Daughter just diagnosed with sunflower allergy. Advice?

Discussion in 'disABILITIES!' started by mom2brooke76, Jul 18, 2012.

  1. mom2brooke76

    mom2brooke76 Proud Redhead who doesn't think that Universal is

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    Hi! My dd, 8, has been allergic to various things in her life (amoxicillin, dog licks from most breeds, etc) and finally went to an allergist today after having an allergic reaction at camp after eating a sandwich made with sunbutter. They use it at the camp to avoid peanut allergies. It figures that MY child would be the one allergic to the sunbutter! ;)

    Anyway, the allergist has said that apparently she has a pretty severe allergy to sunflower products of all kinds. I'm guessing he's concerned because now she has to carry an epipen with her in case of a severe reaction (I wasn't at the appointment because she's visiting her dad in Chicago for the summer). She's also slightly allergic to other things, but this is the only bad allergy.

    I've never dealt with food allergies before. I plan to research this new thing to me, but how difficult is a sunflower product allergy? Obviously I want to keep her away from sunflower seeds and sunbutter, but how often is sunflower oil used in your typical grocery items? How about in restaurants? Is it cooked with?

    Any help/guidance that you can offer to get me on the right track will be greatly appreciated! :goodvibes
     
  2. ctl

    ctl Mouseketeer

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    I'm pretty sure that many potato chips are cooked in sunflower oil, and restaurants deep fry in various vegetable oils, sunflower being among the popular ones. 'm reading the back of my DH's Quakes Rice snacks and they have sunflower oil in their ingredients list.
    I would ask her allergist for a comprehensive list and if he has any advice on school lunches etc. This is definitely a difficult one, but if she is so allergic that she needs to carry an epi-pen then it's best to banish all foods that have sunflower oil on the label from your home and warn her friends about cookies and birthday cupcakes etcpopcorn:::rainbow:pixiedust:.
     
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  4. MSSANDRA

    MSSANDRA DIS Veteran

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    The problem with sun flower seeds is that it is not one of the top 8 allergens. The top allergens are required to be listed at the bottom of the ingredients of food products. Things like eggs, and peanuts etc. are listed. Without these, you will need to read VERY carefully EVERY label of every food that she eats. I agree to talk to the doctor but also do your own research to look for hidden sources. Be sure she has that epi pen on her ay all times. Most 8 year old are ok to carry it themselves if the school will allow it.
     
  5. mom2brooke76

    mom2brooke76 Proud Redhead who doesn't think that Universal is

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    Thanks everyone for the advice! We've talked to the doctor, but they just say to watch for the pretty obvious stuff. I've also started to research online, but unfortunately since sunflower allergies aren't nearly as common as others, the information seems to be lacking. And yes, her epipen will be with her at all times (hopefully in school too depending on their policy.......otherwise it will be with the nurse/office).

    Those breakouts can be scary! Fortunately she's never had one that benadryl didn't fix, and hopefully never will. Our scariest breakout so far was when we were on a plane taxiing down the runway. Right before we got in the air I noticed that she was scratching (at this point she hadn't really had a problem with breakouts often before). I assumed it was her eczema (she gets it badly on the inside of her elbows and backs of her knees) and just asked her to try not and scratch. Well, when I got a look at it her entire arm was covered in welts and it was quickly spreading! I didn't have benadryl on me (now I ALWAYS do), so had to try and get an FA. Unfortunately there was bad turbulence so the pilot made them all sit down and none would answer my call. Finally when they did I simply asked if they had Benadryl, not knowing how complicated that would be. They had to call the ground to get permission, then attempt to find a nurse onboard and then a doctor, who both confirmed that she was having a reaction of some sort. Finally they offered me capsules, but at that time she couldn't swallow pills yet, so they found a mom with liquid Benadryl (they didn't recommend that I take it from her, but at that moment I didn't care). Anyway, all drink/snack services were suspended from the flight (apparently they do that when there is a medical emergency) and about 10-15 people were waiting on her as soon as the plane door opened (firemen, paramedics, Southwest spokespeople). I hope to never experience that again!
     
