Food Allergy Support

Discussion Boards => Main Discussion Board => Topic started by: DysonsMom on January 18, 2014, 09:43:44 AM

Title: Is this as dangerous as I think?
Post by: DysonsMom on January 18, 2014, 09:43:44 AM
Short recap: My 4 yr old LO had a reaction to shrimp a couple of weeks ago--swollen lips that required benedryl for about 24 hours and small hives on his face. He had only eaten one nibble of the shrimp and then put it aside because he didn't like it. (Others ate a ton of the shrimp and did not get sick.) We have been issued an epipen, he was put on steroids for 3 days, and he has an appointment with an allergist in a couple of weeks.

I am getting some "You are being too over-protective" vibes from others. For example, I want to take the epipen everywhere. But I am hearing things like, "Why are you bringing the epipen to his basketball game? I seriously doubt he is going to eat shrimp at the game."
We have a cruise coming up--to the Caribbean. I am hesitant to take him off the ship in the Bahamas, like we had planned. I am having a hard time imagining a place on the island that he could eat that would not have shellfish cross-contamination. I am told things like, "He'll be fine. I'm sure they'll have something he can eat."
For that matter, I don't really want go on a long excursion and leave him in the ship's daycare during meal times. We have done that in the past, but that was before the allergy. The kid's staff walks the kids down to the buffet area and feeds the kids. I doubt they would feed him shrimp, but all it takes is one person to cook the french fries in contaminated oil. And I don't imagine that they would take the epi down to the cafe with them.

I don't know if I am overestimating the danger or if others are being too casual about it. Is cross contamination for a shellfish allergy that much of a worry?
Title: Re: Is this as dangerous as I think?
Post by: hezzier on January 18, 2014, 09:54:48 AM
No, you are not being overprotective.  If he goes somewhere, the epi goes with him whether there is food or not, no exceptions!

As to shrimp cross contamination, I'm going to let someone else answer.  I would be worried about eating at a buffet, can you contact the ship and see if they can prepare a bagged lunch for you to take off the ship?  Otherwise, I'd think about bringing a suitcase filled with safe ready to eat foods that you can make your own bagged lunch from.
Title: Re: Is this as dangerous as I think?
Post by: hedgehog on January 18, 2014, 10:09:29 AM
Anyone who thinks you are being overprotective knows little to nothing about food allergies.  You are being a good parent.  Yes, the epi-pen stays with your child at all times.  And you must be careful to avoid cross-contamination, period.  If anyone gives you grief for that either ignore them, or just tell the doctor insists tat it is more serious than that. 
Title: Re: Is this as dangerous as I think?
Post by: CMdeux on January 18, 2014, 10:14:05 AM
In restaurants, YES-- cross-contamination is that big a worry.

It just depends on what you determine a typical threshold dose to be, and you won't know that without a few "ooopsie-- shouldn'ta done that" moments, which I really don't encourage while on a cruise out of the country. 

I think that I would strongly discourage others from feeding your child anything that you haven't specifically approved, for now.

If you take your child on this cruise-- and it would be painful NOT to at this point, I realize-- then you have some homework to do first. 

1.  Discuss it with the cruise line.  Can THEY manage the allergy on this cruise? 

2. Can they give you a contact number so that you can discuss this with onboard kitchen staff?

3.  " " medical staff?

Get answers to questions about how well they CAN manage cross-contamination, whether or not they have advice for you on when to do meals, how to ask for help from a server, etc.
Title: Re: Is this as dangerous as I think?
Post by: yelloww on January 18, 2014, 10:28:56 AM
After you call about the food-

Find out what the emergency plan is for an allergic reaction with the ships medical staff too. Not to scare you, but I have a friend who ended up being helicoptered off the ship after an allergic reaction. Do they do that? How far out to sea are you if the no longer do that? Will other countries do this in extreme circumstances? Find out before you go.

