I didn't take many pictures today. The kids opened their Easter baskets when they woke up. Then we got ready and went to church. We went to lunch afterward and then I took this picture of the kids with my mom on my phone.
When we got home the kids ate some of their Easter candy (ok, probably all of it) and we've just been hanging out.
Here's Rapunzel chowing down on her dark chocolate bunny. Can you tell she liked it?
I hope everyone has had a blessed day. I am so thankful thinking about what Easter means to me.
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.
Today was the day for Rapunzel's dental surgery. What a long morning. She couldn't have anything to eat or drink after midnight last night because she'd be going under general anesthesia. The first thing she said when she woke up was, "I'm hungry". Not a good way to start the day. We got to the hospital around 8:45am. We got all signed in and went to the waiting room. They had a children's area with a tv and some toys. Rapunzel was pretty anxious, so she just sat in my lap and watched tv for awhile. By 10:00, she moved on to the iPad. At 11:00, I finally went to the front desk to see how much longer it might be until they called her back. Finally at about 11:15, they took us to pre-op. That's when the nerves set in again for Rapunzel. We got her changed into the hospital gown and settled into her bed (where I laid beside her).
They went over all of her allergies and made her a nice red allergy alert bracelet to wear with her hospital id bracelet.
Then they brought in some Vercet for her to take to calm her nerves. It helped a little and she was able to relax some. The anesthesiologist came in and talked with me. He told Rapunzel that he had some yummy bubble gum air for her to breathe (which she could not have cared less about). A few minutes later they wheeled her back to the OR and I was sent to the waiting room.
That was a long half hour or so. I was confident that the procedure itself would go fine. I was just a little worried about how she would handle it all emotionally. The dr. came out and said that everything went fine. The tooth with the deep cavity that we were getting fixed ended up not being as bad as it looked on the xrays (this was the first time she'd looked in Rapunzel's mouth because she'd always get too anxious at appts). So instead of a root canal and crown like we thought, she was able to just fill it and put a silver cap on it. Rapunzel also had a few other small cavities that the dr. went ahead and filled. She also put sealants on her two adult molars. I'm glad that she went ahead and took care of all of that while Rapunzel was under anesthesia anyway.
She also mentioned that it took several tries to get her IV in, so her arms were a little banged up. Plus, her skin started to flare considerably during the procedure, so the anesthesiologist gave her some steroid for that. I was not happy about that, but what's done is done.
By the time they brought me back to see Rapunzel, she was starting to wake up and was very upset. She was screaming and crying, but wouldn't open her eyes. She kept clawing at her face and left a few scratches because of it (I'd brought socks to put over her hands, but couldn't because of the IV). It took a few minutes, but I was able to calm her down enough for her to realize I was in there. She just kept yelling that she wanted to go home. So I think the nurse was trying to speed up the process a little. I helped her get dressed (which was a challenge because for some reason she kept trying to stand up on the hospital bed), and then they brought her a sugar free popsicle. I checked the ingredients and they were good to go. I was so glad they had some! I had planned to bring one of our own fruit pops for her, since most popsicles contain corn syrup, but forgot! I remembered when we were halfway to the hospital, and didn't want to turn around for fear of being late (not that it would have mattered since we waited for 2 hours to even go to pre-op!). Poor Rapunzel was still so loopy that she couldn't quite get the popsicle to her mouth on her own and ended up poking herself in the face with it. But she didn't want me to help her either. So by the time we left, she had several red sticky polka dots all over her face! lol
When it was finally time for her to be discharged, Rapunzel didn't want me to leave her side. We'd gotten her into a wheelchair and I was going to go get the car and bring it around, but when I tried to walk away, she kept trying to get up out of the wheelchair. So instead, they wheeled her down to the entrance, while I held her hand, and then I carried her (all 49 pounds of her) to the parking garage, up the elevator, and around the corner to our car. I got her all buckled in and we headed for home. I stopped at Chick-Fil-A first to get her some grilled chicken, applesauce and lemonade (and lunch for myself, it was 1:30pm by now and I was getting hungry!).