  6. Alexsandra

    Alexsandra Ready for the next adventure

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    Hi there,
    I have suffered with food allergies ever since I was little. I am severely allergic to anise and cold cuts (the allergist donesn't know what allergen in the cold cuts: too many variables). I also now have a son who is severely allergic to Hazelnuts. At first I took my own allergies pretty lightly but when I had my son diagnosed with a nut allergy everything changed.

    Hearing your story, it makes me cringe. I reminds me of me and my reactions to the information when it was first given to me. Unfortunately, doctors don't give enough information about how to react at first sign of an allergic reaction. And they especially don't give the support needed. It is really stressful when you or your child has an allergy. You have to be on high alert all the time. You have to become obsessed with food labels, what is being served at a party and what, where or who can cause your child to be at risk. It is stressful for a mom and can feel overwhelming. When my son was diagnosed I felt guilty, alone and scared to make a mistake knowing that his life was at stake. Just knowing how severe a food allergy can be, how could I protect him from the having one, how could I protect him from other!?

    I just want to give you some advice and the right tools to help you make the right decisions at the right times. And to give you the support that I did not have.

    First I suggest you read this article written by a mom who is an allergist whose 3 kids have severe food allergies. She explains what an allergy is, how the body chemically reacts to the allergen and what the epinephrine injection does to stop the reaction:
    http://theallergistmom.com/2012/01/12/the-science-of-anaphylaxis-an-allergic-storm/
    Her whole blog is just wonderful and she tells her side of the story on how she is living with 3 allergic kids. She gives medical and emotional support.:worship:

    Next I wanted to tell you that my son's allergies started out like your child's. Just skin rashes and/or stomach disturbances. I did not know then but his reaction counts as an anaphylaxis reaction. I should have injected him the epinephrine right away but I would just give him Benadryl instead, thinking this was the right thing to do. His allergies quickly progressed to more severe reactions the next time.

    He went from skin rash to this:
    He had been given a cake that contained no nuts at a family party recently but it must have had traces of hazelnuts. He started screaming in pain crying out that t he did not feel good and that it hurt when he swallowed. I was terrified! But I did not hesitate, I injected him with the Epipen needle within minutes and called an ambulance. When we got to the hospital, the doctor had to give him a second injection as the allergy had come back. He told me that I had saved his life by not waiting to inject him. I can't tell you how that affected me. First I felt guilty for not being more careful about what he was eating. I had trusted the person who had brought the cake and told me there were no nuts in it but that was my first mistake. Never take chances! Next it taught me another valuable lesson: always administer Epipen at first sign of reaction, never wait. Like the doctor said, I had saved his life. I always was scared to give it to him in the past thinking "oh I'll give him Benadryl and it will stop the reaction". Boy was I wrong. As you can see in the article Benadryl only reduces the external inflammation and skin rashes. It does nothing internally where the danger really lies.

    Here are the signs of anaphalactic reactions so you know when to inject:
    An anaphylactic reaction can involve any of the following symptoms, which may appear alone or in any combination, regardless of the triggering allergen:
    -Skin system: hives, swelling, itching, warmth, redness, rash
    -Respiratory system (breathing): coughing, wheezing, shortness of breath, chest pain/tightness, throat tightness, hoarse voice, nasal congestion or hay --fever-like symptoms (runny itchy nose and watery eyes, sneezing), trouble swallowing
    -Gastrointestinal system (stomach): nausea, pain/cramps, vomiting, diarrhea
    -Cardiovascular system (heart): pale/blue colour, weak pulse, passing out, dizzy/lightheaded, shock
    -Other: anxiety, feeling of “impending doom”, headache, uterine cramps, metallic taste

    I am telling you this not to scare you but to provide you with the information I was lacking to make the right decision.:goodvibes

    Check out Allergic Living at http://www.allergicliving.com/ for information and support groups to help you in find ways to better live with your child's allergy.

    A child can grow out of the allergy cause his/her body is still is changing so keep your fingers crossed. I sure hope mine will grow out of his.
    I send you tons of pixie dust and hope all turns out for the best!
     
