DEFINING SEVERE ALLERGY

Posted on: Thu, 05/13/2004 - 1:14pm
anonymous's picture
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Joined: 05/28/2009 - 16:42

I AM THE MOM OF ONE CONFIRMED PEANUT ALLERGY CHILD AND ONE UNCONFIRMED PEANUT ALLERGY CHILD. I WOULD LIKE TO KNOW HOW SOME OF YOU OTHER PARENTS DEFINE SEVERE AND HOW YOU DETERMINED THAT - WERE YOU TOLD BY DOCTOR/ALLERGIST, DID YOU DETERMINE IT BASED ON THE REACTION, DID THE CAP RAST NUMBER HAVE ANY BEARING? I HAVE FRIENDS WITH PA CHILDREN AND EACH OF US HAVE THE SAME ALLERGIST. WE ALL THREE HAVE DIFFERENT EXPERIENCES WITH THE ALLERGIST. I HAVE NOT BEEN ABLE TO GET THE INFORMATION I AM LOOKING FOR AND WOULD APPRECIATE SOME INPUT SO THAT I HAVE A BASIS TO TALK WITH THE DOCTOR AGAIN AND ALSO TO TALK WITH MY CHILD'S TEACHER. PLEASE I WELCOME ANY COMMENTS AND INFORMATION. THANKS.

Posted on: Fri, 05/14/2004 - 12:13am
Anonymous's picture
Anonymous (not verified)

Hi CC's Mom - and welcome to the board. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
This could be a very interesting thread.
I think everybody has their own definition of what is a severe allergy. But I'll try to give my definition.
I consider my sesame seed allergy severe - I have had anaphylactic reactions and I have strong reactions to even trace amounts. I also (now) consider my peanut allergy severe - I have strong reactions to even trace amounts, but not sure if I've had an anaphylactic reaction.
I do not consider my son's insect allergy severe - he has had swelling, but not ana. However, I act as if it is severe and he does carry an epi-pen because the potential is there. He may never have a severe reaction - then again, the next one might be.

Posted on: Fri, 05/14/2004 - 12:25am
Anonymous's picture
Anonymous (not verified)

CC's Mom, as I posted to you last night, I don't have allergy test scores for my PA son. He has never been "officially" tested for PA.
Having said that, and with the understanding that all food allergies have the potential to be severe/life threatening, I've based I guess my definition of my son's allergy (the severity thereof) on his reaction history.
Even if I look at his first reaction closely, it was probably anaphylactic.
He has had three anaphylactic reactions and he almost died during the second one. The E.R. doctor I had that night told me that my son's allergy was very severe and that he would never outgrow it.
However, if your child hasn't had any reactions and just has the diagnosis, kinda hard to figure out and that's why I thought it was important that you raise this question separately. There are a lot of members posting here whose children have not had anaphylactic reactions or even reactions period but have the PA diagnosis.
Hope someone can help you sort through the test scores and stuff. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
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Posted on: Fri, 05/14/2004 - 9:45am
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Joined: 05/28/2009 - 16:42

