Rylie had her first appointment with the allergist yesterday. First he came in and asked a bunch of questions. Rylie has had symptoms of allergies her whole life (respiratory symptoms, dark circles under her eyes, eczema) so he was surprised that she didn’t have asthma. He said that she paints a picture of a kid that will develop it, so we should watch for it. Great. I was told that about Bryce too, because of the bad case of eczema he had as a baby. So far neither of them show symptoms of asthma, so I hope these doctors are wrong.
We talked about the cashew allergy first. He basically scared the crap out of me, and now I am afraid to give her anything that might even have a 0.0000000001% chance of coming into contact with any kind of nut. Ugh. He said that we should avoid ALL nuts, even peanuts. I told him that she eats peanut butter several times a week, and he said that if we give it to her, that we need to watch her because it could be cross-contaminated with cashews. Really?!?!?!
Let me talk about this cross-contamination nonsense for a minute. Now that I have to pay attention and read food labels, I honestly cannot believe how many items have nut allergy warnings on them. It seems as though these companies just slap these warnings on their foods willy nilly as a CYA move. It’s ridiculous. Are there no regulations regarding this? These poor kids with allergies can’t have ANYTHING, if you really take heed to all of these warnings. Of course being the paranoid person I am, I am minding all of the warnings so far, but I’m wondering how far to take this? I mean, Rylie has eaten some of these foods for the past two years with no problem. Should I cut them out now because the manufacturer lists every single allergen that could have “possibly” come into contact with their product? I don't even know what to do about her birthday cake for next weekend. We ALWAYS get cakes from Publix, and she has had several cakes and cupcakes from there, but everything from their bakery has nut warnings on it. I'm telling you, this is driving me insane! I received an email yesterday from one of my “bloggy buddies” about her severe peanut allergy and how she manages it, and she advised that if nuts are not an actual ingredient, then the food is 99.999999% safe. But I honestly couldn’t live with myself if I gave her something that she ended up reacting to.
OK, so back to the doctor visit…
Rylie has to go get blood drawn to test for the nut allergies. We know she is allergic to cashews, but he wants her tested for 10 or so other kinds of nuts. He said if the blood draw comes back negative then he will do a skin test. I don’t understand why we aren’t just doing the skin test to begin with, since apparently that is more reliable, but I’m sure there is a reason. I will probably have Brian take her to get the blood drawn. I will cry, I just know it. He will be able to be brave for her. It is going to suck either way.
After we talked about the nut allergy, we talked about environmental allergies. He seemed shocked that I didn’t have her on antihistamines. Um, I don’t feel like putting my kid on meds because she gets a runny nose now and then. No thank you. And honestly, even if she tests positive for environmental allergies, I most likely won’t agree to daily meds either. I did agree to do the testing for the environmental allergies, though. She had the first two groups last night and tested negative to all of them. I have no idea what was included. He said he will give me a comprehensive report when everything is done.
She actually did better than I thought she would during the test. For those who have never had allergy tests done, they have this little contraption that the nurse was calling a “spider”. I believe it had 10 “legs” that were each dipped into an allergen, and then she pressed it on Rylie’s back and I think it goes just under the skin. It doesn’t really hurt that much, so that didn’t seem to bother her. She had two of those done. Waiting for the reaction is the hard part. The poor kid was itching so bad, and was crying about it. I pulled up YouTube on my phone to try to take her mind off of it and that helped some. That was a LONG 20 minutes! She did really well, though, and didn’t try to scratch it. I really was proud of her. Oh yeah…and they wrote all over her back with a purple marker to mark the testing spots, and I could not get it off last night. She thinks it is so cool!
We go back for the other two groups of environmental allergy testing next week. She knows we have to go back, and isn’t happy about it, but hopefully she will do OK with it. And then there is the blood draw at some point next week too. That is what I am really dreading. No kid should have to go through any of this.
I have to mention that Rylie is doing very well with asking if foods have nuts in them. It’s even annoying at times, but I always just answer her and tell her thank you for asking. I hope she continues to always ask if someone tries to give her food.
I want to hear from moms of kids with allergies! I really do! Please comment on this post, email me, send me a tweet, whatever, and tell me your experiences. I would like to know how you manage this. Do you pay attention to all of the seemingly frivolous allergy warnings slapped on everything, or do you look at ingredients and go by that? For those that have kids in daycare or school, what do you do about parties where parents may be bringing something in? Our daycare requires only store bought foods, but what if someone brings something that contains nuts? Do I find some “special treats” for them to have on hand for Rylie in case she can’t eat something? I’m sure I’m going to have a ton of questions as I become more familiar with this, so I would love to chat with those of you going through the same thing. Thank you for all of your help!
12 comments:
Girrrrl, we should talk! It sounds like you are living my life! My son will be 3 in April and was diagnosed with peanut, tree nut and egg allergies. Oh, and let's not forget dogs! I guess we've been dealing with this for about a year now. He also had eczema issues, GI upset and I hate to say it, but now is developing asthma symptoms. He had a bad "episode" not too long ago and has to be on a daily inhaler. He also is on a nasal spray and antihistamine every night. I, too, was very much against putting him on medication every day. However, it has definitely helped. I have two older children, one of which had eczema and the other who had some respiratory issues but outgrew it...but neither had food allergies (or environmental that I know of). So, it's def. been an interesting "journey". It helped that I was a school nurse and had to deal with students' food allergies prior to this! I have been pretty careful so far with heading all the "May contain traces of" etc, warnings...but I am gradually trying some of those foods to see if he has any reaction. Sorry this is so long, but just wanted to let you know that you are certainly not alone! Feel free to contact me with any questions!
Wow! That is a LOT to be going through. My son doesn't have any allergies but if I'm correct (I could be wrong) Theta Mom's son does. She is super sweet and would be great to ask for some advice.
