i haven't postedmuch about this, but now its crunch time and I've been getting the "don't worry mrs. mfamom" from school.
2 nights, 3 days out of state field trip.
so far, i have breakfast and dinner at hotel (3 meals) taken care of. I put the kabosh on the buffet for my ds even though they swear the buffet will be free of nuts etc. I feel like my ds needs to follow his food rules and no buffets are one of them. The other night of dinner is taken care of.
They are having lunch at a "food court" and when I looked it up, not one familiar place, plus many don't have contact numbers. On the way home, they are stopping at "a mall" and I was told "your ds can eat where he usually eats fast food".
The last thing that makes me uncomfortable is that they made the school nurse the chaperone for his group. They did this with "good intentions", but I pointed out that just because she's a nurse, doesn't mean she's equipped to help my ds make good decisions to prevent a reaction. Plus, if one of the other 270 kids on the trip needs her, who will be overseeing the kids in her group?
My ds is very good at managing his allergies. I just hate the whole trip. Still need to work out 2 lunch outings. The kids in his room are great friends and they all are trustworthy to not bring food that are unsafe for my ds. Their moms have all checked with me.
Send him with a cooler for all of those other meals. When do they leave? Jar of sunbutter, some bagels, beef jerky all come to mind as our quick reliable travel foods. Oh and a pound of sliced turkey in a ziplock.
If you have time, go to the Campmor store on Rte 17 in that large shopping town that is closed on Sundays and see if you can get some of the freeze dried camping meals. Then he just needs hot water from somewhere to make an "on the go" meal.
http://www.campmor.com/outdoor/gear/SubCategory___40000000226_200368408 (http://www.campmor.com/outdoor/gear/SubCategory___40000000226_200368408)
I'm def. sending him with some food. Good idea to go to that store!
He will not eat sunbutter....unfortunately, he's not big on sandwiches. Beef Jerkey he will eat LOL
I'll see what I come up with tomorrow when I call some of the restaurants.
Dinty Moore and other Hormel meals can be eaten without heating (obviously not as desirable) but might be some options. Both of the kids had those at school on the off chance lunch was contaminated, lost or forgotten.
UGH, now he's sick. I thought he seemed "off" last week. He has sore throat etc. Not sure if it is allergy/cold or if he has something coming on.
When does he leave? How bad does he really want to go?
Funny you ask that. he originally didn't want to go. I am not sure why. Then, he changed his mind.
It went from the teacher who is in charge telling me oh, mfamom I love your DS!! Don't worry I'm all over this....to me saying, thanks for being "all over it, but could I just ask what you know about managing his allergies and what to ask etc?" to "don't be mistaken that "I" am going to be "OK" with someone telling me they have it covered, K?
so , i told her very specifically the information "I" need about this trip. She finally sent it to me on Friday.
So, I took off work today to make the calls for the restaurants I still didn't know about. Day derailed with DS being sick,needing to go to the dr, fill prescriptions....many of the people in the restaurant business apparently take Monday off because NONE of the people I need to speak with are intoday. To make things even better, I just dropped his meds at the nurse. She gave me the "mrs. mfamom. he's almost in HS. what does hedo when he goes out to eat with his friends? I'm sure he'll be just fine."
I literally blew a gasket on her and told her that he doesn't just haphazardly "hang out" and he doesn't go out very often. When he does, it is a deliberate, informed decision in a familiar place. That I don't think he's going to have much fun hitting Quincy market forlunch without some pre planning.
Then I got snotty and said, what exactly do you know about food allergies? (aftershe's demonstrated thatshe really knows zero about what to ask )
Anyway, he does appear to have strep throat....I am sure he'll be fine. I want himtohavefun and he has no idea how stressed out I am righ tnow.
space bar giving me trouble. sorry!!
There's a Mc D's right around the corner from Quincy Market. That's where we go with ds when we are up there for lunch. We've also eaten at Durgin Park with ds but during a lull around dinner time (early dinner or not on a weekend). I love Durgin Park bc my family has gone there for generations- back to my great-grandfather.
