Mystery Rash

The title may be deceiving.  Pretty much all of Rapunzel's eczema is a mystery rash.  But the other day, she broke out on her face during lunch, and left me scratching my head.

Everything on her plate was things she's eaten multiple times before:  Trader Joe's round crackers, Turkey lunchmeat, and cucumbers (she also had watermelon and banana on her plate, but she didn't eat them).  I re-checked the ingredients on the crackers and lunchmeat again, and they were all free of her allergens.  I texted this pic to one of my allergy-mom friends.

She agreed that it looked like a reaction.  After going over the ingredients with her, she had suspicions about the Sodium Nitrite found in the turkey.

She sent me an article about skin reactions to nitrates/nitrites and after doing some more of my own research, I wonder if this is what caused it.  So I guess we'll add that our list for now.  That's something we'll definitely be asking the Immunologist about in May.  Looks like it'll be more extensive label reading for me.

But ANYTHING to help this sweet girl feel better!

Mommy Fail

Last night I wanted to take the kids to do something fun after dinner because I knew Eric would be home even later than usual.  I googled myself silly to try and find a dessert that Rapunzel could have somewhere easy.  I found that Orange Leaf had 2 flavors of dairy-free "frozen yogurt":  Orange and Pineapple.  I looked over the ingredients and decided the pineapple was ok!  So I grabbed a pack of gummy bears from our pantry, loaded the kids up and headed to Orange Leaf.  I explained to Rapunzel that the only flavor she could have today was Pineapple and that I'd brought our own gummy bears for her to put on top and she was thrilled.

So all the other kids picked which flavors and toppings they wanted (I made them all go easy as they have been known to overfill and overtop their bowls, resulting in a $6 dessert! LOL

We all sat and ate our frozen yogurt.  Belle and Rapunzel finished first.  Then Rapunzel came and laid her head in my lap.  I asked her if she felt ok, and she said she was just tired, but I wasn't so sure.

Fast forward to after we get back home and I get them all into bed.  I sit down at the computer and the screen with the Orange Leaf ingredient list is still up.  I look at the ingredients again and see that the pineapple flavor contains ORANGE JUICE (Rapunzel is allergic to oranges).  I don't know how on earth I missed that.  I read every ingredient, but for some reason that must not have registered in my brain.

Luckily, she didn't seem to have any major ill-effects from it.  She didn't seem to feel great afterward, but it WAS getting late, and she'd gotten up early that morning.  So maybe she WAS just tired.  I'm just thankful that she didn't seem to react too bad to it.  We'll still be avoiding oranges until she's tested again.

But yeah, total Mommy Fail. :(

On a bright side, here are a couple funnies from the yogurt shop:

Me: Belle, what toppings did you get? 
Belle: I got a cherry, and a twig, and...
Me: a twig? 
B: yeah, this...
Me: that's a Twix 
B: but I just got one.
Me: it's not TWIGS. It's TWIX.  
B: oh, I always called it twigs.
 
Aurora: I'm done with this spoon.
Me: ok you can throw it in the trash.  
A: I licked it off, so I'm just gonna put it in that bucket (of new spoons)
Me: no, you used it, you have to put it in the trash.  
A: but look how clean it is!

Never a dull moment with these kiddos!

And... any other Big Bang Theory fans out there?

Magnezzzzzzzzium

So after my post about needing to find ways to get Rapunzel to sleep better, I had some friends suggest Magnesium supplements.  I read about them and decided to give it a try.  I ordered some (with added Calcium and Vitamin D) from Amazon and started it last week.  I noticed a huge difference in her sleep.  When I go in to check on her at night, she's asleep (and not scratching!!).  When I get her up in the morning, her bandages are still intact (instead of ripped to shreds).  When I ask her, "Did you sleep good last night?", instead of answering, "No, I was awake all night," she answers, "I don't know.  I don't remember."  Which to me, means that she slept!!!  She still wakes up during the night (she'll tell me she was awake at 4:12am or 6:27 am because she looks at the clock), but I'll take it!  Her skin has been in much better shape since she's been sleeping better.  Thank you to those who suggested the Magnesium!  It's been a huge blessing!

