A Mother’s Journey Supporting Her Daughters Through Type 1 Diabetes Screening and Treatment
Early Awareness of Type 1 Diabetes
Prior to receiving Teplizumab (Tzield) infusions, Ellie was living a carefree life as a five-year-old kindergartener. Her older sister, Anna, was diagnosed with Type 1 Diabetes (T1D) at the age of three in DKA (diabetic ketoacidosis), when Ellie was just one year old. DKA is a life-threatening emergency and, unfortunately, still a very common way initial onset cases are diagnosed in the United States. Consequently, Ellie has always been aware of diabetes.
Screening and Stage 1 Diagnosis
Due to her sister’s diagnosis, Ellie was screened for autoantibodies at the age of two, with negative results. Given her elevated risk, we chose to repeat the screening shortly after her fourth birthday. The second round of screening results indicated that Ellie now carried five of the Type 1 autoantibodies. This screening confirmed that Ellie had a 100% lifetime risk of developing T1D, with the primary question being when she would develop the condition. Following the screening and an Oral Glucose Tolerance Test (OGTT), it was determined that Ellie was in Stage 1 T1D, meaning she carried two or more autoantibodies without dysglycemia (no abnormal blood glucose trends). Our next step was to monitor and wait for any changes.
Hope Through Research and the PETITE Study
In the same month that we learned Ellie carried five autoantibodies, the FDA released promising news that Tzield had been approved for children aged eight and older, demonstrating its ability to delay the onset of T1D. Although this development was groundbreaking and extremely exciting for the T1D community, Ellie was so young that the likelihood of her progressing to Stage 2 before reaching the age of eight was uncertain. Later that spring, during Anna’s quarterly endocrinology appointment, her doctor informed us of the approval to start recruitment for the PETITE study, which aimed to study Tzield in younger children aged 0-7. The downside was that the study only accepted 20 participants nationwide. To qualify for Tzield, Ellie needed to be in Stage 2 T1D, characterized by dysglycemia but not yet requiring insulin therapy.
So, we waited. Ellie underwent weekly finger pricks and wore a continuous glucose monitor (CGM) every three months, provided by one of the two research teams following her progress. Around Christmas of 2023, there was a sudden change in her CGM graphs. We were immediately brought in that same week for another OGTT to determine if she had indeed progressed to Stage 2 T1D. This test was considered the most conclusive at the time for assessing pancreatic function. The results confirmed that Ellie was in Stage 2, and within a very short period, she was accepted as one of the last few participants in the PETITE study and began receiving infusions four weeks later.
Preparing for Infusions
One of the most challenging aspects leading up to Ellie’s infusion date was keeping her healthy during the winter months. The study criteria required her to start infusions within four weeks of being diagnosed with Stage 2 T1D, and she had to be free of illness to participate. With the help of her teacher and by limiting playdates and travel, Ellie managed to stay healthy and began her first of 14 infusions in February 2024.
Our biggest hope was that we would make it to the infusion day without any kinks. Because of Ellie’s age, if she had not received Tzield through PETITE, she would not have received it at all, and she would have progressed to Stage 3 by this point in time. Our biggest concerns were the potential side effects, but with great confidence in our team and the encouragement of how safe the drug has demonstrated to be so far, it was a minimal concern.
The Infusion Experience
The hardest day of the infusions was Day 1, only because it was the longest day. For children, especially young children, a PICC line is inserted. Because PICC lines are inserted under general anesthesia, we were at the mercy of Children’s Hospital in Colorado on the timing of Ellie’s PICC line insertion, which happened to fall in the early afternoon on her first infusion day. Because of the timeline, we did her first infusion in the morning with a peripheral IV, which she tolerated very well, but she wasn’t allowed any solids after 6 am and clear liquids only following that. That was very challenging for a 5-year-old, especially one who had recent experience with an OGTT, another test where you cannot eat for a long period of time until the test is completed. But kids are amazing and resilient, and she did it! The entire day ended up being close to 12 hours, so every day after that felt so much better.
