Ryan's Diabetes Story

In January, 2006 while vacationing in Mexico, Ryan mentioned that he was thirsty even after he had something to drink. Since my dad had had type 1 diabetes I knew in the back of my mind that this is a symptom…but I rationalized that we were in a hot climate and had travelled by airplane so Ryan may be dehydrated. I encouraged him to drink more.

Bill wondered out loud if Ryan had lost weight. Again I rationalized that he was a skinny kid anyway and that he wore baggy clothes so it was hard to tell.

The third sign that was impossible to ignore was on our flight home Ryan had to use the bathroom three times on a short flight. I pointed this out to Bill. Before Ryan went back to school, Bill had him leave a urine sample which he took to the veterinary hospital. He diagnosed him and then contacted Ryan’s pediatrician who ordered blood tests.

With a blood glucose level over 600, we were instructed to take Ryan to the hospital where he would spend two nights. We spent those days learning the things we needed to know in order for Ryan to be healthy.

Type one diabetes is an extremely complicated and varied disease. It is nothing like your father’s or aunt’s or grandparents’ type two diabetes. We have learned that keeping Ryan’s blood glucose levels in normal range (80-150) requires frequent blood sugar checks, adjustments, tweaking, recalculations and lots of guessing. And even then, it is virtually impossible to keep him in range all the time. Not only that, but this is the experience of every other person with type one diabetes.

There are so many factors that affect blood sugar. Ryan counts his carbohydrates and calculates how much insulin to give himself based on a frequently changing formula. He does not restrict his carbs. He does not need to. He can eat just about anything everybody else eats although he avoids regular soda and pancake syrup. Pizza and Mexican food can be tricky too. He even has eaten most of his Halloween candy. Well, whatever I didn’t eat first.

Other factors that affect blood sugar include stress, illness, exercise, adrenaline, hormones. Things that are next to impossible to account for. That is why most type one diabetics rely on frequent blood sugar checks and adjustments to their insulin dosages.

In spite of Ryan’s diligence he is often out of range. Low blood sugar arises when he gets too much insulin. This can be caused by not eating enough carbs, exercise or mystery causes. Low blood sugar is potentially life threatening and scary. Ryan gets sweaty, shaky, and can’t think straight. Luckily he feels his lows and is able to treat them with glucose. He can’t concentrate when low.

High blood sugars come about when Ryan doesn’t get enough insulin. This can be caused by insulin not absorbing well, miscalculating carbs or exercise, adrenaline or other things. Ryan needs insulin. If his blood sugar is really high (300 or up) he gets agitated, angry, can’t concentrate. Frequent high blood glucose levels can cause long term health complications.

Lots of people have misconceptions about the differences between type 1 and type 2 diabetes. Or they’re just confused about diabetes. Ryan did nothing to cause his diabetes. I did nothing to cause his diabetes. Ryan cannot control his diabetes with diet and exercise. Insulin is not a cure. Ryan cannot use “mind over matter” when he is high or low. He needs to treat his disease appropriately and wait until his blood sugar is in range. He will not grow out of this.

Thank you for reading about Ryan. On World Diabetes Day, I’m sure most people know someone with some form of Diabetes. Today I will be remembering my Dad who died from complications from type 1 diabetes. I will also be hoping for a cure for Ryan and everyone else who has diabetes.

Kids caught in the middle

Seven-year-old Kiley Rechs is startingsecond grade this week. She’s got new school clothes and a new backpack stuffed with school supplies. But she will also be armed with an insulin pump and a blood test kit.

Kiley has Type 1 diabetes, and keeping her safe and healthy at school is her parents’ primary concern. Lindsay Rechs, Kiley’s mother, is grateful to the Chico Unified School District for how it handles Kiley’s diabetes.

Kiley needs blood glucose checks at snack time, lunch time, before PE and at school parties. “We are very fortunate in our school district. The school nurses are there when we need them. I know other districts don’t have that,” Rechs said.

And that’s the rub. In 2007, the American Diabetes Association and the California Department of Education reached a landmark agreement that detailed the rights of students with diabetes to receive care. The agreement included a controversial provision that, when licensed medical personnel were not available, other school professionals who volunteered to be trained could administer insulin.

This did not sit well with nurses’ groups, and they sued.