Friday Funny

Interview with Rapunzel, age 7

 How does having eczema make you feel?
It makes me feel itchy.  When I'm itchy I wish I didn't have eczema at all.

Are you itchy a lot?
Pretty much all the time, but not sometimes.  I'm always itchy at night though.

How else does having eczema make you feel?
It makes me feel sad.

What about it makes you feel sad?
I don't like hearing people talk about my eczema.

I think people might talk about it because they care about you and want to help.  What are some ways people have tried to help you?
By not eating corn in front of me.

Because you're allergic to corn?
Yes

 Do you miss eating some of the foods you're allergic to?
Yes

Are there still a lot of foods that you can eat that you're not allergic to?
Yes, I can still eat fish sticks, and sweet potatoes, and Subway!  And a lot of other stuff too.

Do you ever feel like you miss out on anything because you have eczema?
I miss out on having clear skin like everybody else does.

Did you know that over 30 million people have eczema?
{huge eyes} NO!

How does that make you feel?
It makes me feel better that other people have eczema too, that it's not just me.

Is there anything about having eczema that makes you happy?
I'm happy when it clears up sometimes!

Are there things you can still do even though you have eczema?
Yes!  I'm good at reading and piano even though I have eczema.

Itching For a Cure

We will be "virtually" taking part in the National Eczema Association's "Itching For a Cure" Eczema Walk!  The actual walk will take place on June 8 in New Jersey.  Even though we cannot attend in person, we still want to be a part of this walk!  So I've created the team, "Let's Not Be Rash" to help raise funds and awareness.  We'd be so thrilled if you'd join us by donating through our page to the National Eczema Association!

http://itchingforacure.itchingforacure.dojiggy.com/letsnotberash

Dairy Free Review

We are almost a month into our dairy-free adventure.  Unfortunately, we haven't noticed any improvement in Rapunzel's skin just yet.  But we're going to give it a full two months before giving up on it.

Rapunzel has had a chance to try many different dairy free options.  Some she's loved and others she could do without.  Here's a run down.


Chocolate Coconut Milk has hands down been her favorite to drink straight up.  She drinks it almost every morning with her breakfast.

Vanilla Oat Milk has been a close second.  This is what she prefers to pour over her cereal and she likes to drink it on its own too.

These were the only two that she liked the taste of by themselves.

As for baking and cooking, I've had equal amounts of success with hemp milk and rice milk.  I use original if I'm making something savory, and tend to use either original or vanilla if I'm baking something sweet.  And no one has complained about anything tasting any different.

Rapunzel has liked all of the Coconut Yogurt that she's tried.  She's tried several different flavors.

And she's found the Plain Greek Coconut Yogurt to be a great substitute for sour cream on her tacos, bean burritos, and baked potatoes.

She's tried the Coconut Ice Cream in cookie dough flavor, and loved it too.  In fact, I snuck a taste one day and really really liked it.

I've used the Enjoy Life chocolate chips in a few things, and they taste just like regular chocolate chips to all of us!

Rapunzel has been very happy with the Coconut Spread to replace butter on most things.  She likes it on toast, but not on bagels (she sticks with jelly for her bagels now).  I used it to make frosting and that was pretty good too (though definitely a different flavor than I'm used to).  I didn't use it for a butter sub in baking/cooking and instead opted to sub canola oil.

I found these little "cheese" sauce packets at HEB and thought I'd give them a try.  They had alfredo and cheddar flavors.  I tried the alfredo and served it with shrimp and pasta.  It was just ok.  It didn't really taste like alfredo, but it wasn't bad.  I'm planning on trying the cheddar this week and making mac n cheese.

We still never found a true cheese substitute.  But honestly, Rapunzel hasn't minded.  She just eats her sandwiches without cheese.  And we make her pizza without cheese.  Her bean burritos and tacos are cheeseless.  And we don't sprinkle parmesan on her pasta.  She hasn't really minded at all.