When we got home, I realized that CFA had given us regular nuggets instead of grilled nuggets (which Rapunzel can't have right now, because they have a milk wash on them). Luckily I had some precooked grilled chicken in the freezer that I was able to nuke for her. I also made her some white rice and she ate some of that as well.
She's spent the rest of the afternoon laying on the couch, watching some tv and playing on her LeapPad. Just taking it easy. She seems to feel pretty back to normal now, which is great. I'm about to go make dinner and then spend some time snuggling with my girl!
About 20% of people have the bacteria Staphylococcus aureus(aka Staph) colonized on their skin at any given time. However, staph is colonized on about 90% of people with eczema. After a few bouts of staph infections, Rapunzel's dr. had us introduce bleach baths into her skincare regimen. We started by just doing one every couple of weeks. She kept getting staph infections, usually in the form of folliculitis. Then we moved to once a week. Staph infections kept on coming. Even at twice a week, she was still getting them, though they were much more spread out. After her severe infection in February, her allergist had us increase them to three times a week. She hasn't had an infection since then. That's not to say she won't get another, but I'm happy to have the results we've gotten so far.
When we prepare her bleach bath, we simply add 1/2 c. Clorox Regular Bleach to a full tub of water. She soaks for 5-10 minutes. Then we drain the water and she rinses off in the shower. After that we continue her usual skincare of moisturizing and wrapping.
I feel like there have been times when I've mentioned bleach baths and people are horrified that I would do that to my daughter. But it's not like I'm bathing her in straight bleach. It's very diluted and actually quite similar to a public chlorinated swimming pool. It's true that too much bleach can actually be drying to the skin, so it's not recommended to do them this often, unless there has been recurrent infections.
Other than an occasional drive-thru lunch during the week, we don't eat out very much. We do eat out every Sunday after church with friends, but other than that, you probably won't find us filling up a booth anywhere during the week.
Eating out with food allergies can be tricky. Some restaurants will give "allergy information", which basically just means they'll list the allergens found in their foods, but it's usually only the Top 8 (wheat, dairy, soy, peanuts, tree nuts, fish, shellfish, and eggs). This can be very helpful if you are allergic to dairy. Or if you're avoiding gluten, for example. But Rapunzel is allergic to things that are not in the Top 8. So in order for her to eat at a restaurant, I have to be able to look up actual ingredient lists. I've called restaurants before to try and find out what ingredients are in certain dishes, and some places have been accommodating, but at most places it is difficult to get a straight answer.
There are a handful of places that Rapunzel can eat at (but only certain things on the menu) - Chick-Fil-A, Subway, Jason's Deli, and Pizza Hut are a few.
Most of the time on Sundays, I will pack a lunch for Rapunzel to take into the restaurant we eat at, so that she has something safe to eat. Or sometimes we will run by Subway on our way to the restaurant, to get her a sandwich she can eat (She gets Italian bread with bacon, pickles, and mayo - yuck! But she loves it!). I haven't had a problem yet taking our own food into a restaurant. We tend to go to family-friendly, laid back places because we usually go with a few other families, and there's always a ton of kids. I've explained on my own a couple of times that she has her own food because she has food allergies, but I've never even had anyone say anything to me before.
Most of the time, it doesn't bother Rapunzel that she's eating different food than everyone else. She knows that when she eats the things she's allergic to, she doesn't feel good. So she's usually happy to eat her leftover pizza or hot dog or sandwich.
I also keep some Mio in my allergy bag so that I can flavor Rapunzel's water. She can't have most fountain drinks because they contain corn syrup. There are a few she can have, like Sierra Mist Natural, and Jason's Deli has a blueberry pomegranite drink that is sweetened with cane sugar). At home, all the kids drink milk or juice for breakfast and then water the rest of the day. So it's nice for her to be able to have a "fun drink" like her friends when we eat out.
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.
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!
So, we're trying dairy-free. Which means, I need to find some dairy replacements. Here are some things I've found for us to try.
There are many different milk alternatives out there. We can't have anything with nuts or soy, so that does narrow the field a little.
