I decided to write this post because I have had so many people asking me what is going on with Meredith and I think it is so much easier to explain it once, rather than go through it many times. Hopefully it won't be too long and if you read it all, thank you!
Our sweet, 8 year old Meredith has suffered from eczema since she was three months old. Meredith has atopic dermatitis, which is an autoimmune disease and is the most severe form of eczema. If you have ever had eczema or itchy skin imagine that aggravating itch being 100 times worse with bleeding, oozing, burning and pain. This is what our sweet girl deals with on a daily basis and despite being told that she would hopefully grow out of this by now, she hasn't and we have been told it is likely at this point that she won't.
When Meredith was three years old she was hospitalized due to a severe infection from her eczema. This infection basically grew over her mouth and she began to not be able to open her mouth. She wouldn't eat or drink and she was very sick. We ended up in the hospital for three days where she received multiple IV antibiotics, prednisone and IV fluids. Here are a few pictures from that event.
After this we were referred to a specialist at Duke Hospital for Pediatric Dermatology. That's when we met Dr. Diana McShane formerly of Duke Pediatric Dermatology. She is currently practicing at UNC Chapel Hill Dermatology. Since March 2011, we have visited Dr. McShane and other specialists in Durham and Chapel Hill every 3 months. Meredith has been prescribed everything under the sun, topically, including, Loicoid Lipocream, Fluocinonide, Mometasone, Fluocinolone, Cordran tape, Betamethasone, Clobetasol, Halobetasol and Protopic just to name a few. We have tried every lotion and body wash including CeraVe, Aveeno Eczema Therapy, Eucerin, Aquaphor, Cetaphil and most recently SkinFix. She is currently using about 8 different steroid ointments, 4 oral medications and 2 inhalers. We have spent thousands and thousands of dollars on medications, ointments, creams, bandaids and "ideas" to try to help her. In the past two years Meredith has also begun experiencing emotional and mental effects of this disease. She gets depressed, anxious and constantly talks about how she feels "different". She has been picked on, stared at and treated as if she has a contagious disease. We have been judged and accused of abusing our child by people we don't even know. Meredith is currently seeing a great counselor and we are beginning to see a little improvement in her anxiety. Meredith not only suffers from eczema, she also suffers with asthma, pelvic floor dysfunction and irritable bowel disease.
Last week, Meredith began to show serious symptoms and was having pain when walking. This is what Meredith's skin looked like last Thursday morning. These are just a few pictures. This stuff is everywhere!
Creig took Meredith to see her Pediatrician, Dr. Butler on Thursday. Dr. Butler informed Creig that Meredith needed to see a dermatologist as soon as possible and she could not go back to school until she did as she was concerned about infection. We knew Dr. Olson, at Carolina Dermatology, Laser and Vein as I had seen him before. He had told me in the past that he would be glad to see Meredith in the future when Dr. McShane was ready to have someone local work with her on Meredith's case. Well, it was time. Dr. Butler called for us and was able to get Meredith an appointment at their Charlotte office for Friday morning. I took Meredith to see Dr. Olson and he reviewed Meredith's medications and examined her skin.
Dr. Olson informed me that we have exhausted all of our topical options. We have used every possible steroid and non-steroid ointment. We have used every possible home remedy including bleach baths and wet wraps. Dr. Olson informed me that at this point we have two options regarding treatment for Meredith, 1) phototherapy and 2) systemic treatment. He informed me that there are risks to both treatments and asked me to spend the weekend researching the options and discussing these options with Creig. Dr. Olson ordered blood work for Meredith, which we had done in the lab. He wanted to test her hepatic function, CBC, CMP and TB (tuberculosis). He informed me that this is necessary in case we choose the systemic treatment in order to know what Meredith's base line is.
I spent hours on Friday afternoon researching these options and Creig and I have talked about these over and over again. We have spoken with Meredith's pediatrician, Dr. Butler. We have spoken with a wound care specialist, Dr. Wise and we have discussed all of this with our family.
So, here is the quick break down of each option...
Option 1: Phototherapy
Phototherapy is treatment using light, specifically UVB. This treatment is like standing in a tanning bed for a period of time, which increases throughout the treatment. This treatment would include going to Charlotte 3 times a week for two months. This treatment can reduce itching, increase Vitamin D production, has an anti-inflammatory effect and can increase bacteria fighting systems in the skin. This sounds great, but often insurance companies will not cover this treatment and if it is covered there will be high co-pays that must be paid at each visit. There are also risks that we must consider, including: burns, increased aging, increased risk of skin cancer and eye damage. This treatment works for about 60% of those who are treated and it does not work for everyone. When it does work, it usually puts the condition into remission for a period of time, but it will come back.
Option 2: Systemic Treatment
This treatment would be injections of Humira or Enbrel. These medications are immunosuppresants. These injections would likely help the eczema clear up and possibly allow Meredith to stop taking the other oral medications. There have been very, very little studies done related to using these medications in children and there are some serious risks. Serious infections can occur, including tuberculosis and infections caused by viruses, fungi and bacteria that can spread throughout the body. Some people have died from these infections. For children or adults taking these medications the chance of getting lymphoma or other cancers are increased. There have also been cases of unusual cancers in children, teenagers and young adults, often resulting in death. Other side effects include: hepatitis B infections, allergic reactions, nervous system problems, blood problems, heart failure, immune reactions including lupus-like syndrome, liver problems and psoriasis.
Meredith is already immune compromised due to this disease, so taking an immunosuppresant medication would put her at an even greater risk. We also consider the fact that lymphoma has run in Creig's family, which already puts her at risk for possible cancers.
At this point, we believe our best option is to first try the phototherapy, pray that it works and works for a while and then consider the systemic treatments if the phototherapy does not work. You can get more information about atopic dermatitis and treatments at www.nationaleczema.org.
Also, if anyone knows someone who has experienced either of these treatments with their children we would love to somehow correspond with them to discuss their experiences.
Most of all, we would greatly appreciate prayers. Prayers that we make the right decision for Meredith, prayers that treatment works, prayers that she soon gets some relief and prayers that her anxiety will decrease.
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