Day 6 National Jewish Health Atopic Dermatitis Program

Ava and I had a nice weekend. Saturday we didn’t really do much of anything, just tried to relax after a long week. Of course, I am in Denver, so on Sunday we went to a Super Bowl party with the family we are staying with. I didn’t watch much of the game because Ava was very busy exploring, but football is not my sport anyway. Plus, I had absolutely no preference for one team over the other.

Over the weekend, I did two baths each day, wrapping Ava’s head after both baths Saturday and then only after her night bath on Sunday. This morning, I thought she looked a little red on the back of her neck, but hoped moisturizing would help. The plan today was to do a food challenge of baked egg. Dr. Lanser said she was clear enough since it was just a little red on the back of her neck. The plan was for her to eat a muffin that had a certain amount of egg in the recipe. She was to eat some every 15 minutes, increasing the amount each time. After the second dose, I could see the redness spreading across her face. Her skin was bumpy. Dr. Lanser came to look at her and he decided that was the end of the challenge…egg is a no go. He wanted me to get her in the bath right away and wrap her head and neck.

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I got her in the tub and I could see the flare up happening before me eyes. Spots were now popping up on her arms and legs. I had left her bath toys at home because I did not expect to give her a third bath today. So, she was a little unhappy in the tub. I got her out and the nurse came to help me get her wrapped. Unfortunately, she thought we needed to use the steroid on the spots that had flared up. I am nervous about using the steroid cream too much but have been reassured that it will not be long term. We had already stopped using it last week after only a couple of days and were keeping her skin looking good with just the moisturizer. Once we know all of the triggers that can cause Ava’s skin to flare, then we should be able to keep it clear just with the baths and moisturizing.

After we finally got her all wrapped up, I got us some lunch and then Ava took a nice long nap. After her nap, I unwrapped her and we waited to see Dr. Lanser again. Ava looked a little better, but he wanted us to wrap her completely tonight Рarms, legs, head Рand also tomorrow  morning. If she is clear enough, we will challenge baked dairy tomorrow.

Ava did improve even more on the ride home from the hospital. That made me feel a little better, as it seems like now that we have healed her skin, she will be able to recover from these little flares fairly easily. I am disappointed that she is sensitive to egg. Of all the foods she could be sensitive to, I was really hoping eggs was not one of them! We eat a lot of eggs as a family, as they are so good for you! Hopefully, she will be able to tolerate them as she gets older.

Ava is completely wrapped up now and sleeping. It was a another long day. I did not anticipate how emotional this whole process would be. It is certainly very tiring. This is not to discourage anyone that is considering coming to NJH, just something to consider and prepare for. I do think that it would have been easier for me if someone was able to make the trip and come with us each day to the hospital. Still, the family we are staying with has been wonderful and Ava is becoming pretty comfortable with them!

Tomorrow is another day, and I pray for no more set backs!

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Day 5 National Jewish Health Atopic Dermatitis Program

Ava slept all night last night without waking once! She fussed for just a couple minutes at one point but went right back to sleep. That is great progress. She slept until 8 this morning, which was fine because we did get snow last night and were delayed a little bit this morning. We didn’t get into the hospital until about 10am.

Since Ava slept late, we didn’t do her bath before we got to NJH, so we did that first thing. We only had to wrap her head/face and didn’t have to use any steroids, except for a very small amount on the couple spots that are being stubborn. That is just a little spot on her forehead and a similar size spot on her lower back. These were two of her favorite spots to scratch.

One of her many wagon rides.

One of her many wagon rides.

When it was time to take her wraps off, she ate a little lunch and then we did a food challenge. We challenged soy today and did just fine. Soy is something that our family does not eat, however something like soy lecithin can be hard to avoid at times, so it’s good to know that she isn’t bothered by soy.

It was my turn to do the nose wash today so that I was prepared to do it over the weekend. It was tough because Ava has such a tiny little nose! It really is effective, helping to flush out any allergens.

So, that was it for today. The nurse and I went over the plan for the weekend. I will still bathe Ava twice a day, but only have to wrap her head/face tomorrow morning and night. Come Sunday, if I don’t think she needs the wrap after her morning bath, we can skip it. We really need to keep our eye on any flaky skin and be sure to moisturize often, but don’t need the steroids!

