Advocating For Your Child With Diabetes: The Parent Perspective

A few months ago, we had the pleasure of meeting (and having our hearts stolen by) 5-year-old Xavier and his family, who visited us from Perth, Australia. Today we welcome his super-mum Naomi to talk about her role advocating for his care.

Q. Hi Naomi, can you tell me about Xavier’s diagnosis (how old he was etc).

A. Xavier was diagnosed 2 months before his second birthday. I had taken him to the doctor 3 times that week because he was so sick . The doctor shared different answers each time, from a virus to dehydration. When things got worse and he began vomiting, I told my husband Shane I was taking him to our local hospital. We got whisked away to a treatment room and they put IV lines in both of his little arms. The doctor took me to one side and said, “your son has type 1 diabetes and is in DKA, he will be going to the ICU.” I was shocked to say the least.

Q. Were you familiar with diabetes before he was diagnosed? How have you taught yourself all that you need to know?

A. I knew a little about type 2 and gestational diabetes, but nothing about type 1. The hospital was a fantastic resource for us when we were first diagnosed, and then learning about foods from nutritionists, the internet and other’s life experiences. We also had a four month little girl at the time, Lillyana. This learning curve impacted the whole family. I don’t know that we will ever know everything about diabetes, as it is such a roller coaster of a disease, but we have perseverance and a willingness to learn from everyone. And we are always learning!

Q. How do you advocate to help Xavier manage his diabetes? How has this changed over the years?

A. When Xavier was first diagnosed he was too young to manage any part by himself. He was on injections (4 a day at a minimum), and we did it all for him. As time passed, and we went onto the MiniMed pump, Xavier has learned how to bolus himself, with our supervision…after all, he is only 5! Xavier will also show his teachers at school how to use his pump and if given the chance, he tells them what to do! He can check his own BG, however if he doesn’t want to we do it for him with no pressure. He has many years ahead of him to do it for himself, so we don’t mind.

Q. Were you vocal about his technology/treatment? What happened when your healthcare team didn’t help to set him up for success in this area?

A. I was vocal about going on a pump, as when Xavier was coming home from daycare 3 days a week, his BG was 20+ mmol (360+ mg/dL) each day. That was unacceptable. I started looking into pumps and I was very lucky with the support I received from Medtronic and our healthcare team, but personally know others who have not had support. I have encouraged them to push back, ask why, and get direct answers. The MiniMed pump has given us so much freedom that I can’t speak highly enough of it, especially to newly diagnosed families, once they are able to comprehend diabetes.

Q. How do you educate others about diabetes? Why do you think this is important?

A. I always try to get people to understand that people with diabetes can eat just like anyone else. We eat healthy, for the most part, and we allow Xavier to eat cake! I try to get them to understand it’s not all about sugar, but also carbs. I also try to get them to understand sugar can be a life saver if he is low. If they want to know more, I am always willing to share, but try to not overwhelm them!

Q. How has your vocal role in the diabetes community impacted your family?

A. My husband and I found new and very close friends within the diabetes community. I have found that there are people willing to help. I am active in social media, running a support group page, and coordinating in-person get togethers. (Xavier doesn’t get as involved, probably because he is much more interested in being Superman, or playing Legos. I’m sure that will come, in time.)

Q. What advice do you have for parents who are in your situation with a child with diabetes?

A. It will get easier (everyone gets told that but it’s so very true)! Don’t be afraid to find the community around you so you can be surrounded by people who understand what you are going through. There are going to be hard days, but the good days will far outweigh them. Take a step back if you need, even just for a moment, to re-focus, and be able to move forward. Remember to breathe.

IMPORTANT SAFETY INFORMATION

– Medtronic Diabetes insulin infusion pumps, continuous glucose monitoring systems and associated components are limited to sale by or on the order of a physician and should only be used under the direction of a healthcare professional familiar with the risks associated with the use of these systems.

– Successful operation of the insulin infusion pumps and/or continuous glucose monitoring (CGM) systems requires adequate vision and hearing to recognize alerts and alarms. Medtronic CGM systems have limited approval indications for pediatrics. Consult your healthcare professional for which Medtronic system may suit your child.

Medtronic Diabetes Insulin Infusion Pumps

– Insulin pump therapy is not recommended for individuals who are unable or unwilling to perform a minimum of four blood glucose tests per day.

– Insulin pumps use rapid-acting insulin. If your insulin delivery is interrupted for any reason, you must be prepared to replace the missed insulin immediately.

Please visit http://www.medtronicdiabetes.com/important-safety-information for complete safety information.

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