We just got back from the doctor's office. Myer had an allergy test today that ended up being completely overwhelming and all kinds of frustrating. I want to write all this down while it is fresh and so I can wrap my head around it all a bit more...
The test itself wasn't all that horrible, they did the 'scratch test', but the results were a bit hard to swallow.
He's allergic to every outdoor allergen- which means that all year around he's allergic to the WORLD.
He's allergic to dogs.
He's allergic to DUST MITES. The doctor told me that I should seriously consider pulling up the carpet in his room and putting down wood floors- as well as no curtains allowed, and every pillow or mattress in the room needs to be encased in (HELLO expensive) allergen covers. Also, I have to wash all the linens in his room (including Ezra's) in 150 degree water at least once a week.
He's allergic to wheat.
And eggs.
And peanuts.
And strawberries.
And probably more foods that they weren't able to test for.
His eczema is not getting any better and he needs breathing treatments and epi-pens and rescue inhalers on hand at all times for when he's wheezing.
They have to take a blood sample in the next couple of days to do more extensive testing and then we have to go back for something called a "Food Challenge" which sounds... about as fun as a nice dip in a shark pool.
On the way out, Myer was screeching and arching and they were asking me to fill out pages and pages of paper work and then the card was declined and I forgot my cell phone at home on the dresser and I just about LOST it. I think the receptionist had no idea what to do with me. haha I was such a disheveled mess at that point. I was simultaneously trying not to cry while writing a check and holding a screaming baby.
*deep breath*
Okay, so what do I need to focus on for the right-now?
I think my biggest challenge will be keeping Myer off of WHEAT for the next month or so until they do the blood draw/food challenge thing.
Do any of you or your kiddos have experience with a wheat allergy? WHAT THE HECK do you feed a child that contains no wheat besides fruits and veggies?
URG. Thanks for letting me vent. And for any advice you can give this floundering & stressed out mamma.
(I think I need a margarita. heh.)
35 comments:
Oh Emery!!
We just returned from the allergist yesterday with a very similar diagnosis (the WORLD, the mites and covers and restricted diet - for me too since I'm still breastfeeding!).
I have some really good ideas and information, but we should email about it. Sadly, I am crazy busy for the next four days - but after that, let's do some serious figuring out together, K?
mariannescrivner (at) gmail (dot) com
allergies are way overwhelming, aren't they? my son (who is nursing) is allergic to dairy and corn and that is a lot to deal with, but you have so much more. The one thing that has made it easier is that i cook one meal for everyone. my older kids still get foods they are used to for lunches or snacks occasionally, but cooking multiple things was frustrating. from what I read it is better to look for alternatives rather than "wheat look alikes". Quinoa, rice and beans are good things that most people in my fam will eat.
here is a blog where the family avoids gluten (which is basically anything wheat) which is helpful. http://aresohappy.squarespace.com/ also has a lot of other fun things (orthodoxy, crafts, outdoorsy,simplicity).
I'll be praying for grace for you.
monica
Emery, you can find all kinds of gluten-free products in the regular ol' grocery store. There's usually a "healthy" isle with all natural and allergy specific foods. You can find gluten-free, peanut-free, egg-free mac and cheese, bread, chips, crackers, pretzels (which are delicious!), cookies, and all sorts of other snacks. Trader Joe's is a haven of gluten-free (which includes wheat-free) or just wheat-free products. Good luck!
you might need a couple margaritas, methinks. Holy cow, Emery!! I was stressing out just READING this.
I don't have any advice or ideas for you unfortunately, never having ahd to deal with this myself, but you can be sure you'll have my prayers as you navigate all of this and figure it out!
two things: 1. God never ever gives us more than we can handle. and 2. God gave Myer these allergies for some reason, so you can bet He's going to provide a way for you to provide for your boy. :)
There is nothing worse than a crying kid in a doctor's office while you're trying to fill out paperwork. I've been there!! My heart goes out to you!
Thank Goodness that in this day & age there are a LOT of wheat and gluten free foods available. The commenter before me is right. If you don't have a Trader Joe's you can probably get things online too.
