Stressed with Questions about Severe Peanut Allergy (2 yr old)

[MrsJewelsRae]

My 2 year old was officially diagnosed with a PA this week.  He had a reaction at 22 months after accidental first exposure to peanuts (Peanut M&Ms Daddy left out)- within 2 minutes he had hives, rash, intense itching in eyes and ears, swelling of eyes and tongue.  He improved with Benadryl.  I was given a prescription for Epi Pen Jr which I keep on me at all times, but now that he was seen by an allergist and officially diagnosed it feels REAL, I was hoping maybe I had exaggerated his reaction, maybe I was over analyzing because I am so paranoid and panicky about peanuts in the first place (have witnessed an anaphylactic reaction in a 3 yr old several years ago, complete with vomiting, itching, and swelling to the point of severe respiratory distress, frantic 911 call, ambulance, etc).  Now it`s happening to me and my baby!  I am reading everything I can and it`s freaking me out.  After getting home from the allergists I found myself with so many questions and wish I could go back, but he is not available until the end of March as he is on vacation.  They did a skin test testing him for milk, soy, eggs, peanuts, peanut butter.  He tested positive for eggs and peanuts, intolerant to milk and negative for soy.  We already knew of his egg allergy, he`s reacted 3 times (1st time we didn`t make the connection, 2nd time we said "ah hah" and 3rd time accidental)  with intense vomiting and diarrhea, and once with itching and hives after touching raw egg shells in the compost pail.  He has severe vomiting if he drinks milk, but is fine with yogurt and cheese (thank God!) so allergist suggested it could be a Lactose Intolerance.  Why don`t they have an info session for parents of severely allergic children!???  There are some very important questions I need answered!  The doctor said that his skin test indicated a severe allergy to peanuts and an allergy to eggs with the possibility of causing a severe reaction (only in lightly cooked or raw forms like fried, scrambled, etc- baked is fine in cookies, pancakes, etc).  The doctor recommended a blood test for further info so we are waiting for results on that.   

If I may bother those of you with experience to lend me your ear and give me advice or links, I would be so grateful!  I am so nervous about eating anywhere but home, anything I cannot read a full list of ingredients. 

- How many Epi Pens should I have?  I`ve heard that I should have 2 because the effectiveness of the 1st shot can start to wane after just a few minutes and the child may need more before emergency medical help arrives (my paramedic friend told me this).  True? 

- When do I give the Epi Pen?  What if I wait too long because I am not certain it is a reaction?  What if I give it too early and it turns out it was not a reaction after all?

- What is the reliability of the skin test?  Does the size of the welt have anything to do with severity?  My doc said that in his experience a 3mm welt indicated an allergy, 8 mm welt often indicates severe allergy, my ds` welt was 15mm! 

- Are there different blood tests?  Which one was likely done on my ds? I`ve heard of RAST, IgG, and IgE- which one is most reliable and should I request further testing?  Can these tests determine severity of an allergy?

- Shouldn`t they test for other allergens - tree nuts, shellfish, etc?  The nurse said they don`t like to do too much at once.  Thankfully he handled the skin pricks and blood draw like an angel, didn`t flinch, just watched with interest! 

- Why do people die from anaphylaxis even with epinephrine and medical treatment?  I was reading about Sabrina`s Law in Ontario (my home) and she was given an epi pen, but she still died. 

- What is the actual risk of my son dying from this?  I know it is morbid, but I am so worried about it! :(  

- What about food?  Potlucks?  Visiting people`s houses?  Should I always just bring my own food and not worry about it?  I mean, I can`t read all their ingredients of their homemade stuff- like potroast, etc.  If they verify they didn`t use any peanut products in their pot roast can I risk giving him some meat and potatoes?  I stay far away from other`s baking, just can`t trust it.

- Package info, if it doesn`t have a peanut warning, can I feed it to him? 

- Am I being overly protective that I won`t let others kiss him?

- Any good websites I can direct family/friends and church to?  My church has made an announcement for "No More Nuts" and told me they`d stop buying peanutty candy but I need them to realize the absolute severity of this.

I may have more (!!!!) but I have to run for now!   THANK YOU SO MUCH!! :)

[scsigrl]

- How many Epi Pens should I have?  I`ve heard that I should have 2 because the effectiveness of the 1st shot can start to wane after just a few minutes and the child may need more before emergency medical help arrives (my paramedic friend told me this).  True? 

Yes. You should ALWAYS have 2 epis for just such an emergency.  You should also have Benadryl.  You may want to ask your Dr. for a FAAP (Food Allergy Action Plan) which outlines EXACTLY what to do (when to give Bebadryl vs. Epi pen etc.)

- When do I give the Epi Pen?  What if I wait too long because I am not certain it is a reaction?  What if I give it too early and it turns out it was not a reaction after all?

Again, a FAAP may help you.  My advice- if you think it's an issue, GIVE THE EPI and CALL 911

- What is the reliability of the skin test?  Does the size of the welt have anything to do with severity?  My doc said that in his experience a 3mm welt indicated an allergy, 8 mm welt often indicates severe allergy, my ds` welt was 15mm! 

