Day 10 National Jewish Health Atopic Dermatitis Program

I know this is very late…it’s Tuesday night and we were done with our 2 weeks at NJH on Friday, 4 days ago now. I was just too busy packing Friday night and spent all day Saturday traveling. If I was alone, I could have sat in the airport and posted then, but by the time we lugged all our stuff to be checked, then through security, we needed to eat something and Ava was not about to let me rest. She kept me moving until the last second before we got on the plane.

Truthfully, there really isn’t much to be said about our last day. We didn’t do any food challenges. Again, it was remarkable to see the rapid changes in Ava’s skin. She looked pretty clear before we left for the hospital that morning, but as soon as she saw the doctors coming, she would flare up! Her skin was changing minute to minute. It is quite obvious that her eczema is greatly affected by her emotions. It’s also clear that food challenges are so hard to decipher when the skin is changing so frequently. So on Friday, we really just waited to be seen by Dr. Rabinovitch, made sure we had all of our papers and supplies and said goodbye.

In the end, I think we made the right choice. I now know how to care for Ava when she has a flare up, so her skin will hopefully never be as dry, inflamed and broken again. It is so helpful to know the most effective wet wrapping techniques and how many baths she needs per day depending on the state of her skin. We left with having to avoid more foods than I was hoping we would. The final list is: gluten, dairy, eggs, all nuts, sesame and garlic. I am still planning on healing Ava from the inside out and will attempt the GAPS diet.

Another important factor that I want to address is the emotional aspect of the trip. In no way do I want to discourage anyone from going to NJH if your child needs it. I do just want to stress how important I think it is for you to have someone go with you! I was so exhausted by the time it was all over and would have greatly appreciated some help. The family we stayed with was wonderful, but they couldn’t come with me to the hospital. They still had to go on with their daily lives of work, school, appointments…Of course, it could have been coincidental, but yesterday I suffered the worst migraine of my life so far. Luckily, I usually only get one or two a year, but when I do get one, it is bad. I was unable to speak or even think and I am so grateful for the friends I have nearby who came and literally picked me up off the floor, where I lay sobbing, and took control of my four children and got me to the ER so I could get some fluid and medicine in me. It’s hard to pinpoint the cause of migraines, but stress can contribute. 

So, in the end, we got some answers, but our journey still continues. I hope to see Ava flare up a lot less. Traveling caused quite a flare up and then our ordeal yesterday also had her looking pretty rough this morning. Again, I know how to calm it down now, and she was looking much better by bedtime. Ava is still very young, which can make things even more unclear when it comes to tests and food challenges, we need to be super strict about what she eats, so that we can hopefully clearly identify what foods are irritating her. If you are interested and wondering if the GAPS diet will actually help, stay tuned, as I plan to document this as well!

Thanks for reading!

Day 9 National Jewish Health Atopic Dermatitis Program

Sigh. No food challenges again today. Although Ava’s face looked better, today her legs looked like this:Image

Why? Good question. I wish I had the answer. The nurse, doctor and I reviewed everything that Ava had eaten for dinner last night and breakfast this morning. Last night she had sweet potato, ground beef, green peppers and corn. This morning she had a banana and some rice crackers (I didn’t want her to eat too much in hopes of getting to do the food challenge.) The rice crackers were vegetable flavored, so they had some onion, garlic, green pepper and sunflower oil in them. Oils don’t generally present a problem because they contain no protein. The doctor decided he wanted to do some skin tests for the foods she had eaten recently since they were items that are not generally tested (the usual allergens – egg, dairy, soy, etc.) So, we did skin tests for onion, garlic, green pepper, corn, banana, the rice cracker, sweet potato and dog (again since we have been staying in a house where a dog is present). The only thing that showed any reaction was garlic. Apparently, they see quite a few children with a sensitivity to garlic. She didn’t have a huge reaction, but was it enough to cause such a flare up? Who knows.

That was it for the day. I gave her a bath and completely wrapped her before leaving the hospital around 2pm. She took a nap in the car and when I unwrapped her, she did look better. However, at bath time tonight, her legs and feet were pretty red again. And her skin is bumpy. I have not seen her eczema look like this before, but the doctors didn’t seem to think it was anything strange. It is frustrating that after she had such rapid improvement the first week here, we can’t seem to get this flare up under control. Tomorrow is our last day and unless Ava drastically improves, we will leave without doing any more food challenges.

Day 8 National Jewish Health Atopic Dermatitis Program

Well, there is not much to report today. Ava had her bath and head wrap before we left for the hospital. We got there just about 9am and were able to remove her head wrap about 9:45. At 10am, I met with Dr. Lanser, Dr. Darr and one other doctor who is the attending for the month of February (but unfortunately cannot even attempt to spell his name right now). We discussed Ava’s discharge report since Dr. Lanser will not be available for our last two days. This just lays out the guidelines of care – how many baths when her eczema is severe, moderate, mild or maintained, a review of her food allergies, methods for keeping her from scratching. Unfortunately, the doctors determined that we could not attempt any food challenges again today. Ava’s face and neck were still too red and her right eye looks quite swollen. So, we discussed what challenges were most important to try and fit in. Depending on how she looks tomorrow, we will hope to challenge baked dairy first. That leaves sunflower butter (as an alternative to nut butters) and sesame. Of course, our ability to get all three of those done hinges on how clear she is tomorrow and whether or not she will have another flare in reaction to the next challenge. The possibility of me staying longer was even thrown out there, but I have to get home. They also asked about me coming back to accomplish more food challenges.

