Type 1 Diabetes In Our House
This was the beginning of a new kind of life for our family, and the beginning of Brian's climb back to health after being a very sick boy.
What does it mean to have a child with Type 1 diabetes?
Welcome to Diabetesland
A diagnosis of diabetes for your child changes your lives forever. In some ways, it's a bigger change than having a child in the first place. It is definitely less fun. Some liken it to falling down Alice's rabbit hole into "Diabetesland" - nothing is as it used to be and sometimes things make no sense. It could be compared to all the most difficult parts of having a new baby, but without the preparation and the perks.
There are no parties to help you get ready, no months of gestational planning and anticipation in which to prepare. Your child goes to the hospital and your whole family comes out different. Most likely, no one you know has been in the same boat. If you do find someone who has, you cling to them as to a life raft. While there is no ubiquitous "Dr. Spock" or "What To Expect When You're Expecting" to refer back to, there are excellent reference books. You keep them by your bed to read when you can't fall back to sleep after testing blood sugars in the middle of the night.
There are the sleepless nights and the worried calls to the doctor. But the "growth chart" is likely to show discouraging news, rather than happy progress, as pancreatic function decreases. Instead of changing foods as the baby grows, you change insulins as newer ones come on the market. Your conversations center on "What insulin regimen is your child on?" instead of "What foods does your baby eat now?"
Insulin doses must be matched to carbohydrates so every mouthful of food is tracked and accounted for. You know your teen's blood sugar and hormone levels intimately - an inevitable invasion of their personal space. You try to juggle in your head the dozens of factors that can change blood sugar levels and take them into account when planning food and insulin doses. Exercise can shoot blood sugars sky high with adrenaline, only to have them crash down later. Or it can drop blood sugars as the exercise causes more efficient use of the available insulin. Illness can also make blood sugar levels go up, or it can make them go down. Welcome to the roller coaster.
And yet, life goes on. School and play dates and camping trips still happen, but with diabetes always running in the background. Because of the availability of insulin, Type 1 diabetes is no longer an inevitable death sentence, although it remains life threatening.
How Did We Know? - Our
We found out that Brian had Type 1 diabetes on a Monday afternoon. His teacher sent word to me that Brian was too sick and lethargic to be at school and he needed to go home. Since school was in Menlo Park, and home was 22 miles away in San Jose, and since Alison had a lingering cold that might be heading for an ear infection, I collected both kids and headed to the urgent care drop-in branch of the San Jose Medical Clinic. Once we were there, Alison was diagnosed with an ear infection and they took a look at Brian.
Brian's presenting symptoms were lethargy, frequent urination, thirst, dry skin, sunken eyes (from dehydration), and a stomach ache. A dipstick test showed sugar in his urine. A blood draw showed a blood sugar of 504, where the normal range is 70-120 mg/dl. They called ahead to the hospital and told us to go straight there and under no circumstances to stop for any food along the way. I called Bart and he left work to meet us there. As the kids and I headed out the door to go to Alexian Brother's Hospital, the clinic's background music was playing Gloria Gaynor's “I Will Survive.”
Prior to that Monday, Brian had spent the weekend sleeping and resting. He had no fever and no signs of any particular illness. Looking back, the diabetes symptoms started weeks or months before that February weekend. They came on gradually and there was always an easy alternative explanation until that fateful Monday.
The previous December, Brian had a vague viral illness
him out of school for a couple of days and left him tired. He didn't
spring back as fast as he usually did, but we attributed that to all
the activities. Bart's parents and his sister and brother-in-law with
their three kids were all staying with us for the holidays. What kid
wouldn't be tired?
In January, Brian and
Alison were in an after-school musical production at Mulberry
Elementary School. Brian would often lie down and rest during
rehearsals when it wasn't time for his particular part. We still
thought it might be a relapse of that December virus, or maybe
something to do with the incessant rain - it was an El Nino year. We
were distracted from taking a closer look at Brian's lethargy by many
things. We were busy back at school, working on the after school
musical, and tending
to Bart's father, Oscar, who had an emergency pacemaker installed in
January, during his visit with us. We were very glad that his heart
problem surfaced while he was with us on the mainland and we could
help with all the logistics.