THIS QUESTION IS FOR ALTERNATIVE TO MAINSTREAM. THANKS FOR THE REPLY. CAN I ASK A LITTLE MORE DETAIL? I WOULD LIKE TO KNOW WHAT EXACTLY YOUR SON ATE OR WAS EXPOSED TO AND WHAT EXACT REACTION (HIVES, COUGHING, ETC.) HE HAD, DID HE HAVE AN EPIPEN SHOT, DID HE GO STRAIGHT TO THE ER, DID HE NEED A SECOND EPIPEN? I HOPE I'M NOT ASKING TOO MUCH. MY SON WAS 2 1/2 AND WE WERE AT THE GROCERY STORE. HE WANTED OUT OF THE CART AND TO GET THRU THE SHOPPING I ALLOWED HIM TO WALK (BIG MISTAKE). HE SAW COOKIES ON AN ENDCAP AND POINTED THEM OUT TO ME SAYING "MOMMY TOOKIE". LATER I WAS SEARCHING FOR A PRODUCT ON ANOTHER ISLE (WHICH HAPPENED TO BE THE COOKIE ISLE) AND HE AGAIN SAID "MOMMY TOOKIE" AND I SAID YES BUT DID NOT LOOK OVER AT HIM IMMEDIATELY. WHEN I DID, HE HAD SOMETHING IN HIS MOUTH. IT WAS A PEANUT BUTTER COOKIE FROM THE BAKERY (THEY GIVE OUT FREE COOKIES TO ANY CHILD WHO ASKS). HE HAD NEVER BEEN GIVEN PEANUT BUTTER OR ANY FORM OF PEANUTS (OTHER THAN POSSIBLY MAIN CONTAIN ITEMS). I AM CERTAIN IT WAS A VERY SMALL BITE AND I "DUG" EVERY BIT OUT OF HIS MOUTH THAT I COULD. I WAS SICKENED BY THE FACT THAT HE HAD PICKED UP SOMETHING FROM THE FLOOR, FROM SOME OTHER CHILD'S MOUTH, AND WORRIED THAT (YES I ACTUALLY THOUGHT THIS) SOME "NUTCASE" (NO PUN INTENDED) COULD HAVE POISONED THE COOKIE AND PLACED IT THERE FOR "KICKS". SO I WATCHED HIM CLOSELY AS WE STARTED TO THE FRONT OF THE STORE TO REPORT THE INCIDENT. IT HAD ONLY BEEN A FEW SECONDS WHEN HIS FACE BEGAN TO BLOTCH AND COUGHING BEGAN. I KNEW IMMEDIATELY THAT IT WAS EITHER A PEANUT ALLERGY OR POISON. WE CALLED OUR PED. AND TOOK HIM TO THE E.R. HE CLEARED UP AND STOPPED COUGHING BEFORE WE WERE SEEN BY THE DOCTOR. HE THEN HAD SKIN TESTING AND CAP RAST. BOTH WERE POSITIVE. CAN'T GIVE YOU DETAILS ON SKIN TESTING RIGHT NOW BUT I KNOW THE PEANUT REACTION WAS LARGE. CAP RAST INITIALLY WAS 12.40 (2001). RETEST IN 2002 WAS 6.83 AND RETEST IN APRIL 2004 WAS 31! NOW I AM TOTALLY CONFUSED. I WAS NOT GIVEN A CLASS. AT ONE TIME I WAS TOLD AT 15 OR ABOVE THE CHILD NEVER OUTGROWS THE ALLERGY. I WAS SHOCKED THE NUMBER WENT BACK UP BUT THE ALLERGIST SAYS THAT IS COMMON. SHE, HOWEVER, DOES NOT GIVE ME ENOUGH INFO AND I HAVE NEVER BEEN SURE WHAT TO ASK UNTIL I FOUND THE BB AND FOUND INFO THAT RAISED QUESTIONS AND MORE CONCERNS. WAS MY SON'S REACTION CONSIDERED ANALPHYLATIC - THE ALLERGIST NEVER SAID (THAT I RECALL). ALSO ANY BOOKS YOU RECOMMEND TO EDUCATE ME AND THOSE AROUND US? SORRY THIS IS SO LONG AND QUESTIONS ARE NUMEROUS. I STARTED TYPING AND COULDN'T SEEM TO STOP. THANKS FOR ANY REPLY.

Posted on: Fri, 05/14/2004 - 11:00am
Donni's picture
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Joined: 11/06/2000 - 09:00

Although you requested AtoM to respond, I thought you might be interested in

Posted on: Fri, 05/14/2004 - 11:44am
Danielle's picture
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Joined: 04/08/2003 - 09:00