Most (if not all) of these milks come in Original, Vanilla, and Chocolate flavors. I bought a variety of these different milks. Some are better sources of protein. Some are higher in sodium. Some have more vitamins and minerals. So I thought it a good idea to keep a variety for use in different ways. Rapunzel may prefer the flavor of one over another for drinking straight up. One may be better for using in sauces, while another may be better suited for baking.
Rapunzel loves yogurt, and we love it for its good bacteria. Rapunzel, Hercules and Aurora all take probiotics everyday. I buy Culturelle in the capsules. Every morning I open 1 capsule and pour its contents onto 3 bites of yogurt for them to eat. They love their "yogurt bites" every morning! So I knew I had to find a dairy free alternative.
Cultured Coconut Milk
The So Delicious brand has several flavors. Trader Joe's also has a couple flavors in their brand.
Our girl LOVES sour cream. She puts it on a ton of stuff. And while I didn't find a true sour cream replacement, I think I found something that will work.
Plain Greek Cultured Coconut Milk
I've seen a lot of recipes that say you can use greek yogurt in place of sour cream, so I thought this was worth a shot. We'll see if she bites.
You can't forget this childhood staple. We don't eat ice cream everyday, but we do love it on occasion and I knew I had to find an alternative for Rapunzel!
Rice Milk Frozen Dessert
Coconut Milk Frozen Dessert
Rice Dream and So Delicious brands both come in several different flavors, so Rapunzel shouldn't feel deprived at all! I also think that if we do end up staying dairy free, it would be a good idea to get our own ice cream maker, so that we can make our own ice creams with different milks!
I love chocolate chips, because by adding just a few, the kids think whatever they're eating is a huge treat!
Dairy-free chocolate mini-chips
Butter is another tricky one for us because of Rapunzel's other food allergies. Earth Balance has quite a variety of butter replacements, but they contain either soy or pea-protein, which she is allergic to. But there was one that she could have that was made from, none other than, Coconut!
You may have noticed that I didn't list a cheese alternative. There are plenty of them out there, but I haven't been able to find one that doesn't contain something Rapunzel is allergic to. All of the ones I've found contain either soy, nuts, pea, or - get this - casein. Yes, there are brands of "rice cheese" out there that contain dairy! If anyone comes across a dairy free cheese that meets our requirements, PLEASE let me know! For now, we're just avoiding cheese altogether.
I am pretty confident that with these substitutions, we should be able to adjust to no dairy just fine. There will definitely be an adjustment period, but Rapunzel is game, which should make things a little easier.
We have a list of "things to try" to help Rapunzel's eczema. It's obviously too overwhelming to try everything at once, so we've been going through the list. We tried gluten free for 2 months, which was really hard with her corn allergy (so many gluten free products contain corn), and we saw zero change. Now we're going to try dairy free. I've spent time researching products and talking to friends who are dairy free and have my game plan. I made a week-long dairy-free menu and shopping list. Tonight I made the rounds to Sprouts, Whole Foods and Trader Joe's and stocked up on dairy-free foods. Because I've already shopped for this week, we'll be starting our dairy-free endeavor next week. We'll most likely stay dairy-free for at least 2 months. This should put us right at our appt. with the Immunologist, which will be interesting!
Here is our menu for next week: 5 dinners (1 night of leftovers and Sunday nights are always cereal/sandwich/starve nights), 5 lunches (with 1 repeat, and Sunday lunch out - which means I'll pack a lunch for Rapunzel), 5 breakfast options (the kids pick what they want for breakfast from our usual easy go-to items), and 2 homemade snacks (which will be eaten for several days each)
When we first learned of Rapunzel's food allergies, it was very overwhelming. I made healthy choices when choosing foods for the kids to eat, but I also bought things in bulk, and bought "cheaper" things since I'm feeding so many.
When I started reading labels, I couldn't believe how many things had corn syrup in them. Even the things that boasted "NO HIGH FRUCTOSE CORN SYRUP". Guess what the first ingredient in a lot of those was... "corn syrup". Sure, it wasn't high fructose, but it was still corn.