Hang in there!
oh man! so sorry! my kids have problems with allergies (not this severe). last year we had a heck of a time with breathing treatements, steriods, antibiotics, allergy medicine. I don't feel like any of it helped. I felt helpless to get my children well as they were snottily hacking their lungs up at all hours of the night and therefore not sleeping.
this year when the symptoms started coming on the doc said we needed to start treatments again. i was about in tears, "thinking none of that crap helped last time." i decided to get a different opinion and took them to a nature path who specializes in children. Her name is Dr.Pam Cox and she works out of Brooks Wellness Center on NW Expressway between may & villa on the south side. She put them on some all natural herbal supplements and within a day or so they were showing improvements. We had to go back and do a little tweaking, but she was so great insisting that I call her on her cell phone over the weekend if things didn't get better! (what doctor does that??) anyway, it's worth a try!
My friend Tara and her son have gluten issues and don't eat wheat. They eat a lot of fruits, veggies, rice, gluten free oats (only available at akins), corn tortillas. Find her on Facebook- Tara Silvestri. She has lots of good recipes.
Hope you get everything taken care of! Hug that little guy to pieces!
Oh, man. Margaritas on me!
ps
You'll figure it out. You have brilliant mommy-intuition. Hugs your way!
Hello. I've read your blog for literally over 2 years now probably but don't think I have ever commented :( Sorry. But, I did want to send you this link of another blog I follow. It's a very interesting mom blog but also she is very schooled in children's allergies. She knows a great deal about alternative therapies and is uber smart and fun to read.
http://thoughtsaftergod.blogspot.com/search/label/Health%2FNutrition
So sorry about your sweet boy.
SunnyK
I'm just like Micah and Sunny - I've been reading for a long long time and have never commented.
I have Celiac Disease (allergic to gluten including wheat, rye, oats, barley, MSG, malt from grain). I just moved from OKC to Denver, but while I lived there I found the the Akins on 63rd & May and the Homeland at Britton & May have a wide selection of wheat/gluten and even egg free foods. Everything from cereal to cookies. Even the newer or recently updated Wal-Marts are starting to carry certain items. I've never had much luck at Target.
You might mention Celiac to your Pediatrician just to rule it out. But I've found that eating gluten free is more all encompassing as far as food allergies go.
I went through food allergy testing as a college student I couldn't imagine putting a child through it. I'll be thinking of you and Myer.
Good luck and feel free to email me if you have questions.
Wish I could have been in that waiting room to hold a baby for you or just give you a hug.
OK, you can do this. I do it every day and you can too. It is overwhelming and frustrating, but it is doable.
Gluten free (wheat free), stuff is popping up all over the place in grocery stores. However, some of it is really expensive and some of it is expensive and doesn't actually taste great at all.
Here are some of my favorites though:
-Ancient Harvest Quinoa Pasta is the best tasting and best textured wheat free pasta. I don't even buy regular pasta anymore and we all just have this. It tastes like normal pasta. It does have corn in it though and if you suspect that as an allergy then I would try some brown rice pastas. I did not like the DeBoles brown rice pasta and it basically desintegrated when I tried to boil it, so that is a starting place for you.
-This is my favorite wheat free bread: http://glutenfreemommy.com/baking-gluten-free-bread-millet-oatmeal-bread/ I substitute Ener-G egg replacer for the three eggs it calls for (http://www.ener-g.com/store/detail.aspx?section=8&cat=8&id=97). I usually make one loaf every 1.5-2 weeks, slice it, freeze it and toast individual slices for Bean as I need them. I use the slices for sandwiches and they also make really good mini pizzas.
-There are a lot of good blogs out there that have recipes now too. The one I linked to above for the recipe hasn't been writing for awhile now, but all her recipes are still available. Some of my other favorites are Gluten-Free Goddes (she has a lot of vegan recipes too which are egg- and dairy-free)http://glutenfreegoddess.blogspot.com/ and the other one I like right now is Gluten Free Girl and the Chef (http://glutenfreegirl.blogspot.com/).
-Bean really loves the KinniKinnick KinniKritters Animal Cookies.
