reaction on vacation -nightmare!!

Posted on: Sun, 07/28/2002 - 3:24am
juliasmom's picture
Joined: 06/11/2002 - 09:00

pWe just returned from the Catskills (upstate New York). Our 1st trip since Julia's PA/TNA diagnosis 3 mos ago. We stayed at a resort that is 25 miles from the nearest hospital. It's where my husband's family has gone for years. Believe me, I wouldn't have chosen it. We inquired about closer med care and were told a fully-equipped ambulance station was within 5 miles. We brought our own food for Julia, met with kitchen staff, thought we had done all the right things. On last day, her cousin had a pb sandwich. Looking back, I should have told my SIL no. I was stupid, not wanting to impose. Anyway, after cousin ate it, Julia (my 21/2 yr old) dropped her blankie. Her cousin grabbed it, then Julia did, and the damage was done. The first thing Julia said was "My tongue hurts." I grabbed her, ran to our room, grabbed my backpack, and went to call 911. We had 3 epipens, but had never used one! I had worked with Trainer pen, but it is so different!! My hubby shot the 1st one into the air by accident. A nurse saw us struggle and offered to help. She shot the 2nd one into the air! Thankfully I had brought the 3rd one! We got that into her thigh and waited for the ambulance.It took 10 minutes. When they arrived it was clear they were not well-trained. And there was no epinephrine on board. This was the volunteer ambulance - all others were out on calls! By now, Julia's face was like a balloon with hives, mucus running out of her nose, eyes swollen almost shut. And we had 25 miles to drive to the hospital. They went very fast, and her airway remained open. At a few points her eyes seemed to roll back, and she was very lethargic. But we made it. When we got there, the ER doc was a jerk. He told me this was not (as I had said when we came in) an anaphylactic reaction, because her airways hadn't closed. They treated her with steroids, albuterol (asthma rescue meds) and benadryl. Within 3 hours they discharged her. We waited an additional hour just in case. I have really felt anxious, guilty and confused ever since. Lessons learned: vacation closer to hospital or equipped ambulance service; be willing to "impose" to protect my child; carry extra epipens; practice once with a real epipen on an orange. Sorry so long. I thought this might help others prevent disaster. Any other insights out there?br /
Mary Beth/p

Posted on: Sun, 07/28/2002 - 3:46am
SF's picture
Joined: 06/06/2002 - 09:00

Juliasmom: I am so sorry to hear about what you went through and I hope your child is doing well now. I really appreciate your sharing this story with us as I am nervous about planning a vacation with my PA 4 1/2 yr old. I have been saving up expired epi pens to use for practice with an orange and now I will do this ASAP!

Posted on: Sun, 07/28/2002 - 7:39am
Going Nuts's picture
Joined: 10/04/2001 - 09:00

Yikes Mary Beth!
What a nightmare. I'm so sorry you had such an awful experience.
If you don't mind my asking, where were you in the Catskills? We're headed up there in about 2 weeks. It's a beautiful part of NYS (but I bet you never want to see it again [img][/img] ).
[This message has been edited by Going Nuts (edited July 28, 2002).]

Posted on: Sun, 07/28/2002 - 12:51pm
AlwaysAvoidAnaphylaxis's picture
Joined: 06/23/2001 - 09:00

What a nightmare! I would have been hysterical. I also would have been mad at the ambulance folks! Why send out an ambulance at all?!?! I would tell FAAN ([url][/url]) about this entire episode so that it will push NY to have epi on all ambulances and trained personnel to give it!!!
So important to carry MANY epipens with you. I think we should buy more! Thank God things turned out OK. You must tell the folks at FAAN so that they can followup on this.

Posted on: Sun, 07/28/2002 - 1:12pm
LJG's picture
Joined: 05/23/2002 - 09:00

Mary Beth, I'm really sorry this happened. You all must have been scared to death. I am curious, why were the epis shooting into the air? Just so nervous handling them, or are they really trigger sensitive? We have yet to use one in an emergency, but we did fool around with an expired one to see what it was like. I was a total imbecile and forgot which end shoots the needle out...the end result was my husband getting injected in the thumb. It was like a bad Three Stooges skit! Luckily, no lasting ill effects to the thumb. I hope you and Julia are OK now and relaxing at home. Kylie and I are off to Canada for our vacation tomorrow. Will get in touch when we get back.

Posted on: Sun, 07/28/2002 - 6:41pm
ktmom's picture
Joined: 05/15/2002 - 09:00

Oh Mary Beth..what a nightmare! Hope Julia is doing okay now

Posted on: Sun, 07/28/2002 - 8:37pm
Claire's picture
Joined: 04/19/2000 - 09:00

I am very sorry about what happened to your daughter. Hope she is doing ok now. Take care claire

Posted on: Mon, 07/29/2002 - 1:48am
Claire's picture
Joined: 04/19/2000 - 09:00

Marybeth, I see you don't have an email on the boards. If you would not have a problem mailing me on my mail I would love to ask you some questions that I don't wish to post just yet. Thank you Claire

Posted on: Mon, 07/29/2002 - 5:54am
anonymous's picture
Joined: 05/28/2009 - 16:42

Dear Julia's Mom,
I am sorry to hear of your nightmarish vacation. I was especially disturbed by the ER doctor's remarks since, from your desription, this appears to be the same hospital that we always go to in emergencies. The bottom line was that your daughter was very sick and needed emergency treatment. Whether or not her symptoms met the clinical definition of anaphylaxis was beside the point. I would write a letter to doctor in charge of the ER and let him or her know how poorly you were treated.
I notice from your profile that you are from Ann Arbor. Do you know about FAE? It's an education group for people with food allergies and is based in Ann Arbor. Their web address is [url=""][/url]

Posted on: Mon, 07/29/2002 - 9:42am
juliasmom's picture
Joined: 06/11/2002 - 09:00

Hi everyone - thanks for your support, comments and questions. Julia is fine now. She was pretty swollen for 3 days. One other thing i should mention, especially for those vacationing or living in rural areas, is that most ER's prescribe steroids after you're released from the hospital. For toddlers, these can be hard to take (really bitter) Since we'd been through that before with Julia during severe asthma episodes, I know that Orapred is much easier to get a little one to take. And NONE of the CVS pharmacies in the Hudson NY area (that's where the ER was) carried it!! Next time, I would bring it with me, JUST IN CASE. I had some in my fridge at home! (sigh)
Amy, we were in East Durham, near Cairo. Claire, you asked for my e-mail. It's [email][/email] Please feel free to write me! Lori, re. the epipen firing into the air. We could not get it to fire into Julia's little leg. DH held it up to examine it, must've hit the black part just right, and it went! Nurse did the same thing! Today we practiced with an expired one on an apple. We found that a steady pressure worked better than a swinging motion. Please call when you get back from Canada. And Colleen's mom, thanks for the FAEMI info. I just found out about them. The medical consultant is who we will soon be taking Julia to. I feel like there's so much I have to learn!! Again, thanks all for your support.
Mary Beth

Posted on: Mon, 07/29/2002 - 9:51am
river's picture
Joined: 07/15/1999 - 09:00

My eyes just welled up reading your story. I can't believe a qualified doctor would be so stupid. Thank God everything turned out ok for you. And thank you for the tip about steady pressure with the epipen as opposed to a quick jab. It makes much more sense despite always being taught the quick jab way.


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