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Posted on: Sat, 05/27/2006 - 12:16am
Lori Jo's picture
Joined: 09/17/2003 - 09:00

All of these are good responses, and you have the right to think long and hard about it. While reading over everything, I was also thinking "what about plane rides?" Do you feel "safe enough" to do those. Guaranteed it would take longer than an hour to get anyone to an ER of any sort if they had a reaction mid-air. Do I still fly. Yes. Do I still worry. Yes. Would a week of worry be trying, instead of just several hours. Yes. I think I would still go though, if I thought the family would not be eating PB&J all over the place, and took your child's PA seriously. There is risk management (taking her food, educating the family, taking the epis) and total risk aversion (not going at all.) I choose to live with risk management. I don't want my dd to feel that she is seriously limited/tethered/whatever. Saying this, we have elected to not take her to China next year (way too many variables and risks for my comfort level.)
Bottom line, everyone's comfort level is different. I hope you find a decision that feels right for everyone.
Lori Jo,
Rose, 7-31-02, PA
Beatrice & Georgia, 8-14-99

Posted on: Sat, 05/27/2006 - 12:20am
Peg541's picture
Joined: 12/29/2002 - 09:00

Quote:Originally posted by hblmom:
[b]We are going camping in the Adirondacks, I think it's maybe 15 minutes to the nearest hospital.
Our med pack for each child consists of 4 epi-jr's, ora-pred, tagamet, atarax for dd(allergic to Benadryl) Benadryl for ds, also albuterol inhaler/nebulizer for ds (asthma), but I would use it on dd too if I heard wheezing. [/b]
This is about the same list of meds we sent with our son on his way to Scotland for a semester. For the plane and for times when they traveled to the Highlands and would be far from assistance. He was also extremely careful with his eating while he was away from civilization.
That being said I should also say he's 21 and totally responsible. With a little one you never know. We have turned down vactions for the same reason many times.

Posted on: Sat, 05/27/2006 - 1:26am
perpetually perplexed's picture
Joined: 02/12/2005 - 09:00

Ethans mom,
How many times has Ethan had a reaction, been to the hospital? Is it a regular event?
I personally think that if you bring his food and clean area properly before preparing that you should be fine.
We have taken vacations like that before and I had just asked the friends and family not to bring or use any peanut products that weekend. It was not a problem and it worked out ok. You can't keep locked up in your house forever.

Posted on: Sat, 05/27/2006 - 3:18am
Ethan Mom's picture
Joined: 03/27/2006 - 09:00

Thanks so much for all the insight! I really appreciate everyone's thoughtful opinions, as well as their personal experiences.
We ultimately decided not to go. It just felt like we were scrambling to get ready and my husband and I just did our own risk/benefit sort of analysis, and decided not to travel this weekend. Ethan was orginally supposed to go to his grandparents for the weekend, while DH and I enjoyed 2 days at the beach with our couple friends (who don't have kids). E's grandparents had something come up at the last minute, so we had to decide whether or not to take Ethan with us, or cancel 24 hrs before leaving.
I just didn't feel like there was enough time to 1) prepare our friends and educate them 2) get all his food ready (we let grandparents cook him plain meats, veggies, and fruit) and 3) get Ethan "packed" for beach conditions, as opposed to grandparents. I'm kind of a thorough (anal?) planner, so changing things in mid-stream is not something I am good at.
To answer a question, E has been to the ER twice, one for a mystery asthma attack and once, just 2 weeks ago, when he put a whole peanut is his mouth that he found on the floor of the mall. Also, we just got his test scores back from the allergist that found he is "4 times more allergic" than one year ago (when one year ago he was SEVERLY allergic) and that the allergist was sure "if E ingested nuts [he's allergic to tree nuts too], he was 100% sure he would have severe anaphl. and crash quickly [also bc he has asthma]." Right now, I am just feeling a little raw, I guess, about taking risks, even small ones. I don't want to keep him locked up, but given the recent mall incident, was a little wary about being so far from medical care if the "what ifs" were to occur.
To those who talked about extensive travel, that is great, and I hope Ethan gets to enjoy that someday. It's wonderful hear that you have all managed the allergy, and been able to see the world.

