Talking Allergies

I found this board last week the day after my daughter was diagnosed with a severe anaphalactic allergy to peanuts and alll tree nuts but I haven't had an opportunity until now to sit down and write an introductory post.

I am Melissa, mommy to Jacob (turning 4 in 2 months) and Violet Grace (15 months on the 20th)....we have had a rough go with our son since he was born and eventually he got a pretty severe asthma diagnosis - he has very unstable asthma that we have had a hard time managing and getting under control and just 4 weeks ago now he was admitted to the hospital when his oxygen saturation plummetted during an asthma attack and the hospital had a really hard time bringing it back up - it was scary, awful, overwhelming but we got through it and now we're going to see an entire team of people on May 25th who will work with us and Jacob to find the right treatment approach that will help get it in control and hopefully prevent the hospital visits that seem too frequent for a 4 year old. We suspected my son could have some respiratory issues related to his premature birth and breathing issues he struggled with following his birth so we were prepared but we were not prepared to deal with severe illness in our daughter.

Violet Grace was a full term pregnancy unlike my son.....her delivery was complication free and she was home immediately unlike her brother who stayed in the NICU for a while. We have had no health issues with Violet, she never gets sick and for the most part she is always pleasant......not a cold, or ear infection, or anything....except mysterious hive rashes that started from the day she was born. From the day she was born we would randomly notice a hive like rash covering her trunk, neck, back, face that would show up for no reason and any given time.....we didn't understand it because she wasn't even eating food - I assumed it was an allergy to milk and cut dairy out of my diet and continued breast feeding her. Life continued on and we would find her waking up from a nap with hives on her neck, face, around her eyes....we took her to the doctor who suggested maybe it was a cat or dust ....well we knew it couldn't be the dust since we keep our house relatively dust free for our sons asthma.....then one day when she was around 8 months old we heard our son shout from the small kid table that Violet snatched his peanut butter toast.....I ran out took the toast out of her hand and laughed a bit calling her a food thief....and she looked at me horrified with big wide alarmed eyes....I couldn't figure out what was going on but suddenly she was covered in hives and they were spreading fast fast fast...her face, eyes, lips were swelling.....it was a nightmare situation and I had an aha moment that my gosh it could be a peanut allergy.

Our pediatrician did a blood test - I'm not sure what he called it but he said she scored really high i want to believe he said over 100 but I truthfully don't have much knowledge about this test or how to interpret the results except to say that he told us he wanted us to go to an allergist. We got a referral to an awesome doctor but her practice is really busy so we waited and it wasn't until just last week that we finally saw her. She took a history and decided to do a skin prick test for all foods and start from there......the nurse put the drops of allergens on Violet's back and before she could even prick the skin Violet was already having a reaction to the peanut and cashew drops.....after the pricks it took only seconds for the reaction to go from worse to severe - the doctor wanted us to wait 20 minutes but she stopped the test at just before 3 minutes because the reaction was getting out of control.

I then sat in a room and listened to this woman tell me that Violet was severely allergic to all nuts and peanuts....and truthfully I was really upset that my husband couldnt' make it (he had a work meeting).....I was just in shock...I suspected a slight peanut allergy but an allergy to peanuts and ALL tree nuts!!???! I'm totally overwhelmed and I dont' know where I'm supposed to start to make changes in our lives to keep her alive. I feel overwhelmed at the thought of losing my daughter because of the carelessness of other people - family members have joked that they "don't believe in all this allergy nonsense"....my mom even wanted to know why we were making such a big deal about it and not letting our son have peanut butter - but the doctor specifically said absolutely no peanuts or tree nuts in your house. I dont' know anybody with a kid that has this kind of allergy - I feel all alone and never thought I'd be "that parent"...but now its our reality.

Any advice anyone can offer would be much appreciated...

Oh Melissa! I'm so sorry that you've been initiated into our group.

You are correct that you are in shock right now. You needto take a bit of time to recover from the reaction and diagnosis. Don't add anything for now and just breathe.

Can you have your son seen by a pediatric respirologist? My daughter had uncontrolled asthma until she was 3 when we finally saw a ped resp. and realized that the environment was the trigger. (For us it was the shared air in the rental unit)

Violet is allergic to peanuts and all tree nuts, is that all? I know it seems like a lot but it is very manageable.

Your son can always eat sunbutter or pea butter. He may be OK with this after witnessing his little sister react to his food. I hope he doesn't feel guilty!

Check your cupboards for may contains.

