Update

It has been a very long time since I have posted! I hope that there is still interest in following our quest to get some answers to why Ava suffers so with eczema.

I believe the last I wrote was about our first week on the GAPS diet. We continued the diet for about 8 weeks without any improvement. In fact there were periods when things were worse. HOWEVER, we have learned a lot since then, which explains why Ava may have been doing so poorly on GAPS.

1.) We have discovered that she is sensitive to onions, garlic and cabbage – all of which she was eating in abundance on GAPS. It could be an issue with FODMAPS.

2.) Her symptoms/reactions are consistent with histamine intolerance and GAPS is very high in histamine.

3.) Testing we have completed since doing GAPS has shown that Ava does have chronic colonic inflammation and digestion issues. Additionally, her liver function is not optimal.

I really needed a break and was just generally frustrated with thinking about food so much. I simply limited her diet to what she could eat, but didn’t stress about making special foods.

I was taking Ava to a TBM (total body modification) practitioner towards the end of last year. We did see some improvement. She had periods of clear skin (75% of her body) and she recovered from flare-ups much more quickly. Then it was Thanksgiving, Christmas and all of that…along with sickness, it was tough to get the schedule worked out. I was able to finally take Ava to an appointment this past week and hopefully we will be able to continue without a big break like that again.

The TBM has also shown that digestion, liver function and histamine are a problem for Ava. So, along with continuing with the TBM, I know that I also have to heal her gut and that means we go back to GAPS or some form of it. I will have to start with a low histamine, low FODMAPS version of GAPS, which will be challenging. Not to mention the other foods Ava needs to avoid that are GAPS foods (such as eggs and dairy). It will be limited at first, but I am really hoping with this new information and the right supplements, we will be able to see improvement.

Additionally, there is a doctor that has been recommended to us that does something called Low Dose Allergen Therapy. He is very expensive and a couple hours away, but the possibility is on my mind. I have heard that some very tough cases of eczema, like Ava’s, have been helped by this therapy when nothing else was working.

Finally, I am considering gene testing to determine if Ava has any gene mutations which might cause certain functions of the body to be impaired (for example, how quickly her cells are able to repair – this clearly seems to be a problem to my untrained eye).

I have always hoped that this blog could be helpful to others going through the same difficulties, even if it was just a new idea that might lead to some answers. I appreciate you reading and any feedback!

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 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!

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!