Welt size has NOTHING to do with the severity of a reaction.  There are kids with small "reactions" who have very large testing welts and those with HUGE ones and little reaction to actual exposure.

- Are there different blood tests?  Which one was likely done on my ds? I`ve heard of RAST, IgG, and IgE- which one is most reliable and should I request further testing?  Can these tests determine severity of an allergy?

*Most* allergist only consider IgE positive tests as a true (meaning is can cause an ana reaction) allergy.  That would be the RAST test.  Again, the numbers don't mean much.  It is just one more piece of the puzzle.  ANY AND ALL tests have about 50% accuracy (though a negative is about 92% accurate).  There is no test that can determine the severity of an allergy.

- Shouldn`t they test for other allergens - tree nuts, shellfish, etc?  The nurse said they don`t like to do too much at once.  Thankfully he handled the skin pricks and blood draw like an angel, didn`t flinch, just watched with interest! 

Different Dr's will test different ways.  Our Dr. did about 24 at once.  Because of the inaccuracy of the testing, some Dr's don't test for anything more than the parents have seen a reaction to. 

- Why do people die from anaphylaxis even with epinephrine and medical treatment?  I was reading about Sabrina`s Law in Ontario (my home) and she was given an epi pen, but she still died. 

Sometimes it isn't given fast enough.  Sometimes it is getting to the hospital fast.  Sometimes it is such a server reaction that the epi doesn't work.  

- What is the actual risk of my son dying from this?  I know it is morbid, but I am so worried about it! :(  

I don't know the exact statistics but I will say this, you see it on the news, right?  If it happened daily it wouldn't be on the news.  It is not common.  

EDITED MY ORIGINAL POST WITH STATS:

• Nearly 400 Americans die each year due to drug allergies from penicillin.
• More than 200 deaths occur each year due to food allergies.
• Each year nearly 100 Americans die due to insect allergies
• 10 deaths each year are due to severe reactions to latex allergy.

- What about food?  Potlucks?  Visiting people`s houses?  Should I always just bring my own food and not worry about it?  I mean, I can`t read all their ingredients of their homemade stuff- like potroast, etc.  If they verify they didn`t use any peanut products in their pot roast can I risk giving him some meat and potatoes?  I stay far away from other`s baking, just can`t trust it.

We deal with a much longer list but I do not serve my kids anything I have not made.  Ever.  But everyone has a comfort zone.  You will find yours.

- Package info, if it doesn`t have a peanut warning, can I feed it to him? 

Well, I choose not to feed my kids things with "made in a facility" statement (which is TOTALLY voluntary meaning there may be things I feed them that don't carry that warning but are processed with nuts/peanuts).  I do call a majority of the manufactures to be sure.

- Am I being overly protective that I won`t let others kiss him?

Again, I don't let just anyone kiss my kids.  Those who do (Grammy and G-pa) know about his allergies.  They know not to eat peanuts before we come over so I don't worry about that.  Comfort zone :)

- Any good websites I can direct family/friends and church to?  My church has made an announcement for "No More Nuts" and told me they`d stop buying peanutty candy but I need them to realize the absolute severity of this.

FANN is good.  Also KWFA (Kids with Food Allergies)

HTH Got a kid to get to bed.

Edited by scsigrl - 3/7/11 at 6:25pm

[mama1803]

I don't allow my ds to eat food prepared by others.   I've had people insist that their food is fine for my ds because they didn't use peanuts, but cross contamination is a real possibility.  For instance, if a baking pan was used to bake peanut butter cookies and it wasn't washed properly, the next batch of cookies could be contaminated enough to cause a reaction.  So it isn't only the ingredients used in the food your LO will be ingesting, you also need to be concerned with how and with what utensils with which it was prepared.  We bring our own food everywhere and I pack my ds' lunch everyday for school.  He sits at the peanut free table with other allergic kids.

You should have access to multiple Epi-pens.  The medication lasts for only 15 minutes, usually that is not enough time to get to the hospital.  Also, you should do some research on biphasic reactions--a secondary reaction could come as late as 24 hours after the inital reaction.  So it would be essential to have more than one Epi-pen on hand.

As far as deaths go, most of the deaths due to food allergies happen in the tween, teen, and early adulthood years.  This is the age where kids don't want to be different than their peers and often will not carry their Epi-pens because of embarassment, so they keep their medications locked away in their school lockers, etc.  The Epi-pen needs to be on the person so that it is readily accessible when needed.  My ds wears his in a pouch around his waist and the school nurse keeps one in her office.

We initially had our ds tested through a blood test.  Our allergist at the time said that putting the allergen on his body was too much of a risk, given the reaction he had to the ingested allergen.  If you want your LO tested for additional allergies, I'd suggest having it done through a blood draw.  This way they can test for many allergens and won't risk provoking a reaction. 

[MariaMadly]

http://www.foodallergy.org/