Planning for Easter

Holidays are full of fun traditions.  Bags full of candy at Halloween.  Turkey dinners at Thanksgiving.  Stockings and cookies at Christmas.  Baskets with eggs full of candy at Easter.  Do you see a theme here?  Food.  Every holiday seems to revolve around food.  Now don't get me wrong, I'm not really complaining about that.  Some of my fondest memories as a kid revolve around food.  I remember helping my mom roll out dough for chicken n dumplins.  I remember hunting for Easter eggs at my grandparents', that were usually chock full of sugary goodness.  I remember helping my niece make and decorate sugar cookies when I babysat her.  But, when you have a child with food allergies, it can definitely make holidays a little more challenging.

I've never been one to stuff the kids' Easter baskets full of candy, even before food allergies.  I usually fill them with books, movies, toys, or clothes.  But I do always include a chocolate bunny, and some other small candies.  This year I was still able to do that.

I actually bought all their Easter candy before we decided to go dairy-free for Rapunzel.  I had planned on filling some empty Easter eggs with jellybeans from Whole Foods, and chocolate covered sunflower seeds.

I can still use the jellybeans, but the sunflower seeds are going to be replaced with Yummy Earth gummy bears.

And I'd originally bought each of them a milk chocolate bunny.  Rapunzel's is being replaced with a dark chocolate bunny (which is dairy-free).

Another fun tradition we have at Easter is dying Easter eggs, of course!  My kids LOVE deviled eggs, so we usually use our colored eggs to make some the day after Easter.  So this year I set out to find a natural egg dye kit that didn't contain corn.  I had a gift certificate to Natural Candy Store, and I found this natural egg dye kit.  I'm planning on having the kids use it this weekend, so I'll let you know how it goes.

And then of course there is the Easter dress.  Since switching Rapunzel to 100% cotton, she's been much more comfortable.  So I was determined to find her an Easter worthy soft cotton dress.  It took some shopping around (no complaints here!) and label reading (I sure read a lot of labels), but I was actually able to find several options!

Option 1 is a green dress from The Children's Place

 Option 2 is a yellow dress from Target

And option 3 is a pink dress from Crazy 8

I bought all three, because they're all perfect for Sunday church anyway.  Which one did Rapunzel choose to wear for Easter?  I guess you'll have to come back after Easter to find out!

And the best part of Easter, which food allergies and eczema have absolutely no bearing on, is that we get to celebrate the fact that we are saved by our Lord Jesus Christ.  He paid the ultimate price for our sin by dying on the cross.  I am daily grateful for His unending love and grace.

Speaking of Parties

Not long after Rapunzel was diagnosed with her food allergies, we were invited to a birthday party.  We got there and I realized that she couldn't have the cake.  And she couldn't have the candy.  And I was not prepared.  I was so new to this allergy thing and it honestly never dawned on me to bring her her own cupcake or safe candy for the party.  She had an awful time at that party and spent most of it curled up in a ball in the corner crying.  :(

Since then, I've made sure to be prepared for parties!!  I find out if there's going to be food served at the party and try to take something equivalent for Rapunzel to eat.  I always bake cupcakes so that she can take one to enjoy.  And I keep a stash of safe lollipops in my "allergy bag" in my purse (I'll blog about what that is sometime) at all times (because you'd be surprised how many places candy shows up when you least expect it!).  Good to go!

We attended a birthday party today and I was prepared!  There would be pizza served, so I brought pizza that Rapunzel could eat.  From Pizza Hut she can eat a thin crust pizza w/ regular sauce and ham, no cheese.  So I ordered one and had it delivered to our house before we left for the party.  I put 2 slices in a reusable food bag to bring.

And of course there would be cake!  So I made cupcakes last night that Rapunzel could have.  A baker I am not, so I was very happy when the box of Red Velvet cake mix in my pantry (leftover from Aurora's birthday last month) was dairy free!  So I made those.  Then I made Allergy Free "Cream Cheese" Icing.  The only adjustment I made to the recipe was that instead of 1 c. of Earth Balance Soy Free, I used 1/2 c. Earth Balance Coconut Spread and 1/2 c. shortening.