In its ruling on the case, the trial court agreed that unlicensed but trained school personnel should be able to administer insulin to diabetic students. But it also found they were not authorized to do so under current law. The Appellate Court affirmed this ruling. The ADA is asking the California Supreme Court to review the decision.

School nurses in Chico and elsewhere applaud the ruling, as do parents of diabetic children in districts with sufficient nurses. But in districts whose nursing staffs have been hit by budget cuts, it’s put a burden on the schools, forced parents to come to school frequently to administer insulin or otherwise assist their children, and put children at risk of receiving inadequate care.

As far as the ADA is concerned, the nurses are interested primarily in protecting their jobs. The nurses and their backers insist it’s a matter of safety. Diabetic children are caught in the middle.

A person with Type 1 diabetes, also called juvenile diabetes, doesn’t produce any insulin, a hormone generated by the pancreas to change glucose in the blood into energy. Without insulin, glucose builds up in the blood, causing high blood sugar that over time can lead to serious medical conditions, including coma and even death.

People with Type 1 diabetes need insulin to survive. Many—like my son Ryan, who’s 15—use insulin pumps. The pumps are attached to the body through an infusion site, a tiny catheter inserted subcutaneously that allows insulin to be delivered as needed.

Complicating diabetes care is the ever-changing need for insulin. In addition to carbohydrates eaten, other factors that affect blood glucose levels are exercise, adrenaline, stress, illness and hormones, things that are hard to anticipate. People with diabetes, especially Type 1 diabetes, must check blood glucose levels throughout the day and frequently adjust their insulin.

Keeping children with diabetes safe at school is at the heart of the 2007 ADA-CDE agreement.

“The ADA began negotiating with the state of California to try to ensure that kids with diabetes had their health needs met,” recounted Lisa Murdock, director of government affairs in California for the ADA. “We have been working on this issue for more than a decade. We had legislation passed that any school employee can be trained to administer glucagon [emergency treatment for low blood sugar]. We had legislation passed that children with diabetes can self-manage their disease and carry supplies anywhere they want and anywhere they need.

“The one holdout piece of legislation is the kids’ access to insulin. We had legislation passed that would allow trained school employees to administer it. [Former Gov.] Gray Davis vetoed it.”

The ADA-CDE agreement attempted to rectify that lack, but the nurses didn’t favor it.

“The agreement [between the ADA and the CDE] is very frightening,” said Julie Parker, a school nurse for the Chico Unified School District. “According to the agreement anybody can be trained. You cannot train the secretary to give insulin. It would be a very dangerous situation to allow a secretary to administer insulin.”

The issue is personal for Parker. Her nephew, 8-year-old Morrison Parker, has diabetes. “We do not want someone not medically trained administering insulin to Morrison,” said Ursula Parker, Morrison’s mother.

Morrison, who was diagnosed at 18 months, needs his blood glucose levels tested multiple times a day. This is done at school by a licensed vocational nurse who communicates with Morrison’s parents to receive instructions on how his insulin should be dosed or how many carbohydrates he should eat in his snacks.

There are about 65 students with diabetes in CUSD and 5.4 school nurses for the approximately 12,000 students in the district.

“Diabetes has increased substantially over the last 10 years,” said Dave Scott, director of education services at CUSD. “Diabetes care in school is a big part of what the school nurses and health aides do. CUSD is very fortunate to have an excellent team of nurses.”

Not all school districts in California are so lucky.

“School districts have said that parents have to come administer insulin during the school day,” said Murdock. “That is not always feasible. Kids have had to go without insulin. Kids who have high blood glucose levels have been sent home. Kids have been told they can’t eat lunch because their blood glucose level was high.

“The group of kids we are trying to protect is a fairly young group,” Murdock continued. “It is the kindergarten through fourth- or fifth-grade kids who need assistance. Thousands of kids are going back to school with no one to administer insulin. There is less money for the schools. There have been cuts across the board.

“It is an issue of job protection [on the part of the nurses],” Murdock insisted. “The ADA thinks there should be more school nurses. But we don’t think kids should be held hostage.”

Murdock points out 99 percent of insulin is safely administered by laypeople. Indeed, parents can designate surrogates to come in and administer insulin, people who are not medically licensed and are not relatives. The nurses are fine with that, Murdock says.