My DD was a few days short of turning 2 when I gave her her first bite of pb. Lip swelled slightly (but I knew) and I rushed her to the ER. 45 minutes later with all sighns gone and we were still in the ER and I was not leaving the hives started (I call them crawling hives)from the face area then disappearing and literally crawling down her body until they stopped above her knees. Her ears also looked like dumbo the elephants. The Dr's never heard a breathng problem but she coughed a few times and I screamed and had everyone running in to listen. They finally administered the epi (what the hell took them so long but I knew nothing back then)after 2 doses of beni and a dose of steroids. In seconds, the epi jr took hold.
I gave her that bite of pb because she had been dealing with pneumonia and RSV and she has been so sick and lost weight and wouldn't eat so I jammed a huge bite in her mouth and she hated it (didn't even swallow). I had just asked the pediatrician and he said I could give her anything since she was almost 2 years old. She had had a few bites of pb cookie that month prior to her bite. I will ALWAYS believe that if her immune system had not been comprimised she would not have had such a severe reaction. Now, I am super careful when the kids have a cold and in the past a vaccination and their immune systems could be down to inroduce a new food or even give them one that I consider more likely to cause an allergy even though they have consumed it in the past.
Anyway, she had a large hive when tested the next month after her reaction and since then we have obviously been super diligent with no peanuts/nuts. I have taken her to a few allergists and even to All Children's Hospital in St. Pete Florida to their allergy dept thinking they could give me some good information (as usual I knew more and some of the answers they gave me showed how little Dr's know about kids with PA). I had her CAP RAST tested for other tree nuts and she tested 0 but I treat her as though she is allergic to all nuts. They told me they thought she would be a high 5 for peanuts on the RAST but she came back a 2. The allergist say that is encouraging but I have to say that no matter what the number came back I would treat her the same way - ABSOLUTELY NO TRACE AMOUNTS, NO TOUCH (if we can help it) AND NO SMELLING IT. Saying that 2 times and one of which was at the allergists (UGH, I about fell over) there were a pound (yes, a pound) of peanuts in a bag in the room and the smell was overwhelming when they closed the bag and the other time was in a cafeteria and people were eating pb and peanuts and someone had brought her in the room (needless to say that person was quickly fired). My daughter had no reaction either of those times.
Now, we get to my other daughter who basically blood tests negative to everything except egg which she has never had. She also skin tests neg to most of the things that she can't eat. So, I am hoping she is intolerant to the foods and will outgrow it or RAST numbers and skin prick tests just don't apply to everyone. She can not have egg (RAST 2 but never has consumed and I won't skin tesat her yet), rice (RAST 0 skin test neg)but she becomes severely ill, oats (RAST 0, skin test neg)but she becomes ill when she eats it, barley (RAST 0, skin neg, wheat (never consumed it) (RAST 0 and tested again and RAST 0 first skin test neg, second came back positive with a hive), blueberry (RAST 0, skin test inconclusive)but she breaks out in hives pn/tn (RAST 0 for both) and I will not let her be tested for a long time and obviously I treat her as if she is allergic. She is 17 months. I also had her tested for Celiac and that came back negative.
So, what I am saying is numbers may tell you something but they may not. I think they do scare everyone when the high numbers come back and I do know that almost all the research I have read says the higher the numbers the more likelihood of anaphylaxis. What I think most people outside these boards don't understand is that the numbers can be misleading and may lead people to treat pa with less caution if their number comes out low. Big mistake! - PA is unpredictable so all PA must be treated as though the next reaction will be life threatening. And that is how we have lived for almost 15 months and will continue to until the powers that be come out with some miracle and i know this will happen. Hope u can understand this becasue it is way past the kids bed time and they have been yelling for 10 minutes now. Please post when you talk to your Dr and let us know what he says.
There are some nice threads that go along with this I think under main discussion. You should just go through the threads (it will take awhile) and bring up anythng that goes with your question. There are also threads under what is considered anaphylaxis and what the symptoms are. Lastly, if you just read the headlines under Living With PA and Main Discussion Board and Research you will find many people have posted research infornation on most of the questions that you have posed You can also search archives or old articles on web sites such as FAAN web site and medical journals. I also like the national allergy organizations from South Africa and New Zealand (SUBSCRIBE [url="http://www.allergyclinic.co.nz/subscrib.html)They"]http://www.allergyclinic.co.nz/subscrib.html)They[/url] both put out great information at no charge.
[This message has been edited by Danielle (edited May 14, 2004).]

Posted on: Sat, 05/15/2004 - 1:57am
KarenH's picture
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Joined: 09/21/2002 - 09:00

CC's Mom...
Just wanted you to know that on the Internet, using CAPS is equivalent to shouting. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] People here won't say anything,they are all soooo nice! Other boards might not be, though. Just for your information so that you don't ask a question somewhere and get rude responses..... [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img]

Posted on: Sat, 05/29/2004 - 6:37am
anonymous's picture
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Joined: 05/28/2009 - 16:42

To Karen H.
Thanks for letting me know that all caps is the equivalent of shouting. Obviously I am very new to the "chat scene". Is having my username in all caps okay? If not, let me know so I can change it. I did all caps for everything to make typing easier. Sorry to anyone who may have been offended.

Posted on: Sat, 05/29/2004 - 11:37am
Anonymous's picture
Anonymous (not verified)

CC's mom, no need to change your username. A lot of people have that all in caps. Also, I don't think you can actually change it on this board, you would have to sign up with a new name - but please don't, we're just getting to know you. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
And don't worry, I'm sure no one was offended. A lot of people when they first start posting on boards use all caps.
I hope your finding some helpful information here. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Posted on: Sat, 05/29/2004 - 5:05pm
Driving Me Nutty's picture
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Joined: 05/01/2003 - 09:00

CC's mom,
Welcome to the boards! My dd is allergic to treenuts (tn) and peanuts (pn). I only consider her severly allergic to pn for a few reasons;
- she has broken out in hives twice from peanut protein in mine and my DH's saliva when we kissed her after eating peanuts/PB. (the first was when she was diagnosed, the 2nd was my husband's error). I consider this severe since if she [b] ingested [/b] pn, hives would very likely close up her throat.
- she has had bites of muffins and other items with tn but did not have a reaction
- her CAP rast was >100 for PN (class 6) but only classes 2 and 3 for tn
As AnnaMarie stated, everyone here has different opinions and different comfort zones. Hope this helps!
[This message has been edited by Driving Me Nutty (edited May 30, 2004).]

