Discussion Boards => Schools and Food Allergies => Topic started by: wackattack69 on March 04, 2015, 11:44:27 PM
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Title: 1st year of college---too paranoid?
Post by: wackattack69 on March 04, 2015, 11:44:27 PM
Hi all, have not been on in a while...which is a good thing! DD started community college and I drive her each day-they have dorms, but I think it's ridiculous for a 2 year college and we live within 20 minutes anyway. Here is my dilemma: The accommodations lady is FANTASTIC and she has not had any problems with her teachers..it's been great. However, the cafeteria is horrendous. EVERY DAY, they have burgers and Nutter Butter Cookies at the hot grill and the salad bar has trail mix with peanuts....open containers, as well as peanut butter sandwiches. EVERY. SINGLE. DAY. So, she just refuses to go in the cafeteria, which I agree with. The sheer chance of touching something, anything seems pretty high. So, she eats her lunch in one of the buildings where they have open areas, etc. Now, the bookstore is attached to the cafeteria. DD is terrified to go into the bookstore, which she only occasionally has to do, because it is so near the cafeteria. She went into shock at 18 months from a peanut butter/cheese cracker, had a huge attack at 2 years as we wheeled her past an open vat of peanuts at the grocery store. The smell of it, obviously affects her. She also has asthma and vocal cord dysfunction. I cannot convince her to go to the bookstore...should I try? I need some guidance here:( Also, I just found out that she holds her breath at the grocery store when she sees cans of peanuts or jars of peanut butter that she has to go by (she tries to be aware and NOT go by them, but it does happen). I have tried to tell her to NOT hold her breath, but she has been doing it for years! It's not good for her asthma OR vocal cord dysfunction! Her shrink (DD has finished seeing her over 2 years ago) said she should do whatever makes her feel comfortable and safe. I guess I just feel helpless to some extent--how will she ever survive at a job? We are moving when she is done with school, and I will need to go back to work. Not sure how I can if she is needing to text me for situational advice. Any thoughts would be appreciated.
Title: Re: 1st year of college---too paranoid?
Post by: lakeswimr on March 05, 2015, 07:25:19 AM
I can understand her not wanting to accidentally come into contact with peanut residue and have a reaction.
I highly recommend you have her do a smell challenge with the allergist to see if these restrictions are really necessary. The odds are they are not. Most people with peanut allergy would be able to go into that bookstore and would be fine and most would also be fine eating at clean table in that cafeteria, although, maybe not eating the food unless they cafeteria specially makes it for your daughter (which is something they should do if your daughter requests it.)
When my son was starting kindergarten we did the smell test with peanut butter at the allergist and he had no reaction at all. It made me feel a lot better about him going off to school. I think this is a quality of life issue.
I have asthma, too, and I would not think that occasionally holding one's breathing would be bad for my asthma. I would, though, worry about her anxiety level. there is no chance that peanut products that are packaged are going to cause her to have an allergic reaction from walking by them and the fact that she feels they might means she is too anxious about her food allergies. it is good she had counseling.
Title: Re: 1st year of college---too paranoid?
Post by: Lindsay on March 05, 2015, 12:09:33 PM
Hi!
Just wanted to say that there is a great new site made for college students with allergies to form friendships or relationships! Your daughter should consider checking it out! It is AllergicAttraction.com :)
Title: Re: 1st year of college---too paranoid?
Post by: PurpleCat on March 05, 2015, 12:57:32 PM
My DD tells me when she smells peanut butter she has a really bad feeling and a tightening in her chest. She tells me it is scary when it starts and then she knows it is not the same as a reaction and not the same as asthma (unfortunately she has had enough reactions to know the difference).
But it is a sensation not to be ignored. It's real. Her body is trying to tell her something. We call it her danger warning.
Perhaps your DD holds her breath to prevent feeling something similar.....
A smell test sounds like a great idea. If she passes then she will have more confidence.
Title: Re: 1st year of college---too paranoid?
Post by: starlight on March 05, 2015, 05:34:51 PM
You know how it feels to breathe in an area where there's something toxic lingering in the air, like fertilizer or bathroom cleaners? Walking through the PB aisle and by nuts feels/smells like that to me, and probably does to her. I'm sure she doesn't just hang around holding her breath, she gets out of there fast, so it shouldn't have any bearing on her asthma. I know nothing about vocal cord dysfunctions though.
Title: Re: 1st year of college---too paranoid?
