Getting ready (or trying to)

Welcome! I started this blog to document my trip with Ava to National Jewish Health Atopic Dermatitis Clinic in Denver, Colorado. This clinic is known across the country as the place to go when your child has been suffering with eczema and despite all your best efforts, can find no relief. That is where we find ourselves.

A year ago, when Ava was 3 months old, her cheeks started getting red and they appeared chapped. I thought it was just the winter weather and applied cream. Instead of getting better, things got worse. The redness spread to her whole face. She would scratch herself all day and night. Even covering her hands was useless, because she would just rub her face and still do damage to her skin. Her skin was red, inflamed, weeping and bleeding. She slept very little and so did I.

I realized that I wasn’t getting very far with just applying cream. There was something more going on here. I took her to the doctor and she really didn’t have much to say, but did confirm my suspicions that it was eczema. She gave me some steroid cream and sent us on our way. I applied the steroid cream, although I was hesitant, but didn’t really notice an improvement. Even if the redness was slightly less, Ava was still itching.

She itched all of the time. I held her all day and night to keep her from damaging her skin. The best that I could, anyway. We changed laundry detergent several times. There was no change. I went on an elimination diet, giving up dairy, egg, gluten, soy, nuts, fish, citrus…still no real improvement. The itching continued.

I took her to the chiropractor, who had been able to clear my daughter Violet’s eczema in just two visits. I thought for sure this would help. It didn’t.

I finally took her to an allergist. By this time, the eczema had spread to Ava’s entire body. She had staph on her face. He had a whole regimen worked out and as much as I pleaded for tests to find out what was bothering her, he told me we had to wait. So I did what he suggested. She did improve, but as soon as we stopped the medications, she immediately got worse again. I wanted to find out what was causing this, but the doctor just told me to continue with the steroids and the anti-histamines. I am not comfortable with that as a long term plan. There is something causing the eczema and I need to find out what it is and remove it from Ava’s life.

I tried another allergist. She agreed to do a scratch test, but only for a very limited number of foods. Ava showed a sensitivity to egg, dairy and peanuts. However, the doctor said that really didn’t mean much. That only told us that those things COULD be causing her eczema to flare up, but wasn’t necessarily the cause. Not very helpful. More prescriptions for steroids, anti-histamines and antibiotics. I used them and noticed no improvement.

At this point, I felt helpless. We kept slathering her with cream and giving her baths. Any relief was temporary. I was beginning to notice a frustrating trend. Some days, she actually didn’t look too bad. Her skin had an amazingly quick recovery time. It actually looked like she was clearing up. She was happier. Maybe whatever cream I was using at the time was helping. However, the improvement was always short lived. For no apparent reason, just as quickly as she improved, she got worse again. There was absolutely no rhyme or reason to it.

I searched the internet relentlessly. Someone had to have been through this and have some answers. I first read about NJH in Denver on a blog. It sounded great…but it was in Denver! Then I read about it on another blog. I joined a Facebook group for parents with children suffering form eczema. Several people in that group had been to NJH. Everyone that had been through the program said the same thing: this program changed our life! Yes, it might be far and expensive, but you have to find a way to go if you have not been able to get any answers. So, we are going. I am nervous about the flight and about being in a city that I am completely unfamiliar with. But I really do have hope that this is the best thing for Ava. Her suffering needs to end and we have to do whatever we can to make that happen.

We will be in Denver for two weeks, ten days of that will be spent in the hospital. I plan to blog about what happens, along with pictures. Many people have shown interest in our experience, so I thought this would be the best way to keep everyone up to date and document it for myself. Maybe it will help someone on the future.

Thanks for reading. I look forward to this adventure and would certainly appreciate prayers for results and our safety!

Oh, I almost forgot, I have to credit a good friend of mine for the name of the blog. You know who you are!

Here are some recent pictures. I don’t ever post any pictures of her, but we should have something to show what she looks like before the program. These are not pictures of her at her worst, but they still show how miserable she is. Hopefully we will have some happy pictures of her soon!ImageImageImage

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7 thoughts on “Getting ready (or trying to)

  1. Really excited for you to go there. We are hoping to take our 15 month old son there soon. He’s been suffering for over a year now. We’ll be praying for you and Ava!

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