sesame seeds labeling
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Posted: Oct 13th, 2008 at 07:44 pm
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That's great news - I sure hope they poll my house. 
Amy
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USA
Mom to two boys:
DS #1 - Age 20, Superbad OAS
DS #2 - Age 17, PA, TNA, Soy, Sesame and Chick Pea
"Speak out against the madness." -- David Crosby
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Posted: Oct 14th, 2008 at 02:08 am
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Hi, I am new around here but can so appreciate all of you that fear sesame seeds as much as I do. My 16 year old son had an anaphylactic reaction to sesame seeds while in Universal Studios on August 10th. We were assured by 4 people that the bun he had was a "sesame free bun". Unfortunately, he was just about finished when we realized that there were several seeds on the bottom of his bun. Long story short and fast forward we are 2 months later. My son is no longer the same person that he was before this reaction and I miss him so much. We spent our entire vacation in the hospital (3 911 calls) or in a hotel room because he could not go out into the heat. He had a bad reaction to the steroids as well and had 3 days of feeling like he was dying from his throat swelling. The hospital would treat him and send him back to our hotel room. When we got back to our home state I was told that his body still had residual signs of a severe allergic reaction even 5 days later. Anyway it is 2 months later and he has been diagnosed with post traumatic stress disorder. He is afraid to eat even if we read labels because of the whole "spices" or "flavorings" or "vegetable oil" uncertainty. He has had to see a psychologist and now is seeing a psychiatry because he had to be put on medication to help with the recurrent panic attacks. Often several times a day he feels like his throat is swelling and he feels like he can't breath. It is very scary for me because although this happens any time it often will happen after he eats and now his panic attacks from this horrible experience mimic an actual anaphylactic reaction. His heart races and his throat feels tight. I am left to try to decide within a minute whether or not it is panic or an allergic reaction. I'm so afraid I might one day make the wrong decision but as is obvious, I cannot use the epi-pen each time he has a panic attack. Often this is very scary because of the lack of definite labeling of sesame seed so what if it's really a reactin one day and we don't realize it? My child has always been the class clown, and a member of the honor society, he is an officer of his junior class, he loves to bungi jump and do karaoke but now he is often afraid to leave the house, school can be agonizing, he sometime goes 24 hours without eating if he's staying over a friends house, he's afraid to sleep, he doesn't smile much anymore, he's afaid to live his life. He just tries to get through each day witout having a panic attack. He often asks me about college and how he'll ever be able to go if foods don't have to be labeled for sesame seed. His junior prom is coming up and he won't even be able to eat with his classmates at the restaurant where they are having it because they can't guarantee that the "spices" that are in their foods don't contain sesame seed. I'm sorry this has been so long it's just that I can't believe how our lives have changed. I want to be part of helping to make a change for the better. He also has peanut/tree nut allergies but at least with those we have some comfort level that we can look at labels and make good decisions. If anyone can tell me how I can help please let me know. Also what does the prevelance study actually mean for us. Thanks so much for listening. . .
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Posted: Oct 14th, 2008 at 10:08 am
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Hi marykrn. WOW!
First, pull up a chair and get yourself a drink. (I'll have coffee. )
I have adult onset allergies, and I've had an anaphylactic reaction to sesame seeds. Following that, I lost a LOT of weight because I was terrified to eat anything.
I completely agree with you, anxiety attacks really can mimic anaphylaxis -- and to give the epi for anxiety is not just not helpful, but could possibly make things worse.
Your son is 16 -- and he's the one that has to decide whether it's an allergic reaction or an anxiety attack. I know that sounds mean -- but it's true. He's in a better position to figure it out then you are. Here are some things I did to help me figure it out. First, he needs to understand that it could be either one (I think he already gets that). Then, he needs to understand that he's in charge when it's anxiety. If his heart is racing due to anxiety -- he can slow it down a bit. It won't be much at first -- but he will be able to notice a difference. As the heart slows a bit, the restriction to his breathing will also ease up -- just a bit. Feeling that tiny bit of releief, will assist in slowing the heart rate, which again will get everything calming down. The way I started doing this was to close my eyes and picture my heart - and I would picture it beating slower and slower. Other people may find a different way, but that's what worked for me.
It would be best for him to practice this when he's calm. Have him lie down and practice relaxing muscles -- individual muscles if he can do that (I can't). This was an exercise they tried to teach me when I was pregnant -- it was supposed to help ease the pain of delivery. It didn't help me with that -- but it helped me with my allergies.
Next, have him do some exercises that will get his heart pumping faster, and have him practice slowing it down.....calming.....
Verify with a doctor -- but I cannot slow it at all when it's a reaction. I can only slow it when it's anxiety.
Now, the other thing is -- he has to eat. So, let him eat plain foods. Fruits, vegetable, home cooking -- where you can verify that everything is safe. Everything. Let him read the labels. Let him double-check everything that you check. He eventually has to learn to do it all himself -- so let him.
For quite a few years, I baked all the breads that were ever allowed into my home. I could not find breads or buns that were not *may contain* whether or not they listed it. Fortunately, labelling has improved a lot in Canada, and now I only have to bake burger and hotdog buns, and bagels. Most other breads that i like I can find safe.