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Moderator
Daughter: asthma, allergies to egg, milk, peanuts, tree nuts, most legumes (not soy and green beans) & penicillin. Developing hayfever type allergies.
Husband: no allergies
Me: Oral Allergy Syndrome, Allergic to Birch trees

Melissa, WELCOME
I want you to know that you aren't alone, to feel overwhelmed is completely normal. Believe it or not in a few months everything from shopping to precautions taken will all start to become routine. Most importantly you will discover how strong you are, something which I'm sure has surprised us all. From dealing with other people's vocal opinions/comments to how to handle so many of the situations we encounter while trying to keep our children safe. Allergy mom's I think become amazingly resourceful, proactive, organized , imaginative and best of all the most supportive group of people out there. All of us have had our moments to cry and scream and laugh and believe me, after a good vent and some great feedback from others it really does help me through new situations and incidents which arise while dealing with our son's allergies/asthma. WE ARE THERE FOR YOU!!

I need to run right now but I'll be sure to post back later.

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DD 12 yrs -no allergies
4 yr old DS - asthma/eczema Anaphylactic to Peanuts, all tree nuts, sesame , all pea/lentil legumes, gelatin.
Allergic to trees, grass,ragweed, feathers, dander, mold and dust.
Outgrew eggs, fish, shellfish

Hi Melissa, I'm so sorry to hear about what you are going through with both of your children. I'm sure you will find incredible support on this forum - it has been our lifeline since our son's diagnosis with multiple food allergies just over 7 years ago. I will post more at a later time when I have more time. Take care and just know that we all understand what you're going through as we've all been through this.

Julie

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17 yr old daughter: no health issues
15 yr old son: allergic to peanuts, tree nuts, egg, fish, sesame,sunflower,mustard,poppy seeds, peas, carrots, some fruits, instructed to avoid legumes(except soy & green beans),pollen, cats, horses, cold urticaria

Oh Melissa, I'm sorry you're going through this, but I hope it helps to know that we've all been there, in some form or another. It is terrifying, and manageable. I find it relatively simple 'at home', but holidays or food outside of the house sends me into a frenzy. And for some reason, it's quite common for family members (especially older ones) to not 'get it'. Best wishes to you & your little ones, and feel free to ask any questions any time.

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DSs 7,7,9 all PA

Welcome! I was initiated into the muliple food allergies not long ago myself (just over a year ago) and it's amazing how quickly that shock wears out and the protective adaptive instincts take hold. Don't be afraid to ask questions, we've all been through the fear and confusion, i'm sure you'll get tons of help and advice!

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Daughter 3.5 years) - Dairy, Eggs, Peanuts, Sesame, Beef; asthma and eczema
Daughter (2 years) - Peanuts Eczema
Son (7 months) - Contact allergy to something food undetermined

Sorry for posting this on your threat 'new' but Congratulations Cauger, I see you've had the baby

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DD 12 yrs -no allergies
4 yr old DS - asthma/eczema Anaphylactic to Peanuts, all tree nuts, sesame , all pea/lentil legumes, gelatin.
Allergic to trees, grass,ragweed, feathers, dander, mold and dust.
Outgrew eggs, fish, shellfish

Thanks everyone for the welcome and support.

We still suspect other allergies but we had to stop the test when the peanut / cashew reaction started spreading across the other test points...is that normal to stop the test? The allegist said we'll test some of the other possible allergens in about a month to two months time.

Well, there's no point in testing for a reaction if there's already a wheal in that spot. Dd has had very large reactions to egg like this.

Give the ammount of testing that was being done, I think breaking it up into smaller groups is easier on the body. Perhaps her little body was in a heightened state of response and removal of some allergens will allow this to relax.

Having another set of tests so soon after the initial diagnosis is actually a good thing for you as it gives you time to reflect on what you have been told. Write down your questions and concerns and discuss these with the allergist. Most of us have to go a whole year before this discussion.

If you have a long list of restricted foods, you might want to be referred to a registered dietician to ensure adequate nutrtion during this period of rapid growth.

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Moderator
Daughter: asthma, allergies to egg, milk, peanuts, tree nuts, most legumes (not soy and green beans) & penicillin. Developing hayfever type allergies.
Husband: no allergies
Me: Oral Allergy Syndrome, Allergic to Birch trees

Melissa..

My little girl exhibited the same reaction during testing for milk and egg allergy. She is also allergic to peanuts. Her doctor also had stopped the test, and in fact no longer does skin test after the 2nd try, because her reactions are so severe. They do blood tests now. This summer, they will try skin testing again (fingers crossed). So don't feel alone because you're not.

It is totally natural to feel overwhelmed. I'm sure every mom felt overwhelmed when the diagnosis was given. I know that I've spent some nights crying myself to sleep. If you need any help, just ask. This forum is full of great allergy moms who are not only resourceful, but incredibly understanding and supportive.