  7. mom2brooke76

    mom2brooke76 Proud Redhead who doesn't think that Universal is

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    Alexsandra- Thanks so much for that information! I attempted to join that forum yesterday, but am still waiting on approval.

    Yes, this whole thing is scary! I'm even more stressed out now because for the last 3 years she's been flying with me to Chicago to see her dad. All this time I've accompanied her back and forth due to not feeling that she was old enough to fly as an unaccompanied minor. She's now easily flown 40-50 times, so she gets it. Well, her dad told her that once she was 8 that she would start flying alone. When he told me that recently I just about died (she's ADHD and may have Asperger's) because emotionally I don't feel that she's ready, but agreed to try it once to see how it went, since I'll never know how she'll do unless we try. That was all fine and dandy until I found out about this allergy yesterday! We generally try to fly Southwest and I called them today to find out if they would either give/assist her with her epipen should an allergy issue arise and they said that they can't. I can't find an airline that will offer any kind of assistance. I'm sure it's due to liability, but imagine what could have happened had I not asked?! She just turned 8 and with her learning disabilities, etc, there is no way that I could rely on her to give herself that injection. Heck, I can't even get her to take her inhaler for cough variant asthma herself, and that isn't life threatening! Her dad may hate to pay for both of us to fly, but until she gets to an age where she can be relied upon to know what to do I won't be ok with her flying alone.
     
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  8. HFred

    HFred Earning My Ears

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    As a parent of a child allergic to eggs, peanuts, tree nuts, sesame and (used to be dairy until he outgrew it at age 5), I understand your fear. Sunflower is very rare and unusual. Sunbutter is our go to in place of pb or treenut butters.

    My son was diagnosed prior to the FDA labeling rules changing so I understand the difficulty in reading a label when an item is not on the Top 8. I still have to check all ingredient lists for sesame! It will become second nature with you over time. It will never stop frustrating you however!:worried: Train her now to tell anyone she comes in contact with that she is allergic...teachers, waiters at restaurants, grandma and grandpa. I am a big component of teaching my son to self advocate. If I forget, he has to step up to protect himself b/c I won't always be there to do it.

    Ask the allergist if there is a list of "code words" for sunflower (i.e. when my son was allergic to dairy and prior to the FDA change...I had to look for whey, casein, dairy, milk, etc...egg was albumin, yolk, etc...). Never trust a product. Just because it is safe on one grocery trip, it may not be the next time or from a different store. Production lines change all the time and different production plants of the same product have different things run on the same lines.

    If you are not yet a member of FAAN, it is worth joining at least for a year. Their resources are fantastic and you can call them with questions. I would not let an 8 year with a life-threatening allergy fly alone. Too many variables to contend with! Your daughter has the right to have her Epi with her at school. If you have to fight for a 504 to get it, then do it. My son has a Food Allergy Action plan only but he can carry and will this year for the first time. It is a small school and the staff knows him well and are open to suggestions so I have not had to "fight" for his safety.

    Good luck. It is scary and worrisome but it will become part of yours and hers routine. If she has never had a full allergy testing done, do it. She and you will learn to handle it and live with it and be fine! My son amazes me everyday with how he takes it all in stride!:love:
     
  9. mom2brooke76

    mom2brooke76 Proud Redhead who doesn't think that Universal is

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    Thanks for the info! It's frustrating that it's such a rare allergy since it makes it that much more difficult to find out lots of information. She had full allergy testing done yesterday, and fortunately the only severe allergy was to sunflower products. She had others, but none were considered to be "bad" thank goodness! I will definitely check into FAAN :goodvibes
     
  10. ekatiel

    ekatiel DIS Veteran

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    You've gotten a lot of good information here. One thing you may want to ask the allergist is about sunflower seed oil. Many people with peanut and soy allergies can actually tolerate peanut and soy oils (unless they are the "gourmet" cold-pressed versions). It may be that your daughter can tolerate sunflower seed oil (do NOT try it on your own, though, ask your allergist!). If she can tolerate the oil, then avoiding sunflower seeds should be easier. --Katie
     
  11. Alexsandra

    Alexsandra Ready for the next adventure

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    I know West Jet airlines are taking measures to carry 2 Epipen on board to inject someone who is having an allergic reaction. You can look into it. I don't know if this helps.
     