So, while I'm not sure if we'll continue dairy-free after our 2 month trial, I feel confident that if we do, we'll survive.  Once I did all the research and found these safe alternatives, it's been pretty easy to incorporate them into our menu.

Bedtime Blues

Rapunzel doesn't sleep well at night.  She barely sleeps at all.  I'll go in and check on her at different times during the night and she's almost always laying there awake, scratching.  And the times when I check on her and she's actually asleep, she's still scratching.  We've tried so many different things to try to help her sleep.  She's been on numerous different antihistamines and meds (otc and rx) and nothing has helped.  They don't help with the itch and they don't help her to sleep.  We've moved her to her own room, with a humidifier, air purifier, nightlight, and music.  We keep her room cool at night and keep her skin covered with bandages and long sleeve cotton pajamas.  We have a bedtime routine that includes reading and snuggles.  Some nights I leave her alone, hoping she'll be able to sleep without my distraction.  Some nights I lay in bed with her hoping that me being present will help her sleep.  I let her sleep in on days when we don't have anywhere to be.  I wake her up early on days we do have somewhere to be. Nothing seems to help.  I'm kind of at my wit's end here.  I'm open to any and all suggestions anyone may have on ways to help her sleep.

Snack Time: Banana Oatmeal Raisin Cookies

I found this super easy cookie recipe online the other day and tweaked it for our family.  The kids loved these cookies and thought they were getting a huge treat!

Banana Oatmeal Raisin Cookies

Ingredients:
3 ripened bananas, mashed
2 c. quick oats
1/3 c. applesauce (I used 1 GoGo Squeez)
1/4 c. hemp milk (or your milk of choice)
1/2 c. raisins
1 tsp. vanilla
1 tsp. cinnamon (we were out of cinnamon so I used pumpkin pie spice, YUM)

Combine all ingredients and scoop onto baking sheet.  350* for 15-20 min.

I served these as a snack with some fresh cut watermelon and cantaloupe chunks.

What's for Dinner Tonight? Beef & Broccoli

I had Beef and Broccoli on the menu for this week, but I couldn't find the recipe I'd originally looked up when it came time to cook it.  So I decided to just throw some stuff together and hope for the best.  I wasn't super impressed with the last recipe for Beef and Broccoli I'd tried, so I figured I couldn't do much worse.  I am not one to toot my own horn, but *toot toot*!  This was sooo good.  I didn't measure anything, so these are all approximate measurements.

Ingredients (in parentheses are the "normal" foods you can sub):
1 lb. flank steak or thin sirloin
1 c. beef broth
1/4 c. coconut aminos (soy sauce)
2 Tbsp. garlic
1 Tbsp. brown sugar
1 tsp. ground ginger
1 tsp. dried onion flakes
2 Tbsp. arrowroot powder (cornstarch)

Directions:
1.  Combine beef broth through onion and whisk together.
2.  Slice steak into 1/4" strips and let marinate in sauce mixture for at least 10 min. or up to an hour.
3.  Heat a skillet over med-high heat and drizzle with oil (I used olive oil).
4.  Cook steak in skillet until browned on both sides and cook through to desired doneness (reserve marinade)
5.  In a small saucepan, combine 2 Tbsp. of the reserved marinade sauce and the arrowroot powder.  Mix and cook until bubbly.
6.  Add the rest of the marinade and cook until desired thickness. (I'll admit that I got distracted and let mine thicken a little too much.  If this happens, just add a little extra beef broth)
7.  Toss the cooked steak and some steamed broccoli in the sauce and serve over steamed white (or brown) rice.

Next time I plan to double this recipe.  There was just not quite enough meat for the kids to have more than a couple pieces each.  I hadn't anticipated them asking for more!

 My kids are, well kids, and they tend to like their meals deconstructed.  So I served theirs like this...

Aurora's Turn

That moment when the nurses at the allergist office ask about your other kids by name when they see you...

Aurora got a turn at the allergist this morning.  She's been using the nebulizer for breathing treatments a lot lately and I just wanted to make sure we were doing everything we need to be to help manage her apparent asthma.