The Barbara Davis Center has a beautiful infusion center, which is where we spent every day for those next two weeks. Some days after the first were longer than others, depending on which days labs needed to be run to make sure Ellie was safe and her bloodwork looked to be on track. We had such an amazing team of providers that stayed by our side throughout the entire process. Ellie was given premeds daily to help mitigate known side effects, and we had an entire list of medications we were instructed to have at home prior to infusions starting to reduce any side effects that happened after we left the infusion center each day. The hardest few days were days 4 and 5, in which she developed some nausea and vomiting. It was very short-lived, and Zofran helped immensely. She was tired and immunocompromised, so we had to be cautious of lots of hand washing and also keeping her 7-year-old sister healthy as well so she didn’t bring any illnesses home from school. Ellie was so patient during her infusions. We did crafts, read books, watched movies, and received lots of wonderful gifts from all her family and friends!
Ellie’s only thing she wanted to do on Day 14 was the monkey bars. With a PICC line inserted, there are some precautions to ensure it doesn’t get dislodged. She had it stitched, which helps prevent excess movement, but it is nonetheless challenging to keep a 5-year-old from wiggling so much. By the end of her infusions, Ellie’s bloodwork was completely back to normal, her PICC line was removed, and we celebrated by heading straight to the playground when we got home, and she joyfully ran to the monkey bars to play for as long as she could that day!
A Community of Support
Because of our previous involvement with the Barbara Davis Center due to Anna’s T1D, we had a large T1D community going into Ellie’s infusions. We had an overwhelming amount of support from not only our family and friends, but also from our Elementary School, our T1D Tribe, and the incredible staff and care team we continue to work with at the Barbara Davis Center! I didn’t cook a single meal for 14 days, and Ellie had so much love coming her way with all the gifts, special visits, and care she received. I also had wonderful support from my work and took 3 weeks of Colorado’s FAMLI leave to be 100% there for Ellie every step of the way.
Life After Infusions
We are now a year and a half out from Ellie’s last infusion, and she is continuing to live her best life as an almost 7-year-old who will soon be starting 2nd grade! We already live with Type 1 Diabetes every minute of every day in our life with our daughter Anna, so giving Ellie the gift of time has been worth more than words can describe. Anna is such an inspiration for not just Ellie but my husband and me as well. She does hard things every single day of her life and has now lived with T1D for 5 years. We know that when Ellie needs insulin, she will be okay, and her sister is living proof of that. However, every day Ellie can wake up and live just a few more moments with her pancreas doing all the phenomenal things it does for our bodies is worth more than words can describe, and we are so lucky we had the chance to give her that gift of time that Anna never had. We are beyond grateful Ellie not only was one of 20 small children right now to receive Tzield, but we are grateful we got a chance to participate in life-changing research that will soon give all young children that same hope!
We continue to monitor Ellie’s blood glucose through CGMs and finger pokes, and she goes in for routine checkups to make sure she hasn’t progressed to Stage 3 T1D.
Reflections and Advice on T1D Screening
For anyone that is considering Tzield, I think first and foremost, you should do whatever you feel in your heart is best for yourself, your child, or your family. If Ellie had not received Tzield, she would be in Stage 3 T1D right now. We would be dealing with the highs, lows, and everything in between that comes right alongside a T1D diagnosis. Although Tzield is not a cure, any extra day, month, or hour Ellie gets to spend without insulin dependency is time we were not expecting to have 3 years ago. If we had never chosen to screen her, none of this would have been available to her.
Advice to others is that delaying the onset of T1D has been so valuable for our family. It has allowed Ellie to enjoy a longer period without the need for insulin therapy. This extended period without insulin dependency allows children to lead a more normal life, free from the constant monitoring and management associated with insulin therapy.
If I could tell providers one thing about introducing Tzield to a family, it would be that the 14 days of infusions are worth every second when it could give you years or even months of delaying the onset of T1D. It gives patients the gift of time, and even though how much time is unknown, it is time that you will never regret.
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About Kimberly Belz
Kimberly Belz, with the support of her husband Logan, is the proud mother of two daughters living with different stages of type 1 diabetes. Their 8-year-old daughter, Anna, was diagnosed at age 3, and their 6-year-old daughter, Ellie, is currently in Stage 2 and carries five T1D autoantibodies. The family resides in Colorado, where they enjoy an active lifestyle that includes skiing, hiking, running, and cycling. They also share their home with a very loving Golden Retriever named PJ. Professionally, Kimberly is a practicing physical therapist specializing in women’s health and acute obstetric care. She earned her Doctorate of Physical Therapy from Duke University.