We left about 3pm, just in time for the snow to start again.

It has been a long week and I am looking forward to (hopefully) a restful weekend. Ava has come a long way in just 5 days! I am praying that we can keep her skin looking and feeling as good as it does now. Next week we will spend most of our time doing food challenges.

Day before we started the program.

Day before we started the program.

After 5 days

After 5 days

Day 4 National Jewish Health Atopic Dermatitis Program

Ava’s skin is looking so good that we dropped down to two baths today! We only wrapped her legs and head this morning, of course still moisturizing heavily everywhere. Her forehead is being really stubborn, so the head wraps will definitely continue, but tonight we actually only wrapped her feet instead of her entire leg!

We met with a nutritionist today. Ava is on the smaller side, but she has several factors working against her. One, her three siblings also were small at this age, but they have all caught up and are perfectly healthy. Two, she spent most of her time scratching herself for the past year so she didn’t have much interest in anything else, including eating. Three, she hasn’t slept well either in the past year, so she missed out on that important time to grow. Four, the amount of energy her body used to constantly try and heal her skin would burn most all the calories she took in. Five, not knowing what foods might be causing her eczema to flare up, she has been on a pretty limited diet. Luckily, the nutritionist mostly agreed with me on this and did not push the issue. Other than that, her blood test showed her iron is low, so I need to get more iron into her either by supplement or iron rich foods. The rest was pretty basic, common sense advice on what to feed a growing child.

Besides Ava’s bath today, we did another round of skin tests. Today was for environmental triggers. She reacted to…nothing! I discussed the results of her skin test from yesterday and her blood tests with Dr. Hauk. Her skin test yesterday showed a reaction to sesame, pretty much all nuts and a very minor reaction to dairy and eggs. As far as her blood test, overall, her Ige was elevated, but not astronomical. As far as her Ige response to individual foods, nuts were definitely high, so we will not do a food challenge to any of them since it is consistent between the skin and blood tests. Her Ige response to dairy and eggs was slightly high, so the doctor would like to do a food challenge to baked eggs and baked dairy (meaning when it is an ingredient in something) and then in the future try to add straight dairy and eggs back to her diet. Yesterday she showed no reaction to wheat on the skin test, but her Ige was slightly high. So we did a food challenge with wheat today. Ava ate some pasta, then twenty minutes later she had some more. Then we had to wait 2 hours to observe if there was any reaction. I took her for a nap and an hour in she woke up suddenly, crying and scratching. She had not scratched all day, but there was no flare of her eczema. The nurse did not think there was any reaction to the wheat, but I am going to watch for itchiness if she has it again. Wheat is not a big part of our family’s diet, so it may not be an issue.

We are getting snow here in Denver, so the ride home was a bit treacherous. Depending how much snow we get, I am not sure I will be able to make it in to NJH tomorrow morning since I am about 15 miles away. I will either go in late as conditions improve or just stay put and do her baths.

Thanks again for reading! I hope this has been informative and helpful to someone.

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Day 3 National Jewish Health Atopic Dermatitis Program

The days are going by pretty fast!

Today we started with a bath right away. There was no crying about baths at all today! Dr. Lanser said her arms and hands looked great, so there was no need to cover them with the wet layer. She still has some pretty thick skin and deep creases on her ankles/feet, so we still did the wet layer on her legs. Of course her worst spot is still her head/face, which has been the slowest to heal, but that’s because it’s the toughest to wrap. However, it is still drastically improved.

It is amazing to see Ava so anxious to play, even when she is wrapped up. She never wanted to play before and always clung to me. Now she is anxious to go, go, go and she is very busy!

After the two hours of being wrapped was up it was time for her first skin test! Today they tested food: dairy, egg, wheat, seafood, shellfish, peanuts, tree nuts and soy. Here is a picture of what her back looked like:

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The biggest reaction was to sesame and all the rest were to nuts, except for the two smaller ones on the far, upper left, which were dairy and eggs. Good news and bad news. Well, maybe not bad news, just curious. First of all, for the good news, the reactions to eggs and dairy was just about the same size as the reaction to histamine (near the plus sign on the upper right), so we can probably do a food challenge with those and have them in her diet. Curious news is that nuts have not really been a part of her diet. She has never had peanuts and only had almonds a few times. So I continue to wonder what was making her eczema so bad. All of these results will be compared to the results from the blood test to get a better picture. Wheat, fish, shellfish and soy had no reaction. We will do another skin test tomorrow, this time for environmental triggers.