After Oscar was recovered enough to drive home with Alie to Washington State, we were distracted further by a broken sewer pipe in our crawl space and some confusion during the continuing torrential rains as to the source of the flooding in the dirt under the house. Brian kept dozing off during a meal out on February 5 for my birthday (since the water in the house had been turned off for repairs), but once again we attributed it to the hectic winter events. The changes in Brian - the dry skin, the hollow eyes, the weight loss, the lethargy - crept up on us so gradually that we didn't see their importance.
We have Brian's teacher, Gail Buschini, and her assistant, Eileen Van Rheenen, to thank for the push that got us to the clinic. Knowing that the house plumbing was repaired, the Mulberry musical was nearly ready for production, the relatives were all settled back in their own houses and Brian had spent a weekend sleeping and resting, we no longer had any explanations left. We left Peninsula School that day looking for a professional answer. We are so grateful for the competent medical team at the clinic who diagnosed diabetes on the spot, and for Gail's insistence that Brian was truly unwell.
In the hospital, they immediately put an IV in Brian's arm and started him on a drip with insulin. Every hour or so, day and night, a nurse would come in and prick his finger for a drop of blood to test his blood sugar. Bart dozed in a recliner next to Brian that first night and I took Alison to the first night of tech week. The musical she and Brian had been rehearsing was starting to set up in the theater for their performances on that coming weekend. My dear friend Ann McInnis, to whom I am eternally grateful, offered to take Alison home with her, ear drops and all, and to get her to a school carpool and to the show rehearsal the next night as well. Alison spent two nights with Ann and we were able to concentrate on dealing with Brian and the hospital. Brian spent Tuesday night at the hospital while I spent the night in the recliner next to him and Bart went home to get some sleep.
On Wednesday morning, the nurse came in to show Brian how to give himself a shot. She said they wouldn't let him go home until he had given himself at least one shot. They didn't mind if anyone else did them after that, but they wanted to know that Brian knew how. After he did his first shot, he chose not to let anyone else do it. He wanted full control over when that poke went in. We went home with a prescription for a One Touch Profile blood glucose meter and two kind of insulin: NPH for nighttime and background coverage and Regular to be injected 15 minutes before any food or meal.
The insulin went to work immediately and the change in
Brian was dramatic. He began to regain his energy and by Saturday was
up to performing his part in the musical he had been rehearsing for
Brian's first shots were traumatic. It took him nearly 45 minutes to steel himself each time he needed one. He did his first fast shot when he was in a hurry. His endocrinologist appointment had run late and he wanted to get to school before it ended so that he could give his classmates the candy Valentines he had prepared for all of them. After that, fast shots were easier.
so we settled into something of a routine. Brian and
I took classes at the clinic to learn about diabetes:
how to count carbohydrates and adjust insulin doses, how to treat the
shaky, anxious symptoms of a low blood sugar
from too much insulin or
too little food, and many other details. Every mealtime
started with a test, counting carbs and calculating the insulin dose,
Brian doing a shot, a 15 minute wait, and then food. It is
somewhat ironic that Brian's diabetes led to a regular dessert time
which we had never had before. Ice cream at bedtime gave
Brian some carbohydrates that would last into the night with absorption
by the fat. Often, the rest of us would join him in having a little
Brian's Profile blood glucose meter came with a spring
loaded lancet to
help him get the hanging drop of blood he needed for the 45 second test
that would tell us his blood sugar. Newer model Ultra meters still use
loaded lancet, but require a small drop of blood and take only 5
seconds for the results.
Brian was almost always in range before each test and woke up with normal blood sugar levels nearly every morning. We didn't realize then that his body was still producing some of its own insulin which dealt with the extra glucose in his blood. This phase of diabetes is called the “honeymoon” and in our case it really was. For the first couple of years after diagnosis, Brian's blood sugar numbers were kept in good control with a regimen of 4-6 shots a day (mealtimes and bedtime) and a couple of scheduled snacks to cover insulin peaks and to give him some carbs through the night.