They turned out great!  The icing had a definite coconut flavor to me, but Eric said he barely noticed it.  I think because I knew it was in there, I tasted it more, if that makes any sense.  I let all the kids try one last night and they all gave it a thumbs up!

There were goody bags at the party, filled with candy and toys.  Rapunzel is used to this and didn't bat an eye at dumping the candy into my purse to trade out for her own safe candy.  She was really excited that there were still non-candy items in the goody bags that she could enjoy!

This was a bowling party and Rapunzel had only been bowling one other time, so she was really excited to get to do it again.  She took it very seriously at first.

But once she found the "purple ball", she was all smiles!

The above pics are a good example of the balance we must find in keeping her covered (in the top pic w/ her sweater on) to prevent her from scratching, and keeping her cool so she doesn't get overheated (in the bottom pic w/ her sweater off because she was starting to get hot).

Rapunzel still deals with a certain level of anxiety at parties.  She gets a little overwhelmed in groups where she doesn't know everyone well.  And even though she's still eating pizza and cake like everyone else, it's not THAT pizza or THAT cake.  But all in all I'd say she had a good time at the party with her friends!

And now we've got nearly 2 dozen cupcakes to eat over the next few days.  I think that's her favorite part of birthday parties.

Let's Get This {Dairy-Free} Party Started

I've decided to go ahead and start the Dairy Free diet for Rapunzel.  I was going to wait until next week because I'd already planned and bought for our menu this week.  But since I'd already bought the dairy alternatives, I decided that I'd make the changes I could to this week's menu and see if we could go ahead and get started.  So far so good!

I made the decision before lunch yesterday.  So I was able to make lunch and dinner dairy-free.  For lunch the kids had Trader Joe's fish sticks, sweet potato fries, and a banana.  For dinner, I had planned on making Taco Meatloaf (with panko instead of corn chips - but I bet it's so good with corn chips!) and rice.  So I just left the cheese out of the meatloaf, and voila!  Dairy free dinner!

This morning Rapunzel chose some toasted (dairy free) Cinnamon Raisin bread from Sprouts, with Earth Balance coconut spread, and chocolate coconut milk for breakfast.  They were all winners!  She said that the coconut spread tasted just like butter.  I tasted it, and it definitely had a coconut flavor to me, but was really good.  She also LOVED the chocolate coconut milk.  She guzzled it down before her bread was even finished toasting!

She also tried the chocolate coconut yogurt with her morning probiotic and loved it too.  I let all the kids try it.  Belle didn't like it, but she's not a big yogurt fan anyway.  She's really picky about yogurt and there's only been a couple of brands/flavors that she's ever liked.  Hercules and Aurora loved it too though!  I haven't found a yogurt I've ever liked, so I passed on trying it.  I might give it whirl at some point though.

For lunch today I'll be serving chicken sandwiches, chips, strawberries and grapes - all dairy free!  Dinner will be corned beef hash, fried eggs, and fresh fruit.  No dairy there!

I think we can do this!

Weekend Getaway

My sister-in-law is getting married and her bridal shower was this weekend in Houston.  We decided to make a short trip of it.  We usually stay with family, but the last couple of times we did, Belle had trouble with her asthma (because as it turns out, she is allergic to cats and dogs).  And with Rapunzel's very strict skin care routine, it would just be easier to stay in a hotel.  But, we decided this on Wednesday and would be leaving Friday, so I had a lot of work to do!  It's always a lot of work to pack a family of 6, even if just for the weekend.

We recently bought a rolling 3-drawer cart to keep all of Rapunzel's skin care items in the bathroom.  So instead of trying to guess how much of everything we'd need, I just brought the whole cart.  There's a drawer for all of her ointments and moisturizers.  A drawer for her colored wraps.  And a drawer for her bandages.  I also keep a basket with all of the kids medicines on the kitchen counter, so I threw that into one of the drawers.  That made packing a lot easier.

