Crystal Palace allergy report - bad bad bad

[MSSANDRA]

So glad she is ok!

Does everyone else with allergy kids carry benedryl??? We carry it along with the epi pen (peanut and milder egg allergy) and we have been intructed by our dr if we even suspect a possible exposure to peanuts to use it right away.

We have had to use it for eggs a few times but it has always been my fought and not a resturant's.

 

[MeLaNie9]

So glad she is ok!

Does everyone else with allergy kids carry benedryl??? We carry it along with the epi pen (peanut and milder egg allergy) and we have been intructed by our dr if we even suspect a possible exposure to peanuts to use it right away.

We have had to use it for eggs a few times but it has always been my fought and not a resturant's.

I know of people that carry the Bendryl spoons with them. Sadly, our son's allergy (MPIES) is not IgE related but a delayed hypersensitivity reaction which causes severe vomiting and diarrhea about 2 hours after ingestion and can lead to hypotension. It is not responsive to Benadryl or Epi. Its just so difficult to travel with these situations and we had been so happy with our experiences at WDW - so disappointing to hear about OP's experience.

 

[clanmcculloch]

I know of people that carry the Bendryl spoons with them. Sadly, our son's allergy (MPIES) is not IgE related but a delayed hypersensitivity reaction which causes severe vomiting and diarrhea about 2 hours after ingestion and can lead to hypotension. It is not responsive to Benadryl or Epi. Its just so difficult to travel with these situations and we had been so happy with our experiences at WDW - so disappointing to hear about OP's experience.

I carry Zyrtec in those single serving spoons (we use 2 per doctor's orders). While it is an antihistamine, the way it works is as a Mast Cell Stablizer. The type of inflamation that DD12's doctor saw in her hut includes an increase in mast cells which means an immune reaction to foods. She doesn't have IgE reactions; they're mostly IgG reactions though some are "other" meaning I don't know how to explain the reaction but it is immune in nature just not allergic in the sense that people think of allergic. She currently takes a type of mast cell inhibitor designed specifically for the gut (Gastrocrom) twice per day so Zyrtec is our emergency medicine as it works on that same reaction but in a more immediate fashion. Granted, we generally don't know when she's been exposed but I need to try to get more pro-active when I suspect she has been.

Zyrtec is the regular allergy medicine we use for DD9's regular environmental allergies so an extra dose of it works for her food allergies to help but we do also have an epi pen for her (knock on wood, we've never had to use it as she's never had a dangerous reaction but her tests indicate that a few of the allergies are very high so we don't want to take a chance).

 

[atmail35]

I'm glad your DD is ok, how scary. I'm very nervous now since our first dinner is at CP! DD is peanut/tree nut/egg allergic. We also are going to Disney b/c of the great rep. on food allergies.

I'm definitely going to "feel out" the chef and make sure I'm comfortable (I always do anyway) before she eats anything.

I normally would NEVER let her eat at a buffet here at home, I really thought Disney "had it down" on how to handle though. This is disappointing to read.

Does everyone else with allergy kids carry benedryl??? We carry it along with the epi pen (peanut and milder egg allergy) and we have been intructed by our dr if we even suspect a possible exposure to peanuts to use it right away.

We have had to use it for eggs a few times but it has always been my fought and not a resturant's.

I don't generally give Benedryl. Our allergist told us that only EPI can stop/help with anaphylaxis. Benedryl can actually mask other symptoms (itchy troat, other hives). If you do give Benedryl, watch your child very carefully to make sure the reaction isn't getting worse.

Personally I'd rather my DD be a little itchy from hives and be able to tell if she is progressing towards anaphylaxis. BUT the problem with food allergies is that every allergist has a different opinion, which is very frustrating!

Anyway I'm NOT a doctor but that's the advice we've been given.

 

[dis-happy]

We do the Benedryl on advice of our ped. Have our first appt. with the allergist next week so I'll see if that advice changes.

So far my ds (age 2) has had reactions to peanuts, egg (seems to be okay in baked good though), sesame seeds.

In all the reactions (starts with swollen lips) the benedryl worked, although I had the epi pen in hand with his last reaction to sesame...half his face swelled up. But within 20 minutes he was okay again.

So mad (and scared) to hear that benedryl is on the recall list today!!!

 

[MSSANDRA]

We do the Benedryl on advice of our ped. Have our first appt. with the allergist next week so I'll see if that advice changes.

So far my ds (age 2) has had reactions to peanuts, egg (seems to be okay in baked good though), sesame seeds.

In all the reactions (starts with swollen lips) the benedryl worked, although I had the epi pen in hand with his last reaction to sesame...half his face swelled up. But within 20 minutes he was okay again.

So mad (and scared) to hear that benedryl is on the recall list today!!!

I have the individual spoons of benedryl that I carry with me everywhere and are not on the reacall list. The bottle is. Maybe that would be a choice you could use. Not sure if your child would do the chewables at two or not.

That also worries me that benedryl can mask symptoms. Our allergy dr recomends immediate use so.... . I will certainly ask him though it has saves us a trip to the ER a few times.

 

[dis-happy]

I have the individual spoons of benedryl that I carry with me everywhere and are not on the reacall list. The bottle is. Maybe that would be a choice you could use. Not sure if your child would do the chewables at two or not.

That also worries me that benedryl can mask symptoms. Our allergy dr recomends immediate use so.... . I will certainly ask him though it has saves us a trip to the ER a few times.

Thanks!! I first just read about those spoons here on this thread and ordered some from Amazon. It looks like they are 1 tsp. each, which is what my ds' emergency dose is now for food reaction. They look way handier than the lugging the big bottles and a syringe around!

