A parent's view on congenital hyperinsulinism care at Cook Children's

Author: Cook Children's Health Care System

(soft music) - River was born in Kyle, Texas in a little hospital. Because he was born early, they did a blood sugar check. It was a nine, which normal blood sugar should be from 70-100. They finally got to the point where they said, we're not sure what's going on. We've never seen anything like this. We're gonna have to take you to a higher level NICU. We did genetic testing while we there, and when it came back we found he has congenital hyperinsulinism.

We found out about Dr. Thornton because he wrote probably half of the articles on hyperinsulinism, and I said you know what, we need to just start traveling to Fort Worth to go see Dr. Thornton because he's the expert on hyperinsulinism.

We were just overjoyed whenever we met them and felt so at ease and knew that we had made the right decision to see Dr. Thorton. You can tell that he really, truly cares about all of his patients, and the staff has always been so helpful. His nurse Lisa is always there when we need her. Whenever we first came to see Dr. Thornton, he could only fast for about an hour and half, and he was getting shots three times a day.

- Amber Ross, the mom of River, she's an incredible nurse and an incredible parent, and yet she's not a nurse. She's become a nurse for River, to be able to do all the medical things that need to be done. - Every 3 months we'll do an in office visit, and then twice a year we do a hospital stay.

A parent's view on congenital hyperinsulinism care at Cook Children's

River actually looks forward to it. The nurses always give him so much attention and the child life specialist will come into our room and do activities with him. He loves to go get yogurt while we're here, and the Build-A-Bear Workshop. The rooms are comfortable.

There's a place for us to sleep so that we can stay with River, and what also is really helpful, is that they'll do the fasting studies around the same time, so it's nice because we get to meet other parents while we're at the hospital. River gets to meet other kids that are going through what we're going through. River is now five years old. He is doing so well because of the newest research, we found out about a shot that he can take just once a month. We're open to trying new drugs and new research. I mean if it can do anything to better our son's life. - When you come to a place like Cook Children's, where we're at the forefront of diagnosis and treatment, there are options that we can do that other people can't do.

With this new drug, River was able to go much longer during the day without having to eat. He required hardly any chemicals during the night. He was able to run around and do all the things that all the other children are doing. Little advances make huge differences in the lives of children. Looking at a kid like River Ross having so much fun, and thinking where he was three years ago, that helps me say I need to write another paper. I need to write another research grant and let's keep this moving forward. The HI Center here at Cook Children's is really a saving grace for us.

It's worth the drive for us to be able to come here and know that we have an expert in this disease, and a team that's around them that will help to make sure that river receives the best care now and of course moving forward in the future. (playful music).

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A parent's view on congenital hyperinsulinism care at Cook Children's

(soft music) - River was born in Kyle, Texas in a little hospital. Because he was born early, they did a blood sugar check. It was a nine, which normal blood sugar should be from 70-100.…

By: Cook Children's Health Care System
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