The kids did great on the drive there.  It's nice that Aurora is finally at an age that she does well on roadtrips!

(I'm not sure what face Rapunzel is making here...)

The kids were so excited to get there because I booked a hotel with an indoor pool so that they could go swimming.  They were all SO excited about it. Pools are actually supposed to be really good for eczema, as long as you moisturize the skin immediately after getting out

So as soon as we got to the hotel, the kids changed into their bathing suits and we headed down to the pool.  Only problem:  it was FREEZING cold.  I don't know why I assumed that an indoor pool would be heated, but it wasn't.  Belle, Hercules and I braved the cold water and got in.  Rapunzel and Aurora were having none of it.  I only lasted a few minutes before I decided to give the hot tub a try instead.  It wasn't even really that hot, so I thought Rapunzel might like that, but she was not interested.  After about half an hour, I decided to take her back up to the room and let her soak in the bath and then get her wrapped and in her pajamas.  She much preferred that.  I was really hoping she'd have a good time in the pool.  She'd really been looking forward to it and I knew it'd be good for her skin.

The next day, the kids got to play with their cousins while I went to the shower.  Eric took them to the park and Rapunzel ended up hurting her hands there by digging in a pile of rocks.  :(  She was just not having a good time on this trip.  We got home really late Saturday night, and got up early to go to church on Sunday.   I think Rapunzel was happy to be back to her usual routine (and wearing her green for St. Patrick's Day)!

The Dentist

All four kids had their dental check-ups this past week.  I dread this appt. every 6 months.  It's a lot of work to take 4 kids to the dentist.  It's even harder when one of them has extreme anxiety.  Of course, that would be Rapunzel.  Her overall anxiety has actually gotten MUCH better (which I attribute to her being off of steroids).  But she still has some pretty good anxiety when it comes to the dentist.  She had yet to allow them to take x-rays of her.  She would panic and completely freak out, and they'd say, "We can just try to get them next time."  But this time, Rapunzel did SO GOOD during the x-rays.  She sat still, opened and closed her mouth when asked, and even though she started to gag a little during one part, she was a trooper and got all of her x-rays done beautifully!  I was soooo proud of her!  When it was her turn to get in the exam chair and get her teeth cleaned, she lost it.  The moment her head hit the headrest, she jumped up screaming and crying.  I don't know what happened.  She'd done so good.  But she was NOT having any of this anymore.  The dentist came over and tried talking to her, but she was over it.  Once her switch is flipped, there's no reasoning with her.  They agreed to skip the exam, again.  But, the dentist had to go over her x-rays with me.  She has a cavity. :(  That's the first cavity of any of my kids.  And it's a big one.  It's on one of her molars, and it's very close to the nerve.  The dentist said she was surprised that the tooth wasn't bothering Rapunzel, but that it most likely would soon if left alone.  Who knows how long she's had it since this was the first time she'd had an x-ray and has never let the dentist look into her mouth.  So she needs a "mini root canal" and a crown on the tooth, since she won't lose it for several more years.  She'll obviously have to be knocked out for them to do it, since she won't even let anyone come near her mouth otherwise.  So we now have an appt. in 2 weeks to get that done.  I'm a little nervous about it.  The last time she went under anesthesia was when she had an endoscopy, and that was torture for my mama heart.  Watching her fight, screaming and crying for me as they put her under was one of the hardest things I've ever witnessed.  I have a feeling that this will be a similar experience.  But I'm prepared to give her tons of tlc, hugs, and snuggles that day!

We Need an Answer

Rapunzel is having a rough go of it this week.  We were *SO* convinced that her allergy shots were causing her extreme skin flares.  It just so happened that once she got to her maintenance dose, her skin would flare really bad the day she got her shot, and it would take a couple days to get it to quiet down.  Then the next week, it'd flare again the day of her shot.  Well, after talking to her allergist last week, we decided to take a few weeks off from the allergy shots to see how her skin reacted.  It's been 2 weeks since her last shot and her skin is still in really bad shape.  I do believe that the allergy shots weren't helping at all, since she did flare when she got them (though the hope is that after a few more months of building up, they'd actually start helping), but they obviously weren't the only thing causing the flares.

