Exciting News for Meredith

We are so excited and thankful to be able to share that Meredith has been given an opportunity to participate in the Dupixent trial. She has to go through a 3 hour visit with the study physician, have blood work and other tests completed, and we have to sign the Informed Consent for her to participate. As long as everything goes well, she will begin the trial after the initial visit. There will be a good bit of travel involved because the clinical study site is in Norfolk, Virginia. We are blessed to have a great aunt in Chesapeake, Virginia and she is going to let us stay with her when we have to visit the study site. Her home is just 25 minutes away from the study site, so we will be able to get a good night's rest before attending her appointments. We plan to drive back home after each appointment.

We are all very excited, but also nervous. Meredith has a 1 in 3 change of getting a placebo instead of the Dupixent injection. We are praying that she actually gets the medication and that it works. This study has already been completed on adults and adolescents. They had amazing results, so we have great hope that this will be the answer for Meredith.

Please keep us in your prayers as we continue through this journey.

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.

We Love Someone with Eczema!

October is Eczema Awareness Month, so I am going to try to share a little each week about this condition that our Meredith suffers from. I say suffer, because she really does struggle each and every day with this condition. Meredith was diagnosed with atopic dermatitis, an autoimmune condition, when she was just three months old. As Meredith has gotten older, some aspects of the condition have gotten a little better, while others have worsened. When Meredith was four years old, she was hospitalized due to an infection related to her condition. You can read more about that here:  Meredith's Hospital Adventure

After Meredith's hospitalization, we were referred to UNC Dermatology in Chapel Hill.  This began our journey with Dr. McShane who has been following Meredith's case since. Dr. McShane has tried many things over the years with Meredith.  There was a trial that started last year and we were so hopeful that Meredith would get to be a part of the trial. Unfortunately, they decided the children included in the trial had to be over the age of 12. Meredith was so disappointed. Dr. McShane has stuck with us through so much. She has really been an encouragement for Meredith.

We actually get to see Dr. McShane tomorrow. Meredith hasn't seen her in about 6 months and she has lately been struggling with major flares, so she cannot wait to see Dr. McShane.

What is Atopic Dermatitis?

Today, I'll share the difference between eczema and atopic dermatitis. Eczema is actually a general term for dermatitis. Dermatitis means inflammation of the skin. All of the types eczema cause redness and itching, but some will blister, weep, and even peel. There are several different types of eczema. Atopic dermatitis is considered a severe and chronic or long-lasting form of eczema. Each type of eczema has different triggers, symptoms, and treatments. It's important to know why type you have, in order to be able to manage it appropriately. 

What are the Symptoms of Atopic Dermatitis?

Atopic dermatitis is chronic. It does not usually go away in a few days or weeks. For many, this is a lifelong condition. It is very itchy and can cause damage to the skin from repeated scratching or rubbing. It normally appears on the cheeks, legs, and arms, but can be found anywhere on the body. 

Symptoms include:

* dry, scaly skin

* redness

* itching

* cracks behind the ears

* rash on the cheeks, arms, and/or legs

* open, crusted, or "weepy" sores (typically occurs during flares)

Because the skin can become open during flares, infections are common. 

How can Atopic Dermatitis be treated?

Depending on the severity of symptoms, the condition can be treated with:

* topical medications (such as steroidal ointments)

* phototherapy (light treatment)

* immunosuppressant drugs (curb the immune system)

* biologic drugs (target specific areas of the immune system)

* systemic steroids by mouth or injection (used in extreme cases)

Unfortunately, Meredith has experienced all of the above symptoms, plus! She has also tried many different treatments. Some work better than others. Now that she is older, she is much more concerned with her appearance. She has been bullied and picked on at school many times. I am amazed at her strength and how resilient she is. This year alone, she has been called "diseased", "scab face", and more. She came home one day last week and told me that a boy in her grade had made an ugly comment about her face to her. Her reply to him was "thank you" and she kept walking. This girl has gone through more than I ever did as I was growing up, but she still manages to keep a positive attitude, smile on her face, and a kind heart. 

Meredith, I know you will read this. I want you to know that I am so proud of you! You are beautiful inside and out. I only wish I was half as strong and brave as you are. Love you more than you will ever know!