Next we had lunch and some more play time while we waited for it to be time for the next bath.

We did the same routine as the first bath of the day, skipping the wet layer on the arms/hands. It was 3pm by the time she was all wrapped up, so the nurse said we mind as well get on our way and just unwrap her when we got back to the house. She fell asleep in the car since she hadn’t napped all day. She had lots of energy when we got home!

We had a lovey dinner with the family that is hosting us. They have been so accommodating! We are so appreciative!

After dinner it was bath time again and now Ava is asleep, hopefully for a while!

Thanks to everyone who has read and followed this blog. It has been much more popular than I ever expected!

Day 2 National Jewish Health Atopic Dermatitis Program

Today was another busy day, but it was much like yesterday since the focus right now is healing Ava’s skin with the soak and seal process.

We stayed overnight last night so that Ava’s sleep could be monitored, or rather her oxygen saturation and pulse are observed, while she sleeps. This was all fine and normal. She did wake up during the night three times, which is better than her usual. She was also much easier to settle back down. I didn’t have to walk the floor with her while she screamed. I would say it was a much better nights sleep for both of us. The overnight nurse was so kind to do our laundry for us!

After breakfast this morning, her vitals were checked and then came the always enjoyable blood draw. It was tough to find those little veins, but the nurse did and somehow got 6 vials of blood. Ava screamed the whole time, but recovered quickly and we prepared for her first bath of the day.

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Looking so much better already!

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Throwing her bath toys in the tub!

She still cried through most of this bath, but started to come around near the end. Then she pooped in the tub, so bath time was over! After her bath, we of course did the whole routine of cream and wet wrapping.

We went for a little walk before it was time for parent group discussion. Today’s topic was sleep. It was very interesting to hear about some of the studies that have been done that show just how important quality sleep is. And lots of it. We also got plenty of ideas for getting children to sleep on their own so that everyone can enjoy that quality sleep! I will certainly be using the pointers with all of my children.

After getting unwrapped, it was lunch time. Ava has been eating amazingly well here. We went for another little walk since she has to be out of the wraps for at least an hour before starting all over again.

After our first bath of the day.

After our first bath of the day.

After another load of laundry (with all the socks and clothing you use after each bath you have to stay on top of it), it was time for Ava’s second bath of the day. Dr. Hauk came to visit just before she got in, then while she was in the tub, Dr. Lansing, Dr. Boguniewicz and a student stopped by. All of the doctors were so pleased with how quickly Ava’s skin has improved. And she finally enjoyed the bath this time around! When we got her out, the nurse wanted to observe me wrapping her head/face since I would be doing it alone tonight.

Next we met with Dr. Darr for the first time. She will help us with the emotional aspects of Ava’s eczema. Scratching has become Ava’s immediate reaction to every situation. She also uses it to soothe herself. Dr. Darr will help us try and break that cycle, the best that she can in a child so young.

After that, it was just about time to leave. Ava was brought some dinner, so she ate a bit before we unwrapped her. We also did a nose wash before we left.

Although I did see a significant decrease in her scratching today, as soon as we got in the car, she started up again. We will keep working on it!

I did her third bath of the day around 7:30 and had her wrapped and ready for bed by 8. She did already wake up, so maybe it won’t be as good of a night’s sleep as last night, but I am hopeful.

More baths tomorrow and I believe a skin test!

Day 1 National Jewish Health Atopic Dermatitis Program

Ava and I had a very full day today! It is 8:30 and she has just fallen asleep. We are staying at the hospital tonight so that her sleep can be monitored. I don’t want to get behind in posting about our experience, so before I get to sleep, I want to try and document what happened today.

We arrived at 8:00am to check-in. We went right to our room and one of the doctors, Dr. Lanser, came in immediately! He asked all the usual questions: when her eczema started, how we have treated it thus far, what doctors we have seen, what her eating and sleeping habits are…He made me feel so relieved right off the bat because he told me that it is not at all uncommon with eczema to see such wild fluctuation from day to day, or to have a difficult time pin pointing the triggers. I no longer feel like I had just given up and wasn’t doing enough for Ava. Then we discussed some of what we can expect while we are here. Baths and wrapping are number one. Ava will get 3 baths a day to start, decreasing when she is ready. They will also do some blood work and then when her skin is clear, we can start trying to identify the triggers. He also talked about testing for a gene mutation (filaggrin) because eczema does run in my family, with my mother still suffering to this day. Depending on the results, we might know more about how long Ava could suffer.