“We can train a secretary to watch a 7-year-old girl give herself insulin,” said Julie Parker, “but we can’t train the secretaries to administer the insulin themselves. It’s different for parents that live and breathe diabetes every day. The secretary is not qualified to make the choices necessary to dose insulin.”

“I can’t imagine how we would take care of Morrison if we didn’t have flexible jobs to take off and give his injections when medically trained staff is not available,” said Ursula Parker. “But I can see a situation where [the school] would be putting pressure on kids and parents to have the kids self-manage their injections and insulin delivery before they are ready to.”

"Act Your Age"

“Act your age.”

I was incredulous. And my son’s friend said it with all of the confidence of someone who knows exactly how someone “my age” should act, being that he is 15 years old and wise in all the ways that count in these matters.

Well, it was clear at the moment that someone needed to school him in what exactly women “my age” act like when they are told to “act your age”: I gave him a wedgie.

But then I began to wonder, how are 40 something year olds supposed to act? What is acting my age? Some women my age are grandmothers. Others, like Kelly Preston, are having babies. I myself am the mother of a 15 year old and a six year old. And not surprisingly I was one of the older moms picking up my son at kindergarten this year.

But who I am and how I am supposed to act is not based on my motherhood status or even the state of my skin tone (read: laugh lines and wrinkles). Frankly, if there is some sort of age appropriate way to act at this stage of my life, I didn’t get the memo. According to 15 year old boys, acting my age is more about what NOT to do…giving someone rabbit ears in a group photo or even, gasp, fist bumping. Not cool.

I think the directive to “act your age” coming from a 15 year old boy says more about his age and development than it does about mine. I remember being that age. He probably believes that there is some adult state of nirvana or confidence or something that is achievable. I’m pretty sure I believed that at some point, at some age or stage or my life I would “feel like an adult.”

Yeah, I’m still waiting for it. I don’t feel much older than I did at 15 or even 12. I’m certain that in most cases I act the way I’m supposed to…I pay my bills, I get my car serviced, I clean my house and prepare meals for my family. I am responsible. And I do NOT do any of the things women in denial about their age do like dress in low rider pants with my belly hanging out or get random body piercings or tattoos.

I guess having a teenager is God’s way of reminding me what I suspected in junior high: I am NOT cool. I am not funny. Every time I open my mouth I am just embarrassing myself. Yeah, yeah. What I have learned from the last 30 years of life experiences though, is I don’t care. When I laugh at myself, have fun in a crowd, get silly…I AM acting my age.

Writer's Block

I have writer’s block. Just yesterday I had blog title block. In fact, I’ve had blog title block for the last three or four months. Well, okay, years.

I would tell myself, “If you just come up with a pithy, humorous title, the blog will flow.” See, I have these random musings in my brain. Comments my kids make that crack me up. Quirky ideas that make me chuckle. Brilliant ideas that would benefit all mankind. But how can I blog unless I have a great name? An epic title worthy of all my musings. Ha.

I have an eclectic brain. So what is an eclectic original title? All the good ones are taken. Orange is the New Black…taken. Pride and Prejudice…taken. Gone With the Wind…taken. Decided that plagiarizing from best sellers was NOT the way to go. Came up with, “Ignore me at your peril.” And frankly, I’m still smitten with that one. But since this is not an advice blog entirely, I didn’t think that would fit. Plus that’s a tough order to live up to, giving good advice all the time.

As long as I didn’t have a title, I didn’t have to be writing. See how that works? And as long as I didn’t have a title, the ideas kept coming at me. I’d start them in my head…then get back to the problem of a title. What we have here is epic procrastination. But all good procrastinators know that you eventually have to stop…so you can find something else to procrastinate about.

So last night in my sleep I came up with “It was funnier in my head.” Doesn’t my subconscious know that I was procrastinating? Betrayed. Out of excuses.

Setting up the blog was the easy part, though. Until I typed in my title. It Was Funnier in my Head…taken. Yeah well, whatever. I’m using it anyway. Until a book with that title ends up on the New York Times Bestseller list, it is fair game as far as I’m concerned. So my problem is solved.

Pithy, humorous title adopted. Now, where are all those great ideas? Blank page. Blinking cursor. I’m back in the procrastinating game. Only this time I get to call it writer’s block. This blog business isn’t as easy as it looks.