Previous: National Jewish Health, Day 4

If you are new here, you can find all of the posts in our Overcoming Eczema, Food Allergies and Night Terrors series hereto get caught up!

Bella slept from 9:30-8:00 without a peep! Per doctor’s request, I did not give her Chloral Hydrate but put her back on the Clonodine to help her sleep.  The sleep doctor recommended we keep her on the Clonodine  for a while.

Bella was especially quiet today without her buddy.  She has come such a long way.  She took her vitals and a scratch test without even blinking.  The only thing she is still terrified of is the nasal wash, and I can’t say I blame her.  It takes several nurses to hold her down and blast her snot out.  She has developed a really bad cold, so I am glad they are doing this.

We had a team meeting with 3 doctors today.  Starting tomorrow they want to keep her bedtime routine as is (bath, topical steroids and wet wraps on hands and feet, lotion and dry clothes on the rest of the body).  The morning routine is now to use protopic and dry wraps on the hands and feet and lotion on the body.  Her skin is clear other than some redness on her hands and feet, and we are already using less steroid creams than we did at home!

We challenged baked milk today.  Baking milk alters the protein so that some milk allergic people can tolerate it.  I think she ate four muffins in small doses spread throughout the day.  She passed! This means she can eat food with milk in it that has been baked for at least 30 minutes at 350 degrees or higher.  Studies show if she eats baked milk daily, she will eventually desensitize to fresh milk.

There was another little guy doing the exact same baked milk challenge.  He had an anaphylactic reaction after the second serving. The nurse administered an epi pen, gave him a breathing treatment (he has asthma) and benedryl.  After a couple hours of observation they sent him home.  Somehow I missed the excitement.  I think I was in the bathroom.  I don’t wish that kind of reaction on anybody but if it’s going to happen, I wish I had seen it.  What a good lesson it would have been for me to see that kind of reaction and how it was dealt with!

So now that Bella has passed baked milk, they will try giving her something that has been cooked a shorter amount of time, like cheese. If she passes that, they will give her fresh milk.  The last time she had cheese her whole body turned bright red, hot and itchy for a day or two.  Antihistamines didn’t help.  It was awful. I’m trusting they know what to do here if that happens again.

Since the almond butter contained traces of peanuts and hazelnuts, the doctors decided we needed to do a puddle test before we do a food challenge with it.  A puddle test is a scratch test with the actual food.  She passed the puddle test, so we will challenge almond butter next week.

We left the hospital around 4:30 and decided since it’s Friday, we wanted to do something fun.  The local aquarium gives free admission to Ronald McDonald House guests, so we decided to check it out.  We had a blast!  They have one of those restaurants where your table is right next to a huge aquarium.   We made reservations during a mermaid show.  Seeing mermaids was a dream come true for Bella!

We have the weekend off from the hospital. I’m looking forward to hooking up with an old friend and her family who live in Denver.

Next: National Jewish Health, Day 6

You can read all of the posts in the Overcoming Eczema, Food Allergies and Night Terrors series here.

Please excuse the crusty nose! She has developed a cold.

Previous: National Jewish Health, Day 3

If you are new here, you can find all of the posts in our Overcoming Eczema, Food Allergies and Night Terrors series here to get caught up!

Last night was the first night we did the baths and wraps on our own in our room at the Ronald McDonald House. We got it done, but it takes so long. I don’t start the 15-20 minute timer until Bella is wet from head to toe. As I said before, she has to ease into the tub and then slowly get her face and back wet. Our 15 minute bath easily becomes half an hour.

Last night I gave her the smaller dose of Chloral Hydrate as the doctors ordered. It didn’t knock her out like it has before. She had a hard time relaxing. After about an hour she started getting itchy under the wraps. This hasn’t happened before. She kept trying to pull the wet socks off of her hands and feet. I fought her for a half an hour and then decided she would go to sleep easier without them. We learned in the lecture yesterday that 2 hours is the ideal time to keep the wraps on, but 1 hour is enough if you are pressed for time. It had been an hour and a half, so we took the wraps off and put vanicream and dry socks back on. She fell asleep 10-15 minutes later and slept through the night. Two nights in a row of sleeping through the night! Whoot!

We had a normal morning of vitals, bath and wraps. We also met with a dietitian. She asked about our normal diet. She is concerned that Bella is not getting enough complex carbohydrates and calcium. She recommended we offer milk substitute at every meal and consider a supplement. She pointed out that Silk does not fortify their coconut milk with a significant amount of calcium.