Post by: Macabre on March 09, 2015, 10:15:37 PM
wackattack I just wanted to say it's great to see you!! :bye:
Title: Re: 1st year of college---too paranoid?
Post by: wackattack69 on March 14, 2015, 01:38:22 AM
Thank you for all of the responses! I failed to mention the bookstore has containers of trail mix from (you guessed it) the cafeteria in multiple places,, especially the checkout. Hubby sides with DD and says he would not feel comfortable going in there, either. As for the smell test---I had never heard of it, until I asked this question. Shows how long it's been since I've been here:) DD wants NO part of it, EVER. She doesn't want to have a reaction (even at the DR's office) and if it's negative, she says she wouldn't trust it. She wants to just keep on keeping on, until there is a cure. Sigh. I can't really make the school get rid of the peanuts in the cafeteria because she does not live on campus, so she doesn't HAVE to use the meal plan. Thank you all for listening and giving me your opinions and advice. It's appreciated more than you know. ps anyone else's kiddos have this vocal cord dysfunction???
Title: Re: 1st year of college---too paranoid?
Post by: Janelle205 on March 15, 2015, 02:26:41 AM
I have severe asthma and occasionally have bouts of vocal chord dysfunction. One thing that my doc suggested that helps is slowly counting backwards when I think the issue is VCD and not asthma. Sometimes Atrovent helps the VCD because it treats upper airway constriction. I think that at one point there was a peanut issue with atrovent inhalers - I think that has changed but not sure. I only use it via nebulizer and am not allergic to peanuts of tree nuts.
Title: Re: 1st year of college---too paranoid?
Post by: wackattack69 on March 15, 2015, 03:47:27 PM
HI Janelle205 DD has had asthma since 2 years old. This VCD is a new and terrifying thing for her. First time it happened, her inhaler didn't do a thing, she couldn't breathe and she was home alone. Her peak flow was fine, so the DR said it was def. a VCD spasm. BUT, she then had a panic attack...due to not being able to breathe. She deals with PA (can't even smell them), Asthma and VCD and now PANIC ATTACKS. She is only 19 and I feel so badly for her. She did do some speech therapy for the VCD but insurance won't pay for it now, and it's $200 every 2 weeks. She does TALK to me about it all, which I take as a blessing. I truly think she would benefit from an as needed anxiety med, but she doesn't want to go that route.
Title: Re: 1st year of college---too paranoid?
Post by: ninjaroll on March 15, 2015, 06:20:40 PM
This is probably the first time I've ever recommended it but what about a service dog to assist with independence? It's an immense undertaking but if it assists her with panic attacks, detection it might be worth starting the journey to look into it. There's some nice case law and Justice settlements and statements of interest covering qualified service dogs.
Title: Re: 1st year of college---too paranoid?
Post by: lakeswimr on March 17, 2015, 06:00:49 PM
I would push for her to do the smell challenge in the allergist's office. I think she is living a much, much more restricted life than is medically necessary and I worry this will limit her options of what she will do in her life for her career and more.
I can understand not wanting to have a reaction. I think this is beyond what is medically necessary. What does her allergist recommend?
Title: Re: 1st year of college---too paranoid?
Post by: lakeswimr on March 17, 2015, 06:04:03 PM
'Caregivers and patients often express concern about reacting to peanut through the smell of peanut butter, breathing in peanut dust, or the risk from touching surfaces that may have come in contact with peanut. Inhalation has often been reported as a route through which someone’s reaction has occurred. However, evidence has shown there is a very low to absent risk accidental exposure through casual environmental contact is exceptionally low, and no evidence that shows peanut butter or peanut dust can cause a reaction. Studies have shown that following: Inhaling the scent of peanut butter (within a foot of an open jar) did not cause any reactions. No peanut allergen could be measured at the level of the neck after volunteers stomping on whole peanuts in a small room with no ventilation When actively shelling peanuts, peanut allergen could only be detected 2 cm above the table. However, allergen was not detectable 1m away, and undetectable at either 2cm or 1m immediately upon stopping shelling.'
Title: Re: 1st year of college---too paranoid?
Post by: Macabre on March 18, 2015, 10:15:27 AM
Quote
or the risk from touching surfaces that may have come in contact with peanut
Except this is how Burks accounted for two of DS' anaphylactic reactions. It wasn't simoly touching but accidental ingestion after touching.
Title: Re: 1st year of college---too paranoid?
