd.  The school that dd wants to go to told me that they could accomodate dd, but when I asked, they serve Thai food there, use peanut sauces, etc.  No way is she eating three meals a day in that dining hall.

And quoting maeve:
"Basically, depending on the school and its dining options, most dining halls are buffets/cafeterias and I don't let DD eat at one of those now, why would I expect her to be able to when she goes to college?"

I just can`t see how so many on this board with older kids have had their kids go safely off to college.  It seems like I am missing something.  Most of the ones I have checked don`t really understand cross contamination and how little it takes to have an epi/911 moment.

[CMdeux]

Well, DH and I were talking about this at dinner tonight-- we both agreed that while many of us as parents might imagine a dorm living residency as the quintissential "college experience," it just isn't necessarily so for a great many college students-- even those WITHOUT food allergies.

DD is going to have to live off-campus, or at the very least be in an efficiency with some minimal kitchen facilities.  It's simply not feasible otherwise, from what we can see.

So yeah, I think that if a parent is locked into seeing college as a residential (particularly a "dorm" or "Greek" residential) living arrangement that dictates a certain type of social existence during those years, then, yes, FA is something that is going to get in the way.

We've never really considered that such a thing MIGHT be an option for DD.  Not really, anyway.  Then again, I didn't experience college that way, either.  I was a commuter, and I liked that just fine, tyvm, and it wasn't "weird" given the type of campus I was on.

Maybe we're more realistic, having been faculty and having been in/around academia for so many years (decades, really)?  I don't know.  I just know that there are a LOT of different ways to send a kid off to college, and VERY FEW of them require meals eaten in campus residence halls.

I also don't know that there have been "so many" people from this community-- yet-- who have had kids go off to college.  The old guard around here has only two members who HAVE so far, at least that come to my mind immediately-- Peg and Jana.

Lots more of us are 1-4 years away from doing so, and even larger numbers are about 6 years away.  Naturally, they're much more worried about dealing with high school and dating issues than college.  (Right now, anyway.)

  I'd say that means that colleges are just starting to see the larger numbers of kids with LTFA.

I predict, unfortunately, that the tragic incident in GA is going to be repeated a few times before colleges realize that what they THINK is enough... isn't.  Until now, they've not dealt with the new breed of super-allergic students.  That's what I suspect, anyway.  Hey, it took allergists a while to realize that kids born after ~1995 were, well, different than all the experience they'd had with allergic children up until then-- more severe reactions, more highly sensitive, and MUCH more likely to sensitize to other allergens.    FAAN is still playing catch-up with this new generation of FA kids, where the rules seem to be different.  They don't outgrow when they're supposed to, they're multiply food allergic, etc. etc.

The luckiest of them are the peanut allergic kids. Because people take that one seriously.

In this first wave, the learning curve is bound to be steep.  I personally have no problem saying that the risks aren't worth it to let them 'learn' on my kid.