And cornstarch. It's used so much for it's anti-caking properties. It's in powdered sugar. It's in lunchmeat. It's in frozen french fries. And more.
After researching and reading HUNDREDS of labels, I was able to find brands for these items that were corn-free. When Trader Joe's opened here, I fell in love. I found SO MANY corn-free items there for a FRACTION of what I was paying at Whole Foods or Sprouts. And they tasted GOOD.
Corn isn't the only food allergy that Rapunzel has, but it was definitely the hardest to adjust to. But after finding corn-free brands, it was easy to make subtle changes to my recipes.
The only thing we really miss is actual corn, which I obviously can't replace. And cornbread. Oh how my girl loved her some cornbread. I didn't think there was any way to make a comparable substitution. Until I came across a recipe for "corn" bread made with Cream of Wheat. I didn't know if it would be similar enough, but it was worth a try! So I bought some Cream of Wheat and gave them a try last night.
They're not exactly like corn bread, but they are definitely similar. And they were a hit with everyone! I think these will go into regular rotation around here!
Here's the recipe, for our "Acorn Bread" (you know, as in, non-corn bread)
1 c. dry cream of wheat (regular, not instant)
1 c. flour
1/4 c. sugar (I actually used 1/3 c. because I like my cornbread sweet, and it still wasn't quite sweet enough, so next time I think I'll try 1/2 c)
1 c. milk
4 tsp. baking powder
4 Tbsp. cooking oil
Preheat oven to 400*
Mix all ingredients together. Pour into baking dish.
Bake at 400*:
12-15 minutes for muffins
20-25 minutes for square pan
We ate them with some butter spread on.
If you're trying to avoid corn, be sure that you have corn-free baking powder (yes, corn is in most brands), and don't use corn oil for your cooking oil (I use Canola oil). We found this to be a pretty good substitute for corn bread!
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)!
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!
Persistent scratches ripping through the tranquility of the night,
and bedsheets dusty with flaked skin,
mingled with dried blood in the mornings.
Her skin stained with the purple sting of potassium permanganate,
burning from the relentless scorch of tea tree oil, smothered in topical corticosteroids.
Bandaged to retain moisture. Unbandaged to promote air flow.
A blur of diagnoses and “diagnoses” paraded by,
convictions by professionals and well-meaning relatives:
“No heat, no chlorine, no sunshine, no pollen. No butter, no wheat, no
potato chips, no fat, no chocolate, no seafood, no meat, no sugar, no
Too much American food. oxidized oils, pesticides, hormones-those damn Oreos, all to blame.
“This doesn’t appear to be a food allergy, but we can run some tests…”
“You see, the American doctors don’t study this. This is a question of inner body balance…”
A question of hotness and coldness of the body, toxicity, mystery, cortisone creams.
And a vicious cycle of irritation, scratching,
broken skin, infection, itchiness,
crying, scolding, shouting, scratching…
And the mingling of voices of authority spilled over the reddened cracks in her skin
and filled her heart with guilt and inadequacy.
“You are the only one who knows your body. Only you can know what to do for yourself-”
And the bitterness of her condition was accentuated
with the bitterness of soups and broths and reductions,
darkly resplendent with Chinese medicinal herbs, kernels, stalks, and shoots.
Later, with disappointment and failures came desperation
Cycling through past attempts, various diets. The doctors’ echoes weren’t very much help-
the relief provided through the prescribed creams and ointments was ephemeral.
Though some knowledge provided comfort – like the dreaded skin prick testing -
her back gridded into a 5×7 rectangle and stabbed thirty-five times
to reveal her body’s weaknesses towards watermelon, shrimp, milk, Kentucky bluegrass,
timothy hay, walnuts, chicken, turkey, sea bass, lobster, dust, mold, and cockroaches -
Her skin still burned and flared, cracked and red and dry and unforgiving, betraying her.
I’ve watched the parade of well-meaning people walking in and out of her life: smiling
pediatricians, puzzled dermatologists, vehement relatives. No one is to blame.
I’ve watched her sneak Oreos away from the pantry, stealing bites of childhood innocence;
shopping for turtlenecks; being tormented by other children
for the ragged appearance of her skin.
