25: When an Additional Diagnosis Complicates Diabetes

Sweet Talk for Parents of Kids with Type One Diabetes

Dealing with your child’s additional health diagnosis on top of T1D can ramp up the stress and anxiety for parents. Today’s question comes from a parent who is navigating this difficult road with her teen. Join us to hear the conversation.

Show Highlights:

• Guest: Janelle, whose daughter Michaela (16) was diagnosed with T1D at age 12
• Testing has recently revealed that Michaela has a very rare antibody syndrome in which 75% of her dosed insulin is not usable, which leaves her needing unusual amounts of insulin.
• The unpredictability of her levels with this antibody syndrome adds a new layer of stress, and her doctors aren’t even sure of what to do.
• Janelle’s Question: “Why does this new diagnosis feel like we are going through the initial T1D diagnosis all over again, including the grief and other strong emotions that we have felt before?”
• JoAnne’s Answer: “There is a fear of the unknown with this new diagnosis, and I applaud you for the way you are talking about it. I think that getting connected with support can be helpful in many ways, and you can often find these people on various social media platforms. It is also important to find medical providers who may be at the most elite institutions and have knowledge of her rare condition. It is scary to be dealing with something like this fluctuating and life-threatening condition without having the right care team in place. Since you have said that your daughter doesn’t want to wear an insulin pump, now might not be the right time to take that step. With that being said, if the short-acting insulin does not induce the antibody syndrome and the long-acting insulin does, that would be a very good reason to put her on a pump. I’m all for letting the child make the decision on that, but it’s not just ‘her body’ if you, her parents, are deeply involved. As with any other illness or disorder, people don’t always get to choose their treatment. Regarding the emotional piece of this situation, this is a stressful experience, and you are having to navigate and manage this as the rock for your family. I encourage you to hold steady and know that you are advocating for your daughter and holding the line for your family. Being there for your family is powerful, but it’s not a permanent situation. You need support. Having more resources and more community around you can help, even though it would be a very small community who also deals with this rare condition. As always, the larger T1D community is always helpful for support.”

Resources:

Visit my website for available resources and upcoming courses/webinars: www.diabetessweettalk.com

*Visit my website to get my Self-Care Kit to bring more ease and balance into your diabetes management routine!

*For help with the emotional and parenting challenges of facing T1D management, join one of our live recording sessions by clicking the banner at the top of the website homepage.

*For help in diabetes management, check out Sweet Talk’s Put Diabetes In Its Place coaching course. This is the course I wish I’d had when my kids were diagnosed.

*For a more hopeful future for you and your T1D child, consider the After Diagnosis coaching course. It’s designed specifically for parents whose child was diagnosed within the last year. Let me help you find a faster path to calm.