In time, Brian's pancreas stopped producing any significant insulin and his body started producing and responding to the growth hormones of puberty. This combination meant that his blood sugars became much more erratic and difficult to predict and control. Blood sugars were no longer self-leveling from his own insulin. Growth hormones trigger their own unpredictable increases in blood sugar from glucose stored in the liver. Nearly every morning Brian would wake up with a high blood sugar because his growth hormones kicked in just before dawn or because his body was releasing glucose to give him the energy to rise and shine (called the Dawn Phenomenon).
In an effort towards better control, we switched to each of the new insulins as they came on the market - Ultralente for a longer acting nighttime background insulin. Humalog for a faster acting pre-meal shot that he could take when he ate instead of having to wait 15 minutes before eating. Lantus was supposed to last for a full 24 hours and be nearly peakless, removing the necessity of a snack at 3 p.m. But Brian was one of the minority for whom the effects wore out in the afternoon and it also delivered a sharp peak a couple of hours after his bedtime shot. We then split the Lantus dose between evening and morning to spread out the highs and lows.We started testing at night to make sure he didn't drop dangerously low.
Now Brian uses a Minimed insulin pump. He got his first one, a 511, in early January, 2003 and upgraded to a model 512 in 2004. The pump is about the size of a cell phone. It fits in his pocket and connects to a thin plastic tube that snakes up under his shirt and is inserted into the subcutaneous tissue (fat) of his abdomen. The inch long metal needle that is used to get the tubing through his skin is removed after insertion so that all that remains in place is a “cannula” - a slim tube the thickness of a pencil lead refill - and a round sticky band-aid like patch to hold the insertion set in place. The site works well for 2-3 days and then needs to be removed and a new one inserted in another location.
The pump doesn't monitor blood sugar or make any decisions about doses. It is a higher tech, more adjustable replacement for syringes and shots. Brian had been doing 8-10 shots a day to to meet the needs of blood sugar adjustments, meals, snacks and two long-acting insulin doses. He now does one set (cannula) insertion every 2-3 days. It's a bigger needle and hurts for a while after the spring loaded “kachunger” (our technical term) pushes the needle in. But after that, every dose comes at the push of a few buttons on the pump.
The pump delivers a steady background dose of
through this tube (the "basal rate") that replaces his need for long
acting insulin. The programmability of the pump means that
doses of insulin can be programmed to be delivered at different time
of the day. We can program a higher basal rate during those
pre-dawn hours to counteract the glucose from the growth hormones.
Ideally, this means that his insulin delivery can be accurately
tailored to his cyclical daily metabolic needs.
Unfortunately, those basal needs don't
stay constant. I can tell when Brian is growing because we'll need to
adjust his basal rate upward. And I can tell when a growth spurt ends
because he'll drop low and we have to adjust the basal rates back
down. His insulin requirements drop when he exercises. His blood
sugar spikes when he's excited or angry or watches a scary movie. If
he exercises strenuously, as with a day of skiing or at the beach,
his insulin needs can stay lower for another day afterward and he
risks dangerous low blood sugars if we don't make adjustments. The pump
can make those adjustments easier, but we have to know what to tell it
to do. This is always something of a guessing game.
The pump can help with meal dose
amount of insulin Brian needs to cover each gram of carbohydrate
varies with the time of day and is determined by trial and error. The
pump can be programmed to remember
different ratios. And it can remember his different correction ratios
- how sensitive Brian is during different times of day to the insulin
needed to bring down a high blood sugar. The pump doesn't help find
these ratios, though. They are all derived by lots
of trial and lots of error as we look for patterns of highs or
lows amid a sea of random influences.
An important factor in determining insulin dose amount and timing is the composition of food in each meal. The insulin is absorbed and continues to act over several hours, somewhere between 4 and 6 hours for Brian. The glucose from the carbohydrates in a meal can hit quickly, in as fast as 15 minutes for simple starches with a high glycemic index, longer for more complex carbohydrates, or very slowly, up to 6 to 8 hours, for meals containing enough fat to delay digestion. Brian can tell the pump to deliver a bolus slowly over several hours if the fat in the meal will delay the absorption of the carbs. This is known as the "pizza bolus." How much delay for how much fat is a matter of some debate and of great celebration when it is figured accurately. Matching the insulin timing to the food absorption is always a challenge and, once again, involves lots of trial and error.