As for school - my first thought was to tell him not to worry about that yet. But, the fact is he IS worrying and telling him not to won't help, it will just make it appear that you don't understand or that you are trivializing his feelings. So -- he might need to live off campus so that that he can have more of an apartment then just a room. OR some campuses do allow students to have microwaves and small fridges in their rooms. Let him know that you will help him to find safe living arrangements. Then, check out this forum, because it's been discussed here before.
And lastly -- let him know he's not the only one that has gone through this. {{{hugs}}} to both of you -- and I'm so sorry your families vacation was spent dealing with allergies and hospitals.
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Too many people miss the silver lining because they're expecting gold. ~~~ Maurice Setter
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Posted: Oct 14th, 2008 at 10:09 am
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Welcome to the board marykrn! I hope you will find a lot of good information & support here.
I'm so sorry to hear that your son had such a severe reaction ... and while you were on "vacation"! Although he recovered physically, it sounds like you all are still working hard to recover psychologically  . There have been studies documenting how stressful living with food allergies can be ... it sounds like you are doing the right thing by getting him some professional help. How long has your son been living with food allergies? The teenage years can be an especially difficult time for kids with food allergies.
Here are a few links that might be helpful to you:
http://www.kidswithfoodallergies.org/resourcesnew.php
http://www.faanteen.org/
http://www.foodallergy.org/
http://foodallergies.about.com/
Please consider posting in the Welcome section of this board so more people can introduce themselves and possibly offer you some more tips.
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As far as the sesame labeling, it is good that FAAN is doing a frequency study since they consider this a first step in possibly improving the labeling for sesame. Up until this point, no major US food allergy organization has really pushed for better sesame labeling.
If you would also like to have your voice heard by the FDA regarding this matter, it'd be great if you could write even a sentence or two on their website. It's really as easy as posting a message on this board. Here is more info on that:
http://allergy.hyperboards.com/index.php?action=view_topic&topic_id=5869
------------------------------------
Again, welcome to the board ... we're glad you joined.
KP
« Last Edited by
Oct 14th, 2008 at 10:23 am »
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Posted: Oct 22nd, 2008 at 08:41 am
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If I ever have the slightest doubts that the work necessary to try and get sesame labeled is worth the effort, companies continue to renew my resolve and determination.
This morning ....
Spent at least 5 minutes getting through the phone menu and listening to a particular company's recorded allergy policy .... only talking about "big 8" ... press button for real person & get disconnected.
OK - deep breath ... call again ... get through menu maze to real person. Ask about the way sesame is labeled ... get the feeling I should be skeptical when she tells me that her company will label for sesame.
I ask whether her company follows Good Manufacturing Practices for sesame ... she says, "Oh yes, we clean the equipment very well ... yada yada yada" .... I say I know they clean for the top 8 but "are you sure they clean for sesame .... she says ....
"uh, no".
« Last Edited by
Oct 22nd, 2008 at 08:42 am »
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Posted: Nov 6th, 2008 at 03:16 pm
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Posted: Nov 6th, 2008 at 10:06 pm
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Posted: Nov 7th, 2008 at 07:40 am
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Welcome here. I'm so sorry your son is going through this. |
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"Words are our most inexhaustible source of magic. They are potent forms of enchantment, rich with the power to hurt or heal."~Albus Dumbledore
Me: shellfish, chamomile, sesame and a few odds & ends
DS: peanuts
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jenniferb
Member Posts: 237
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Posted: Nov 7th, 2008 at 08:31 pm
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Putting on my http://www.foodallergybuzz.com hat for a sec..
No prob! Hopefully it will help start more discussion among non-FA folks.
Food Allergy Buzz hat off. 
Unrelated thought--is anyone familiar with the movie The Man Who Would be King? I just reminded myself of the part where Michael Caine and Sean Connery say "Hats off!" and then "Hats on!". Anyhoo...
« Last Edited by
jenniferb
Jan 29th, 2011 at 04:06 pm »
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Posted: Nov 8th, 2008 at 08:43 am
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I don't think I've seen that movie ... but "hats off" to you for writing about sesame.
Now a quote from "Independence Day" ... "spreeead the word" 
KP
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Posted: Nov 8th, 2008 at 06:45 pm
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FAB hat on here.
Good news! I managed to get sesame allergy and FDA labeling on the LA Times Health Blog. Here is the link:
http://latimesblogs.latimes.com/booster_shots/2008/11/dont-forget-to.html
It is a tiny post entitled Don't forget to worry about sesame. She cites a couple other recent pieces of non-sesame allergy news and then mentions my post on sesame allergy and FDA labeling and also a 2005 article on sesame allergy from AAAI.
Maybe having it in the LA Times Health Blog will make it easier to get it discussed on other newspaper's websites/blogs...?
FAB Hat off!
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Posted: Nov 8th, 2008 at 06:51 pm
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VERY, VERY cool  .
Did you see the "tahini cookies" ... I've never heard of such a thing!!!
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Posted: Nov 13th, 2008 at 03:19 pm
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Posted: Nov 13th, 2008 at 08:13 pm
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Nov 9th, 2008 at 01:48 pm, wrote:
Where the heck is the comment I submitted? Did yours show up?
Amy
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USA
Mom to two boys:
DS #1 - Age 20, Superbad OAS
DS #2 - Age 17, PA, TNA, Soy, Sesame and Chick Pea
"Speak out against the madness." -- David Crosby
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Posted: Nov 13th, 2008 at 08:29 pm
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