This is Adriana's Story

In February of 2005, we noticed that our 17-month-old daughter, Adriana, was coughing excessively. As concerned parents, we took her to the emergency clinic several times. Each time, the doctors prescribed antibiotics for a sinus infection. Since this treatment didn’t work on Adriana’s cold and cough, we decided to consult an allergy specialist. The results were negative.

We then consulted a homeopathic (natural medicine) doctor, who thought that Adriana was dealing with a resistant sinus infection and prescribed natural medications — which also didn’t help her condition. That series of events led us to Children's Hospital.

The doctors there thought Adriana was suffering from asthma related to some unknown allergies, so they prescribed a daily pump and sent us home. I knew my daughter did not have asthma and couldn't understand why the doctors came to that conclusion. Suddenly she started gaining weight. That is when our nightmare began.

Adriana got very swollen around the abdomen, legs, feet and ankles, and her face was completely swollen. She continued to gain weight, and one morning she woke up with eyes so swollen that we couldn’t see their green color. During the next few days, Adriana no longer wanted to walk or eat and had a hard time breathing. Also her urine output had diminished quite a lot. I felt hopeless and desperate. I could see and feel the pain in her eyes and will never forget those sad little eyes looking back at me, crying for help.

Finally after many tries with the medical world, I was able to get an appointment with Adriana’s pediatrician on June 8 (she had been away on vacation). After the examination, the pediatrician told me that Adriana needed medical attention immediately and prepared papers to send her straight to Children's Hospital. She mentioned that Adriana’s body was filled with water (edema) and thought it had already reached her lungs. As I was leaving her office holding my child in my arms, I was numb, but I knew, at that exact moment, that my life had changed forever.

I called my husband and tried to explain the situation. I believe that I was speaking a different language, because I recall him screaming back at me to calm down because he didn't understand one word I was saying. We rushed Adriana to the hospital and that night the doctors performed multiple tests on her including lung x-rays and an ultrasound of her kidneys. They suspected that she had Minimal Change Disease, which was confirmed by the results. The doctor gave us a brief description of “Nephrotic Syndrome” and started her on Prednisone immediately along with an antibiotic to prevent infections from the water and urine she had retained inside her body. We went home the next day.

Things did not go easily from that point. There was no improvement after a couple of days of Prednisone, and Adriana gained more weight and was not urinating. When we returned to Children's Hospital, the doctors decided to admit her. It was a very hard week for Adriana, with the doctors checking on her constantly. She had an IV inserted in her arm to administer medication to help her eliminate the extra fluids that had accumulated in her body and to avoid infection. At my daughter's bedside night and day during that week, I prayed hard and asked God why she was so little and already in so much pain. During that week Adriana lost between six to seven pounds of water. We had to change her pamper practically every one hour for a while. Finally after one week we went home and continued with the Prednisone. Adriana did well for the next week — spilling protein from 4+ to 3+ to 2+. When her protein rose to 3+, the doctors decided that it was time to perform a kidney biopsy to search deeper.

On the day of the biopsy, July 20 th, I remember feeling numb. It was a hard day for Adriana and the rest of our family. On Monday, July 25 th, we got the results and were devastated to learn that Adriana had FSGS. I can't explain to you what it feels like as a mother when someone tells you that your child has FSGS, it's a chronic disease, and I am sorry but there is no cure. It was like a knife had just pierced slowly through my heart. The ache was so intense that there was not enough air in the room to breath.

We were devastated, confused and mostly frustrated because the cause of this disease was unknown (idiopathic). For the first time in my life I had no words and was afraid of what was going to be said next. Adriana diagnosis of FSGS made me feel as if I had been condemned to a slow death.

Adriana was put on Tacrolimus, Enalapril and continued with Prednisone and Apo-Pen-VK, an antibiotic to fight against infections. She had several blood tests each week, and I remember her little arms being bruised from the needles. After a while, she started responding to the medications and her protein started dropping. When the doctors stopped the antibiotic, we were relieved because Adriana’s little body had fewer medications to cope with.

In the beginning, the medications made Adriana very nauseous. One night we got really terrified because she was trying to vomit and almost suffocated. I had to literally hit her back a couple of times to help her remove the solid foods obstructing her throat. Since that night she has been sleeping in our room. I made sure she was comfortable at night and spent countless hours staring at that little face, wishing a million times that I could go through the pain instead of her. After a while, Adriana’s body got used to the medications. Now, when she gets a bit nauseous, it is less severe than during the early days.

After many blood tests with positive results and months of struggle, Adriana’s doctors decided to lower the amount of Prednisone. She started at 25 ml and went down gradually to 6 ml. They plan to remove it completely in the beginning of December. She will continue taking the other two medications for a minimum of one to two years. Tapering the Prednisone has diminished her mood swings, and that has helped all of us.

When Adriana was first diagnosed at 17 months, she jumped from 22 pounds to 34 pounds in two weeks and now at almost two years of age, she is back to a normal weight of 26 pounds. She is a very active little girl. Even if at times we get scared of what the future has in store for us, we are also very grateful that the medication is working well for our daughter. Hopefully one day she will be medication-free and live a normal life, but for now this is part of our daily routine.

I beg God everyday to help cure our Adriana and help me through this pain devouring my heart. Many prayers from family members, friends and church members have helped us along this hard road. I believe that my daughter is strong enough and we have faith in her ability to fight this disease like a champion. Her doctors have been great and are there to answer any questions or concerns we have. Every decision they made about Adriana's health had a positive result. Today her urine protein is negative, and her blood levels are normal. She takes follow-up blood tests from time to time and will need to do so for a while.

Thank you for listening to our story. I hope that it can inspire and comfort you if you are going through a similar experience with your child. Please remember that there is always a reason to stay positive. There is a light at the end of the tunnel and no matter what awaits us in the future, we will hold on to that light when we feel helpless. Keep your faith in God and in your doctors and fight this disease with your loved ones without hesitation, because they need us for better or for worse. We will keep you posted on Adriana's ongoing battle against FSGS.

If you would like to contact Adriana's mother, please email begonia.montero@videotron.ca.