It is impossible to predict exactly how the body will
to food and insulin. Brian needs to test his blood sugar an hour or two
after each meal to make sure his dose was appropriate. Sometimes
insulin delivery from the pump can be accidentally interrupted, causing
high blood sugars. It can take several hours to bring high blood sugars
back into range. Glucose tablets can bring up a low in 15 minutes if
they are given before the low leads to loss of consciousness or
seizure. Keeping Brian's blood sugar steady involves balancing
carbohydrates, digestion, insulin, fast acting glucose and at least a
dozen other factors. It can get tricky. Sometimes I feel like the
circus performer with all those spinning plates on top of poles.
Blood sugar control is important for more than health reasons. If Brian's blood sugars are high, he has a difficult time performing mental calculations. So every school night, and often on other nights if he isn't staying up late himself, I set an alarm and test his blood sugar at 3 a.m. I can test him without waking him fully, but we both feel less rested in the morning when I've done a night test. Thanks to the pump, I can now give him insulin without adding yet another poke to the ordeal. This lets me correct any imbalances so that he wakes up in range and ready for school.
(Even this isn't foolproof, though. In the spring of Brian's sophomore year of high school, there was a night during finals week when my alarm didn't go off and Brian's pump tubing got disconnected from his insertion site. He was without insulin for long enough for his body to develop ketones along with high blood sugar and he was too sick all the next day to take his finals.)
If the pump is correctly programmed, and if the food
digestion matches the insulin absorption,
Brian can enter into the pump the grams of
carbohydrates in the meal he's about to
eat and a current blood sugar value and get a recommended dosage that
will keep his blood sugars in range while he digests.When all the
adjusted accurately in the pump, it is a miracle of technology.
looking forward to enjoying that when and if it ever happens.
Is Type 1 Diabetes Anyway?
First, forget about everything you ever knew about Type 2 ("adult onset") diabetes. While Types 1 and 2 diabetes have some symptoms and some treatments in common, they are such different animals as to belong on opposite sides of the zoo.
Type 1 diabetes is an autoimmune disease. It occurs most often in people who have certain genetic combinations that make them susceptible. Upon exposure to an external stimulus - possibly a virus - diabetes develops. Diabetes arises when the insulin producing islet cells of the pancreas are destroyed. This destruction is actually carried out by the body's own immune system which somehow fails to distinguish between an invader and pancreatic islet cells in the vicinity of the invader. It takes time after triggering diabetes for all of the islet cells to be destroyed. Some cases progress faster than others. There appears to be a genetic component to the rate of onset. Even after diabetes is diagnosed, some insulin production remains, leading to the honeymoon period. There is some indication that early detection of diabetes and intervention can prolong the honeymoon and its protection against high blood sugars.
Since insulin is needed by the body to move glucose out
bloodstream and into the cells, the lack of islet cells causes blood
glucose levels to
rise. It also means that no glucose is getting into the cells and the
is starved for energy, even though blood sugar levels are high.
Maintaining steady blood sugar levels is important
to good health. High levels of blood glucose over prolonged
periods can lead to damage to nerves and those tiny blood vessels
called capillaries. This can lead to numbness or pain from nerve
damage, blindness from bleeding and scar tissue in the eye, and
kidney failure from tissue damage and the extra work of trying to
concentrations of glucose from the blood. So far Brian's eye checkup
results have been normal and he has shown no loss of feeling or nerve
damage except in the tips of the two fingers he uses for his multiple
daily blood sugar checks. His quarterly tests show that his average
blood glucose levels are higher that they should be. This puts him at
higher risk for complications
later on. We keep working on maintaining the tightest control we can
while trying to avoid the more acute dangers of low blood sugar levels.
A Cure For That?
