CJ was born October, 26, 2003. 7lbs 6oz healthy and joyful. He was a very happy child who never had any health concerns other than the usual colds.
Shortly after his 4th birthday we started to notice some odd issues with his appearance. He would awake in the morning with puffy eyes. The first month that we noticed it, we thought it was cute. After an hour or so, the puffiness would clear up. After a few months it seemed to progressively get worse.
Roughly in January 2008, CJ’s facial swelling became more noticeable. When he woke up his eyes were almost swollen shut. We brought him to his pediatrician and she suggested an antihistamine and figured it was associated with an allergy of some sort. The antihistamine seemed to work at first and the swelling went down a little. We were told that there was nothing to worry about, since the swelling went away after an hour or so of waking up.
Around the end of April 2008, we contacted our pediatrician and let her know that the swelling had continued and CJ seemed to be gaining weight. He hadn’t been eating more than usual and it seemed a little odd to us. We also told her that we would like to bring him in to discuss his reflux issue that he had had since he was 2. After our visit, she scheduled a stomach x-ray to see if he had anything that was causing his reflux.
When we left for his appointment, CJ seemed to be having his puffiest day. He was almost unrecognizable. I looked at his photos near the door and was shocked at what he looked like just a few months earlier. I grabbed his photo and brought it to the appointment. Something told me that if I showed the doctors at the hospital what he looked like usually, they might be able to find out what was going on.
During his x-ray the doctors kept saying that everything looked fine. When the procedure was over, I took the doctor aside and handed him my son’s soccer photo. He glanced back and forth from the photo to my son and sent us to get a urine and blood test.
We left the appointment and called our pediatrician to let her know how it went. She called the hospital back and made sure that the tests were done as soon as possible. About an hour after returning home, we received a call from the pediatrician. She told us that our son’s kidneys were failing and we had to get to our local hospital right away.
We were shocked. We never thought it would be anything serious. Our son was always so healthy and fit.
When we arrived at the hospital, CJ asked to use the bathroom. He asked me to come with him because he said that his privates hurt when he urinated and that they were “big”. I giggled a little thinking that he was just being a silly 4 year old. When we got to the bathroom and I saw his genitals, I noticed that they were 3 times bigger than they were at his last bath.
After the doctor saw this in the ER, we were sent upstairs and given a room. He was admitted and began steroid therapy. We were told that it could take time for the steroids to work and if they didn’t they would have to give him albumen therapy which involved an IV. After a few days his swelling went down a little and we were released and told that if his swelling got worse, to give our pediatrician a call.
A day later, we woke up and he had ballooned up more than before. He couldn’t barely walk due to the size of his genitals. I guess the water weight goes to the softer tissues first, like the eyelids and genitals. When his eyelids were puffy in the morning in previous months, the water redistributed to the rest of his head was standing.
CJ was then admitted into CCMC and immediately given an IV of albumen. The albumen would help rid CJ’s body of excess water to releive his discomfort. CJ went from 35lbs to 22lbs in 1 day. He was skeletal. I will have that picture of my son sitting in bed with sunken in eyes, burned into my brain. At the same time, we could tell that he was relieved from the discomfort that he was feeling. He continued steroid treatment and was released from the hospital after a few more days.
In months after his diagnosis of Minimal Change Disease, he continued his steroid therapy which caused some side effects. He grew hair all over his body and face, he gained weight, he was very irritable, and had an insatiable appetite. He wanted to eat everything in sight until he was physically sick. We also have to have him on a 1500mg of sodium diet which was extremely hard to get a handle on in the beginning. Sodium would speed the swelling that he was experiencing. We spent hours in the grocery store trying to find “kid food” that didn’t’ contain excess sodium. We longed for the day that he was off of steroids. We tested his urine daily with strips until it was in the proper protein level.
After a few months he was off of medication. Since then, he has only had 2 other times occurrences where his protein levels have dropped and he had to do another low level steroid treatment. We now only have to test his urine weekly or daily depending on his levels.
CJ is lucky. Some children do not respond to steroid therapy and spend a lot of time in the hospital. He is active and back to his usual weigh proportion. We are also told that when he hits puberty age, the rush of hormones could repair his kidneys to normal function. I never thought I would long for the day that my son would be a teenager!
Since December 2010, CJ’s protien level has been in the warning range. He has had about 5 blood tests that reveal that his blood is in the ok range. His kidney doctor doesn’t want him to be on steroid therapy until his blood is in the warning range. CJ has his favorite “blood guy” who he requests at every blood test. He also gets to pick a toy at the gift shop when he has a blood test, so he is at a point where he almost likes giving blood! ALMOST!
In March 2011, CJ's nephologist decided to place him under steroid treatment again due to his somewhat high protien levels for the last few months. He is not experiencing any swelling, but we just realized that the steroid treatments cause him to have nighttime leg cramps.
As of May 2011, CJ is alomst done weening off of steroids. His kidneys are fully functional!
As of February 2012, CJ is still in remission and off of all medications.
As of May 2012, CJ has been off all medications for a year. His check up went well and we look forward to another great year!
As of March 2013, CJ is still in remission! No meds, No symptoms, and very greatful!!!
April 2013, CJ met his new kidney doctor and he likes her, a lot! He is still in remission, happy and healthy! WE COULD REALLY GET USED TO THIS! She warned us he may have a flare up towards his teen years, but after that he should be clear of any symptoms. Now if we could just get rid of his poison ivy...
March 2014, CJ is still in remission! No meds, no symptoms, no worries. :)
April 2014, Another amazing doctor's appointment. Still in remission, 3 years without kidney issues!
January 2015, REMISSION IS WONDERFUL!
January 2016, CJ is still in remission. We couldn't be more grateful and blessed!
March 2017, CJ has been cleared by the doctor. He hasn't shown symptoms for over 5 years and no longer has to be checked on a yearly basis. Words cannot express how grateful our family and CJ are for the treatments and care that he has received.