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Thursday, October 25, 2018

Eczema Stinks

Seriously, eczema is a tough disease and Meredith continues to fight against it. We have tried everything! She has had different allergy tests throughout the years to figure out if she was allergic to something. We have kept a food diary and tried to determine if a certain food was affecting her. She has used every topical steroid available, even the black label ointments. She has used oral steroids. She has tried oral medications, including Cell Cept, an immunosuppressant typically used for transplant patients. We have tried all natural alternatives. We have tried any and everything that friends, family, and acquaintances have encouraged us to try. We have prayed!

The #1 thing Meredith struggles with is confidence. As she has gotten older, her appearance has become much more important to her. She is beautiful inside and out, but this disease often affects very visible areas. She has been called names at school, had many people ask her "what is wrong with your face?", and even had kids and adults avoid her because they were afraid she was contagious. I have watched this disease affect every single aspect of Meredith's life; emotionally, physically, and mentally, yet, she amazes me with her strength.

On October 2nd, we made a trip to see Dr. McShane, Meredith's dermatology specialist at UNC Chapel Hill. These are just a couple of pictures of what Meredith was struggling with when we went to this visit.

As I've mentioned before, Meredith has been going to Chapel Hill and seeing Dr. McShane since she was four years old. At this visit, Dr. McShane told us that there was a new drug called Dupixent that had been first trialed with kids and adults with asthma. They are just starting a trial for those with severe eczema/atopic dermatitis. This is an injectable drug that would become a once a month injection. According to Dr. McShane, the use of this drug allows patients to not only have reduction in symptoms, but they don't have to continue use of topical steroids. Meredith was excited. We were excited. So, Dr. McShane submitted a request and preauthorization paperwork for this. Yesterday, we received a letter from the insurance company letting us know that the request was denied for the final time. We can appeal, but they will not allow Meredith to have the drug because she is not 18.  So, after speaking with Dr. McShane, we have contacted the clinical trial administrator to see if Meredith can be a part of that trial. If she cannot, our next step is Cyclosporine, which is another immunosuppressant. Dr. McShane says this drug will affect her immune system, we will have to watch her kidneys, and there are other risks. Creig, Meredith and I will have a big decision to make this weekend as I will be taking Meredith back to Chapel Hill on Tuesday.

In my last post, I shared facts about atopic dermatitis. I want to share some questions that we often get related to Meredith's condition.

1. Is it contagious?
No, it is not contagious! You can't "catch it" from another person. The exact cause of eczema is not know, but researchers have found that individuals who develop eczema typically do because of a combination of genes and some environmental triggers. When an irritant "switches on" the immune system, the skin cells just don't behave like they should. This causes an eczema flare-up. These flare-ups can be minor or severe.

2. Isn't there something you can take or do to make it go away?
We wish it worked that way! It's not like having a sinus infection, where you can take antibiotics and it clears up. Unfortunately, there is no cure. There are treatments, but those treatments depend on the age and severity of the case. Meredith has been diagnosed with severe atopic dermatitis, which has allowed her a few more options when it comes to trying different medications. Treatment options can be over the counter remedies, topical medications, phototherapy, immunosuppressants, and biologic drugs. Some people find success with natural and alternative treatments.

3. Are there triggers?
Yes, there can be. Chemicals, soap, clothing, sweat, and scents can exacerbate the condition. Just touching a surface that had a chemical on it can cause a flare-up. Another trigger can be illness. If Meredith gets a cold, sinus infection, etc. it also affects her condition and can cause a severe flare-up.

4. Why doesn't she just stop scratching?
Itching usually causes scratching, which can lead to the vicious itch-scratch cycle. At times, the urge to scratch can be so intense. Scratching is definitely counterproductive to healing, but sometimes it is done unconsciously. Meredith often scratches in her sleep, which is why she takes certain oral medications to help her rest better and hopefully avoid scratching as much.

It is very important to me that others are educated on this condition. Meredith is so much more than this disease and that's what I want others to see. She is so smart, funny, friendly, compassionate, kind, and loving.

Please pray for us as we discuss our options this weekend and make decisions on our next steps.

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