Now and then the headlines will tout some breakthrough in diabetes and many of us who deal daily with the disease are asked if there isn't a cure yet. Unfortunately, no, there isn't. The cure will come when the autoimmune response can be stilled and the bodies own islet cells restored to previous functioning levels. There are several promising inroads into these areas, but no cure yet. Here are a few of the upcoming developments and their implications:
Pancreatic transplant. This is a solution of last resort, for people experiencing life threatening complications of diabetes such as kidney failure. It involves the transplantation of a cadaver donor pancreas and requires a subsequent lifetime of immunosuppressive drugs.These have their own side effects and complications and therefore preclude transplantation as an option for any but the most desperate. Kidney transplants often accompany pancreas transplants.
Islet cell transplantation. This is where isolated islet cells are infused into the liver through a large vein. It often takes several cadavers to get an adequate supply of islets and lifelong immunosuppressive drugs are still needed. This procedure has led to a number of people going off of insulin since the development of an immunosuppressive regimen that did not in itself kill the islet cells. This is called the Edmonton protocol after the location where it was pioneered in Canada. Some patients have remained insulin free for over a year, but it is not seen as a permanent cure. The negative effects of the immunosuppressive drugs preclude the use of this procedure on children.
Encapsulated islet cells are a physiological solution that has been tried but has not yet been developed to marketable levels. In this treatment, foreign (to the patient) islet cells are protected by a permeable membrane so that blood glucose levels can trigger the release of insulin and insulin can flow out, but the islet cells themselves are shielded from attack by the immune system. No immunosuppressive drugs are necessary. Non-human islet cells, as of pigs, can be used for this. Pig insulin differs only slightly from human insulin and was used for decades to treat diabetes. Modern insulin is manufactured by bacteria or yeasts that have been genetically modified to make human insulin.
Immune system retraining. Some researchers are looking into the possibility that the autoimmune response can be terminated. There is some indication that islet cell production continues, in some individuals at least. If the autoimmune response were to be stopped, it might be possible for the body's own islet cells to regenerate back to functional levels.
Somatic Cell Nuclear Transfer - also known as Stem Cells. One continuing question is where to get enough islet cells to treat all the people out there who need them. For some reason, islet cells don't grow well in a lab environment. Stem cells are cells that have the potential to become any kind of body cell and can be grown in culture more easily than islet cells. This makes them excellent candidates for mass islet transplantation. Somatic cell nuclear transfer involves putting the nucleus of one of the patient's own cells into a egg cell so that the resulting stem cells and (eventually) islet cells that are developed from it would be genetically identical to the patient. Such cells would not be rejected for being foreign. They might still be rejected for being islet cells, though, so this research still depends on research into short circuiting the autoimmune response. The optimum result of this research would be a patient restored to a pre-diabetes state with no need for insulin or immunosuppressive drugs.
Closed-loop mechanical artificial pancreas. This requires several parts, some of which have already been developed, some not. A true closed loop system would need a constant glucose sensor, probably implanted under the skin or in the abdominal cavity. This sensor would talk to an insulin delivery system, also implanted somewhere, sort of like a pacemaker. This would avoid the necessity of having to change delivery locations as is necessary with the current pump technology. There have been some inroads in this area and there has been at least one trial of a closed loop system. But as of 2005, nothing is on the market in the U.S.
A welcome step towards this would be a continuous
monitor with a sensor inserted under the skin, even if it needed
to move to a new location every few days as with the pump. This sensor
would give periodic blood glucose readouts (every 5 minutes or
so) and would sound an alarm if blood sugar levels got too high or
too low. This would remove much of the pain involved in doing blood
sugar tests and
would lead to more rapid response to deviant blood sugars. This technology
may be on the
general market late in 2006. It is currently being tested by at least
When the cure comes and Brian is finally and permanently
free of having to use exogenous insulin, we are going to have the
biggest Cure Party we can throw. We'll have a huge cake shaped like an
insulin pump that we can then slice up into little bits. I've promised
Brian that he can blow up one of his glucose meters (we'll donate the
rest of his equipment to someone who needs it). Meanwhile, we'll
keep writing letters to legislators and sending in money for research.
Some days, diabetes colors every facet of the day, other days it runs more in the background. But it is always there and it is never easy.
It affects the meals we eat, the vacations we choose, the first thing we think of in the morning and the last thing we check on at night. Most nights, I check Brian midway through, at around 3 a.m.