Also, something we do when we travel remotely us to bring excessive amounts of Epi's. I ink we brought 8 to Mexico. We also get an Rx for liquid steroids like what they would administer at the ER with the dosing instructions. The dosing is much higher than a regular course of steroids at first- just as if we were at the ER to buy us more time to get medical attention.

I haven't had to use the steroids but that's part of our anaphylaxis plan for when we are more than 30min from a hospital.

Epip pen goes with the child. Always. That's not up for discussion or opinion by your friends. You can't use the Epi if it's not with you. And little kids and families need to learn this early on so that they don't become teens who went out to eat with their friends and forgot their Epi.
Title: Re: Is this as dangerous as I think?
Post by: twinturbo on January 18, 2014, 10:38:08 AM
You now live in the world of the cop conducting the traffic stop: the possible, not the probable. You're going to use all your training and protocols and common sense and strategy and tactics to practice avoidance but failing all else you've got your Kevlar vest underneath. Epi = Kevlar vest. It increases your chance of survival. It doesn't prevent anything.

I would rephrase the initial question to Can I predict when anaphylaxis is going to happen? But that question answers itself. If we could predict it wouldn't be a problem in the first place.

Here's what I don't know and can't answer.

Is it only shrimp? Is it only all crustaceans? Forever?

How much must child ingest via oral, cooking concentration in air, contact-to-ingestion in order to react?

Will the reactions stay the same or get worse?

Will child outgrow?

Does child have some mild asthma presenting subtly enough to not have been diagnosed yet?

Why does anyone care if you carry a medication?

Trust that it was a small, indelible mark on my soul to tell you to do what you had to in order to get an EpiPen asap, even knowing and feeling how much it was truly going to cost you.

What I suspect is that you'll eventually need a 504 for school, and need to carry meds everywhere but it won't have the same life limiting social impact as a wide category food protein like cow's milk or peanut. Going to a game for a kid with a peanut allergy means not going in the first place, or being limited to a peanut free night. Having to carry the EpiPen for the high unlikelihood is very low maintenance on the risk-benefit continuum one lives on with food induced anaphylaxis.

I'd keep my cards closer on this with the people you're getting this unsolicited judgment from. Your child does not need anyone getting their pants in a bunch to 'prove' you're being overprotective.

The short answer is no, he will not live in a bubble like the people around you are insinuating. By the other side of that false dichotomy coin, neither does that mean you break the EpiPen out once a year so they can hit the all you can eat shrimp buffet.

I can't change the laws of biochemistry by stoking bravado. Without the olfactory senses of a canine I must resort to using my homo sapien brain to discern risk and calculate the odds. Heads up that at some point the insinuation of being anxious might be flung your way, usually by the most unqualified people.

How are you holding up? Overall?
Title: Re: Is this as dangerous as I think?
Post by: momma2boys on January 18, 2014, 10:47:42 AM
I don't have anything new to add, you've gotten good advice. Just want to agree you are not over reacting and doing a great job. Welcome and sorry you are dealing with this.
Title: Re: Is this as dangerous as I think?
Post by: yelloww on January 18, 2014, 10:54:10 AM
Hopefully some of our shrimp allergic members can chime in on this too.

What cruise line anyway? We have threads in the Travel section here about cruises and food.
Title: Re: Is this as dangerous as I think?
Post by: CMdeux on January 18, 2014, 10:57:35 AM
How old is your DS, again? 

If he's old enough-- bring some granola bars with you.  Protein/energy bars, I mean.  It's what I did for the three weeks we were in Europe.  I was often not sure enough at restaurants that I wanted to risk it, even ordering Kosher/vegetarian meals. 

It's always better not to feel that you don't have any choice but to take a risk that feels unsafe.  Leave yourself enough breathing room to follow your gut instincts-- truly, that can make a huge difference in YOUR quality of life and enjoyment of vacations and outings.  I've had to learn that one the hard way.