Watched my father drive three hours to the only Costco that stocked
unscented Keri Soothing Dry Skin Formula and return home with thirty
cases of three bottles each
(which by the way, also didn’t work).
And I’ve watched her grow up and out of her skin,
which still bears the scars and rough patches of struggles and treatments,
up and out of reticence, sensitivity, resentment, confusion, worthlessness.
Rising above the motley patchwork of voices to wholeness.
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!
One of the hardest things about managing Rapunzel's eczema, is figuring out her triggers. There are so many possible triggers, and we really feel like she has several. Environmental allergens are definitely one. We're pretty sure that her food allergies are not one, but we'll know more on that when she sees the Immunologist and gets tested for even more foods. Irritants against her skin could definitely be a trigger. We switched ALL of her clothing and bedding to cotton. Weather changes can be a trigger. But we think that Rapunzel's biggest trigger is emotional stress. Yes, this can absolutely be an eczema trigger. And probably the hardest one to control. When things upset her, she flares. When she's worried about something, she flares. When she's uncomfortable, she flares. And as she flares, she itches, and scratches, and we enter a vicious cycle. She doesn't like to soak in the bath. So every morning and every night it's a fight to get her into the tub. We've bought her fun bath toys. We've picked out books for me to read to her during bathtime. We've adjusted the temp of the water and the length of the bath. All have helped for awhile, but then it's a fight again. And it's hard because we know if she doesn't soak, her skin will get too dry and we won't be able to keep it under control. But we also know that if she's too upset about taking a bath, her skin will flare. Some days I feel like I'm fighting a losing battle.
We try to find things to help her emotionally during the day. Physical touch is probably her #1 Love Language. So I let her sit right up next to me anytime I'm at the computer. Eric and I both hold her in our laps a lot. And I make sure to give her lots of hugs and kisses throughout the day. We try not to give her too many choices during the day, as she can sometimes get anxious trying to make decisions. I also try not to give her too much information about anything, because that can cause anxiety in her as well. I focus on the positives of her condition: getting new clothes, her cute new hair cut, how much I love hugging on her. All of this helps, but when it comes down to it, she still gets emotionally stressed out, and it almost always causes a flare.
Here we are today, cuddled up on the couch together, making our "mean" faces:
As Rapunzel's skin flares, her itch gets more intense. Which means she tries to scratch, scratch, scratch. Which can (and has) lead to skin infections. People with eczema tend to harbor more bacteria on their skin in general, so when the skin barrier is broken, it's much more likely to get infected. During the day, we can try to deter her from scratching. But she does most of her scratching while she's asleep at night. One of the things we recently found that helps, is wrapping her arms and legs at night. After she has soaked, and we've applied her ointments, we wrap her up mummy-style with bandages and tape. I ordered a huge box of different colored bandage tape online and she likes picking which color mummy she'll be each night. We wrap her from the hip to toe, and the shoulder to fingertip. This helps keep her from scratching her arms and legs during the night (she can still scratch, but can't get to the skin to break that skin barrier). It's helps a lot to let her skin heal from an infection and to help keep it from getting infected again. If her skin is trying to heal, I'll even wrap her on days when we're going to be at home all day. It takes about an hour each night for her to soak, apply ointment, wrap her arms and legs, get dressed, take meds, brush teeth and hair and get into bed. It's takes slightly less time each morning that I don't have to wrap her.
Here you can see her hands wrapped this morning, as she's playing on the iPad (she embraces the bed head). She had an eczema flare yesterday and is still recovering from it today. She scratched so much last night that she was able to rip part of her bandages away on her upper thighs, forearms, and hands, leaving open wounds. (When I wrap her at night, I wrap her thumb up with her hands so that she has even less mobility with it to scratch, but during the day, I leave her thumb out so that she can use her hands for daily activities). So today, I've had to apply antibiotic ointment to her wounds and wrap her again. She'll spend most of the day at my side, so that I can help deter her from scratching more. It also means that most of her schoolwork will be adjusted since she can't grip a pencil to do much writing with the wrap on her hands. So any work she does today will be either on the iPad or oral. It's days like today that I'm so thankful we homeschool. I honestly don't know how on earth I'd be able to keep up with her skin care if I had to send her off to school each day.