-She also loves the cereal bars that Glutino makes.
-If a recipe like a soup or stew calls for flour as a thickener, you can use cornstarch or other GF flours
-EarthBalance buttery spread with olive oil is our favorite butter substitute
-Bob's Red Mill has a lot of GF bread and cake mixes that I've heard great things about, but haven't tried myself.
-Daiya Vegan Cheese, if you can get it, is good. It tastes like Kraft Singles and melts and stretches more like regular cheese.
Hope that helps! Please feel free to message me on FB or send me an e-mail (snlwuertz at gmail dot com) if you need anymore help or answers to questions. I'd love to help you get through it and direct you where I can with what I know. It is challenging, but like I said, it is also doable. :)
Oh and one more thing, Ian's Frozen foods makes a line of kid TV-dinner style meals that leave out most of the top allergens (dairy, eggs, wheat, etc.). When we are out of town or busy these work great for us because I can usually find them at most healthfood stores. I also like that all the ingredients on the label are things I recognize and can pronounce. :)
YOU GUYS ARE SO AWESOME!
Thank you for all this great info and encouragement. Keep it coming!!
It helps so much just to know I am not alone in this... that I can email you guys with any questions that pop into my head...
Thank you!!!!!
so sorry Emery. I would echo Talia with anything I said for she is so right. Hang in there...have a Margarita (or two) and take that deep breath!
We'll be praying for you and little Myer.
Oh Emery! For one, here's praying he'll grow out of them. Also, I was just talking to a friend the other day who was allergic to milk as a child. They prayed and prayed for healing, and finally he really felt that he had been healed, went and did the "Food Challenge" and his allergy was totally gone! The Lord heals allergies! :)
Wheat-free is so manageable! Actually, the entire list is manageable. I totally have friends who are in this situation themselves or whose small children have these same allergies. Mexican dishes are great, make them with corn tortillas and you're set. Great Harvest makes a Gluten-Free bread, and I agree with the Trader Joe's idea! They have wheat and egg free noodles.
You can do this!
AWW, poor kid+family (because allergies change your lives too)! I don't have kiddos and didn't find out I had Celiacs disease (wheat= poison to my body) until I was 20 years old. The good thing is wheat free is much less carbs which equals healthier, but it's SO hard to completely cut out because it's in every flippin thing! I would look up the columbian food Arepas and make them your best friend. They can be his bread substitute for anything. not sure if he'll like him as a kiddo (he might love them!), but he will probably like them growing up. Also, fries and potatoes are fantastically wheat free, and there are more substitutes available now. I'm allergic to all forms of gluten which is more than just wheat, plus all nuts, strawberries, and a bazillion medicines. Boo. :(
Emery! That is CRAZY! I have several friends who are gluten free/ wheat free, egg free, dairy free and they have TONS of stuff out there now. Just as a quick regular snacky food for Myer that you can get at almost any store :D Chex cereal (the corn, the rice, the chocolate, honey nut and cinnamon) They also have wheat free cheerios at Akins. Make his quesidillas with corn tortillas instead of flour :) At least he LOVES beans and his vegetables! You are in my prayers. Let me know if you need anything! I used to shop gluten free for the church because we had several kiddos with Celiac. Oh yeah - Hi to SunnyK!!!
I'm so sorry that Myer is allergic to the world! How sucky! Is this something that he will grow out of? Sorry, I don't know anything about allergies except for heat rashes. Hoping that you will get used to changing the lifestyle for him and it'll become normal for you and the family soon :)
I am praying for complete healing of all allergies in Myer's body. God you ARE able to heal and I pray in Jesus name that you would completely take away ALL allergies.
(I don't know you or anything, just saw your blog on a friend's blog, but I am committed to praying for healing for your son.)
Amanda
Emery,
Love your blog very much.
I am an lifer in the allergy world. I was diagnosed at age 3.5 as being allergic THE WORLD as well. Just right now I am having the biggest drippy nose due to something I've encountered today.
