An Interview with Buffi Gentry about Type I Diabetes and her former charge K.
by Alice Shaffer
1 .How long have you been a nanny?
20 years.
2 How many kids are in the family?
There were two children in this family. A girl and a boy.
3 How many years did you work with the family?
I worked for the family over the course of 10 years from 1996 to 2006. I briefly worked for another family at some point during the ten years, but came back to this family because we were a good fit.
4 How long were you nannying for them, when the child was diagnosed?
I had worked for them almost three years when the oldest was diagnosed.
5 What type of diabetes? / age of child?
K was 11 when diagnosed with type 1 Juvenile Diabetes.
6 How did you all come to find out the child had diabetes?
K had been losing weight and had become very lethargic. Her mother took her to Dr. Harvey Karp, their pediatrician at the time and he made the diagnosis. She was then sent to Children’s Hospital LA to be treated by their endocrinology department.
7 What was your role in the diagnosing of diabetes? Had you seen warning signs etc?
There were signs. I had taken K to her first concert, and she kept needing to use the bathroom after drinking a large soda. I remember how irritated she became at the fact she needed to use the bathroom so often. She then started to drop weight quickly, and the normally active 11 year old equestrian became lethargic. After she was diagnosed we were all in a state of shock. I spent the night because they needed to take K into the hospital for more tests and treatments the next day. I remember crying all night.
8. What was your role in the treatment of diabetes? (were you included, told what to do-this is what you need to do-no questions asked kind of of deal, did you do research, research cohesively with the parents?
We all learned on the ground floor about this disease and how to treat both hyper and hypoglycemia. The parents learned by her hospital bedside while I took a course with the nurse educator that they have at hospital. The nurse educator and endocrinologist are a valuable resource with a disease like diabetes.
9. With your charge being diagnosed with Diabetes, did this change the way you viewed yourself as the family’s nanny? How?
Obviously there is more responsibility. You need to learn the signs of both hypo and hyperglycemia and how to treat each equally. There is no scientific formula for diabetes. What works some days won’t work others. You also have to factor in exercise and lack of exercise, hormones, and even routine illness causing issues like insulin resistance.
10. Did the family change the way they viewed as the nanny?
I believe so. I became part of their support team and a trusted member of the family. After I left for another job, the parents really decided I was the only good fit for their family and asked me back. It seemed logical as it had all worked better previously.
11 What types of treatment was your charge involved in? What was your role in these treatments?
Most juvenile diabetics go through the “honeymoon” phase of the disease. This is when their pancreas still produces some insulin. K was a little further along, she need both fast acting (for eating right away) and long lasting (for blood sugar peaks) insulin injections. As her blood sugar numbers became more stabilized, she switched to an insulin pump. This is another completely different learning experience because you go from using long lasting type insulin which works over a period of hours with both blood sugar peaks and valleys to an hourly “bolus” that treats in small increments. Her body also needed different amounts at different times. At the time 24 hour blood sugar monitoring wasn’t available. You rely on another test, the Hemoglobin A1C, administered by an endocrinologist to define the overall blood sugar picture.
Later as the technology improved, there were better blood sugar monitoring systems. First a watch, which was very uncomfortable to wear, and then an intravenous system worn via a catheter through the stomach area. Now there is an intravenous component that can be worn with an insulin pump.
As a teenager, K became very self conscious of wearing the insulin pump and decided to go back to using injections. At that point one of the Pharmaceutical companies had created a long lasting insulin that didn’t have the issues of the old version. There were no longer any peaks or valleys to blood sugar meaning she could eat when she wanted so long as she treated herself with a fast acting insulin.
12 Had you had previous experience dealing with a charge that had diabetes?
I had no previous experience with diabetes. I remember thinking it was an old person disease that you got from being unhealthy. What a shock to learn otherwise. This is a disease that can effect anyone in any health condition.
13 What did you do to educate yourself about caring for a child with diabetes?
The classes from the nurse educator were the first step. I did online research, but it wasn’t terribly helpful at the time in the 90s. Now there is a plethora of information out there for those who have diabetes. I made sure to read diabetes magazine and to check out the various companies who made insulin pumps as well as blood sugar monitors to always be on top of things.
14 What was your best source of information?
I would have to say both the medical support team (endocrinologist and nurse educator) as well as the various companies who made the insulin pump and the intravenous blood sugar monitoring system.
15 What is your best advice for a nanny or a parent who has to care for a child with diabetes?
Keep records of everything. The smallest thing could give you a clue as to why you have abnormal blood sugar results after regularly treating with insulin.
Get a support team. Find an endocrinologist who can talk to you at all times, day or night.
Do as much research as you can online and subscribe to the magazines. Join online support groups.
Don’t make your child the disease. No child likes the label of disease.
Empower your child to become their own advocate and to be able to treat their disease. This goes with the label idea. If the child is old enough and can understand. We used to send choices in the lunch with a note that said how many of each item the child could eat or had to eat because of the long lasting insulin. This empowerment gave the child the freedom to be normal. Teach the child’s trusted friends to become a support group too. K suffered a very low blood sugar in 6th grade. Had her friends not been able to notice the signs, it could have been a real disaster.
16 What have you learned from this experience?
I think the thing that sticks with me is the not making the child the disease. I currently work with a child who was born deaf and has cochlear implants. She functions as a normal hearing child. I make sure to make others see that she is normal. When someone asks about her implants, I promptly take off my own hearing aid and show them what it’s like and explain that it’s just like wearing glasses only she can’t hear without her devices.
17 Was it hard for this child to make the necessary changes in their lifestyle to live
with her disease?
It was big learning curve. You suddenly become conscious of carbohydrates. You measure everything and read every label. You “guestimate” when you go out to eat, learning to visualize portion size on sight. You log everything, blood sugar numbers, and amounts of foods eaten/types of food.
18 Can you share with us what was helpful to her, and what was helpful to you in supporting her?
Learning to subtly remind her to check blood sugars. Learning tact so that you don’t make the child feel awkward. Always making sure the child has supplies needed (glucose tabs, juice, glucagon shot, test strips for the monitor, etc.) so it doesn’t become an issue of treatment. Teaching those around the child when not in your company know how to treat your child or help the child treat their self.
19. Was there a bright spot in this diagnosis? for you as a nanny? for the child diagnosed?
The only bright spot is that she became an activist and an advocate for her disease. She spoke at the Children’s Congress with another former charge of mine to create awareness. Her parents along with another family I worked with started a campaign to get funding in California for research of all diseases. There were a lot of interviews and national media attention. The bond initiative did pass. She’s still called upon by the governor at times for press conferences regarding this initiative.
20. Anything else you would like to add?
Learn the warning signs of this disease. They include sudden rapid weight loss, constant thirst and subsequent extreme trips to urinate, including wetting the bed. Extreme hunger is another sign because the body is burning sugar rapidly and ridding it through urination. Sever lethargy caused by extreme high blood sugars and strange unexplained behaviors. K once explained to me that high blood sugars were like having a severe headache and a heavy weight on the body.
For further information visit these websites:
Juvenile Diabetes Research Foundation
For Kids: JDRF a website for kids
American Diabetes Association
Diabetes Type 1: Medline Plus
Diabetes Teen Talk