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!
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!
Last night my husband and I spent several hours pouring over articles from medical journals to try to get a better idea of what eczema (or as it's also called Atopic Dermatitis, or AD) is exactly. We've been told a lot of things from different doctors - not necessarily conflicting information, just different things from different people. But we found an article last night that laid it all out and really explained the different facets of AD in a way that we could understand. I was hooked just from reading this sentence in the abstract: "Although the pathogenesis of the disorder is not completely understood, it appears to result from the complex interplay between defects in skin barrier function, environmental and infectious agents, and immune abnormalities." There is definitely a complex interplay, I knew that without a doubt. I just didn't know exactly WHAT it was an interplay of. We've had one doctor briefly mention something about a skin barrier deficiency, but they never really explained what that meant or what we could do about that. Now we're doing our own research and plan to talk to the Immunologist about it in May. We've also had doctors tell us that it's absolutely not an immune issue. However, I truly believe it is, and according to this article, I may certainly be right. This is another thing we plan to bring up with the Immunologist. The environmental and infectious agents are the ONLY things that any dr. has ever really addressed to us as a cause for her eczema. Though, it's clearly more than that. The article also laid out a great step by step algorithm for managing the disease. Our number one goal is to figure out what her triggers are, so that we can control as many of those as possible. But, in the meantime, we have to learn how to better manage her skin day to day to help keep flares at a minimum. Step #1 is education: understand the chronic nature of the disease, importance of treatment adherence, and appropriate use and application of topical therapies. It really wasn't until this past year that we started understanding these things. So we're on our way! Step #2 is skin care: regular bathing, regular, liberal use of emollients/moisturizers. We are on top of this right now with Rapunzel. But it's definitely not easy. We've been guilty of letting her "just go to bed" without a soak or skipping a morning soak because we're running late a few times, and it's just not worth it. Again, this goes back to Step #1 - education. We are just starting to really understand this disease, and understand how vital it is to keep on top of it. I am not exaggerating when I say that missing one bath could be all it takes for her skin to go from ok to infected. Adherence to treatment is THAT important. Step #3 is topical corticosteroids. This one has been contreversial for us, because for years all we were given was Step #2, immediately followed by Step #3. Well, as you can see from my example in Step #2, even it fails without a good Step #1. So you can imagine, Step #3 not going well either. We spent years going back and forth between this steroid cream and that. Getting stronger, then pulling back. All with the same result: they *might* clear her skin, but as soon as she came off of them (whether it was cold turkey of weaning), she relapsed hardcore. It was a never ending cycle. And we were starting to see the effects of steroid-use in other areas as well - Rapunzel's anxiety shot through the roof. We recently decided that we were done with topical corticosteroids, as they seemed like a bandaid that wasn't even working. After reading this article though, we realized that when Steps #1 and #2 are followed, Step #3 can actually be a pretty effective way to handle a flare. Step #4 is topical calcineurin inhibitors (also called topical immunomodulators). This is Protopic, which we do have for Rapunzel. These work by suppressing the immune response of the skin, but contain no steroid. These are good for when corticosteroids are not clearing a flare, because they are safe to use daily for longer periods with less side effects. This is another thing that was never fully explained to us. Step #5 is systematic corticosteroids. This is the oral prednisolone that Rapunzel has had to take a few times. It is really saved for when a flare has gotten so severe that infection is pending (or has begun) and needs to be reeled in quickly. The side-effects of this are ugly, and it's not something that should be used too much or too often. Then along with all the Steps are courses of action to take for bacterial infections, viral infections, and sleep disturbances. Diluted bleach baths should be used to prevent staph infections (which are super common since staph is colonized in about 90% of AD patients), and antibiotics are needed when a secondary bacterial infection is present. First generation antihistamines are recommended to help with sleep, since most AD patients tend to get itchier at night, and thus stay awake scratching. Reading this article really helped us to see the breakdown of caring for Rapunzel's skin. The article can be found at : http://www.aacijournal.com/content/7/S1/S4