So, that’s it. There was a class about Atopic Dermatitis at 3pm, so Ava and I did some window shopping and had some lunch. We returned to NJH for the class and although a lot of it was information I already knew, I did learn a bit about trying to control dust mites and about some products that may be helpful to us.

The truth is, it was a disappointing day. However, Ava was looking much better tonight, so I am hoping to at least challenge baked dairy tomorrow. And praying that she does not flare up again!

Day 7 National Jewish Health Atopic Dermatitis Program

We were up early for a bath first thing this morning, since the doctors wanted Ava completely wrapped before getting to the hospital to leave us more time to do food challenges. I had her all wrapped up by 7:30am, so we could unwrap her at 9:30am. Dr. Lanser came by to see Ava shortly after that and determined that we could not do the food challenge for baked dairy as we had planned today. Ava’s skin was still too flared up. He just wanted us to do a mid-day bath, with the full body wrapped. We spent some time discussing why her skin would still be so red, mostly her neck and face. Of course, there is no absolute answer. It could be that her body is still dealing with the egg from yesterday. Since I am still nursing, it could be that I ate some dairy. (The doctors at NJH seem to be on the fence about whether or not what a nursing mom eats can cause eczema in her baby. I didn’t know that was still up for debate. They say we just can’t know for sure.) Or it could be something else altogether.  We planned on a bath at noon.

In the meantime, we went to a parent group discussion. Today’s topic was Hopes, Goals, Worries and Coping. We talked about what we were hoping to achieve in coming to NJH, any worries or frustrations we had about the program or about our children’s chronic illness in general and different ways of coping with the difficulties that come with having a child with a chronic illness. All of the other parents had older children, so things are a little different for them. Ava is still young enough that I can control her and she can’t tell me no! At the same time, she can’t tell me how she feels, if something in particular makes her itchy, etc., etc.

When the group discussion was over, I started the bath for Ava. I had her wrapped up before 1pm and she fell right asleep for two hours! It is great to finally have her napping.

While she slept, Dr. Lanser came in to give me our preliminary home management plan. He will not be available on Thursday or Friday, so he wants to meet with us tomorrow before he leaves. We will make changes to this plan as necessary and will continue (hopefully) doing food challenges through Friday. We talked a little bit more about Ava’s flare up. I wanted to discuss her food challenge to gluten, as I had some doubts about the results. When we challenged gluten on Friday, I definitely noticed  an increase in her itching. Her skin never flared up, so the nurses determined that she was able to tolerate gluten. However, I pointed out to Dr. Lanser that she has now been eating gluten (I bought her some wheat crackers since gluten-free crackers often contain nuts and/or sesame), but avoiding nuts, dairy and egg, and her skin was not seeing any improvement after repeated baths and wrapping. He agreed that it could be possible that the dosage of gluten she consumed on Friday may not have been enough to flare her skin, but now that she has been eating it for a few days in a row, she has had too much and her body can’t tolerate it. With these types of food allergies, we are not dealing with an anaphylaxis situation. So, she had an obvious reaction to egg almost immediately, but it is possible she is able to tolerate small amounts of gluten before she starts to exhibit any signs of reaction. Again, there is no way to know for sure. Dr. Lanser thought it would be best to eliminate it for now, clear her skin again and at a later date, when there is no chance of confusing the reaction with that of one to another food, challenge gluten again.

So, I am trying to remain positive. I was hoping to leave NJH with Ava able to eat more foods, having determined what exactly she is sensitive to. We are determining what she is sensitive to, but unfortunately, it’s turning out to be quite a few things. Peanuts, tree nuts, eggs, dairy and gluten are all to be avoided. All while trying to put weight on her! I am now preparing myself for the possibility of starting the GAPS diet (or something similar) to try and heal Ava’s gut. I have heard many success stories of people eliminating their food allergies with GAPS. It is not an easy undertaking, but I figure it is worth the difficulty for a year or two, so that she is able to enjoy these foods later on. Eggs and dairy especially are such important foods! Now that I have the tools to keep her eczema under control or deal with a flare up, I think it is time to really focus on what is going on inside her body. I needed her to be happier and sleeping well before i could take this on. I will continue to blog about our experience with GAPS if anyone is interested in that!

Here are a couple of pictures of what Ava looked like tonight:

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I just wrapped her head tonight and will do the same in the morning. Traffic has been terrible the past couple of days! Really slow going because of the snow. Tomorrow is supposed to be freezing, with the high only in the single digits! Let’s hope Ava is improved so that we can actually get some food challenges in.

 

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 – arms, legs, head – and 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!