Noha

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Daughter: ana to milk, eggs, peanuts, allergy to pet dander, asthma, eczema
Husband: ana to aspartame, shellfish, allergy to pet dander, eczema
Myself: asthma
http://www.allergymom.ca

I felt just like you do now two years ago when my daughter (15 months old at the time) was diagnosed with peanut, dust & cat allergies. I couldn't figure out how we could go on living the way we did and thought she would live in a bubble. I crued a lot for about a month. Two years later I surprise myself with how calm about the whole thing we are. Of course we are vigilant about what she eats and touches but we have found what works for us and living with the allergies (now peanut and tree nut), and are able to go on living and enjoying life just like everyone else. AND you will too!

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Mother of a fantastic little girl with peanut allergy, cat & dust sensitivities

Your story is so similar to mine, and I agree with all the posts who have replied so far. You are right to feel overwhelmed at this age and stage (I cried a lot too), but your coping strategies will develop over time, especially with resources like this one. Plus, I think you are entering a world that is much more aware of peanut/tree nut allergies than it was years ago.

We are now about 7 years past your point. Our toddler also was above 100 on peanuts and scored very high on most tree nuts. Had angry hives too.

Right now all you have to go on are the hives, the allergy test score, and the one brief skin test. Thanks to those tests, you now are informed about the impact of nuts, keeping a nut-free home, and having epipens accessible. In time, you will also benefit from a wide variety of life's experience with the allergies. There are times when we all need to make judgment calls outside the bubble of our home, and we learn something every time we do. Several restrictions (though not all) that we were given at your stage began to be lifted around age 7 and 8 because of additional information gained through life (parties, amusement parks, vacations, different modes of transportation, etc.). That will be my sincerest hope for you too. All the best.

Melissa, I'm just re-reading this. Your family have probably not seen your child react to an allergen. It's hard to imagine such a violent reaction to something that the rest of the world views as safe and even wholesome. They are in denial.

You will become the "allergy ambassador" introducing them to this world we live in. Offer a few simple facts, provide sources of information and then let them come to you with questions.

Right now, your children are young. Your daughter is still putting everything in her mouth (probably). This is an age when you really need to remove the allergens from the environment. That means Grandma can't put out a bowl of nuts when you visit. Maybe you can get a few pamphlets from Health Canada-how can they argue with that? http://www.hc-sc.gc.ca/fn-an/securit/al ... ex-eng.php

Allergies are no laughing matter. Regardless of how they feel, is it too much to ask that they want to keep your child safe?

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Moderator
Daughter: asthma, allergies to egg, milk, peanuts, tree nuts, most legumes (not soy and green beans) & penicillin. Developing hayfever type allergies.
Husband: no allergies
Me: Oral Allergy Syndrome, Allergic to Birch trees

I agree with Susan. This is how it was for us too. Unfortunately, my family had the same attitude yours did, they did not believe in all this allergy "mumbo jumbo" until my daughter had a reaction in front of them. We especially had a hard time with the milk allergy. My parents could believe that she was allergic to peanuts, but not milk. To them milk was the healthiest food for children. They thought I was depriving her of something nutritious. It was hard to argue allergies after they saw her eyes and face swell. It is horrible but sometimes people won't believe something unless they see it with their own eyes.

On the plus side, my family is now extra vigilant about keeping her safe. I still have to remind my mother to read the fine print on a package, the may contain traces of peanuts or nuts. On occasion she forgets so I keep checking after her. But at least at this point, all our family members believe in the severity of food allergies and anaphylaxis. It will come with time. Just trust your gut instinct, and keep your chin up. You are not alone.

Noha

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Daughter: ana to milk, eggs, peanuts, allergy to pet dander, asthma, eczema
Husband: ana to aspartame, shellfish, allergy to pet dander, eczema
Myself: asthma
http://www.allergymom.ca

I agree with all the agreeing . With a little one you almost have no choice but to remove all allergens from their environment, they touch everything, put their hand in their mouth/toys that other kids put to their mouths then our child will touch/and or put to his mouth. They also can't talk to tell us the instant they start to feel odd/a reaction starting.

My family is the same. I get the 'my goodness who could possibly be allergic to peas!!!'. They read all the latest and greatest reports on allergies and wonder don't I WANT to help him. Start feeding him bits or nuts or this or that and he will become tolerant, I really should at least try is their attitude. The argument (excuse I used to allow them) that allergies weren't around to this extent years ago doesn't fly with me any longer. After I've explained it 100 times what more do I need to do for them to believe me.

I find family friends take the matter 100x more seriously than family. Like with chocolate, my parents insist over and over and over that if I just buy expensive chocolate it will be safe from nuts/peanuts. They make it sound like I like to make things more difficult than they really are. SIGH!!! Argue and explain till I'm blue, if they don't get it they don't get it!!! They just will never be alone with my son

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DD 12 yrs -no allergies
4 yr old DS - asthma/eczema Anaphylactic to Peanuts, all tree nuts, sesame , all pea/lentil legumes, gelatin.
Allergic to trees, grass,ragweed, feathers, dander, mold and dust.
Outgrew eggs, fish, shellfish