 She was such a big girl at the appointment!  Sometimes it's easier when they don't really know what's going on or why things are being done.  Eric stayed home for the morning with Rapunzel and Hercules and I brought Belle along to the appointment so that she could get her allergy injection while we were there.

 Belle's been pretty miserable from allergies lately.  The dr. actually took a look at her while she was there and we're going to add in Nasonex to her meds to try and get her nasal congestion under control.  The girl is so congested all the time and blows her nose a zillion times a day, which makes her head and ears hurt too.

The dr. listened to Aurora and said she was definitely a bit wheezy.  So first things first was a breathing treatment for her.

 

They tried to get her to take a peak flow measurement.  She tried, but I don't know many 3 year olds that can do that properly.  She definitely couldn't.  But it was a valiant effort nonetheless.

After her breathing treatment, it was time for allergy testing.  I was so super proud of my girl.  She teared up and "ow"ed, but was so strong and didn't complain too much about all the pricks.  Belle was a big helper and sat behind her fanning her back when she'd get itchy.

 

 She only reacted to Ragweed, which was good.  There's a definite possibility that more will show up the older she gets.  Belle and Rapunzel both tested similarly when they were younger, but they're obviously allergic to a ton more now.

Aurora was glad when it was over.  We decided to put her on a low dose of Pulmicort to help her get over this junk and to hopefully help keep it at bay.

She passed the time at the appointment by taking cell phone pictures of herself.  Here's a small sampling.

There's about 3 dozen more just like that on my phone.

Chicken Nuggets and Ketchup

I'd all but given up on finding frozen chicken nuggets that Rapunzel could have.  They're just chock full of her allergens.

Here is the ingredient list for Tyson Dinosaur Chicken Nuggets:
Chicken breast with rib meat, water, dried whole eggs, seasoning (salt, onion powder, modified corn starch, natural flavor), and sodium phosphates. BREADED WITH: Enriched unbleached wheat flour (enriched with niacin, ferrous sulfate, thiamine mononitrate, riboflavin, folic acid), water, dextrose, iodized salt, yellow corn flour, modified corn starch, dried whey, soy flour, sugar, spices, caramel color, garlic powder, methylcellulose, oleoresin paprika, spice extractive. Breading set in vegetable oil.

Corn, Corn, Corn, Milk, Soy... and not to mention the several corn derivatives and use of non-specific vegetable oil.

Then while shopping at Target (of all places) I found them.  There in the frozen food aisle, while light from heaven beamed down and a choir of angels began to sing, I found Perdue Simply Smart Chicken Nuggets!
Check out these ingredients!

And with the Simply Heinz Ketchup we've been using...

we've found quite the lunch pairing!

Today I served them with pita chips, carrots, hummus, and fruit cocktail (in 100% juice).

Maple Roasted Sweet Potatoes

Sweet potatoes might just be Rapunzel's favorite food ever.  Before her corn allergy was discovered, she could devour half a pan of "candied yams" in one sitting if I'd let her.  It's a Thanksgiving staple in this house and I had a heck of a time finding allergy-free marshmallows last year.  But I did.  And they were gross.  And expensive.  Since then, I've tried a few different sweet potato recipes that would be sweet enough to satisfy without marshmallows.  This one is a real winner.  And it's only 2 ingredients.  And she LOVES them.

MAPLE ROASTED SWEET POTATOES

Cut sweet potatoes into chunks and drizzle with 100% pure maple syrup.  Cover with foil.  Bake at 400* about an hour.  I like to slightly mash mine when they're done.  And feel free to drizzle a little extra syrup on top before serving.

 Tonight I served these with sauteed chicken breast and steamed green beans.

Aurora gave this meal 2 thumbs up!

An after dinner ammendment:  Rapunzel declared she didn't like these afterall.  I'm not even sure she took an actual bite and swallowed.  I've made these before and she's inhaled them.  She asked me, "do they have marshmallows on them" and I said, "no, these are the maple sweet potatoes I've made for you before, and you like them!".  But that was met with a grimace.  I think I may have fibbed to her last time and let her believe that the marshmallows were melted in.  Maybe from now on I shall melt one tiny marshmallow into a corner of the dish so that I can tell her, "yes, there is marshmallow melted in". 

