As you have read my four year old was diagnosed with nephrotic syndrome Aug. 2, 2013. Some of you have asked how I knew, what is the prognosis, and you may be going through this with your child as well. I will continually update on my son on this very same page instead of creating new ones to make it easier to track the progress. Let me start by explaining the syndrome itself according to The National Kidney and Urologic Diseases found here- http://kidney.niddk.nih.gov/kudiseases/pubs/childkidneydiseases/nephrotic_syndrom/
“Nephrotic syndrome is a set of signs or symptoms that may point to kidney problems. The kidneys are two bean-shaped organs found in the lower back. Each is about the size of a fist. They clean the blood by filtering out excess water and salt and waste products from food. Healthy kidneys keep protein in the blood, which helps the blood soak up water from tissues. But kidneys with damaged filters may leak protein into the urine. As a result, not enough protein is left in the blood to soak up the water. The water then moves from the blood into body tissues and causes swelling.”
My son had a low grade fever for about 3 days. We decided not to go to the pediatrician since he wasn’t super congested and we weren’t ones to run the the doctor at the first sign of a cold. On the 4th day he was fine but a little swollen around the eyes. My husband thought it was congestion related. However, as the day progressed I went to my fathers house were my boys love to ride their kid sized motorcycles. I noticed his legs were swollen. My father dismissed it and said he was gaining weight. I went home and just could not shake off that strange feeling. I told my husband that I thought it was more than just a congestion. He normally is the worry wart so he said to just take him to the pediatrician if it eased my mind. Well, I took him that same day. By 5 pm when I took him, he had pitting edema on his legs. The doctor left his fingerprints on his legs! I knew something terrible was up. He ran a protein test and said he was excreting it in the urine. I was sent to the ER which I bypassed thanks to my Dr. and 3 days of diuretics (furosemide), albumin transfusions, prednisone and a brief talk with a dietician and nephrologist who said he needed a no salt/ low salt diet later, we were sent home. All the while I am in panic mode because his cholesterol due to this onset was 454! He also has an aortic aneurysm and I was so worried about clotting his arteries.
This was taken in the pediatricians office. He’s a skinny little guy and his ankles were plump.
This was a picture of him by 8:00pm being admitted.
Receiving his infusions.
God was my strength during these times. He sent me my angels in the form of friends and family.
This was his first week home. Much thinner, dark circles under his eyes and happy to be with his family.
12 weeks later he was in remission! My little fighter!
That is what prompted me to start this blog. I left the hospital overwhelmed, confused, uncertain about the future, and just plain scared. I responded in the only way I knew how, trying to help someone else who might be in my situation. We believe diet is the most important preventative measure in this condition. Only time will tell if we are correct.
His nephrologist believes he has minimal change disease although they are not certain until a biopsy is performed and he would rather wait before a more invasive procedure is done. He was placed on prednisone 5ml in the am and 5ml in the pm for 4 weeks. Then, they tapered him off 4 weeks later 5ml in the am every other day. I now know real prayer for the first time in all my life. It has kept me sane and given me strength and allowed us to live the moment not waitanxiously for what lies ahead.
One must not think that a person who is suffering is not praying. He is offering up his sufferings to God, and many a time he is praying much
more truly than one who goes away by himself and meditates his head off, and, if he has squeezed out a few tears, thinks that is prayer.
–St. Teresa of Avila
11/11/13- Three months since onset…
John is undergoing his first relapse. He had a fever over night and we took him the next day to the pediatrician and he had trace amounts of protein. Steadily it has been rising until as of 11/16 he has +4 with no swelling. His nephrologist said to wait unless there is swelling until his appointment on Wednesday, 11/20 with a urine sample from the morning (that is the only time it is collected) and we will discuss if he will have to be started again on prednisone. On the one hand, the diet has helped prevent the swelling but that has not prevented the protein to spill😦 So sad, but prayerful and optimistic.
This is him now during his first relapse.
As soon as we know he is relapsing we start measuring protein in the morning. weighing him on the same scale as soon as he’s up and taking his blood pressure (he has an aneurysm). I do love him so much and I know every mother feels as I do. I wish I could take this cup from him.
‘When it is all over you will not regret having suffered; rather you will regret having suffered so little, and suffered that little so badly.’ –St. Sebastian Valfre
John has now been placed on prednisone again as of 11/27/13 (Thanksgiving Day). My husband and I are so down but we continue to have faith and hope amidst our pain. He ‘s still leaking protein in the urine. On his first onset he stopped after 4 days of the medication. I’m starting to get worried, but faith and love for my little fighter. We set up the Christmas tree yesterday and finished decorating just in time to start our advent calendar.
2/11/14- kidney biopsy
Well, because my son is still on prednisolone because every time we take him off he relapses, kidney biopsy there we went. I am happy to report results were that he has minimal change disease, however, steroid dependent.
Well, I have been through quite a bit in the last two months so I have not written anything for a while. As of tomorrow the doctor would like to try him on an 8 week course of Cyclophosphamide (Cytoxan). As he explained, we can not continue to give him corticosteroids for such long times. So, I buckle up for another emotional roller coaster where I’m praying Jesus is my seat mate holding my hand as we hit scary falls and fast curves. Will keep you posted.
As iron is fashioned by fire and on the anvil, so in the fire of suffering and under the weight of trials, our souls receive that form which our Lord desires them to have.–St. Madeline Sophie Barat