Posted on: Sat, 05/27/2006 - 6:24am
starlight's picture
Joined: 01/16/2004 - 09:00

Quote:Originally posted by Ethan Mom:
[b]To answer a question, E has been to the ER twice, one for a mystery asthma attack and once, just 2 weeks ago, when he put a whole peanut is his mouth that he found on the floor of the mall. Also, we just got his test scores back from the allergist that found he is "4 times more allergic" than one year ago (when one year ago he was SEVERLY allergic) and that the allergist was sure "if E ingested nuts [he's allergic to tree nuts too], he was 100% sure he would have severe anaphl. and crash quickly [also bc he has asthma]." [/b]
You know, RAST scores (the blood test) aren't really that predictable. You can be a class 1 (way low) and go into anaphylactic shock, or you can be a class 6 (way high) and not have trouble with traces. It's good for saying if you are allergic and if you have a whole bunch of scores you can show a trend toward outgrowing or getting worse, but I'm pretty sure you CANNOT tell the severity of your next reaction based on your test scores. I'm not saying your allergist is totally wrong, it could happen that way, but it's just way too unpredictable an allergy to know for certain how a reaction will play out.
Also, RAST scores go WAY up if you test right after exposure to an allergen. If you got him tested within a week or so of putting the peanut in his mouth, that could really skew his scores. So if you didn't allow enough time after the mall incident and it's bothering you, wait a month or two and test again and you'll get a more accurate score.

Posted on: Mon, 05/29/2006 - 2:42pm
Triciasmom's picture
Joined: 08/03/2000 - 09:00

I've dealt, several times, with extended vacations into remote areas. Bottom line is that it is a risk for everyone to be far from 'civilized' medical services. You could get into an accident or find out that you are allergic to bees or have a heart attack or stroke.
At some point, you just need to find your own comfort zone.
For me, that means a cell phone with analog signal capabilities, two epipens, benedryl, and food that is known to be safe. If we are far from reasonable emergency facilities, we do not eat at restaurants.
Once, this meant that both of the kids had corn tortillas and water for dinner. Then we got better about packing food to bring into the restaurant if need be.
A couple years ago, we were out camping, nearly 45 minutes from the nearest medical facility. My older daughter, the one with PA, came down with tonsilitis. Can you imagine? 2 a.m. in a tent on the Olympic Peninsula, and my kid is running a disturbingly high fever.
We ended up breaking camp in the morning and staying at a furnished cabin, driving into town to see a doctor. It was scary.
Anyway, what I am trying to say is that you do as much as you can.... bring your own food, be thorough about cleaning up eating areas. And don't go on a vacation that will have you stressed out to the point of a nervous breakdown. Vacations are for relaxation. And if you can't find enough of a comfort zone, then do something else. [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img]
PA is stressful, but it doesn't mean you have to stay close to home all the time. And honestly, I have found that there will always be moments of concern and stress, but it does get a little easier with time and experience.

Posted on: Mon, 05/29/2006 - 11:06pm
Ethan Mom's picture
Joined: 03/27/2006 - 09:00

Hi again -- Starlight, that is a good point re RAST scores. Unfortunately, my son has his blood drawn for the CAP RAST the morning before he put the peanut is his mouth, so the allergen exposure happened after the test. Thanks for the input.
Also, re camping, I guess you do the best you can, and try not to worry (too much). We're still trying to figure out our own comfort zone as new things arise.

