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Kaily's Story

My name is Kaily Barbre I am 17 years old and I am a junior in high school. I was diagnosed with D.R.E.S.S. the summer going into my sophomore year of 2014. In June of 2014 I started taking a 30 day course of Bactrim for my acne. My dermatologist thought it would give me a boost in fighting my acne.

 

On day 28 I started feeling like I was having bad indigestion, along with a loss of appetite and overall not feeling right. My mom, Kindra, told me to skip that dose for the day and see how I was feeling the next day. The next day I was nauseous and feeling unwell all day and that night I started vomiting. My mom just assumed I had the flu and thought we should wait it out. The vomiting and high fevers of 103.5+ continued for 3 days. By the end of the third day I was not getting any better. My uncle who is a paramedic came over and gave me two IV bags. While he was giving me the IV’s he noticed a very small rash on my arm and asked about it, but I didn’t think it was anything. I was very dehydrated and the fluid my uncle gave me still did not give me any relief. At this point my mom knew I needed to go to the hospital. When we got there I was extremely dehydrated, I hadn’t urinated in 24 hours and hadn’t eaten in 3 days. It hurt to breath, and I was having upper abdominal pain. I was also still vomiting and running a fever. While we were there my cheeks started to get red and a rash was starting on my cheeks, hands, feet, and arms. The nurse practitioner that we saw said I had a virus, and “hand, foot and mouth disease” and that I was fine to go home after receiving more IV fluids. My family and I had thought this was weird considering when she asked what medication I was on and I said an acne medication she immediately said, “oh well this wouldn't cause your symptoms” and sent me on my way.

By that night I had very swollen lymph nodes all over my neck and body. I was still vomiting and was extremely dehydrated and my “hand and foot rash” quickly turned into a rash that was over my entire body including the inside of my mouth. The following morning my mom's motherly instinct knew something wasn't right and she and my father, Josh, took me back to the same hospital. This time I thankfully had a new Doctor that was over seeing me and he said “I don't know what is wrong with you, but I know you shouldn’t go home.” He immediately had me admitted.

After getting blood work done we found out that my thyroid was sluggish, my liver was enlarged causing jaundice and hepatitis. My enzymes were up, and I had a raging rash all over my entire body including the inside of my mouth, bottom of my feet and groin area. The next day I had a HYDA scan that showed that my gallbladder was working at 14%. During this first 24 hours in the hospital they started me on morphine. The doctor that was over seeing me had no idea what was wrong with me. She thought that I could have MONO and Hepatitis B. They made everyone who entered my room wear a gown, gloves and mask, in case I was contagious. They told my parents they had to wear the same attire in order to be in the room and thankfully my parents declined. They knew it was something else. 36 hours after being admitted the doctor had a diagnosis of DRESS Syndrome. My parents were so relieved that there was a firm diagnosis. And along with the morphine they started me on IV steroids at 75 mg of Prednisone.

 

At this point my face had swelled up. My mom said I looked like I had been stung by 100 bees. I was still not eating and the doc told me that if I was not eating by the next day they would have to put in a feeding tube. The next morning I woke up and actually had a small appetite. The sores in my mouth were so painful that in order to eat and drink I had to swish with a lidocaine rinse, that only gave me about 5 minutes of relief. I was able to drink about 5 spoonfuls of broth (so no feeding tube for me)! That night the cafeteria staff brought me a Mexican dish with enchiladas for dinner. We had to laugh.... what were they thinking? ☺ It hurt so bad to walk from the sores on the bottoms of my feet. But, luckily there was a Target nearby and my dad went and got me the softest slippers he could find just so I could walk 6ft to the bathroom.

 

The steroids started to kick in and I very slowly started to improve. At the end of 4 days in the hospital they felt I was okay to go home. I was sent home with no steroids or any medication and they told my parents that if anything happened at all I need to go straight to Phoenix Children's Hospital. That they couldn't help me any further and that PCH would be able to care for me better.

The next morning I was right back to where I started, throwing up and in so much pain it hurt to cry. I was running a fever again and my mom said I am taking you to PCH. My parents quickly gathered some things knowing it wasn't going to be a quick in and out thing. When I arrived I assume I looked sick enough because the nurse didn't even let me sit down before she took me back and had a doctor in the room within 10 minutes. I knew I looked pretty bad because the nurse asked my mom if she had a picture of me on her phone so she could see what I actually look like for comparison. After I was admitted again, I was assigned a Dermatology team. I had to undergo testing to cover my gallbladder, liver, thyroid, heart and blood. I was still on IV fluids and 75 mg of prednisone. I was in so much pain at the time that I had to be covered in ice packs just so I could bear the pain and heat coming from the rash. I got horrific headaches that even the morphine wasn't helping. While I was there they found out that my heart enzymes were elevated.

My dermatologist was thankfully knowledgeable by seeing only one other case of D.R.E.S.S. in her career. She was the one who brought in all the new med students so they could know more about it and be able to properly diagnose patients! They got to see me go from so swollen and unrecognizable to a more upbeat teenager. These students got to see my tongue peel, my skin bleed from itching, my swelling, test results, and since I had to be covered in steroid creme daily they got to experience that. The whole time I was thinking that this is so cool! Here I am thinking I could die and these med students get to see this so they can diagnose someone and save lives. I ended up staying at PCH for four total days and was released once my Echocardiogram was done and cleared. I went home the end of the fourth day on 75mg of prednisone, medications to help with the itching and sleeping and creams that my mom had to rub all over me twice a day.

 

I had weekly appointments with dermatology, Endocrinology and a lot of blood work. During this time I had an endoscopy because I was having terrible reflux. They wanted to check and make sure nothing else was going on. Luckily it was just reflux and on another medication I went. I tapered off of the prednisone over a period of about 6 months. I relapsed twice when my Liver enlarged and my enzymes elevated.

I now have no skin scarring, but I do have skin problems. It has been over a year and a half and I still occasionally see dermatology at Phoenix Childrens Hospital for the small rashes on my neck, arms and scalp, and painful bumps and blotches I still get on the palms of my hands. If I'm not careful with the sun I get rashes and certain products cause rashes too. I had thyroid problems for months; but they finally stabilized and are good now. I have Very low vitamin D which causes me to get extremely tired if I don't take my prescription vitamin D every week. After the D.R.E.S.S my immune system was horrible, I get strep throat all the time and I easily get sick with colds. In one way or another I was sick almost every other week for the first year. The steroids caused a 30 pound weight gain that I’m still chipping away at. I even had to have a medical document on file at school for my sophomore and junior year so that I could miss as many days as I needed to from being sick and appointments. It’s only been recently that I feel like I am almost back to normal.

One of the hardest things now is I get doctors that don't believe me and question what I had. The frustration from going through hell and a doctor stand there and say “are you sure this is what you had?” It makes it hard to tell people because the public is so uninformed about the common day medicines that they take. They are dumbfounded when medicine fails us. However I am glad to report that because of the close watching and my team of doctors I am able to be a Cross fit athlete and go to school. I consider myself extremely lucky to be alive because at the time I truly thought I could die. I was in so much pain and misery that I thought I was going to be dead. Since D.R.E.S.S, I take life like it's a precious gift and I love sharing my experience because I get to show people that just because a doctor says its ok doesn’t mean its ok. We need to be aware of these drugs and what they do to our bodies and how truly dangerous they are!

Thank You for letting me share my life chapter -Kaily L. Barbre