Food Allergy Fun

What's for Dinner Tonight? BBQ BAKED POTATOES

I am a homeschooling mom of 4.  I live for EASY meals.  And tonight's dinner is about as easy as it can get.

BBQ BAKED POTATOES

Ingredients:
1 pork butt
1 bottle BBQ sauce (I used Trader Joe's Kansas City BBQ sauce)
Potatoes
olive oil
sea salt

Directions:
Throw that pork butt in the crock pot and pour that bottle off BBQ sauce over top.  I've found a few different bottled BBQ sauces that we can use, but you can obviously make your own as well.  Here is a great allergy-free BBQ sauce recipe.  I cook mine on low for 6-8 hours or on high for 3-4 hours (today I cooked it on high for about 4 hours).  When it's done, shred it with 2 forks and mix it in with the extra sauce and let it warm until ready to eat.

I bake my potatoes by smothering them in olive oil and sea salt, poking holes in them with a fork, and baking them at 350* for one hour.

What you add to your potato will depend on your own allergies/tastes.  Rapunzel eats hers with just the pork and a little Greek Coconut Plain Yogurt (it's a good sub for sour cream).  The rest of us might put some butter, sour cream, shredded cheese and/or chives on ours.  But they're good with just the meat and potatoes too!

Not Worth the Risk

"Is she REALLY allergic?"  I get that question a lot.  "What happens when she eats the food she's allergic to?"  I get that one too.  "Can't she just have a little?"  And if I had a dime for every time I've heard that one.

Being an allergy mom is not fun.  Coming up with meals that don't include our known allergens is tough.  Making sure my children have safe options when we're eating outside of our home can be challenging.  I don't do it for the thrills.  I don't do it to be "healthy".  I do it because I refuse to give my kids something that I know could kill them.

It's true, they could eat something they're allergic to and have no reaction.  They could eat something they're allergic to and have a little tummy ache or a small rash breakout.  Or, they could eat something they're allergic to and we could end up in the ER with them fighting for their lives.

(These pics are from Belle's reaction in May 2011)

The thing is, you NEVER know how they will react after eating something they're allergic to.  I'm sorry, but it's not worth the risk, EVER.

Belle had been allergy tested and showed no food allergies, and only a few slight seasonal allergies.  ONE macadamia nut cookie sent her into a severe allergic reaction that landed us in the ER getting her pumped full of epinephrine.  And she'd had macadamia nut cookies several times before!

After her reaction, we had her tested again and she tested positive for peanuts and tree nuts.  But she'd eaten them numerous times in the seven years before her reaction (hello, PBJs are a staple for most non-allergy families) with no ill-effects that we knew of.

Rapunzel has never had a severe reaction to food.  But that doesn't mean she won't if she eats something she's allergic to.  Belle hadn't had a reaction until the time that she did.  By the time I got her to the ER, she was covered in hives from head to toe, her eyes were swollen shut, and she was gasping for breath.  Scariest day of my life.  After what felt like hours, the dr. assured me that "she's responding well to the treatment."  You mean there was a chance that she wouldn't have responded well?  That thought hadn't even crossed my mind.  I am not being dramatic when I say that she could have died.  She could have not responded to the treatment.  We could have lost her, all because of a cookie.


Did you read about the teen boy that died after eating a cookie in the news?

Allergic reactions are serious business.  It doesn't matter that Rapunzel has never had a severe reaction to the foods she's tested positive for.  I'm not willing to take the chance that the next time she eats it will be the time she reacts.

It's not worth the risk, EVER.

I Spoke Too Soon

One step forward and two steps back.  I feel like that's how it always seems to go for Rapunzel.  Just when I thought we'd had so many good days, that surely we were getting somewhere, she has a flare today.  This is just the beginning of the flare and when she went to bed, she was scratching pretty heavily, so I fear for how her skin will look in the morning. :(

I can't even bring myself to post more than this one picture.  This was taken after her bath tonight.  You can see her face starting to break out.  Her face is always the last place (and mildest) to break out when she has a flare, so if you ever see a rash on her face, just assume it's even worse on the rest of her body.