Brian spent his elementary school years at Peninsula School, a progressive school in Menlo Park, California. Peninsula provided an environment that encouraged independence and had the flexibility to adjust to Brian's diabetes. He could eat breakfast in class if he woke up with a high blood sugar and needed to wait for it to come down before he ate. The teachers rely on their own understanding of each child's ability in each subject rather than on grades. This meant that he was not penalized by the effects of variations in his blood sugars. He had teachers willing to help with reminders and other diabetes management when he went on class camping trips without his mom or dad. He could be one of the kids without being reminded constantly of the differences diabetes made in his life.
When Brian started high school, we found that it was
him to start the day with his blood sugar in range. Out of range
blood sugar levels, especially if he is high, affect his ability to
think and reason. Math is especially vulnerable to this and can't be
done well at levels over about 150. Since an insertion site that goes
bad can rocket him up over 300, night tests are a necessity. This
makes both of us groggy during the day, which has further
implications in diabetes management.
July 2004, the whole family went to a Friends
conference put together by the folks at childrenwithdiabetes.com (CWD).
about the latest in diabetes care and research and we attended seminars
where we could discuss our own perspectives as parents or siblings or
as a person with diabetes. We had fun
in the pool
and met athletes with diabetes. And, most important of all, we had a
chance to connect with other families who are in the same situation as
we are. Some of them we had "known" for years from the CWD email list
but only got to meet in person at the conference.
People sometimes ask me when Brian is going to get stable. Maybe they know someone whose diabetes doesn't seem to interfere in any way with their life. Or maybe they remember how smoothly things seemed to run in the early years after Brian's diagnosis, where our diligence was supplemented by Brian's own endogenous insulin. But diabetes is never truly stable. There are just too many variables that can throw off even the most regulated routine: illness, activity level, emotion, social occasions, equipment failure, a miscalculation, a moment of absentmindedness.
Often when someone asks me how Brian is doing, I'll say
or even “great” and, on many levels, this is true. When I say
this, I mean that our days have not been
overshadowed by the fact that diabetes also lives at our
house, and that nothing has drastically changed for the worse. I
count my blessings that diabetes has never landed Brian
back in the hospital since his diagnosis. "Fine" means all of that. It
isn't that the diabetes is any more stable or easy to deal
with, only that I don't want to dwell on those bits.
Life does go on, thanks to Banting,
Best, Collip and MacLeod. We still have lively discussions around
the dinner table, most of them not about diabetes. We participate
in various individual and family
hobbies. We travel some. We have even benefited in some ways from
having diabetes in our house. It has made it essential for us to work
to keep the familial lines of communication open so that we can
give support and talk about care plans as well as
non-diabetes topics. It has brought us in contact with a warm and
supportive online community of other parents, some of whom we've been
lucky enough to meet in person.
Thanks to insulin, I have a healthy family whose company
continue to enjoy.
Children With Diabetes. Bart found this website
Brian was diagnosed. He read me tips and support pointers off of it
while I learned the ropes of running a household with diabetes in it.
After a couple of years, in January 2000, I jumped into the world of
email for the first time and joined the cwd parents support list
myself. Best move I ever made. It's a one-stop shop for the latest
info and the people who really know: other parents of kids with
Juvenile Diabetes Research Foundation. They handle
sorts of stuff - education, support, and fundraising towards a cure.
Send a check to them instead of a gift to me, any time.
Comparison of Insulin
How to decide among the many different insulin pumps available on the
market? Here is a table that summarizes some of the differences. It is
not easy to know at first which factors will be most important in your
(The Pink Panther Book). This handy online version covers all aspects
of diabetes care.
Walsh knows his way around insulin pumps. This book is a great
reference whether you are considering an insulin pump, are just
learning how to use a new one, or want to make the most of the pump you
already have. Available through your local bookstore or online through
Amazon or Diabetes Mall.
Gallows Humor? -
Holiday songs adapted for those who deal with diabetes, with a couple
of contributions by yours truly.
These are bits gleaned
parents of children with diabetes. More to come later.
“Remember, it's 'Hi, how are you,' not 'How high are you,' ”
page was last updated on June 25, 2006