Title: Re: Is this as dangerous as I think?
Post by: yelloww on January 18, 2014, 11:08:42 AM
CM, I think he's 4???

We bring bags of beef jerky with us on trips too.
Title: Re: Is this as dangerous as I think?
Post by: twinturbo on January 18, 2014, 11:15:46 AM
Heck, if this is shrimp allergy he can bring peanut butter! The ultimate portable food most of us in allergy land can't have.
Title: Re: Is this as dangerous as I think?
Post by: CMdeux on January 18, 2014, 11:23:51 AM
Personally, I love something prepackaged which is stable and hardy enough that I can stick it into a tiny purse, or stuff it into a pocket and know that it's my fall-back position.  LOVE me Odwalla bars for this purpose; I ate a bunch of them in Dublin, Paris, and London-- for lunch.

Title: Re: Is this as dangerous as I think?
Post by: DysonsMom on January 18, 2014, 12:54:39 PM
Thanks for the advice! We will pack plenty of pj&j, apples, and granola bars!  8-)
Title: Re: Is this as dangerous as I think?
Post by: PurpleCat on January 18, 2014, 01:28:57 PM
You are certainly not over reacting.  My DD carries 2 injectors and I carry one.  She has a minimum of 2 no matter where she is and mine and those at school in the nurses office are back up.

Your child does need testing, any chance this can happen before the cruise?  Know that testing is not 100% but it is very helpful.  Shellfish are in the same family as dust mites and that is what triggered my DD's shellfish allergy as she approached....I think 8.  She was allergic to the dust mites first.

My DD is allergic to shellfish and tests positive but she can eat and does eat shrimp and we know, someday she may be allergic to that as well.  She reacts to lobster and crab.  Reactions trump testing. 

She does not test allergic to mollusks (scallops, oysters, clams, mussels) however, she has had reactions to clams so she is allergic to those.  She eats scallops with no problems.  I have never given her oysters or mussels...she is happy with scallops and I don't really want to try those at home.  I tried the clam at home and that scared me enough.  I told the doctor any other

She eats and loves all kinds of fish.

My DD never eats from a buffet.  Too many opportunities for cross contamination.  Stuffing can often contain shellfish too so she will not order anything with a stuffing.  She's allergic to other foods so Asian food was already unsafe.  I would question Asian food.

I am hoping your cruise line is well prepared for a passenger with allergies.  I know people who have taken cruises with children with allergies and been treated very well.  Food prepared safe and separate and served to the table.  Special safe snacks set aside for that child.  I've heard great things about the cruise staff in general knowing the child and checking in with Mom and Dad about any other needs.

It's just going to take you some extra planning as as you are already doing, packing some extra foods.
Title: Re: Is this as dangerous as I think?
Post by: Linden on January 18, 2014, 07:10:25 PM
The Epi Pen goes everywhere. 

I have learned to tune out the "you are being overprotective" vibe that I get from others.  I don't argue with them but I also don't change what I am doing to keep DS safe.  My son's safety is not a democracy.
Title: Re: Is this as dangerous as I think?
Post by: yelloww on January 19, 2014, 12:02:42 AM
Pb is considered a spread and you can't carry it onto a plane. You can pack a jar in your checked bags though. Not open on a plane, nor sandwiches. They will toss it at tsa security.

I know this from experience with sunbutter.  ~)
Title: Re: Is this as dangerous as I think?
Post by: hezzier on January 19, 2014, 08:51:12 AM
Quote from: yelloww on January 19, 2014, 12:02:42 AM
Pb is considered a spread and you can't carry it onto a plane. You can pack a jar in your checked bags though. Not open on a plane, nor sandwiches. They will toss it at tsa security.