  12. mom2brooke76

    mom2brooke76 Proud Redhead who doesn't think that Universal is

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    I looked into them, but from what I can tell they only fly from Orlando to Canada :( It doesn't look like they fly within the US. Hopefully I'm wrong about that though!
     
  13. crashbb

    crashbb DIS Veteran

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    It's a Canadian airline. All of their flights either originate or terminate in Canada.
     
  14. Alexsandra

    Alexsandra Ready for the next adventure

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    Sorry about that, it is a Canadian airline. Here is what I found on USA carriers that might help.

    http://foodallergies.about.com/od/outandabout/a/Airline-Food-Allergy-Policies.htm

    If I were you I would not send my allergic child alone on a plane. Even if the airline can inject the epinephrine needle, I would not leave that kind of responsibility to a stranger. But that is just me! I would feel too guilty if something happened and I wasn't there to protect him/her.
    I know plane tickets do not come cheap and it can quickly burn a whole in your pocket but better that than to loose a child. :blush:
     
  15. disfan07

    disfan07 DIS Veteran

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    I am older (23) which makes my situation even more rare but I was also just diagnosed with a sunflower allergy but it is much more mild (along with being diagnosed with a wheat, oat, and sesame allergy). My sunflower allergy is mild to the point where I don't need to avoid sunflower oil. (for many people, even with peanut allergies, oils are okay because the proteins are not "supposed to be" present anymore because of the heat)

    In addition, I am also allergic to peanuts, eggs, shellfish, coconut, tree nuts, sesame, wheat, oats, brocolli.

    I have anaphylaxed to peanuts, eggs, shellfish and hazelnuts. We think Oats and/or wheat caused a borderline anaphylaxis reaction (we are not sure which is why I am going for a wheat oral challenge next week).

    As a previous poster said, allergies can worsen very very quickly. I ate shellfish one week with no noticable problems adn the next time I ate it, I went into anaphylaxis. In addition, if oats and/or wheat caused my severe reaction 4 weeks ago, it was the same thing. I ate a bagel and oatmeal the day before and nothing. The next day, severe reaction (I ate things with both oats and wheat...things I had always eaten). But even with my more mild allergies, I am more prone to severe reactions because I have severe asthma and eczema and I also have an IgE of 3000 which all makes me more sesceptible to unexplained anaphylaxis.

    It's hard. I'm not going to lie. Except for peanuts, all my allergies have developed over the past 5 years. At 23, I still have days where I get mad because I can't go get something from burger king that I used to eat, or that I can't have eggs (even though its been 4 1/2 years), etc. There is so much I cannot eat anymore that I used to be able to eat. The thing is, since she is still young, there is a chance that she might grow out of it. That happens a lot with children and food allergies (even peanut allergies).

    I just make sure to read everything. I do eat out, but I know its a risk. I try to eat at restaurants where they have ingredient lists (around here thats BJs, Islands, Red Robin, Chipotle, etc). That way I can see the ingredients. But still, theres always a chance. But personally, for me, its a risk I take because I'm not willing to live in a bubble. Now don't get me wrong, I don't take allergies lightly at all (just ask my camp directors adn fellow counselors....I take the childrens allergies there very very seriously) but you learn that there is a fine line between being cautious and letting the allergies control your life. It takes a while to learn how to deal with it but IME, eventually, you do figure it out.

    I shop at between 2 and 4 grocery stores per week depending on what I need (Whole Foods, Sprouts, Ralphs and Target). I usually spend half my day grocery shopping and the other half cooking for the week. Its hard. Its time consuming, but it's life and it does become routine.

    For snacks without sunflower oil, I have only found a few. If she can have peanut oil though, there are others (there are many kettle chips that are made in peanut oil). But Fritos use corn oil. Also, there is a company called good health natural foods that has avocado oil chips (really good) and some other chips/snacks that do not use sunflower oil. I am more limited because I cant have wheat so there are probably some others that would be okay as well, I just havent looked.

