Anyone Out There

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Comment by Karen Thomas on August 8, 2009 at 6:27am

Jennifer,

After seeing the story on channel 5 about your family experience , I wanted to share my personal experience as a mom of a child with nephrotic syndrome. Have faith and keep praying because there are lots of reasons to believe Tanner will be fine.

When our daughter, Amanda, was 2, she was diagnosed with nephrotic syndrome. Back then (1979), not a lot was known about the disease. Her father and I were very afraid for her. We were told that our little angel had a 50/50 chance of surviving the disease but that there was no cure. On her renal biopsy, she was found to have "minimal lesion" nephrotic syndrome. That was a good thing they said. Because of this "type" of nephrotic syndrome, she should be responsive to treatment with steroids. Amanda was responsive, but she remained on steroids chronically as, without them, she would surely relapse. Her adrenal glands atrophied due to the steroids, which those glands ordinarily provide. In the beginning, she was hospitalized because of the massive amount of fluid surrounding her heart. She would swell so much, you could hardly recognize her. Fluid would weep out of her skin. She required many hospitalizations over the years.

Finally, at age 4, she ended up having to go through a course of Cytoxan to see if it would put her disease in remission. It did help to an extent; however, it did not totally put her into remission. For years, she would relapse from things as simple as experiencing a day when her allergies were acting up. We got to the point where we could predict within a day or two when her protein would start to spike. Amanda's teachers were sent a note from her physician, John Menchaca, instructing them to allow me to decide if she should come to school or not based upon symptoms of an impending relapse. It was tough for her and for our family. She spent many, many days at home, having her school work sent home for her to complete.

Because of her illness, I enrolled in nursing school early on so that I could be prepared to care for her in the best way possible. However, it became impossible for me to hold down a 40-hour a week job because she was home sick so much of the time; not to mention my fear that I would bring something home from the hospital which she could catch due to her compromised immune system. For that reason, I began searching for something I could do to work from home. It was at that time I started a medical transcription service. This way I could take care of her when she was ill, and I could still provide an income for our family from home.

Amanda went through school much like other children, only with one big twist. Obviously, she missed lots of school, but she also never got to have the frequent slumber parties, or go to birthday parties like a normal child. With the immunosuppression that comes along with the disease itself and steroids compounding the problem, she could not be subjected to exposure by anyone even with a common cold or risk a relapse. Heaven forbid she should end up with chicken pox as that would require sending off for gamma globulin from up north, and then putting her into the hospital to receive it.

Another sad thing is how cruel other children were to her when she would swell from her relapse. She (and her father and I) experienced a lot of fear and disappointment along the way. She felt isolated much of the time. We felt guilty for not letting her be part of things more; however, we could not have lived with ourselves if she had relapsed because of it. There were times when we would give in and let her enjoy herself, and usually she paid for it with a full-blown relapse within 8-10 days which made us feel horrible about having let her go. Her relapses were so severe at times that she would end up in the hospital on IV therapy. Even that did not keep her from being a happy and loving child who was totally in love with life. She made me a drawing once of sunshine with the words across it saying, "You are my sunshine!" I still have it to this day. She has taught me so much about life and being happy for each day you have together.

Many years and lots of prayers later, Amanda is in remission with only an occasional relapse. She is now 32 and a mother herself. She still has to watch her diet limiting sodium so that she won't swell. She also has to keep herself as healthy as possible because of her compromised immune system. Yet she continues to love life, and has been very successful as a single mom raising our awesome grandson, Gage, who is now 9. Amanda is still the sunshine of my life, and that has remained her nickname to this day. I love you, Sunshine!

So keep the faith, stay close in prayer, and just believe that everything will be okay. God bless you and your family.

Comment by Kimberly on March 30, 2009 at 10:01am

I am also looking for the same. My daughter, Taylor, 12, has an unexplained chronic illness that has just shown up. She was a completely healthy kid until Aug. 08. She has since been hospitalized twice for weeks at a time and has missed a lot of school due to illness and dr. appt.'s. This has been very hard for all of our family and would love to connect with other families with similar experiences.
Kimberly