Posted on: Tue, 05/30/2006 - 7:20am
ceross's picture
Joined: 01/27/2004 - 09:00

Quote:Originally posted by Ethan Mom:
[b]Alright --- so after many many phone calls, here is what I found out by talking to someone at the local police dept on Chincoteaque Island:
1) The only ambulance available on the island is on "a volunteer" basis, and they cannot guarantee that someone will answer the call. If an ambulance is not available on the island, they dispatch one from the mainland (again volunteer -- assuming that one is available). The closest "paid" ambulance service, thus available all hours and weekends, is one + hours away.
2) Some ambulances that are dispatched to the island have ALS, some do not. It all depends if one is available when you call.
3) She could not give me a ETA for emergency calls -- said it could be 20 min, could be one hr, depending on where it comes from.
4) They is a Medic-vac type helicopter system 1.5 hrs away (drive time). They do not dispatch the helicopter until the ambulance arrives (whenever the heck that is -- see 1) and 2)! above -- and the ambulance crew would call for the helicopter.
5) The closest hospital that the ambulance transports to (if and when they show up) is 1+ hrs away and there are no medical facilites on the island open on the weekend to treat medical emergencies.
I guess I just answered my own ?s -- heads up to anyone heading toward Chincoteaque this summer. Just talked to DH about all of the above with ER med care and he said "well, we can mull it over and decide later?!" Umm, it is only moms that worry about these things???[/b]
Wow, I guess ignorance is bliss. We went to Chincoteague last summer. We stayed at the Hampton Inn and were there over July 4 weekend. We, thankfully, did not have any problems but really didn't find much to eat beyond the McDonald's (really dirty; only went once) and Ledo's pizza. Every other restaurant served only seafood (we're avoiding for now). I pretty much decided we'd not go back but your info about the medical support has finalized that decision. It's a shame. The beach at Assateague Island is beautiful and seeing the ponies was fun. However, I wasn't that impressed with Chincoteague.

Posted on: Tue, 05/30/2006 - 9:21am
Ethan Mom's picture
Joined: 03/27/2006 - 09:00

Ceross -- I am curious --- was it the beaches you didn't like or just the whole island itself? Any specifics? I have never been and don't know much about the place (other than the emergency triage system - -ha!)
Anyhow, DH has a demanding not-much-time-away type of job, and I have to practically drag him kicking and screaming from the office to take vacation days. That said, we were thinking about going down to Chincoteaque with some friends (and having our PA son stay at grandparents) sometime later in the summer. It sounds like you don't think it is worth using hard-to-come by vacation time on that destination? If I am going to sit in Bay Bridge traffic with the rest of Balt/DC, I want to enjoy when I get there. Any specifics about what you didn't like? Have you been to Bethany/Rehobeth --- are those nicer (and also better for PA/eating out-- if anyone has any imput on those places)?

Posted on: Tue, 05/30/2006 - 1:52pm
ceross's picture
Joined: 01/27/2004 - 09:00

Ethan Mom,
I loved the beach at Assateague. It was beautiful and nice that there were no hotels built up on it. We would get to the beach early (before 9 a.m. and stay until about 1 p.m.; traffic getting on to Assateague when we were leaving was bad). Never felt crowded at the beach and it was a holiday weekend. The waves, though, were pretty strong. I got knocked down and cut up my leg on bits of shell. Still it was fun to see dolphins in the distance and pelicans flying along shore. It was also nice to look up and see the lighthouse on the island.
I didn't really care for Chincoteague the island. It's kind of tacky. I'm originally from NY/CT and am not really used to seeing "Git Er Done" and Confederate flag stickers (though these seemed to be pervasive on the mainland too).
We stayed at the Hampton Inn, which was clean and nice and at which the staff was pleasant and friendly. However, the hotel (and unfortunately our room overlooked this) is next door to a couple of run-down houses with boat parts, etc. and was next to an oyster trawler dock. Chincoteague seemed to be a mix of run-down, tacky hotels and touristy souvenir shops with a couple of nice places mixed in.
As I said, we had trouble finding restaurants where we could eat (we had egg and peanut allergic daughter with us). The Ledo's was OK but the McDonald's was one of the dirtiest I've ever been to.
Perhaps part of the problem was that it didn't meet expectations. I suppose I was expecting the quaint village of the Marguerite Henry books. It certainly isn't as quaint as what you find on Nantucket.


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