    Hope that helps a little bit. Its a tough allergy to deal with. And allergies in general are very difficult. In my opinion, I think food allergies are one of the most difficult and one of the scariest things to deal with.
     
  16. 1988Polar

    1988Polar Earning My Ears

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    Hi, I honestly do not find this allergy unusual at all. I have been allergic to Sun Flower since 1989. I spoke with a specialist at the time and he said it was unusual and generally speaking, Sun Flower is part of the Rag Weed family. Thus anyone allergic to one will or should be allergic to the other.

    I have been watching what I eat for YEARS. Reading labels is a must! It seems like anything and everything has the potential to have Sun Flower oil. Eating out is hard too... keeping in mind what you see at the stores when reading labels, makes me think of what not to eat when I am out. But that is not always key, so I do carry Benedryl AND Claratin Redi tabs.

    Things to note that you might also notice reaction too: Cantalope, Bananas, and Kiwi there are others too. I cannot think of off hand.

    Personally if I eat Kiwi, Cantalope or Bananas I just get a slight itch in my throat. NOTHING like if I was to eat something with sun flower. I was told to also avoid Flowers from the Crysanthimum family.

    Hopefully things have evened out for you.
     
  17. MyTigers

    MyTigers Earning My Ears

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    My husband got diagnosed 5 years ago with sunflower allergies the hard way. He is allergic to all forms including the vapors from the e-cigarettes. We were glad the bowling alley we frequent banned smoking. However, now they are all using the e-cigarettes and we have found that sunflower oil is an ingredient in some of the flavors. Unfortunately, they won't ban that in the alley so when there is a high use of them, my husband has to take a couple of benadryl just to get through his bowling league. Just wanted to give you a heads up on that in case someone vapes in the vicinity of her that her reaction might be from the vapors.
     
  18. mom2brooke76

    mom2brooke76 Proud Redhead who doesn't think that Universal is

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    Thanks everyone! It's hard to believe this post was from 2012! We've discovered that it's the seeds that she's allergic too, so basically anything with sunflower seeds (including sun butter) causes a reaction. Fortunately it's only been hives, but she tested so strongly against it that she carries an Epipen too. We have learned that sunflower oil doesn't seem to be an issue as it is very refined (this seems to be the case with lots of people according to the doctor). I still read labels and know what is safe when we eat out. We do lots of Disney cruises and they're FANTASTIC about taking care of her, even making her own basket of bread :)
     
  19. Starwind

    Starwind DIS Veteran

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  20. JJ_Ohio

    JJ_Ohio Earning My Ears

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    Hi! My DD just got diagnosed with the same thing (reacted to sunbutter). What else is in the family that youve had to avoid? I.e. DD is allergic to cashews so we tested her for pistachios and mangoes since they're in the same family.
     
  21. 1988Polar

    1988Polar Earning My Ears

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    I have been allergic since 1990 to SunFlower seeds. Understanding that its also a hay fever allergy. You will have serious issues when RAG WEED is high. You have to avoid, Sun Flowers, Daisies, Safflower, Mums etc... pretty much anything in the mum family. Food whys you will need to read labels. Most snack foods and processed foods have sun flower in them. You will have to read labels. Realize that PEANUTS are not a nut.. but they may have sun flower oil. I can eat peanut butter, but I still watch the label. I am not allergic to most nuts, pine nuts or pumpkin seeds. Be ware that you may react to cantalope, Strawberries, Kiwi and some other fruits. I get a scratchy throat feeling with some of them. Nothing as severe as eating sun flowers. Once I had a severe reaction while at a mall. Never realized what it was that caused it. But thankfully I ALWAYS carry benedryl with me as well as Claratin REDI tabs. The Redi Tabs were recommended by a allergy specialist because they do not need to be swallowed, in the event I could not swallow a benedryl I could get something in the system. Best thing I can tell you, no french fries, no chips of any kind at a restaurant.
     

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