I know this from experience with sunbutter.  ~)

Yellow- can you clarify the bold?  Are you saying you weren't allowed to take sandwiches on the plane?
Title: Re: Is this as dangerous as I think?
Post by: yelloww on January 19, 2014, 09:55:42 AM
Not sandwiches w spread on them that I made from the sunbutter. But turkey sandwiches are fine go figure. This happened years ago. And no half opened sunbutter in carry ons either...
Title: Re: Is this as dangerous as I think?
Post by: hezzier on January 19, 2014, 10:17:45 AM
I understand no go on the jar of sunbutter, interesting about the sandwiches...we always travel sunbutter sandwiches and have never had any issues.
Title: Re: Is this as dangerous as I think?
Post by: hedgehog on January 19, 2014, 10:29:05 AM
My guess is that you got an @$$hole security agent.  I can understand the jar, but the sandwiches should definitely be allowed.
Title: Re: Is this as dangerous as I think?
Post by: CMdeux on January 19, 2014, 10:35:04 AM
That is one reason why we carried documentation from our allergist re: the need for specialized food to be carried with us.  If push came to shove, no WAY was I going to let a security agent throw away all of DD's safe food at the outset of a 24 hour airport adventure. KWIM?

Title: Re: Is this as dangerous as I think?
Post by: twinturbo on January 19, 2014, 11:36:48 AM
 :o omg arguing the form of spread. why on earth did that never occur to me.  :smooch:

OP is going on a cruise. Considering where OP is located it's probably just driving to the ship to board.
Title: Re: Is this as dangerous as I think?
Post by: DysonsMom on January 19, 2014, 08:37:33 PM
Yes, we are driving down. There are a few perks to Florida living!
But we travel at least once a year, and sometimes that involves flying. Plus, the boarding policies on ships can be pretty strict. So thanks for the airline tip.
After doing a little research, I found that the ship will allow foods for special needs, if it is prepackaged and unopened. So, I will take a ton of that sort of stuff, along with a note from the doctor.
On a humorous note, I took a hamburger and fries for him to his church dinner tonight. One of the youth directors pointed out the irony of "healthy" food for him being a burger and fries, as opposed to the mystery meal of the evening!
Title: Re: Is this as dangerous as I think?
Post by: Macabre on January 20, 2014, 10:34:42 AM
So for daycare meals on the ship, You might consider avoiding nutty things.  PB sandwiches and granola bars terrify the parent of a peanut allergic child. It would be a kindness. :heart:

As far as dining out--my shellfish allergy poses far more problems to me than DS' peanut allergy does to him. I am typically the one who makes eating out moe challenging for my fam. :-/
Title: Re: Is this as dangerous as I think?
Post by: DysonsMom on January 20, 2014, 11:34:36 AM
Don't worry--I don't plan on letting him eat in the daycare at all. :-)
And I can see what you mean about dining out. He is 4 and his allergy means no burger and fries if shrimp is on the menu. No fried chicken. No chicken nuggets. No grilled chicken. I just do not trust the kitchen staff not to cc. And now that I know that things like bullion and broth can have warnings...It seems like deserts and breads are fine, but entrees pose a problem.
At his age, I can just take a Happy Meal with us and he will be thrilled, but it will be a bit more difficult when he gets older. (By the way, I hate to give him Happy Meals. There is a certain irony that they are the healthier option for him.)  ~)
Title: Re: Is this as dangerous as I think?
Post by: CMdeux on January 20, 2014, 11:47:13 AM
Pop Tarts-- it's what's for breakfast, lunch, and dinner??


:thumbsup:


I get SO sick of sweets when I travel.  Seriously.

Title: Re: Is this as dangerous as I think?
Post by: Linden on January 20, 2014, 12:51:57 PM
Quote from: CMdeux on January 20, 2014, 11:47:13 AM
Pop Tarts-- it's what's for breakfast, lunch, and dinner??


:thumbsup:


I get SO sick of sweets when I travel.  Seriously.



Yup.  And Fritos.  Last cross-county flight DS ate Fritos and Pop Tarts and a few EJL bars.  He was quite the happy pre-schooler.  But he was hungry by the end and ended up eating dinner at 3:00 a.m. when we got back.