We visited with some friends of ours last night who have a daughter with severe allergies. It was part informational, part commiseration, part encouragement, and all very interesting! Not that I'm glad that any other child has to go through the difficulties that allergies bring, but it's just sometimes nice to be able to know that others have been there and they understand! We had our eyes opened to a new possibility last night. Our friends mentioned that their daughter is very allergic to certain fabrics - like wool and polyester. Ding Ding Ding. This could be a huge reason for Rapunzel's flares! Now, we're pretty positive that there are a lot of different things that can be causing her flares, but this one we're investigating a little further. We checked her pajamas first (since it was bedtime once we got home from visiting with our friends). She currently has basically 2 different types of pajamas: Carters microfleece 1 or 2 piece pajamas, and Carters Snug-Fit 2 piece sets. The snug-fits are 100% cotton so those are good to go. However, the microfleece are 100% POLYESTER! Those are outta here. Next, we checked her bedding. Her sheets, pillow, and blankets were all either 100% polyester or a polyester blend of some sort. My husband dug through the linen closet and found one sheet set that was 100% cotton. On this morning's agenda: find a new set of 100% cotton bedding. CHECK! We went to Target, and she picked out a new quilt and I got her some super soft cotton sheets. She was so excited about them that she opened them as soon as we got home and set up camp on the couch.
I also spent the morning going through all of her clothes and seeing how much 100% cotton items she had. Turns out, about half of her clothes were still ok for her to wear. Most all of her leggings, several shirts (long sleeve and short sleeve), some dresses, and a few skirts were all fine. So I plan on taking her this week to pick out a few new items to add to her cotton wardrobe.
Now, this may be all for naught, as she may not be reacting to the fabric at all. But, it's worth a shot! And any solution that involves shopping, I'm totally game for!
We have found that one of the best ways to keep Rapunzel from scratching is to simply keep her skin covered. It's been easy to keep her in pants, long knee socks, and long sleeves through the fall and winter. It doesn't keep her from scratching altogether, but it at least helps her nails to not make direct contact with her skin all day long. However, we live in south Texas, which means we've already started getting warm fronts, and in another month or so it will start being warm all the time. By May, the weather will be HOT and will stay that way until October, when we get our first cool front (if we're lucky). So it won't be long until she can't get away with wearing pants and long sleeves anymore. On top of her eczema, Rapunzel also suffers from "hypohydrosis" which means she doesn't sweat much. Her body has a hard time cooling itself, so we have to make sure she doesn't get overheated. So while pants and long sleeves may be good for her eczema, it would be detrimental for her to wear them in the extreme heat of south Texas.
So for this spring/summer I'm planning to get her a wardrobe of cotton tshirts, skirts, and leggings mostly and hoping that works well. It's all about finding the balance between covering as much skin as possible without overheating.
As one can imagine, this whole experience is very overwhelming. There is not a clear path for us to follow. There are tons of maybes, perhaps, and what ifs. We are in constant prayer about what to do or how to handle Rapunzel's care. When I post anything about Rapunzel's condition, I get several messages about things to try, steps to take, or simply words of encouragement. I truly appreciate every single message I get. I am so grateful that others would take time out of their own busy lives to try to help us in some way. I love that there are so many people out there who love my girl and want to help!
Sometimes I reply. A lot of times I don't. But it's not because I didn't read it (I read everything sent to me), or because I didn't want to hear it (I'm grateful for any words!). But it's usually just because I'm too overwhelmed to reply. A lot of the things people suggest, Rapunzel's can't do for one reason or another. A lot of things we've already tried. A lot of things we do try (some successful, some not). But there is much to Rapunzel's condition, that to try to reply thoughtfully to each message just isn't possible for me right now.
That's one of the reasons I started this blog. So that I can slowly lay out the different layers of our journey. So that others can get a glimpse into our life. But just know, that if you've ever sent me a message, I appreciate you taking the time to message me. And I am thankful that you care about Rapunzel! And it is not personal if I don't reply. I'm just a little overwhelmed.