The doctors reviewed the previous day’s allergy test with me. Bella’s environmental allergies are pretty limited. She is allergic to a certain kind of grass, dogs and cats. The puddle test for the fresh milk and scrambled eggs were positive, but the doctors feel comfortable challenging these as well. We will start with the least likely to cause a reaction while her skin is still healing.

Then we had group therapy for parents where we discussed how to deal with chronic illness in school. 504 plans were discussed in depth. Creative ideas were shared. One that I really liked was instead of having a peanut free table in the lunchroom, have a peanut table. This way the peanut allergic kid isn’t isolated everyday.

The most exciting part of our day was a wheat challenge. Bella ate an entire piece of wheat bread with no reaction! She is so excited. She keeps telling everyone we see that she can have wheat now.

A gift from our special friend on her last day in the program

Today was our sweet friend’s last day. She brought Bella a gift bag full of goodies to help her be brave.  It included a pinwheel for breathing exercises, a turtle for bath time and a notebook with a giant pencil to write letters.  The notebook had a sweet letter of encouragement written in it.  She paid for it with her own money.  I had a really hard time holding back my tears.  The good news is this sweetheart is a local kid.  We exchanged numbers and hope to get together to play before we leave.

This afternoon’s lecture was on asthma. Thankfully, Bella doesn’t have asthma, but 50% of kids with severe eczema develop it at some point. Two of my other children have asthma. Since National Jewish has been the number 1 respiratory hospital for years, I figured I ought to soak up as much knowledge on asthma as I could.

Bella had her nasal flush and we were sent home with an assignment: find almond butter for tomorrows food challenge. The only almond butter I could find includes a cross contamination warning for peanuts and hazelnuts. Since Bella is allergic to both of those nuts, I’m curious to see if they still try it.

There was a bad rainstorm before dinner and the electricity went out at the Ronal McDonald House. Our room has three windows to let the sunlight in, but the bathroom was pitch black. I thought we might have to go back to the hospital for our bedtime bath and wraps. Then I remembered seeing a bath tub filled with glow sticks on Pinterest. I had some glow bracelets in Bella’s carry on bag. We threw a couple in the tub and had a glow in the dark bath! It was so much fun I’m sure we’ll do it again.

Next: National Jewish Health, Day 5

You can read all of the posts in the Overcoming Eczema, Food Allergies and Night Terrors series here.

Bella on the Ronald McDonald Playground attached to the playroom. Only hands and feet are wet wrapped now.

Previous: National Jewish Health, Day 2

If you are new here, you can find all of the posts in our Overcoming Eczema, Food Allergies and Night Terrors series here to get caught up!

Bella slept really well last night! She sat up once around 3:00 AM.  I told her everything is OK, and she settled herself back to sleep.  I had to wake her up to get her to the hospital on time.

Pulling her wet wraps off this morning was like opening a present.  Her skin looks amazing! Most of her body feels like a baby’s bottom.  Her skin has never felt like this.  Her hands and feet (always her worse parts) are still slightly inflamed and kind of rough.

We went straight to radiology for an upper GI.  If you know Bella in real life, you know her voice sounds raspy and a little hoarse.  People have always told me it’s cute, but the doctors are concerned that it is a result of hidden reflux.  The radiologists asked Bella to lie down on a table and drink a barium concoction while they watch it go down.  She sat on the table but would not lie down.  The two men told us to come back later.

Once in the pediatric ward, she had her vitals taken.  A team of doctors came to look at her skin and go over test results with me.  They were very pleased with her skin.  They said she needs two baths again today, but this time she only needs to wet wrap her hands and feet.  The rest of her body no longer needs steroid creams. We will liberally cover it with Vanicream instead.  Bella was thrilled!  They also reduced the amount of sleeping medicine (Chloral Hydrate) she will take tonight.

The doctors showed me a neat chart comparing the results of the allergy scratch test, blood test and life experience that I reported.  Comparing the results, they said that peanut was definitely going to cause a reaction. There is no way to know how severe, so we need to carry an epi-pen.

The hazelnut and cashew (pistachio too because so similar to cashew) should be avoided. Generally small children who are allergic to nuts are advised to avoid all tree nuts, because they don’t know how to tell them apart.  The doctors said we could test other nuts if I felt it would not confuse Bella.  I told them the only nut I was really interested in is almond.  We love almond butter, and I’d love to be able to bake with almond flour.  They said that it would work well to tell her the only nut you can eat is almond butter.  They ordered a scratch test and blood test (reuse previous blood) to almond.

The egg and dairy were interesting.  Even though the scratch test showed practically nothing, the blood test showed a significant reaction.  The decision was made to “puddle test” them.  A puddle test is when they use actual egg and dairy instead of the serum in a scratch test.  If the puddle test goes well, we will do a food challenge.

