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Posted by GingerPye
 - June 10, 2012, 09:14:24 AM
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! 
Posted by Mfamom
 - June 10, 2012, 08:09:37 AM
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 
Posted by rainbow
 - June 09, 2012, 02:10:11 PM
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.

Posted by momma2boys
 - June 09, 2012, 09:50:37 AM
So glad it went okay!  I've been thinking about you guys.  :thumbsup:
Posted by Macabre
 - June 09, 2012, 07:07:30 AM
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!
Posted by Mfamom
 - June 08, 2012, 09:24:03 PM
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). 
Posted by ajasfolks2
 - June 06, 2012, 09:51:56 PM
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.

Posted by Mfamom
 - June 06, 2012, 12:14:37 PM
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. 
Posted by rainbow
 - June 06, 2012, 10:13:02 AM
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?


Posted by Mfamom
 - June 06, 2012, 08:02:07 AM
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. 

Posted by Macabre
 - June 06, 2012, 06:45:35 AM
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)))
Posted by yelloww
 - June 06, 2012, 06:39:24 AM
Good! That sounds much better than the way they were first speaking about it!
Posted by Mfamom
 - June 05, 2012, 09:23:48 PM
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
Posted by twinturbo
 - June 05, 2012, 02:59:06 PM
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?
Posted by YouKnowWho
 - June 05, 2012, 10:36:40 AM
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).