I didn't realize you'd be up there. That's the area where I grew up.
so, I spoke to the nurse again today and asked her about ds back up epi pen. she tells me there is no back up, mrs. mfamom. this trip is to "help" get themready for hs.
I say WHAT! ARE you F'ing KIDDING ME!!!!!!! You're 3 hours from home. what if he somehow loses his epi belt? Then what? She says I guess he had better not lose it.
Starts lecturing me about how this is a perfect time for him to learn to negotiate his food choices.
I hung up on her. I'm beside myself. I'mmostly beside myself because I've been trying to get the plan worked out for over a month, but they are last minute Larry on their end. Now they are telling me to Wing it?
Meanwhile, I've been on the phone off and on all day trying to work things out for him.
If I feel like I do right now tomorrow, he's not going.
Quote from: Mfamom on June 03, 2012, 07:52:51 PM
I'm def. sending him with some food. Good idea to go to that store!
He will not eat sunbutter....unfortunately, he's not big on sandwiches. Beef Jerkey he will eat LOL
I'll see what I come up with tomorrow when I call some of the restaurants.
I don't know...I'd never give a new food away from home, that LTFA child has not had successfully at home a few times.
So you or DH are not going right?
I wouldn't be comfortable with the trip, on several levels.
It does not sound like they have things under control. They do not know what they are doing. No, kids with LTFA do not "just go to restaurants with their friends to hang out".
Given I know your DS is very responsible, and you have a good situation with the friends, I think it'd be ok...but I do not like their attitude that you need to just relax because this isn't a big deal. Oh yes it is, eating away from home for 3 days with adults that don't seem to know what is required for a person with LTFA to eat safely.
Good luck and let us know what you decide.
Ooof! They sound like they have no clue what we or your ds go through on a day to day basis! Will they even know what to do if he loses the Epi? If the best they can do is "well he better not lose it" then they are probably borderline negligent.
I would have hung up or wigged out too, and if it were my ds and I was getting the bs you are getting today, I wouldn't send him either! Sheesh!
It is doable, but not if or when you are dealing with what appear to be clueless people. Then it just isn't.
And tell them they can go pound sand if they think they can dictate when and how your ds should be ready to navigate on his own! They aren't the experts!
:o
I would like to send them a list of names....and details of schools that didn't get it.
Wow :disappointed: I have to say I would keep him home.
Well, as my 13 year-old son would say,
"Good Ghandi (who was not Japanese) . . . " (NOT a racist thing -- just an odd phrase he started saying in some weird accent when he was faced with mountain of sh** . . . )
followed by,
"My life is worth more than this, Mom."
:heart: :smooch: :heart:
No back up Epipens on ANY trip? That would be definition of insanity in our lives -- in THIS household, anyway.
And the nurse thinks that minimal knokwledge of "food choices" in a "winging-it-way" would be just hunky-bleeping-dory for your son?
Nice.
I'd better shut up a little bit now.
So hard... I'm sorry. When people so clearly don't get it, there is not much you can do. Trying to continue to explain rarely works.
I hate the "he needs to be responsible" BS too. So much is required of our children already... Speaking to the choir!
Good luck with the decision. :heart:
No back up pen at home in a familiar environment, somewhat scary.
No back up pen on a trip, without parental guidance (though DS1's last reactions have been on trips with parental involvement), not happening.
I agree that it could be a trip to teach some independence to kids who aren't dealing with medical issues but it sounds like you have a nurse who thinks you are a helicopter parent. There is no on the fly decisions that are made when food can end your life.
Have you checked out www.allergyeats.com (http://www.allergyeats.com) - which has a list of restaurants that others have rated based on allergies? That is my go to site now when traveling.
Quote from: yelloww on June 04, 2012, 08:17:59 PM
Ooof! They sound like they have no clue what we or your ds go through on a day to day basis! Will they even know what to do if he loses the Epi? If the best they can do is "well he better not lose it" then they are probably borderline negligent.
