Families, patients and providers can now browse our clinical research studies at the newly-launched Seattle Children’s Research Studies and Clinical Trials Web Hub.
When a family is in a rush to get dinner on the table, maybe mom or dad will order pizza, grab healthy greens from the salad bar or hustle home with prepared food from the deli. But when the Thomelin family is considering dinner, they have to think about every single ingredient they bring into the kitchen. Their youngest daughter, 9-year-old Isabelle Thomelin, has severe allergies to peanuts and tree nuts.
Isabelle is enrolled in a clinical study at Seattle Children’s that may reduce her allergic reactions. The study will test an immunotherapy technique and a designer medicine to see if they allow Isabelle’s body to safely tolerate peanuts and tree nuts in gradually increased doses.
Isabelle’s mom, Toni Thomelin, asked Isabelle’s doctor about getting involved in allergy research. She had read about a food allergy study at Stanford and was interested in seeing the same study expand to the Pacific Northwest.
“It was important to our family that we find clinical research opportunities in our region that could help Isabelle and other kids with food allergies,” said Toni Thomelin. “I’m now engaged in fundraising and awareness for local food allergy research.”
Families and patients at Seattle Children’s can now browse our clinical research studies at the new Seattle Children’s Research Studies and Clinical Trials Web Hub, a one-stop portal for patients, families, faculty, community providers and prospective research sponsors interested in learning about clinical research at Seattle Children’s. The hub includes information about what clinical research is, why patient families may want to consider participating and provides a list of currently enrolling studies.
Participating in a clinical research study
Why should families, doctors and patients consider clinical research? Dr. Bruder Stapleton, Senior Vice President at Seattle Children’s Research Institute, says it can be beneficial to both patients and researchers.
“The families that participate in clinical studies at Seattle Children’s will learn about current research for pediatric diseases and help our researchers find treatments,” said Stapleton. “With this new web hub, we’ve created an easy access point for families that want to get involved. We have studies for a wide range of conditions including asthma, cancer, diabetes, concussions and cerebral palsy. By partnering with families and patients in research, we strive to find important and relevant advances as soon as possible.”
Dr. Stephen Tilles, who treats patients at the Seattle Children’s Pediatric Clinical Research Center, oversees Isabelle’s care in the study. Dr. Tilles treats the study participants with omalizumab, a designer drug that is FDA-approved for treating severe allergic asthma in adults and adolescents. In earlier clinical studies, omalizumab was shown to reduce food allergy reactions.
“The outcome we hope to see is that the drug will reduce the body’s allergic reaction to the food and give the patient’s body an opportunity to build an acceptance,” said Dr. Tilles.
After two months of omalizumab injections, the study team establishes a tolerable daily dose of the foods that previously caused symptoms in much lower doses. The patient eats this dose of food every day, and the daily dose is increased every two weeks until the patient can tolerate at least two grams. For Isabelle, that would be about five peanuts.
Isabelle is currently receiving the omalizumab injections, and after two months Dr. Tilles will oversee her first treatment with peanuts and tree nuts.
Check the ingredients list, and check it again
The Thomelin family cooks most meals at home from scratch with fresh ingredients. They can never be sure that prepared or packaged food is free of peanuts and tree nuts.
“If I go to a birthday party and we haven’t checked all the food that’s there, I bring my own snacks,” said Isabelle.
If she is exposed to peanuts, her throat gets itchy and she develops a stomachache. The family reduces the chances that Isabelle will have an accidental exposure by explaining the allergies to friends and their parents.
When the family travels, they bring EpiPen injections, which contain epinephrine, a chemical that narrows blood vessels and opens airways in the lungs in case of a severe allergic reaction. They also wipe Isabelle’s airplane seat before she sits down. If the person who sat there before her had peanuts, that can start an allergic reaction, a scary situation on an airplane with no access to a hospital.
Even reading food labels is not fool-proof. Her dad, Philippe Thomelin, brought some of Isabelle’s favorite chocolate-covered bananas on a camping trip. She had a piece after dinner and developed hives all over her mouth.
“It turned out the package was mislabeled and actually contained chocolate-covered walnuts, requiring a trip to the emergency room,” Philippe Thomelin said.
Study could lead to diet with nuts
Isabelle and her family already have some good news from the study: A blood test showed she’s not allergic to almonds. But they’re not reaching for a bag of those nuts just yet.
“We have not found a brand of almonds yet that we feel comfortable feeding her because not every package says if the almonds were processed in a facility that handles other nuts,” said Philippe Thomelin. “We wish manufacturers would be better about labeling products.”
Isabelle hopes that by participating in research, she can help other children with food allergies find a solution. If this study is a success and her body can tolerate peanuts and tree nuts, she and her family can breathe a bit easier and not worry about every ingredient in every food product.
“This study is a big hope for us,” said Philippe Thomelin. “It would change her world to be able to eat without having to double check and triple check every ingredient.”