Road to Remission – Guthrie’s Story

Guthrie at age 3, when he was receiving his treatment.

With no family history of kidney issues, Jessica Martin was shocked when her son, Guthrie, was diagnosed with nephrotic syndrome at age three. Having never heard of this condition, she had some research to do.

Nephrotic syndrome is a condition in which a person loses large amounts of protein through their urine, increasing fluids to other areas of the body. This causes a type of swelling called edema, usually in the face, abdomen, arms and legs and can also be accompanied by unintentional weight gain.

There isn’t a cure for nephrotic syndrome but there is treatment. To remedy nephrotic syndrome, Guthrie was placed on a steroid called prednisolone and a low sodium diet. He would be on prednisolone for a month-long high dose, and then would taper off the steroid to see if he would relapse. Guthrie, however, was considered a frequent-relapser because he wasn’t able to stay off the prednisolone for any significant length of time.

The side effects of steroids on a three year old were hellacious, between the mood swings and his appetite. His emotions were out of control — he would be cracking up and then all of a sudden begin sobbing. Guthrie is normally such a happy little boy who loves music and dancing and is a compassionate big brother, so these mood swings were clearly out of character. Making matters worse, Guthrie was always hungry and yet he couldn’t eat anything with sodium in it. He was often eating carrots at 11pm in his bed because he couldn’t fall asleep due to hunger.

Family Friendly Care

Soon after Guthrie was diagnosed, Jessica gave birth to her second son, Seeger. This meant that she was often bringing Guthrie to his weekly appointments at Connecticut Children’s with a newborn in tow; but the staff couldn’t have been more accommodating. She fondly remembers one nurse in particular, Caitlin Greenslade, BSN, RN, CPN. She would take Seeger in the stroller and walk around with him for a minute so Jessica could focus or she would help convince Guthrie that it was okay to do the blood pressure cuff again. They looked forward to the days that Caitlin was their nurse.

Guthrie became very friendly with the dietician as well. He was required to eat an almost-no-sodium diet, which is very difficult for a three year old. The dietician would make an extra effort to speak to him in a way that he could understand, allowing Guthrie to verbalize what he was going through.

Jessica recalls, “I was always impressed how everyone at Connecticut Children’s spoke directly with the kids in a language they could understand. I remember him asking his preschool friends, ‘How much sodium is in your goldfish crackers?’ His friends didn’t even know what sodium was!”

At one point in his treatment Guthrie needed weekly blood draws. Jessica told us, “We live in Wethersfield and could have gone to our Quest right here in town, but we drove to Connecticut Children’s instead. Having his blood drawn with a staff that was trained to work with children made a huge difference. I brought Guthrie to a class that was held in the Family Resource Center called Needlephobia. This was a wonderful program where the children were given the opportunity to safely play with all the little accompaniments that go along with a blood draw, including the alcohol swabs, cotton balls and tourniquets. We loved visiting the Family Resource Center, the staff was always very friendly. They would keep an eye on my stroller if Guthrie needed to go to the bathroom, and would often be a second set of hands for me. I would even make a bargain with Guthrie and tell him if he sat quickly for his blood draw he would get more minutes to play in the Family Resource Center. The more he stalled, the shorter his playtime was. It proved to be a great motivator for him.”

After over a year on the steroids with 13 relapses, his parents decided to try an immune suppressor, Oral Cytoxan. Since his 12-week treatment with Oral Cytoxan, he has not had a relapse. Guthrie is now considered in remission and has been for over two years. At home his parents still check his urine regularly, especially during the flu and cold season, but his kidneys are currently working normally and he no longer has to worry about sodium restrictions. As of January 2019, Guthrie only needs to come back for annual follow-ups with his provider, Molly Band, PA-C.

How Far They’ve Come

Jessica recalls, “Sometimes I forget how overwhelming it was at the beginning. One day in the Nephrology waiting room, I met another mother who looked scared, tired and worried. She overheard me saying something to Guthrie about his nephrotic syndrome, so she asked me a few questions because her daughter had just been diagnosed. We were almost a year into treatment at this point, and we were just about to start the immune suppressor. She was really anxious about her daughter. I told her not to worry— everyone in the Division of Nephrology is really knowledgeable about how to treat children. I let the doctors worry about the course of care and I simply administer it.”

“We feel lucky to have Connecticut Children’s so close. It has been such an incredible resource for our whole family. In fact, my youngest son, Bragg, just had an appointment with the Division of Ear, Nose and Throat (ENT) to determine if he needs tubes in his ears. We are relieved to report that he does not! Any time my friends need to bring their children to a specialist, I always recommend Connecticut Children’s. I feel like I am an honorary member of the marketing team because of how often I talk about it!”

Connecticut Children’s Division of Nephrology is a leader in pediatric nephrology services throughout the region, caring for infants, children and adolescents with a wide range of renal disorders. To learn more about our expertise, please contact our Nephrology Team.

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