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!

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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 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:

ImageImage

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.