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!

Week 1 GAPS diet

I was hoping to update more often, but there just isn’t enough time in the day. With all of the preparation and cooking on top of the usual duties…I find it near impossible to find the time. I do hope that our experience can benefit others though, so I will continue to post as often as possible.

We have completed one week of the GAPS diet. We started with the introduction diet, as recommended for the best chance at healing. Since Ava has so many food sensitivities, she is still on Stage 1. This means she eats stock, meats, veggies and lots of other animal fats. Since the rest of the family shows no sensitivity to dairy, we have added in ghee, yogurt (home made and fermented for at least 24 hours), kefir and butter. Today we added egg yolks.

This past week we ate a lot of soup! It is important to get the stock into the diet, and soup is obviously the easiest way. We also had meatballs, which I served with a gravy made from stock and all the really fatty, gelatinous parts of the chicken or beef. These parts are not the most pleasant to chew on, but they are so beneficial, so pureeing them into a sauce is ideal. The kids loved it!

We have also been drinking a bit of sauerkraut juice each day. Fermented vegetables are chock full of good bacteria to help heal and repopulate your gut. However, some people can react to this, which it appears Ava did. There can be a strong detox effect. I think I gave her too much, too soon, but she definitely had an intense flare up after consuming it. I have given her just the smallest amount (literally a drop) for the past couple of days. I don’t notice as severe a reaction, but I do believe there is some detoxing happening. Right now we really have to evaluate the situation closely to try and determine if she can tolerate the kraut juice or not. If she can’t, it may be a sign of histamine reaction, in which case, things would be even more complicated. We would then try to avoid any high-histamine foods, including leftovers! In a situation like this, people often choose low histamine foods, freeze leftovers right away and ferment all vegetables for as long as 12 weeks. Although others say a histamine sensitivity is a sign of yeast overgrowth.  We will have to keep an eye on things very closely.

We have continued with daily baths. We have been adding detoxing aids such as baking soda or Dead Sea Salt. The Dead Sea Salt has been my favorite. A bath with that, in combination with covering her in a paste of bentonite clay and wrapping, has really soothed Ava’s skin, especially after she had those extremely itchy flare-ups.

Finally, there have definitely been some changes in her bowel movements. It appears that her body is cleaning out her gut a bit.

The really good news is that Ava has enjoyed all the food I have made for her, so I don’t have to fight with her to eat. She drinks her stock from a little tiny cup and loves it!

As for the rest of the family, everyone has their moments, but overall I have to say, it has been pretty smooth. Today was difficult as we were invited to a baby shower and the children and husband we certainly feeling bad about not being able to eat any of the yummy looking snacks. I keep assuring them it is not forever, but that doesn’t always help a toddler.

I’m praying that we see some improvement in Ava’s skin really soon, but I know one weeks on the GAPS diet is not very long at all. So, we will press on!

 

The Next Step

We have been home from NJH for almost two months now. Although improved in general, Ava is still suffering with eczema, intense itching and sub par sleep. We have continued with daily baths, wet wrapping when necessary, creams several times per day and have avoid all the foods she showed sensitivity to: eggs, dairy, gluten, nuts, garlic and sesame. There are still flare-ups for no apparent reason. Something is still causing havoc within in our sweet little girl.

So, after a break, I am going to start blogging again about our next step: The GAPS Diet. For those unfamiliar, that is Gut and Psychology Syndrome. Very basically, Dr. McBride, the author, after treating many patients with the intention of healing their gut, has cured them of many different ailments and disorders. This includes eczema. The idea is that the state of our digestive system plays a huge role in our overall health. Her book is very interesting, but there are too many details to go into here. Please visit her web-site if you would like more information: http://www.gapsdiet.com/

I have read many success stories from people that have embarked on this intense diet. I have known about it for a long time, even before Ava’s issues. I have intended to start the diet for at least a month now, but for one reason or another, we were delayed. Tomorrow is the day, though.

I have prepared quarts upon quarts of broth from pastured chickens and beef. This broth will be the staple of our diet for a while. It is healing and easily digestible. We will also be eating well cooked vegetables, such as broccoli, butternut squash, zucchini…and also lots of fat. Animal fats and ghee (which is the first food introduced after Stage 1). If you are interested, I will update on our progress and what we have eaten for the day.

I am excited to get started, but I nervous at the same time. I will be disappointed if this does not help Ava, but I have to try. Either way, I think it will be good for all of us. Yes, all 6 of us will be doing the diet together!

Here are some pictures of the food I have been preparing:

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A very large beef heart.

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I did the chicken stock in the Crock Pot

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Ghee

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Beef stock

Thank you again for reading and if you continue to follow, I hope our experience is helpful!

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.