Rapunzel and Hercules have been sharing a room for awhile now.  But lately, Rapunzel has been complaining that Hercules keeps her up at night.  We're not 100% sure of this (since when we go to check on them at night, most of the time he's already asleep when she's not), but to see if it would help, we moved Hercules into Aurora's room the past few nights.  Rapunzel also has a high quality air purifier and humidifier in her room that we've borrowed from some friends.  And on top of that, we set up the iPad to play music in her room all night to help her relax and hopefully sleep better (and scratch less).  She also takes a rx sedative to help her sleep.

We even decided to not wrap her arms and legs last night.  She was still scratching through the bandages in parts, but her back and neck were untouched.  So I thought that maybe the wraps were somehow causing more itching.

But this morning, Rapunzel's skin was just shredded.  Her hands, arms, shoulders, ankles, calves, knees, thighs, and back were just covered in blood.  She'd really done a number on her skin last night.  After applying rx antibiotic ointment and emollient, I wrapped her again to help her skin heal.

She just came to me and asked if I could unwrap her hands so that she could practice piano.  This is what they looked like.

I'm just at a loss.  I don't know what all is causing the flares.  I don't know how to keep her from scratching at night.  I feel like we are in a constant cycle of trying (and failing) to prevent infection, then treating infection, then starting the cycle over again.  The only time her skin is really clear is when she's on prednisolone and she can't take that all the time!  That is not an answer.  We need an answer!

Rapunzel's follow-up

Yesterday's allergist appt. was a double appt. for Belle and Rapunzel.  Rapunzel was having a follow-up from the appt. she had 2 weeks ago for her skin infection.  The antibiotics and prednisolone definitely helped to clear up her infection!  We were able to talk to the allergist about concerns we had, things we wanted to do differently, and ask questions about things we weren't sure on.  One thing in particular we had a question about was the allergy shots.  Were they helping or making things worse?  We were told not to expect to see results for 6-12 months.  And we were told things might get worse before they got better.  And we were told that there is no guarantee that they will even work for her eczema at all.  There is a very high rate of success when used for respiratory or nasal symptoms, but it's still very sketchy whether or not they are effective for eczema.  And I think a big reason for that is because it's not JUST environmental allergies that cause eczema flares.  It starts with a skin barrier deficiency, which allows bacteria and irritants into the skin, which cause the flares.  So even if the allergy shots help to prevent the body from reacting to those allergens, her eczema could still flare from bacteria or other irritants.  But we were desperate for an answer and decided to try the shots and see if they'd work to help her at all.  The shots work by slowing increasing the amount of allergen injected into the body, in hopes that the body will start accepting it and not reacting against it.  After several weeks, you get to your maintenance dose, where you receive the same amount of allergen each week.  Once Rapunzel reached her maintenance dose, we started noticing that the she'd get a bad flare each week when she got her shot.  We mentioned this to the allergist yesterday, but he was still not convinced that it was the shots causing her to flare, or if she would still be flaring on her own without the shots.  Also, when she had her bloodwork done a couple weeks ago, we were concerned when her eosinophils were so high.  She was just at the cusp of a big eczema flare and serious skin infection when she had the bloodwork done.  Was that why it was so high?  Or had it been getting higher and higher as she's continued to get the allergy shots?  Eric suggested to the allergist that we do regular bloodwork on her to see how her eosinphils compared when she wasn't having a flare and not taking the allergy shots.  He said that's not something he normally does, but that he definitely saw the logic behind it, and thought it was a really good idea to help us get a better picture of how she's reacting and to see if the shots were in fact making things better or worse.  So we're stopping the shots for 3 weeks.  I took her this afternoon to get bloodwork done again.  Then we'll get another set of bloodwork done in 3 weeks and then see the dr. again to go over everything.  I'm very interested to see how her numbers look compared to the last set.  I will say that it was like a breath of fresh air to have the dr. spend time discussing things with us and actually listening to our thoughts and ideas.