Posted on: Sun, 05/30/2004 - 12:22am
Anonymous's picture
Anonymous (not verified)

CC's Mom, sorry, I didn't see your question to me until to-day.
I think you asked me specifically because I said that I don't have a allergy test score for my PA son. That he has never been "officially" tested for PA.
Okay.
First reaction. I believe if I could remember all of the symptoms he had, it probably was anaphylactic and halted itself, but I can't remember. Jesse was 18 months old. I was stuck with my FIL out somewhere 6 months pregnant with my daughter (non-PA) and I needed something to eat. I decided to buy an Eatmore chocolate bar because I thought the peanuts would be good protein even though I'm not and never have been a big peanut eater.
I gave a piece of the chocolate bar to Jess,
and immediately I knew something was wrong. His lips turned blue. He broke out in hives. I told his Father that something was wrong and that we had to get to hospital straight away.
We did. He was diagnosed as PA. We were given a 'script for an Epi-pen. And that's basically all we knew.
At that time, we just didn't feed Jesse any more stuff with peanuts in it (not clear about "may contains") and we continued to have peanuts and tree nuts in our home. Certainly "may contains". Just really did not know the severity of what we were dealing with.
At 2-1/2, Jesse had his first anaphylactic reaction. He had gone next door to play with a little girl (she was in our house all month and I finally let him go in their home for a change) and he took a bite of her pb on toast. The people were aware of his allergy. They denied any knowledge of how he could have had the reaction.
I knew right away what was wrong and I lived right beside a medical center. They told me to get Jesse over there now. He was administered an Epi-pen and surprisingly only watched for an hour (with no instructions to watch for bi-phasic reaction or anything else).
The third reaction, the one where he almost died, second anaphylactic, he touched his lip to a pb rice krispie square. It did not enter his mouth. He did not bite it. He merely touched his lip to it. He had every symptom of anaphylaxis. At this time, we knew to Epi, but we didn't know about 911, another Epi, etc. and that's why Jesse almost died. His Father was also in denial about his allergy and we took some time administering the first Epi-pen.
Fourth reaction, cross contamination, two hive only, no biggie (in the whole scheme of things).
Fifth reaction, anaphylactic, touching residue at school on the walls or another surface and putting his hand to either his nose or his mouth.
When I had my daughter allergy tested to find out if she was PA before she went to school, I did have Jesse allergy tested. I already knew that he was PA because by then he had had three reactions.
I asked that they not prick his skin (it was a skin prick test) where the peanut serum was (I didn't even want the serum on his body but they couldn't do that). I made sure that they had Epi-pens and Benadryl in their offices (which, of course, they do, but I double-checked) before I would even let them touch Jesse.
The allergist did confirm that he was PA because despite the serum not being pricked, allowing it more into his body, he developed quite a huge wheal at the site of where the peanut serum had been placed on his body.
My son is anaphylactic to peanuts so just for me personally (and probably because I live somewhere where you'd have to travel to see an allergist), I don't feel the need to have a score or to have him re-tested. I know that I have personally blown his 20% chance of outgrowing the allergy out the window (by ignorance and his Father's denial), so also don't feel the need to have him tested for that reason also.
Oh, and my comfort zone, which is posted on this board did change dramatically once Jesse had the first anaphylactic reaction (his second reaction) at age 2-1/2.
Hope this helps and also hope it explains why it would appear that I'm one of the few members that hasn't had their PA child allergy tested for PA.
I'm glad Karen H. mentioned so nicely about the caps. I was going to and didn't know how to say it. I have seen people told here before about netiquette and I have seen them told not very nicely.
I'm funny that way as well I guess. Even though I knew you were *shouting* on the internet, I also knew that you didn't know, so when it translated into my brain, I just read it as a post from a PA parent that wanted information, I didn't read it as someone shouting. All these rules, man. But yes, important to follow as well.
I think also, with all caps, it's harder to decipher sentences. That's probably where I would personally find a problem with all caps. Anyway, glad Karen H. mentioned it to you.
Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
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