Bella has never tested positive to wheat.  It was suggested by someone we were working with to try removing it, so we did.  When I added it back in, I was sure her eczema got worse the next day.  So she has been wheat-free for a year or two.  Since she tested negative on both tests here, the doctors want to do a food challenge.  A food challenge is when the child is given a suspected allergen under doctor supervision.  It is the only way to tell if there is a true allergy to the food.

They asked if there were any other foods I’d like to test.  General “fish” passed the scratch test, but we decided to test salmon, tuna and cod.  I didn’t mess with shellfish since we are rarely around it.

The doctors ordered a nasal flush once a day. I find this so interesting.  We know that these eczema kids are prone to having staph on their rash.  The staph irritates the rash and can cause infection.  We also know that the nose is a huge breeding ground for all kinds of bacteria including staph.  Kids pick, wipe or scratch their nose and then scratch their eczema spreading the germs.  If you can get rid of staph in the nose, you can greatly reduce the amount of staph on the skin.  Nasal flushes are also beneficial to asthma kids, but that is another article!

After the doctors left, it was time for Bella’s bath and wraps.  Once wrapped, she played in the playroom a little while, and then she and I ate lunch in her special friend’s room.  It’s been so great getting to know this kid and her mom.  Bella’s friend has some other conditions including pretty severe asthma (50% of kids with chronic atopic dermatitis develop asthma).  Her mom is a single mom, and I think she deserves a gold medal!  I can’t imagine going through what we’ve been through plus some alone.

After lunch we had another scratch test.  This time we did an environmental allergy panel.  We added almond and the egg and dairy puddle test. Bella was pretty brave.  I was proud of her.

Then we met with the sleep doctor. Everyone here is amazed that we were able to get an appointment with her.  She interviewed us for about an hour.  She asked what I knew about night terrors.  I told her only that my doctor said it was caused by anxiety and common in children with chronic pain.  I didn’t mention that he said the next level of medication for night terrors is Prozac.

She shook her head and said night terrors are NOT caused by anxiety. There is a genetic component to them.  Night terrors, sleep walking, sleep talking are all different forms of the same thing.  She asked if anyone in my family did these things.  I told her my brother used to sleep walk.  She jokingly said blame the night terrors on your brother!

The doctor explained that we all have sleep cycles that we loop through.  At the end of each sleep cycle, we wake up.  We just don’t remember it.  Night terrors/sleep walking/ sleep talking are the child getting stuck in the transition from one sleep cycle to the next.  The only thing that triggers them or makes them worse is not getting enough sleep. Itching wakes up eczema kids over and over which means they are not getting enough sleep thus triggering night terrors in those who have a genetic predisposition.  This is where anxiety can play a part.  If a child is too anxious to go to sleep, then he/she will not get enough sleep and trigger night terrors.

She said stopping the itching will likely get rid of or at least diminish the night terrors. She noted that we are taking care of that here.  She recommended trying to get Bella in bed 15-30 minutes earlier to give her a little more sleep.  She said she would definitely stick with the clonodine as long as we need to.  She doesn’t recommend it often, but sometimes eczema kids need it.  She feels it is perfectly safe for long term use.  She said we need to be more consistent about giving Bella the medicine 30-60 minutes before sleep.

Did I mention how refreshing it is that people get it here?  As you know, we have to stay with Bella as she falls asleep to stop her from hurting herself.  Also, she climbs in our bed in the middle of the night, so I can rub her itchy spots.  I was sure I was going to get a lecture about these terrible sleep habits.  To my surprise, the doctor said she wouldn’t expect anything different; we have done exactly what we needed to do.  As the itching stops, we can gradually work on not staying in the room as she falls asleep, but we can’t do that ’till the itching stops.  As the going to bed process becomes less dependent on Dad and me, the coming in our room should become later and later until she no longer comes in.

The doctor sent me out with a bunch of literature that I can’t wait to read.

After meeting with the sleep doctor, Bella went to the playroom while I went to an hour long class on atopic dermatitis.  I took four pages of notes that I don’t have the energy to type up now.  If you are interested, remind me later when I’m not so exhausted and I’ll share them.

After the class, Bella had a nasal flush. The poor thing developed a nasty cold when we got here, so I was so glad they were helping her out.  It took two nurses, but overall it went pretty smoothly.  I was really proud of her.  She earned another trip to the prize closet today.  She picked out a teddy bear.

Next: National Jewish Health, Day 4

You can read all of the posts in the Overcoming Eczema, Food Allergies and Night Terrors series here.

Denver Zoo - The lighting is bad, so it looks like her skin is clear. It's a little better, but not clear.