And tell them they can go pound sand if they think they can dictate when and how your ds should be ready to navigate on his own! They aren't the experts!
Right, they are borderline negligent here because DS is a CHILD. And THEY are the adults and educational/nursing professionals that have had plenty of time to plan this trip in a safe manner. You might want to ask the nurse if you can quote her on what she said "well he better not lose it".
And, exactly, there is even a statement in the state law that addresses the extra precautions that need to be taken for teenagers since this is the highest risk group, due to increased independence, influence from peers, etc.
sigh.
What did you decide, mfamom?
Quote from: ajasfolks2 on June 04, 2012, 09:14:31 PM
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No back up Epipens on ANY trip? That would be definition of insanity in our lives -- in THIS household, anyway
Right, and as per state law, backup pens ARE permitted to be stocked by nurse. So that nurse should be taking them on the field trip if children with anaphylactic allergies are attending. Do all of them even self-carry?
Worse case scenario beyond losing epi-pens.
What if your son has to use his epi-pens on this trip?
What if it misfires (which ultimately caused the death of the college student in GA)?
What if needs more than 1-2 pens before an ambulance arrives? What if he is released from the hospital and has a biphasic reaction?
He's a teenager with a good head on his shoulders and handles his allergies well. However that aside, there is risk involved when eating out especially at a place that you are not familiar with. He will be rooming with other teenagers who on the surface get the allergy but away from their parents do they understand a Snickers bar can be a loaded gun for your son?
I am not trying to say these things to up your already high anxiety about this trip - just trying to add some points on why not having back-up Epis is not an option. Clearly the nurse doesn't understand this, you need to move up the chain of command. (Thank god our nurse gets it because her supervisor is a tool).
Couple of questions if you will.
1. How many in your child's group per adult chaperone (uncooperative nurse)?
2. How many children per adult chaperone in other groups?
3. Is there another adult chaperone available with a group of kids friendly towards your child?
4. What sort of distance and mode of transport is this? Is "out of state" merely over a close border or hours by car or plane?
Well, I think I have things so that I feel good about the trip.
Took a lot of phone calls, a tiny weeny bit of "tone", a bit of persistence and a lot of patience to getthere though.
I spoke with the nurse and asked her about her being a chaperone AND the nurse (I also brought it up the other day).They now have 2 nurses attending the trip. Her rationale about not bringing my ds other epi pen is that he carries a Twin Ject. she felt that she wouldn't give him beyond 2doses blah blah. She will have his back up epi pen in case.
I have the meals planned for each day. I've spoken with chef/food service at all placeshe will eat. He has the list of "approved" places in his phone and will still take note of things when he's there same as we would at any other restaurant.
No nuts/peanuts allowed on the bus.
In all my craziness, plus working 9 days straight, I just checked his epi pens and of course, they expired in May. Frantic call to cvs praying they had the twin ject (it fits in his epi belt, epi pen doesnt) they do. now 11pm for pick up.
The boys he's rooming with are kids he's been great friends with since elem school. They all got a twin ject demo today and all their moms called to check on the snacks they will have for the room.
My ds is very with it. I probably worry more about him getting prompt help if he needs it, YK?
The school actually did a lot more than I realized (due to so so communication. ) the tour company called me today after I'd sent a crabby email to the main teacher. They have a staff member that is traveling with the group who has been in touch with any accommodations etc. So, all the restaurants except quincy market knew about the allergy needs/concerns.
Anyway, I need to go to get the refills/go to bed.
Thanks for your help
Good! That sounds much better than the way they were first speaking about it!
I'm glad it worked out. I was initially thinking (your first post): this could work and could be a very good thing.
But then, that nurse. Wowza. DS has gone on a lot of school trips--four without us, but none of those overnight. And they worked because we worked things out in advance--food, extra epis. The extra epis are in his 504, and the band and theatre folks would NEVER dream of not having them. Our band director is johnny-on-the-spot with them.
Goodness--if it's so important to the school to make this a trip that helps the children mature and transition to high school, make it possible for them to go, yk?