The most frustrating part is that we just don't know WHAT is causing the flares.  She didn't eat anything out of the ordinary today - so is she reacting to a food she's not yet been tested for?  Is it something else entirely?  Our appointment with the Immunologist can't come soon enough.

I have a feeling it's gonna be another long night for my sweet girl.

Progress

Rapunzel's skin has an ebb and flow.  Some days are better than others.  She's been having some better days lately.  We're not sure what the reason is.  Is it from the steroid shot she was (without my knowledge) given during her oral surgery?  Is it from the absence of dairy in her diet?  Is it because we've been super vigilant about her skin care lately?  Is it the dead sea salt soaks we've incorporated into her regimen?  Is it the air purifier and humidifier we've added to her room?  Is it a combination of any/all of these things?  Probably.  We don't know exactly what is the cause of her improvement, but we'll take it!

Here you can see how her hands have improved over the last week.  The first pics in this series were taken on Tuesday, March 26.  The lighting in the bathroom is making the color a little off, but you can still see how red and swollen her hands were that day.  Lots of scratches and scabs especially on her left hand (top pic).  The 2nd pics were taken Thursday, March 28.  You can see that the scratches are starting to heal and the redness and swelling is really going down.  The 3rd pics were taken Friday, March 29.  The skin is still pretty dry and leathery, but the redness and scratches are all but gone.  The last pics were taken today, Wednesday, April 2.  The lighting was different than the third pics, but if you look closely, you can see that even the dryness has decreased.  There are however, a couple of spots that have popped up that are red and itchy.  Her left thumb was especially red and scratched up this afternoon, so we'll have to stay on top of that.

It's hard to not get our hopes up when she starts having good episodes like this.  I know she'll still get flares, but I always hope that the good days will start outnumbering the bad ones!

I also just want to make note that it's not just her hands that are flared.  That's just what I chose to take comparison pics of this time.

It's in the Bag

When Belle was diagnosed with her nut allergy in 2011, I had to start carrying an epi-pen for her.  I just carried it in the zippered pocket of my purse.  But then a couple of times I realized I'd left the house without my purse for whatever reason, or she'd been away from me (thus not having my purse with her), so I knew I needed to come up with a better solution.  So I bought a small zippered pouch that held the epi-pen and I'd move it from bag to bag or send it with her if she was going to be away from me.  Then when Rapunzel was diagnosed with her food allergies last year, I started carrying 2 epi-pens.  And not long after that I started adding things here and there until I finally bought a bigger bag and started calling it our Allergy Bag.

Here is our current Allergy Bag

It's so full that it won't close all the way (but everything is zipped in).

See...

In our Allergy Bag, I carry:

1 Epi-Pen

1 Epi-Pen Jr.

1 Aerochamber

1 Xopenex inhaler

Benadryl Melts

Lactaid Tablets (which we don't need right now since we're trying Dairy Free, but Rapunzel is also lactose intolerant)

Calm Drops

Yummy Earth lollipops

Mio Water Enhancers

Lemonade mix packets

I carry the meds for obvious reasons.  The Calm Drops are very helpful for Rapunzel's anxiety.  They are homeopathic, so I feel comfortable giving them to her.  And they really do help.  They don't take away her anxiety completely, but they definitely take the edge off of it, so that she can function if she's anxious about something.  I carry the lollipops for when we're somewhere that has candy that Rapunzel can't have.  Like the dr's office or the kids' hair salon.  I carry the drink enhancers so that I can add them to her water when we go out to eat, so that she can have a "fun" drink too.

The bag is just a zippered make-up bag I bought from Charming Charlie.

On top of the Allergy Bag that I carry in my purse, both of the girls each have their own mini allergy bag.

Belle's has an epi-pen, Benadryl melts, and a Xopenex inhaler.  Rapunzel's has an epi-pen Jr. and Benadryl melts.  They take these with them anytime they will be away from me.

I bought these personalized bags from Thirty-One Gifts.