I'm not sure about the masking symptons...we don't give the benedryl until the symptons appear, and like you, it has saved us trips to the ER. For my ped's office it is the first line of defense. But I will ask the allergist next week, specific to our ds. The allergy thing is hard with a not-too-verbal 2 year old.

 

[dizcrazee]

Thanks for posting. This confirms why we haven't gone there despite the amazing food reviews on these boards. Just the fact that a mistake could so easily be made there with peanut sauce floating around the restaurant. I was always concerned that some kid with peanut sauce touches one of the limbo sticks or brooms and then my dd touches it. Ugh!

This is my point of view as well. I would love to go to O'hana, but the peanut sauce keeps us away. I know the chefs are supposed to be fabulous, but that peanut sauce everywhere is just trouble waitin' to happen, in my book.

 

[atmail35]

I'm not sure about the masking symptons...we don't give the benedryl until the symptons appear, and like you, it has saved us trips to the ER. For my ped's office it is the first line of defense. But I will ask the allergist next week, specific to our ds. The allergy thing is hard with a not-too-verbal 2 year old.

What I meant about "masking symptoms" is that if you give Benadryl when there are just a few hives or minor swelling (lips etc.), it is possible that it will take the swelling down and eliminate more (i.e. total body) hives that might indicate a more severe reaction. Or if you (general you, not anyone here specifically) give Benadryl because you saw your DC eat say a peanut but don't notice any reaction yet, you may not see it progressing to anaphalaxis (say if they are developing hives and the Benadryl takes care of it, or the itchiness in the throat isn't noticeable AND vomiting).

Anyway my point is that Benadryl cannot stop anaphalaxis. It really only assists with a skin reaction (swelling, generalized hives, itchiness), it will not help with other symptoms such as gastrointestinal, respiratory, drop in blood pressure etc.

My bigger issue is some people (potentially child care providers and teachers) may be lead to believe that once Benadryl is given, all is OK, when the child could develop worse symptoms and need EPI.

Obviously it is best to speak with your individual allergist - since each allergist seems to give different advice.

OK back to discussing Crystal Palace!

 

[dis-happy]

Thank you PP for all the info! I'm fairly new to the allergy game. After our last horrible reaction I took my ds into the ped (while the reaction was still occurring, epi pen in hand), not sure if I should use it or not. I was watching my ds closely of course; the ped is 3 mins. from my house and the ER is right next to that. Still, it was the first time I was actually scared during a reaction. Mostly because I had no idea what had caused it out of the blue like that, although was later able to narrow it down to probably being hummus, and later most likely the sesame seeds. The hardest thing with a 2 year old is the constantly expanding diet.

I did have a long talk with the ped, asking the question when should I decide to use the epi pen based on the severity of the reaction. She said to watch my baby while sitting...if he has breathing problems he would lean forward a bit, trying to get oxygen. In the meantime though, the swollen lips and face and slightly more audible breathing I had watched totally disappated with the benedryl. That same week the pollen count was super high and my dh thinks there may be an underlying allergy to that as well. I am so looking forward to meeting with the allergist and getting a definitive answer on what he's allergic to!

Any tips on what to ask for re. allergy testing??? I know they will probably do the skin test, but should I be requesting blood tests as well? I've heard about the RAST and immunoCAP (???). Are they better than just the skin test? Do they find different things? Any BTDT advice it totally welcome!

 

[ilovetivo]

DS3 has milk-protein-induced-enterocolitis syndrome.

So does DD!! "FPIES" (food protein I E) to milk

 

[ilovetivo]

What I meant about "masking symptoms" is that if you give Benadryl when there are just a few hives or minor swelling (lips etc.), it is possible that it will take the swelling down and eliminate more (i.e. total body) hives that might indicate a more severe reaction. Or if you (general you, not anyone here specifically) give Benadryl because you saw your DC eat say a peanut but don't notice any reaction yet, you may not see it progressing to anaphalaxis (say if they are developing hives and the Benadryl takes care of it, or the itchiness in the throat isn't noticeable AND vomiting).

Anyway my point is that Benadryl cannot stop anaphalaxis. It really only assists with a skin reaction (swelling, generalized hives, itchiness), it will not help with other symptoms such as gastrointestinal, respiratory, drop in blood pressure etc.

My bigger issue is some people (potentially child care providers and teachers) may be lead to believe that once Benadryl is given, all is OK, when the child could develop worse symptoms and need EPI.

Obviously it is best to speak with your individual allergist - since each allergist seems to give different advice.

I concur

any tips on what to ask for re. allergy testing??? I know they will probably do the skin test, but should I be requesting blood tests as well? I've heard about the RAST and immunoCAP (???). Are they better than just the skin test? Do they find different things? Any BTDT advice it totally welcome!

Yes, definitely blood tests. In foods, skin tests have a higher false positive rate. Skin and blood tests, plus child's history all needs to be considered. Sometimes one is positive, but other is negative. "Reactions trump tests" is a common saying

A great site is www.kidswithfoodallergies.org - non-profit, exceptional group. Excellent support, recipes, different forums, main forum is now free to associate members. Family members is $25 a year (IMHO pennies to save my sanity gazillion times over.

KFA is to food allergies, as Disboards is to Disney

their resource page has all this info + more.
http://www.kidswithfoodallergies.org/resourcesnew.php

Free guides
http://www.kidswithfoodallergies.org/resourcetopic.php?topic=freeguides

What is the importance of IgE blood allergy tests?
http://www.kidswithfoodallergies.org/resourcespre.php?id=135&title=IgE_blood_allergy_tests_video

"What Questions Should I Ask an Allergist on an Initial Visit?"
http://www.kidswithfoodallergies.org/resourcespre.php?id=47&title=ask_an_allergist

good luck!