For the dust mites in your house, my personal thoughts (or my mother's at the time) was that she could deal with sneezing and drippy nose of her child rather then rip out the carpets. This also stood with the moldy basement, the wood stove, the flowers in her garden, the trees around our house, the dusty curtains and the brand new kitten. She did not follow any of the advise of the allergist, and was given a bit of grief every year at my check up, but she stood her ground. Instead, I was put on a low-dose antihistamine which I took my whole childhood twice a day every day. When I forgot I got drippy and snuffy. Easy to remember to take them, even at age 5. I did not have asthma with my allergies, so this may change in your life but keep in mind you have a life outside of allergies and so does Myer.
I also have some food allergies, none life threatening but with such unpleasant results I learned quickly to avoid these foods, even at 4 and 5 years old.
Myer is younger then I was, but as he grows he will be come more aware of his allergies and how to help you.
I'm now 30 and have learned that allergies change as you grow. Some you are stuck with, some you grow out of, and then there are some that you need to really keep track of or they will make you sick. Myer will be a big help in this struggle before you know it.
For wheat free, start here:
http://crockpot365.blogspot.com/
If you follow her directions and use her exact directions with the same brand name products, you will have a yummy place to start. Plus crock pots rock in the summer.
When I was young I was allergic to ev-er-y-thing. Dogs, cats, grass, Christmas trees, air, water (JK). But, really, just like your son, everything. I remember going to the allergist weekly for shots and would have to do rounds of steroids and breathing treatments.
It is overwhleming, but totally doable. And...great news... I grew out of it.
Allergies are the pits. My son has a peanut allergy and It's not always easy to avoid them. I found this website to be helpful.
http://savoryseasonings.blogspot.com/
Being a vegetarian isn't a death sentence. You are doing a great job. Keep talking about it.
Love you
jenny
oh! you're not in it alone. my nephew is allergic to everything on myers list AND DAIRY. ugh.
everyone has given you some great resources. once you get your feet wet it gets easier. there are so so many great alternatives available these days.
keep your head up!
It's actually not that hard to feed wheat (gluten-free). Everything is made with rice-based alternatives now! My kids eat very little gluten and sometimes go days without eat. All our pastas are rice-based, even gluten-free bread is available! My brother was allergic to dust as well and I don't know how bad Myer's allergies are but it really wasn't that bad. He sneezed a lot in the spring and summer months but other than that had no real reaction.
Anyway, if you need to chat about gluten-free alternatives let me know! It's scary at first but once you get used to it is actually pretty easy. And MUCH healthier for everyone! xo, love.
Allergies are THE WORST! Thankfully I don't have many food allergies but I am pretty much allergic to much of the outside world and DUST MITES.
The Dust Mites aren't as difficult to control as it first seems. My parents had to pull all the carpet in our house when I was young, and I might be wrong, but I think they got to write off many of the expenses from their taxes. Something about them being necessary for health - don't quote me on that but you might want to look into it.
Also, I've noticed many people have commented on the gluten/wheat free diet. Last weekend I spent time with a friend who is allergic to wheat and peanuts (can't have anything from a factor with peanuts) and I was surprised by the amount of stuff she could eat. It's very manageable once you get used to it.
Oh, and when Myer is older allergy shots might be a solution. Both RJ and I have had them and they help alot. They actually helped RJ's asthma to DISAPPEAR! And as a kid he was constantly having asthma attacks.
I was overwhelmed by your post, but even more overwhelmed by the outpouring of love, support & suggestions you've been flooded with so quickly!
Community is such a gift.
Emery! I am reading a really, really great book about food allergies called "Diet Wise" by Dr. Mumby . What youd doctor said about the elimation diet is EXACTLY right!!! It will help your poor baby get over all of his asthma attacks, excema, and more! I have a wheat, and casein allergy (dairy) and probably more. I'm going to do the same type thing, and probably with my kids eventually. We've TOTALLY changed the way we eat, and I've learned to cook all over again. You can do it, Emery! I know you can. Praise God for having a wise doctor that goes for the diet rather than pumping your kid full of drugs!