And here's a shout-out to our church's Kids Day Out drop-in program!  For a small fee, I was able to send Hercules and Aurora to our church for the day!  They had a great time with their friends, and we were able to have important discussion with the dr. without distraction!

A Family Affair

Unfortunately, Rapunzel is not the only one in our family to suffer from allergies.  Eric has some pretty severe environmental allergies.  Here is his skin prick test from back in October.

He doesn't have a ton of them, but the ones he has are high.  And he was sooo miserable from them, even on different antihistamines.  Finally in the fall, he decided to start allergy shots and they've helped him so much.  He's noticed a huge difference since starting them.

I've never been allergy tested, but I know that I have environmental allergies.  I just don't know to what exactly.  Ever since moving to San Antonio (aka the allergen cesspool), I've taken Zyrtec everyday and it works great for me.  If I miss a couple days (which has happened just a few times), my allergies end up flaring so bad that I will end up with a severe sinus infection, ear infection, the works from all the build up!  No fun!  But as long as I take my Zyrtec like a good little girl, I'm no worse for the wear most days.

Belle, our oldest daughter, was tested for allergies a few years ago, and while I don't remember exactly what she was allergic to, I do remember that it was nothing significant.  She had a few slight allergies, but nothing to write home about.  She started taking Zyrtec daily as well, and has seemed to do great until just recently.  I noticed that over the past several weeks her asthma has started to act up.  Anytime she'd come in from playing outside or going to soccer practice, she'd be wheezing.  She was taking breathing treatments everynight.  So I knew it was time to get her in to see the allergist and see what we could do to better manage her asthma.  She had to be off of all antihistamines for 3 days prior to the appointment so that they could do allergy testing.  Wow, these past 3 days were miserable for Belle!  Because she's been taking the Zyrtec for so long (and because I'm a good little Mommy, she's not missed a single day), we didn't realize her allergies had gotten so bad.  Each day off the meds, she got progressively worse.  By last night, her throat, eyes, ears, and nose were so itchy that she was writhing on the couch in pain and frustration.  I was *this close* to calling off the test and giving the girl a Benadryl for goodness sake!  Instead, I told her to go take a shower and call it an early night.  That helped and we were able to get through the night and to the appointment this morning.  She was anxious about the test, but was such a trooper.  After seeing how miserable she was the past few days, I was expecting some reactions for sure.  I was not expecting such severe reactions to literally EVERY SINGLE tree, grass, and weed that she was tested for.  She tested either moderately allergic or highly allergic to EVERY tree, grass, and weed on the list.  Plus, she's highly allergic to cats and moderately allergic to dogs.

We decided that it was a no brainer to start her on allergy shots as well.  We're still on the fence as to whether or not they're helping Rapunzel (I'll blog about her follow-up appt. tomorrow) with her eczema.  But there's no doubt they've helped Eric, and we believe they'll help Belle too.  They should also help with her asthma, which will be great.  In the meantime, she's going to go on a maintenance inhaler through the winter (which is when her asthma tends to flare) and until she gets to a maintenance dose on her allergy shots.  We also got her a new rescue inhaler, a refill on the nebulizer solution for breathing treatments, and 4 new epi-pens (for her severe nut allergy).

Since it was a double appt. for both girls, we were there for quite awhile.  The girls were trying to find things to do to pass the time.  They spotted this Fire Alarm on the wall:

And decided to recreate the picture.

 Belle is the man running away and Rapunzel is the fire.  Get it?  These girls sure are characters.  I don't know why I found this so funny, but it had me in stitches!

This is where the journey begins

For the purposes of this blog, my name is Ariel.  My husband Eric and I have been married for 11 1/2 years and have 4 children.  Belle is 9, Rapunzel is 7, Hercules is 4, and Aurora is 3.  And no, those aren't their real names either.  We're not THAT cooky. ;)  I am starting this blog to track the journey we're on with our daughter Rapunzel and her allergies and severe eczema.

