Islets of Hope for persons with diabetes
By Lahle Wolfe
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A Word of Encouragement to the Newly Diagnosed
Managing diabetes is a challenge, especially at first. The honeymoon period can make things even more frustrating and unpredticable. It is important to remember that this phase will pass and over time your child (or you) will become more stable. Treating diabetes really does get easier over time.
Finding the support of others can be an important part of learning to cope with diabetes. Islets of Hope has many support groups for the newly diagnosed, parents, children, and even siblings of others with diabetes. Make new friends, learn new tips, and know that you don't have to go throught this alone.
The Diabetes Control and Complications Trial (DCCT)
The DCCT - National Institute of Diabetes and Digestive and Kidney Disease/NIH
Device to prolong the honeymoon period?
One study concluded that adolescents receiving intensive therapy for two weeks after type 1 diagnosis via the Biostator, an external artificial pancreas device, led to improved beta cell function (an induced honeymoon period) the subsequent year.
This is only creates a temporary honeymoon situation when very tight control for two week following diagnosis is employed. The device is device not covered by insurance, but the study is interesting. (See Shah SC, Malone JI, Simpson NE. A randomized trial of intensive insulin therapy in newly diagnosed insulin-dependent diabetes mellitus. N Engl J Med 1989 Mar 2;320(9):550-4.)
Aetna insurance considers the Biostator System, a device which functions as an artificial pancreas, experi- mental and investigational. The Biostator is a glucose- controlled insulin infusion system developed in the early 1980's for use by a physician trained in the device.
There are insufficient data in the published peer- reviewed medical literature documenting the safety and effectiveness of the Biostator. The Biostator is mainly used in research; it is rarely used in clinical practice.
The Honeymoon Phase
Is this a time to aim for tight blood sugar control for your child?
The Diabetes Control and Complications Trial (DCCT) (see sidebar) showed impressive data that the best way to avoid long-term complications of diabetes is by tightly controlling blood glucose levels. This data supports many other studies that also connect hyperglycemia (high blood glucose) with damage to many organs and tissues in the body. So the DCCT results showing benefits of tight control came as no surprise to many. . But the youngest people in the DCCT were 13 years old and other studies about younger children and the benefits of tight glucose control conflict.
The DCCT study demonstrated that multiple daily injections halted or eliminated long-term diabetes complications, but participants were also 3 times more likely to experience severe hypoglycemia. Hypoglycemia most commonly results from administering too much insulin, too little food, or too much excitement and activity -- all challenges with young children. That said, tight control is a balancing act that may be difficult in young children, especially for those who are newly diagnosed and unstable for a variety of reasons including the "honeymoon" phase.
What is the honeymoon phase (or honeymoon period)?
The honeymoon phase refers to the period of time shortly after the diagnosis of type 1 diabetes during which there is some restoration of insulin production by the pancreas. This is only a temporary situation and not an indication diabetes is either improving, in remission, or cured.
When insulin is injected, the pancreas may get a small "break" from having to produce insulin. This rest period may then stimulate the remaining beta cells to being to produce insulin. These remaining beta cells, however, will also eventually be destroyed and this temporary "honeymoon" period will revert back to a state of absolute insulin deficiency (no insulin production by the pancreas).
During the honeymoon phase blood glucose levels may improve to normal, or near-normal, levels. However, it is important that you do not stop taking insulin all together even during the honeymoon phase. Insulin doses will need to be adjusted to avoid hypoglycemia (low blood glucose) so it is critical that you are communicating honestly, and frequently, with your doctor. To stop taking insulin completely can quickly lead to diabetic ketoacidosis (DKA) especially for children and any person diagnosed less than a year. Unfortunately, like other honeymoons (the calm before the storm), diabetes honeymoon doesn't last forever; it may last for weeks, months, or occasionally, years and sometimes may appear "come and go." This can make it a challenge to manage blood glucose levels predictably in those who are newly diagnosed.
What makes managing blood glucose levels during this time be tricky is because the pancreas may produce some insulin on its own. This can be a contributing factor to hypoglycemia when a person's need for insulin is reduced because the pancreas is sporadically, unpredictably, producing insulin to supplement what is being administered via injection. What may appear to be the honeymoon phase and a reduced need for insulin (as evidenced by hypoglycemia) may in fact, be due to other things. When a person is newly diagnosed it may take time for figure out with accuracy all the faces of diabetes management including insulin-to-carb ratios, correction factors, basal (background) insulin, timing of shots, and how much carbohydrates raise your blood glucose.
Hypoglycemia and the need for insulin are affected by many including bathing, hot weather, excitement, food, and activity level. Only a trained health professional should help you determine what is causing your child's fluctuation in insulin needs and what to do about it.
How long does the honeymoon phase last?