Kelly
PS, you can totally call me if you need some gluten free cooking tips! I'm getting better at it. Udi bread is the best gf/df I've found... info like that.
oh my goodness, i was SO there with you this week. the way you described yourself at the dr office was SO me at the bank! It was awful.
I feel you girl. Maybe google a gluten free recipe book for baby food? I dunno.
Hang in there! *hugs to Myer* and **double hugs to mommy!*
http://glutenfreegoddess.blogspot.com/ is awesome and has tons of great links!
shop online for gluten free foods to save money and google for grocery stores in your area that carry wheat and gluten free. lots of gluten free food is also dairy and or caesin free and i can't remember if you said he's allergic to that.
there is so much out there that he can eat that's wheat and nut free etc. chex cereal is wheat free!! some options are more expensive but lots of things are okay and you just don't realize it til you do a little searching.
try rice cakes too? there are even gluten free hot dogs, which are wheat free...
Oddly enough the wheat allergy is the easiest thing to deal with. There are plenty of wheat free products out there now. And wheat free isn't necessarily gluten free, so be careful when refrencing that. Gluten is a protein in wheat, barley and rye: I'am a Chef I have to know these things in my line of business. Don't let allergies overwhelm your daily life, they may limit what your family eats but they can't stop your boy from being happy and totally normal. Food and environmental allergies run in my family. My sister has to carry an epi-pen, since the extent of her allergies is unknown, but it doesn't stop her from being out doors or anything. Actually she is one of the bravest and adventurous people I know. There have been some late night trips to the ER but those can happen to anybody for any reason. I hope this helps. P.S. I used to live in OKC and your allergin levels in peak seasons are actually one of the lowest in the country. Good luck:)
Like some commenters before me, I am a long time reader, first time commenter. I'm sensitive to wheat, and it has been surprisingly easy to deal with. I've read that humans aren't actually designed to eat wheat, and that most of us are sensitive to it in varying amounts. That said, there are tons of gluten-free options available at the regular grocery store, and lots of communities have dedicated gluten free bakeries. I am in Salt Lake City and there are four within 20 miles. Baked goods are easy to modify to wheat free with the right flour blend (a combination of rice flours plus potato and tapioca flours) but it is a process of trial and error. There are many who have gone on this journey before us and have been kind enough to blog about it and share their recipes as well as product reviews, etc. Find what you can at regular stores because health food stores are so expensive (like, Whole Foods charges almost $4 for Annie's Wheat free Mac n Cheese. It's $1.82 at Target)Good Luck! I'd be happy to give you tips if you'd like. A friend and I are both feeding our children wheat free food and not making them gag :)
E - I'm so sorry to hear all of this. A friend of mine up here in the NE might have some super helpful info on going wheat/gluten free. Here is her blog including a book she wrote about gluten free living with kids.
http://www.glutenfreekrums.blogspot.com
My pastor's son is allergic to milk, eggs, and peanuts... and his wife actually created a dessert book because of this. http://www.blurb.com/bookstore/detail/1083804
Check it out. It might be helpful:) Best of luck.
Emery, I'm so sorry to hear that little Meyer (and you guys!) has to deal with all those allergies! No fun! I have been an allergic mess all my life. I can attest that removing carpet from the house can make a HUGE difference! I've definitely seen an incredible improvement when friends with animals get rid of their carpet!
I recently purchased a rubber mask that covers my nose and mouth and has filters on it (a mask like you would use for working around fumes or something)...it looks ridiculous, but at least I can be inside animal-houses!
I don't know at what age children can start having honey, but I have heard that eating raw local honey daily is supposed to help with allergies-to-the-world (I have those, too, but am not disciplined enough to do the daily dose of honey).
As a child I ate egg-beaters instead of real eggs...I don't think I noticed a difference at all.
I really hope you're able to make an easy adjustment to the allergy-accommodating lifestyle. :)
Wow, your kid has so many allergies! I am so sorry. Luckily we live in a world that has more and more gluten-free and allergy-free options available. As well as vegan and vegetarian options. We are so lucky we don't live even 10 years ago, because these kinds of things weren't available then. http://www.elledgechiropractic.com
Post a Comment