Following from Friendly Friday. :)
Wow, that sounds like a huge ordeal, but at least you are getting your answers. I must have missed the post about the cashews...what happened there? I think while kids are really little it's best to be extremely cautious, as they get older and can say "Hey mom my tongue is swelling, or I can't breathe" then maybe you can get more adventurous. Some kids do outgrow these allergies, right?
My daughter is allergic to soy bean oil...though she hasn't officially been tested. As a mother, I go with my guts and research labels. For instance, I know that my 5 year old can tolerate the limited amount of soy bean oil in white bread, but cannot tolerate the amount found in peanut butter, ranch dressing, corndogs, mayo, etc...those I will not give her. But I will give her white bread...because as of yet, she hasn't had reactions to it. Maybe it's poor parenting on my part, but I really go with that mother's instinct. If you are worried about giving her something, err on the side of safety and just don't give it to her. In order to get around my daugther's allergy, I try to make my own bread (see I don't always just blindly give her bread) when I have time, and other foods, minimizing her exposure to the allergy. She takes benadryl, a lot if Dad is in charge, because I can't get him on the same page with NOT giving her stuff w/soy bean oil in it. He seems to think that just because she seems fine she will be, but the tricky part of food allergies is that they can have a reaction one day, say hives and then the next time stop breathing. This is why I go with my gut and keep benadryl on hand, as well as an epi-pen. It is extremely frustrating to shop though because like nuts, soy bean oil is in EVERYTHING! I just have to learn how to make more things that are safe for her...the more you can do in your own kitchen, the safer your child will be and the less anxiety you will feel.
My daughter had a blood draw for allergy testing at... 8 months old(?) after spending a horrible month constantly congested, watery, itchy eyes, the whole allergy works. They used a butterfly and just popped the tubes on the ends (just 2 cuz it was a general test) and was over in a minute. If you're going to a lab, make sure to ask for a pediatric specialist. We'll be seeing an allergist later this year or early next to get a "definitive" answer on whether or not I passed a latex allergy on to her.
As for food at daycare, there are some serious allergies in my daughter's class and their parents provide a separate snack. While it is suggested we attempt to bring in something everyone can eat (we have a snack share program), the parents with allergies realize that not everyone reads labels like they do and prepare accordingly. We can only bring in store bought foods, because of a legal requirement AND for the ingredient lists and allergy warnings. It allows each parent with a concern to read and make their own decision on a certain snack for their child.
~Erin
http://dreamingwithmidnite.com
My oldest is allergic to whole milk. It's so strange. He can have things made with it, like full fat ice cream and all that jazz but if he tries drinking it he's sick for at least 2 days, isn't that strange?
Mo Betta and I have the same kid! No kidding. The whole thing was just a nightmare finding out one thing after another! It's exhausting.
Like Jamie Bishop we keep Benadryl on hand and travel with an Epi-Pen. We keep one at his preschool too. The nut thing. All 3 of our kids had the skin test. It was AWFUL! They went through 60+ sticks. They cried and cried but we had to know. What we narrowed it down to is our son only has a reaction if it's ingested. He can be around nuts but he can't eat them or the fun begins. We do watch for the labels but have never come across any issues of stuff being manufactured in a place that also has nuts. The schools are really good about this too because if they know your child has this allergy they make sure all the parents know. This helps tons BUT we do teach our son what to stay away from. Especially around Halloween, Christmas and Valentine's Day we check everything and we help him identify stuff by the wrappers! Teach them as early as you can what to watch out for and as soon as they can put the letters together teach them that too. Our son knows how to spell peanut. lol - Hope this helps you.
Two of my three sons are allergic to peanuts and tree nuts.
They also have asthma so they carry epi pens. The more exposures you have to the allergen the stronger the reaction gets, so I don't take the chance with 'products made in a factory'. If that's on the label we don't eat it.
I agree, its a CYA move on the manufacturer's part, but we still don't risk it.
Also, we've found the only things the kids really mind giving up are desserts and stuff, chocolates and cake...but that's junk food anyway. So in the long run, they'll be healthier for having this allergy.
I send in snacks that they keep in school for when someone is passing out a birthday treat or something.
We don't never eat the birthday cakes from bakeries (or grocery stores)...nuts and almond flour is used in bakeries all the time so the risk of cross contamination is too high.
We always ask at restaurants what's safe. The chef usually comes out to chat with us.
Oops, that should be don't ever, not don't never...
It seems that there is a lot of confusion about nut allergies out there...I've been there and I can help.
Visit my blog http://nut-freemom.com and also you can find me on Facebook under Nut-Free Mom.
I have many of the same concerns as all of you but one thing I've learned is that you must take nut allergies very seriously. I live in Chicago and a girl just died here from her nut allergy. Nut allergies are not something to be "adventurous" about as kids get older. The girl who died wasn't a little kid--she was 13 and knew about her allergy.
However, you can learn to help your child live safely and happily. I am happy to share my tips, so I hope you'll visit.
I wish I had advice for you, but I don't. I'm guessing it will get easier though once you learn which products/foods are ok and which are not. You don't give yourself enough credit for being such a strong woman. It's hard, I'm sure, but you are doing great. I wish you didn't have to deal with this, but blogging is a great way to get other people's perspectives. Hope the rest of the testing goes well. I'll be thinking about you all!!
This totally stinks for you and especially for Rylie. Thankfully my kids do not have food allergies, but it seems like so many kids do. I would be torn about the whole thing too. If she has eaten peanut butter for forever, I think I would still give it to her. I am sure there is a chance of 'cross contamination.' But then she is never going to be allowed to have anything. And that stinks. Talk to more moms and just go with your gut :)
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