Post by: wackattack69 on March 19, 2015, 01:51:02 PM
Lakeswimr, I have read that before. I don't believe it. DD went into shock (2nd time) at 24 months as we wheeled her next to a big vat of peanuts in the produce department. She was in the cart and touched nothing. Her allergist (one of the best here), doesn't do (nor has any faith in) the smell test.
Title: Re: 1st year of college---too paranoid?
Post by: momma2boys on March 19, 2015, 04:22:37 PM
Uh yeah, my ds has had multiple reactions from touching tabletop in bowling alley and a shopping cart. His anaphylactic reaction resulting in ambulance ride was most likely from touching something and ingesting.
Title: Re: 1st year of college---too paranoid?
Post by: lakeswimr on March 19, 2015, 05:38:18 PM
Were the peanuts heated or agitated in some way? Had your child eaten anything before that?
Contact ingestion is far, far more likely than inhalation reactions to room temperature foods that are not being agitated. And once people are your daughter's age, they are better able to keep their hands from their eyes, nose, and mouth to prevent contact ingestion reactions.
My child has had many contact ingestion reactions including some that were ana.
I understand a very small % of food allergic people feel they or their children have had ana from inhalation. However, this is not something common by any means. To live a life so very restricted based on something that happened that long ago would be a shame if it isn't necessary.
My son's allergist only did the smell test in order to convince people they could not react to the smell, not with any question about whether or not they would react. Room temperature foods that are not being agitated are very low (as in close to zero if not zero) risk if the person doesn't have contact ingestion. Contact ingestion is a whole other story and even that is not a common cause of ana (speaking as the parent of a person who has a child who did have contact ingestion ana.)
Title: Re: 1st year of college---too paranoid?
Post by: ninjaroll on March 20, 2015, 07:10:41 PM
I'm guessing that the problem is rooted more in the location of the food and eating on a college campus. While our children are in K-12 they go on college campus often to their grandfather or father's office or to a community event. It's nearly impossible for us even as parents experienced in negotiating food in K12 schools, camps, movie theaters, the gym, airplanes, and so forth, to really negotiate a college campus with them because food is being consumed everywhere there's no real management without any clean up whatsoever.
Because I go to a college campus often with kids who have LTFA I just wanted to say that to put myself in OP's daughter's shoes, this may not be the case for daughter what it comes across to us on a forum. We might think it's smell based on how this is written but when you walk across the campus it becomes really evident how food filled it is compared to many other places. Particularly the trail mixes and peanut items because they're portable, cheap and sold (and consumed) nearly everywhere. I'm not convinced that the anxiety is tied to smell despite the compensating behavior making it appear to us as if it's smell.
To boot, it's not uncommon for the smell to actually be from heated peanut. Food carts and courts are perfect places for peanut sauces, hot food with peanut - unlike schools that serve PB. There may be a mix of that on campus where OP's daughter doesn't have time to consider is this just harmless PB smell or is this from the satay cart that I wandered next to without noticing?
Title: Re: 1st year of college---too paranoid?
Post by: lakeswimr on March 21, 2015, 07:25:22 AM
My DH's allergist told us of a food challenge where the person was allergic to seafood. It was a double blind placebo challenge where the doctor and patient did not know if the first doses had any allergen in them or not. The person seemed to react to the first dose of a broth with anaphylaxis. The doctor was convinced it was a reaction and moved to get epi to give to the person who was coughing and having breathing issues. it turned out the dose was just salt water, placebo. As soon as that was announced, the person went from what looked like anaphylaxis serious enough to warrant the epi pen to being just fine. So, fear can cause people to have a false 'reaction'. I'm not saying that people shouldn't trust themselves, but it is good to know that this can happen. If one is walking by packaged peanut products, like candy bars, jars of pb, and feels that causes a reaction, it could be that is psychological (since there should not be detectable food protein being released from these foods.). My son's allergist did the smell test on a person who used to feel that packaged candy bars were making her react. The person smelled from a jar of peanut butter with no reaction. When DS did the smell test I had heard the medical reports from FAAN that said it was impossible to react to just the smell. I had also read things from people who claimed they or their children reacted to smell. I was scared because I didn't know what to believe. A lot of allergists back then seemed not to believe a person could have contact ingestion ana and I knew that was possible since it happened to DS. He passed the smell test with not any sign of a reaction. It made our lives a lot better and a lot less anxiety filled than they would have been had we sent him to school thinking the smell of pb could make him react.