Once you have received the diagnosis of HI, it can feel like there’s so much to take in. There are some steps you can take now to help your child and your family:
- Ensure your child’s blood glucose levels are being properly managed. The Pediatric Endocrine Society (PES) guidelines say that blood glucose levels should be kept above 70 mg/dL (3.9 mmol/L) to prevent hypoglycemia unawareness (when a person cannot sense that they are having an episode of hypoglycemia) and to have a safe margin above the level of hypoglycemia that negatively impacts brain development. Once the blood glucose levels are stable, the next step is to identify the best treatment plan according to the type of HI.
- Take a deep breath and know that you are not alone. A new HI diagnosis and the ensuing treatment can feel very isolating, but the HI community is here to help you through it. CHI has curated a global network of families, researchers, clinicians, and professionals who are determined to make a difference in the lives of people with HI. Connect with us by sending an email to us and we can set up a time to talk and put you in touch with other HI family members who understand what you are going through and can provide support. Join our email list to stay up-to-date with upcoming events and opportunities to get involved. There are conferences yearly and other awareness events to attend. We are also active on social media channels, such as Facebook, LinkedIn, Instagram, Threads, and X. We also moderate a very well-trafficked support group on Facebook, the CHI Family Support Forum: Congenital Hyperinsulinism International Family Support Forum | Facebook. Day and night, there are parents available to connect with on a whole range of HI topics.
- After reading the materials on our website and discussing your child’s treatment with the medical team caring for your child, consider with the team if an HI Center of Excellence (COE) should be consulted. COEs provide the highest level of multi-disciplinary care for children with HI. Even if a transfer to a COE is impossible, physician-to-physician consultations can be extremely valuable and can result in optimal care for your child.
- In addition to the current best practices for HI care that are described in the guidelines article, there may be clinical research trials recruiting participants. A clinical research trial is a research project conducted with human volunteers to learn more about new investigational drugs. Every new therapy or device must go through carefully monitored studies in human volunteers before it is commercially available. Sometimes clinical research trials are an opportunity to try out a treatment that is in development, but is not yet standard of care, offered everywhere. If you’re interested in participating in an HI Clinical Trial, you can talk with your clinician to get more information and determine whether your child qualifies. You can also read more about clinical trials and potential opportunities on the CHI website: Clinical Research Trials – Congenital Hyperinsulinism International.
- Join the HI Global Registry (HIGR) and share your and your child’s experience while the early details of diagnosis are fresh in your mind. HIGR is the only patient-powered HI registry. A registry is a resource that collects information about people with a shared condition (like HI) through a collection of surveys. These surveys cover many topic areas to capture what it’s like to live with HI—from birth to diagnosis to medication management to everyday quality of life. HIGR can be completed at your own pace, and you are not required to complete all of the surveys at once. Your unique experience is so valuable to the HI family, medical and scientific HI community. Through HIGR, researchers and clinicians learn about what it is actually like to live with HI, and rich material can guide the development of new treatments, better ways to diagnose HI, and an overall improved quality of life.