Previous: National Jewish Health, Day 1

If you are new here, you can find all of the posts in our Overcoming Eczema, Food Allergies and Night Terrors series here to get caught up!

We spent Monday night at the hospital. Bella had a bath/wrap before bed.  She no longer needs her face/head wrapped.  They gave her some medicine (Chloral Hydrate) to help her sleep.  She woke up around 1:00 AM local time.  She sat up and started pulling her wet wraps off and scratching.  The nurse and I took the wet wraps off, covered her in vanicream and put dry pjs back on her.  She was scratching at her hands and forehead.  So, just like at home, I sat with her and tried to stop the scratching while rubbing her little itchy spots.  It took about an hour until she stopped scratching and settled into a deep sleep.  I went back to sleep.  The nurse had the monitor on in the room and said Bella screamed around 5:00 AM and settled back into sleep on her own.

I’m not sure what time we woke up.  Bella was anxious and crying again.  She wanted to go home.  So we went looking to see if our little friend was there.  She had just arrived and was checking in.  I asked if they could have their morning vital signs taken together.  Bella watched very closely as our friend had her chest listened to and temperature, pulse and blood pressure taken.  Then with all the courage she could muster, Bella held out her little finger and arm for the nurses. I was so proud of her!

Unfortunately we had to follow that with blood work. They had used numbing cream and really tried to distract her.  It just didn’t work.  They had to wrap her up in a blanket like a burrito.  It took four nurses to get the blood.  The good news is they don’t anticipate having to take blood again.

Did I mention she has a sticker chart?  The blood draw earned her enough stickers for a trip to the prize closet.  She picked out a hair set for her dolls.  It included a couple of curling irons and clips.  It almost made her forget what she had been through.

We went straight from the prize closet to the bathtub.  She will only need two baths/wraps today, one in the morning and one at bedtime.  Baths and wraps are the cornerstone to the treatment plan here, but most kids are terrified of them.  Kids with severe eczema usually have open wounds, and when water hits them it stings.  Have you ever tried to give a cat a bath?  That’s what it looks like when you try to give a kid with open wounds a bath. You know it hurts, but you also know they need it.

Even when Bella doesn’t have open wounds she is terrified of water. It takes a lot of coaxing to get her in the tub.  It’s a very slow process of dipping a toe to see if it hurts, then a foot, then two, then sitting on the knees, then on the bottom, then hands.  Usually by the end of the bath she is lying down and “swimming.”  She usually is having so much fun she doesn’t want to get out.

Even though she had two baths that didn’t sting the day before, Bella was afraid to get in the tub.  She was sure the little spot in her arm where they took the blood would sting. There was no rationalizing.  The nurse and I had to hold her in the tub for the full 20 minutes while she kicked and screamed bloody murder.  When it was all done, the nurse and I looked like we had been in the bath.

Once in her wraps, she snuggled up in her bed and watched some Disney.  The psychologist showed up after that.  There was a one hour interview.  I don’t know that she said anything profound, but it was just so refreshing that she got it.  Almost everything Bella does is normal for kids with eczema.  She said she would have people work with Bella.  She would let her play with medical equipment.  One thing she did note is that waking to scratch is normal for these kids, but night terrors are not.  She was afraid the night terrors were a separate anxiety issue as my doctor at home was beginning to suspect. Did I mention my pediatrician said if the medicine we are currently taking (clonodine) didn’t help the night terrors, the next level of medication is Prozac?  Not what you want to hear about your four year old.  We have an appointment with a sleep doctor tomorrow.  The psychologist said she would know what to do about the night terrors.

Then there was an allergy scratch test. First a child life specialist went over everything and let Isabella play with tools just like the ones that were going to be used in the test.  All things considered, she did pretty well.  Peanut, hazelnut and cashew were really strong reactions.  Interestingly, there was no reaction for wheat, and egg and dairy were close to nothing. I can’t wait to see how the doctors interpret that in the morning.

Normally the kids spend the first night in the hospital and the rest of the program is outpatient.  Typically the bedtime bath and wraps are done in the hotel.  Because morning bath time was so crazy, they decided we must do the bedtime bath and wraps at the hospital.  Then I would take her back to the House and put her straight to bed.

Because we had to come back at night, they gave us the late afternoon off.  We went to the local zoo (admission is free for hospital patients).  We had dinner at the Ronald McDonald House and skyped the family before heading back to the hospital.  This time Bella did really well with the bath and wraps.  They gave her some sleeping medicine (chloral hydrate), and I took her back to our room.

Next: National Jewish Health, Day 3

You can read all of the posts in the Overcoming Eczema, Food Allergies and Night Terrors series here.