At 4 mos old, Rapunzel was diagnosed with eczema by her pediatrician.  It was mild.  Nothing a little Eucerin cream couldn't handle.  In March 2009, when Rapunzel was 3 years old, we moved from Houston, TX to San Antonio, TX and it didn't take long for her skin to take a turn for the worse.  In May of 2009, we had an allergy skin test performed, but nothing came up positive.  For 3 years we went back and forth between her pediatrician and dermatologist trying to "fix" her eczema.  We tried all sorts of different creams, oils, ointments, cortisone creams, antihistamines, and other meds.  She'd get better, but then get worse again.  It seemed like a never ending battle that just kept getting worse and worse.  Finally in the spring of 2012, I followed my gut and took her to a different allergist and had her allergy skin tested again.  WOW.  She was allergic to so much!  She had 5 food allergies (peanut, soy, corn, peas, and oranges).  She had a huge amount of environmental allergies.  Many many different kinds of trees, grasses, and weeds.  Most were severe.  We removed all of the foods from her diet, which was extremely overwhelming at first.  You won't believe the amount of things that contain corn or soy until you have to start reading labels.  After removing the foods, we noticed a huge improvement in her overall health.  She wasn't "feeling bad" all the time anymore.  She was able to get up and play and not feel sick like she had been.  This was great news!!  Unfortunately, it didn't help her skin at all.  After 6 more months of going back and forth between the pediatrician, dermatologist, and now the allergist to try to control her uncontrollable eczema, we started allergy injections in October 2012.  She went twice a week for 2 months, and now goes once a week.  After 2 mos, her eczema was the worst I'd ever seen it.  After 4 mos, it was even worse than that.  I felt hopeless.  Every time we took her back into the dr, we were told the same thing: "You're doing everything right.  You're doing everything you're supposed to be doing."  That is not much consolation when your daughter is still suffering.  A couple weeks ago, I took Rapunzel back into the pediatrician, because she was overly fatigued, not eating or sleeping well, not able to focus, and just all around not doing well.  She ran a bunch of labwork on her and everything looked great except for one thing.  Her eosinophils were at 21%.  Eosinophils are a type of white blood cell that is elevated when your body is fighting against an allergy.  Normal range is below 4%.  So Rapunzel's were VERY elevated.  Her body was working VERY hard to fight against her allergies.  That is why she was feeling so bad.  Her skin was also starting to get very torn up from her scratching so much.  Her itch is intense.  We decided to see the allergist the following week to see if they recommended we continue the allergy injections for her or not.  By the time we got in to see them, her skin was so infected.  She was starting to run a fever and it was just not good.  They put her on antibiotic and prednisolone to get the infection under control and changed up her antihistamines again to try to help control the itch.  That's basically where we are right now.  We are waiting for the referral to go through so that we can make an appt. with an Immunologist at Texas Children's next.  I will be chronicling our journey here.  How she's doing day to day and any new treatments/plans we begin.

As of today, this is our regimen:
antibiotic - twice a day
prednisolone - once a day
Zyrtec - twice a day
Pepcid - twice a day
probiotic - once a day
multivitamin - once a day
fiber supplement - once a day
fish oil supplement - once a day
soak in cool bath followed by either Coconut Oil or Vaniply ointment - twice a day
Mupirocen on any open wounds
Bleach baths - 3 times a week

We continue to avoid all known food allergens and strictly limit time spent outdoors.  She wears long sleeves, pants, and over the knee socks as often as possible.  We recently got her hair cut very short to keep it off of her neck and out of her face.

On a positive note, when she has good days, they are SO GOOD.  She can light up a room with her smile.  She is so smart and creative.  She LOVES to read.  She enjoys playing the piano and hanging out with friends.  She is a cuddle bug and in fact, is curled up right against me on the couch as I type this.  I love this girl so much that it hurts sometimes.  I hate seeing her in pain and miserable.  And I'm not settling for anything short of an answer that helps her!