Next, our nurse for the day came in along with the child life specialist. She brought Ava a bag full of bath toys, some books and her favorite thing thus far, a big bouncy ball. The nurse took us down to the triage room where we did all of Ava vitals. Then Dr. Lanser and Dr. Hauck examined Ava while the nurse took some cultures from Ava’s skin and nose. She was scratching the whole time, so the doctors wanted to get her in to the bath ASAP.

We started the first bath around 11:45. Ideally, Ava would be in the water for 20 minutes. I have had trouble with this at home because she just doesn’t like taking a bath. This is to be expected when her skin is in it’s current condition. She screamed for the entire bath, but the nurse and I held her in for the whole 20 minutes. Then came the tricky part. As quickly as possible, a very low dose steroid is applied to sensitive areas and a slightly stronger steroid to the rest of the body. Then wet tube socks are put on the arms and then wet, one-piece, footie pajamas over that. This is followed by dry socks on the arms and legs, followed by a dry pair of sweatpants and a sweatshirt. Next, the head and face are wrapped with a very long, wide piece of wet gauze. This is held in place by a piece of stretchy mesh, with a hole cut out for her face. Here is what she looked like when we were done:

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She ate a little bit of lunch and shortly after, fell sound asleep. It was the longest nap she has taken in quite a while.

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The wraps are to be kept on for two hours. Ava slept a little longer than that, so we removed them when she woke up around 2:30.

Dr. B (he has a very long, difficult name and I can’t find the paper right now to look it up) came in next. He travels all over the country to talk about the program here. He expressed the disappointment that many others feel because there has yet to be something similar to the program here started in other locations. Again, I felt so relieved because he told me that I was right not to put Ava on oral steroids as one doctor back home had suggested. They have found that although it might give quick relief (as many doctors and parents are hoping for) once the oral steroid is stopped, the eczema comes back, usually worse than before. All the doctors here have reassured me that their goal is to manage Ava’s eczema without steroids. We have to use them to calm the skin, but with the proper routine, we will hopefully not have to use them long term. Dr. B and I also talked about another frustration that we both share – busy doctors that don’t really take the time to examine the patient and just throw a prescription at the parents with out really explaining anything or ever coming up with a treatment plan.

After Dr. B left, Ava had a photo shoot! A professional photographer comes in to photograph each patient when they first arrive and also before they leave. Ava loved it! She laid so still on the bed, smiling and saying cheese, while the woman took probably 50 shots. She said she has never had such an easy subject.

After that, we had a little time to play.

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After dinner, it was time for another bath. At first, she seemed excited when we went in to the bathroom. I got her undressed and she was waiting by the tub.

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As soon as we turned the water on, she literally ran out of the bathroom and shut the door! It was hysterical. So, she wasn’t excited for the bath (yet). We went through the same routine as before, except we left one foot uncovered so that she could be attached to the monitor tonight.

All the doctors agreed today that Ava is certainly a severe case, but they have no doubts that they can help her. We will see what tomorrow brings. Thank you for reading!

Ava and I arrived in Denver late last night. We had a long day of traveling and were exhausted. Well, I was exhausted. Ava slept on the plane after the first hour or so and was wide awake when we were finally able to get to bed.

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Playing during our flight with our very patient aisle mate.

We have been so blessed to be able to stay with a family here just outside Denver. They are friends of a friend and were so gracious to open their home to us. We have also been blessed with many generous people back in Virginia that have offered to bring meals for my husband and three other children. Several have also offered to care for my children at different times while I am gone. God has provided as usual. Here are a couple pictures of the view from the room we are staying in.

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We leave early in the morning for the first day of the two week program at NJH. I am super excited to get started. Hopefully there will be no more of this itching like in these pictures from today.

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We need to get an early start, especially since it is supposed to snow all night and morning here. I look forward to having many exciting things to write about, along with pictures, in the near future.