My 13 year old was diagnosed 1 year ago with PA. She has had between 8 and 10 severe anaphalaxis episodes in the past year which typically involve diarrhea and/or vomiting, swollen lips/tongue, swollen hands/feet, and hives. The last 2 have also included swelling of her ears and her voice has also sounded different. Luckily she has had no difficulty with her airway. The problem we are having is that she isn't taking it seriously. Rarely remembers to take her epi-pen and continues to eat chocolate and ice cream (despite the fact that many of her reactions have been after having ice cream). I am so frustrated and scared. I am also financially getting exhausted. Her last reaction happened on vacation (she ate Dippin Dots at an amusement park when we weren't around) so now I will have to pay an ambulance fee and another emergency room visit. I have considered having her pay for a portion but decided against that because I don't want to take a chance that she will ever delay reporting a reaction for fear of having to pay for the treatment. I would love suggestions from anyone who has gone through this. I think if she had been diagnosed younger it would've been so much easier to teach her to respect the PA. One thing we have done is just recently purchased an ice cream maker so we can start making ice cream for her at home. HELP!!
By Katethegreat on Aug 9, 2013
It'll be a struggle for her because she is older and not used to having to be careful about what she eats, sit her down and ask her why she feels its okay to take these risks. Maybe bring her to the allergist so he or she can explain what could happen. Try buying her a carrying pouch for her epipens (allergyapparel.com has cute ones that aren't very expensive). Make it a game at the supermarket to find "safe" treats like ice cream and chocolate. I'm 16 with a PA and TNA.I went through a rebellious streak a few years ago and decided I didn't want to be allergic anymore and ended up in the hospital for 2 days after a birthday cake with almond creme center was served at a birthday party. That was the wake up call I needed. Try divvies brand chocolate, it's made in a nut free facility, here's a list of safe snacks she can try, and most of it is just normal brands that aren't made anywhere near nuts http://snacksafely.com/snacklist.pdf
By dodie_b on Aug 9, 2013
I know it has to be frustrating. As a mom we worry about our children no matter what. But when they have food allergies it’s a whole new ball game.
I am NO allergist but it sounds like she may be allergic to milk or the CASIN protein in the milk. I just got my 6 YR old tested for milk and CASIN allergies because she was always complaining her tummy hurt after she had any dairy. Thank goodness that is all that happens. Turns out she has a CASIN allergy (very small) but she is allergic to it.
Have you had your child tested?
By PeanutAllergy.com on Aug 9, 2013
Question of the Week: Answered! Every week, PeanutAllergy.com is answering one of the questions posted on our community page. Our response: Education is key when it comes to food allergies. Take your daughter to a food allergy specialist for a consultation and work together to create a list of safe foods and unsafe foods and have her tested again to make sure that she doesn't have an allergy to milk (or other allergens) since she keeps having reactions to ice cream. Educate your daughter about food allergies and help her understand that living an allergen-free life is not that difficult. Help her grow confident and learn to embrace her condition, and try to find a teen support group in the area where she can connect with other teens who have food allergies.
Ask her why she refuses to take her allergy more seriously. Is it because she is embarrassed? Does she not understand that she could die? Does she understand the concepts of cross-contamination and reading labels to check for allergens? Identify the underlying issue and address it with the help of an allergist or a doctor.
You could consider using fear tactics to teach her about her allergy. Although this isn’t always the best policy, in this case it may be necessary. Sit down with her and explain to her that she could one day die if she does not learn to manage her allergies. There are several great books and Youtube videos that explain just how dangerous a food allergy can be. You could also show her news stories of children who have died as a result of an allergic reaction. Explain to her that she is being extremely reckless and needs to be more careful. She has a life-threatening condition and needs to understand that.
If these steps do not work, set up restrictions and punishments until she learns to take care of herself. You could tell her that you will no longer provide her with money to eat out or allow her to go with her friends to amusement parks and other social activities until she learns to eat safely and better manage her condition. You could also set up some sort of reward/punishment system to make sure that she ALWAYS carries an EpiPen. Tell her that she can only eat food under your supervision until she learns to manage her food allergies better and takes the steps necessary to protect herself. While this may make you feel like the bad guy, it is necessary to ensure your daughter’s safety.
By Yael Kozar on Aug 9, 2013
She may be making her allergy worse and response time need to be quicker. My daughter went from 1st anaphy. reaction took and hour to now it takes less than 5 minutes. She is now 13 but 6 near misses and 4 reactions from 1 bite that took 2 months away from her summer and a year to heal her throat really made her even more vigilant and aware. One day the Paramedic may not get to her in time. There is no wiggle room on not reading labels when it is this severe. If you want to contact us you can join FB page "CA, Allergy Support & Anaphylaxis Prevention" and send me a message. If your daughter needs to talk to another 13 year old "that get's it" she can talk to my daughter who helps other kids. We were just interviewed for the Sacramento Bee Newspaper last week and were on the TV show "The Doctors" last year helping others. There may be alot of embarrassment at her age not wanting to be different but having your friends see you have reactions is much more embarrassing than skipping a treat. She needs to enlist her friends to help her. She is not alone.
By jap on Aug 11, 2013
Sorry to hear about your troubles, my comments are related to how i raise my daughter and everyone parents differently.
My daughter has had a peanut allergy since birth and never had an exposure, she is now 15.
the behavior of eating food without caution does not seam appropriate at that age so wondering if it is more behavioral, most exposures at that age are accidental and not by deliberate ingestion without knowing the ingredients in fact my daughter would ask at age 3.
I agree with a comment posted , scare tactics are good, my daughter just watched the video of the 13 year old girl who died at camp after 3 epi pens were given we always discuss topics and safety.
You could dock a portion of her christmas money / Birthday money to pay towards the ambulance that could have been avoided if she had asked you first about eating the snack. Accountability infact separate issue i wondered why my daughter class mates parents let them do drivers lessons this summer after failing the school year Any way good luck
By nhoehler on Aug 12, 2013
I'm very sorry to hear that your daughter is not taking this seriously. My son was diagnosed so early in life, its all he knows. As he outgrows each allergen he's still hesitant to try new things. I would suggest getting her an appointment with an Allergist, but speak to them first about her lack of attentin and maybe consider speaking with a therapist. Sounds to me as if she just wants to fit in and is giving in to peer pressure. Maybe you could also speak to her friends of the importance of her being more diligent in avoiding potential reactions. Lastly, which will be hard, but she needs to supervision. Until she can follow a peanut free diet, she can't go out to the mall or amusement parks or to friends houses. My udnerstanding is that each time she eats peanuts, her reactions will just continue to get worse. When we realized how severe my sons reaction to peanuts were, we removed all items from the home with trace or manufactured with. It was a family decision, we didn't think it would be fair to have this dangerous item in the home, not sure if you did the same, but it helped my son realize he's more important to us than a peanut butter candy or snack. Good Luck.
By momtoemie on Aug 21, 2013
Just for my own information - did she eat Dippin' Dots that had peanuts in them or was it a non-peanut flavor that was cross contaminated? Trying to find a safe food for my kiddo that the zoo has.