So, I was going to tell you to document this up the wazoo. And maybe you should anyway. Or maybe you should just give yourself a break and move on. (((hugs)))
dropped him off at 5:45am. LOL he was up and moving! Usually it is pure h3ll getting him up.
He's excited. You should have seen the bag of food he has for the 5 hour bus ride. You'd think he has a line on the famine. He has everything. Epi pens, inhaler, underwear, toothbrush
I definitely did not like the whole "we have it under control" attitude. They meant well I think. Its just that you cannot say "we have it covered" when dealing with allergies as you all know. He has the location and details for all the meals on his phone and written on a note card.
I think he will be fine. I, on the other hand, may need some anti anxiety meds.
Schools like to take the "We have it covered - we are the educators" approach with parents. However, it is not effective with parents of children with LTFA who must know the details about food and medications and have a well laid out plan and excellent/ proactive communciation.
So who trained the peers on TwinJect? the nurse? Interesting they would do peer training. Good, though.
So I'm curious...what about the other allergy kids? Will they be self carrying? Eating at buffets? Do these parents check in with the nurse also, or just assume everything is covered?
I showed them all with blessings from their moms. My friend who is a nurse was there too. They have been shown before because they are with my ds a lot. They are good boys.
Really liked the redundant eating info on phone AND on card.
Cannot ever depend on the electronics for the info.
If too much to keep in head, should be in writing in pocket or wallet.
Laminated card is something I'm going to work on with kids & hubby (and to give grandparents) this summer.
((Note to self, I'd really like laminating machine . . . would be really useful . . . ))
:grouphug:
Hope all goes well. He'll be pooped when he gets home. It'll be OK.
he's home. He had a great time, they are exhausted. LOL they did a lot of fun things....saw the blue man show, duck tour, quincy market, science museum, etc.
he said that the first day when they stopped at plymouth plantation, he didn't eat because the people made him uncomfortable.
I had called and spoken with the food manager there. the lunch was turkey, mashed potatoes, stuffing, green beans and cranberry sauce.
She assured me they work and accommodate people with allergies all the time. I felt okay with what she said...that everything is from scratch, no peanuts in the kitchen etc.
So, that day, someone fromthe place approached him and gave him the "no guarantees" speech! Something like, we don't have pb/nuts in the kitchen and we make bread etc from scratch, but we can't guarantee anything.....
UGH. wth?
The nurse was of no help. they made him a salad and he ate tostitos that he brought with him.
Otherwise, all went well.
Phew. glad its over. this trip has given me anxiety since he was in first grade (back then thinking forward).
Glad it went well. And actually, good for him to have the experience to be on his own and to decide what's a deal breaker for him. And that that's okay. Probably good for you to know he did this, too. :) Although I bet you already had high confidence in his choices. :yes:
What a relief that it's over. For all of us!
So glad it went okay! I've been thinking about you guys. :thumbsup:
Yay - glad it went well. Except for the Plymouth lunch...that is disappointing. Glad that was the only issue.
Did nurse try to call you or work with him to ensure he had enough to eat? Sounds like she could have been more helpful...also that's an example of what we deal with all the time. Even when it IS safe, sometimes restaurants don't want to serve the person with food allergies.
Funny, the day they returned, i picked him up, dropped him home and went back to work. realized on way to work that he probably didn't get his night meds back. Ran to school to get them. I said to nurse, how did it go? she was a bit short and said, he's home alive and well...and that she already gave him back his meds.
so, yesterday we had a town day and I was there promoting our company. nurse lives in town and she came up to me and said that she didn't mean to be short, she had some calls etc. but told me what a great kid DS is and how she was impressed by his manners/behavior but said that she got a real eye opening lesson about how tough it can be to eat that many times with allergies. She said that the other allergy kids followed him around like puppy dogs. (not all of their moms did much to help them on the trip).
So, all I know is I'm glad it is OVER!! LOL
just reading this thread --- I'm so glad it went well for him. LOL about the amount of food on the bus --- My dd had the same; it came in handy a couple of times!