This length and nature of this phase varies from person to person but honeymooning occurs during the first year of diagnosis and can last for weeks, months, and on rare occasion, for a year or longer. It is not consistent enough to predict if, when, and for how long it will last. And some may never experience noticeable honeymooning.
Can I do anything to prolong the honeymoon period?
Aside from maintaining tight glucose control, no. Although some studies report medical advances that may contribute to a prolonged honeymoon period unless you are part of a clinical trials program, there is really not much you can do at home. However, ceasing to take insulin, or having wild blood glucose fluctuations from out-of-control diabetes (especially hyperglycemia) may shorten the honeymoon phase. Even when requirements for insulin are significantly reduced during honeymooning you should never completely stop taking insulin or turn off your insulin pump. Your doctor needs to advise you during this tricky time as to what adjustments to make (eating more food, taking less insulin, changing basal rates, or timing of shots).
The older you are and the slower your onset of beta cells destruction (for example, in early onset of juvenile diabetes this happens more rapidly than in latent autoimmune diabetes), the more likely you are to experience the honeymoon phase, and the longer it will last. Therefore, young children are the least likely to honeymoon significantly, and those with latent onset autoimmune diabetes of adulthood ([LADA], also called slow-onset or type 1.5), older teens, and young adults more likely to honeymoon than are preteens and young children.
Many folks see honeymooning as a good thing. Personally, I found it just one more challenge to deal with when determining my daughter Elizabeth's insulin needs (she was diagnosed at age 4). There were many nights that she required absolutely no insulin at all and still stayed in a non-diabetic blood glucose range. This meant (she was on the pump) that I had to wake her during the night at least twice to feed her something just to give her insulin. Because honeymooning is unpredictable, it was not safe to just turn off her pump. This could have resulted in rapid return of diabetic ketoacidosis and another hospitalization.
I was glad when the honeymoon phase passed and Elizabeth's needs became more routine and predictable (it took over a year).
Do Not Stop Taking Insulin
There are three reasons why you should not stop insulin after being diagnosed with type 1 diabetes even during a honeymoon phase:
It this a time to strive for tight control?
This is a decision that needs to be made between you and your doctor because there are many things to consider with young children.
Control is sometimes especially difficult at diagnosis, something made even more challenging when the honeymooning phase begins. The complex process of insulin excretion from the islet cells can be damaged and insulin is not discharged into the blood stream immediately in response to a rise in glucose concentration and may release of pancreas insulin may be delayed. This in turn means that there can be an inappropriate surge of insulin from the pancreas after the glucose peak from a meal has passed causing hypoglycemia which may be severe enough to cause a seizure.
Death and coma from severe hypoglycemia related to insulin-dependent diabetes used to be rare. Deaths from DKA is much higher and death from hypoglycemic coma is only about 10 percent of those from DKA (about 175 a year). However, with the emergence of tight glucose control being used by more and more diabetics on insulin, hypoglycemia is fast becoming more common.
Until the Diabetes Control and Complications Trial (DCCT) demonstrated that tight control substantially prevents diabetic eye, kidney, nerve and cardiovascular complications, high blood glucose (hyperglycemia) and diabetic ketoacidosis were the main acute complications of the disease. But because tight control keeps average blood glucose levels lower, hypoglycemia has become more of a problem, especially among children who may completely lack the ability to sense hypoglycemia symptoms (hypoglycemia awareness). It is not until around the age of 5 or 6 that children can sense low blood glucose (although some children can at a much younger age) are usually unable to take corrective actions themselves (know when and how much fast sugar to ingest) until around age 9. According to the American Diabetes Association, people with diabetes account for about two-thirds of the estimated 48,000 persons hospitalized annually in the U.S. for hypoglycemia. How many of these persons are children?
Studies on tight control vs. long-term complications on children prior to the onset of puberty just have not provided any insight yet. It would make sense that the least damage done to the body at any time, childhood included, would be the best course of action.
However, young bodies are more dynamic than adult bodies; growing and highly sensitive to frequent, or even isolated severe episodes of hypoglycemia which may affect growth and certain aspects of cognitive ability.
According to Margaret Grey, associate dean of research and doctoral studies at Yale University, there are two ideologies on management for children. "Some people feel the clock is always ticking toward complications, so numbers should always be kept as low as possible. Others feel puberty is the real starting point for that clock and since the risks of complications before puberty are minimal, keeping children a little high can curtail other serious problems. Both ideas are supported by medical literature."
by the American Diabetes Association
ADA Complete Guide to Diabetes: Perhaps the most complete and authoritative resource on diabetes, American Diabetes Association Complete Guide to Diabetes covers everything from how to manage types 1 and 2 and gestational diabetes, to traveling with insulin, sick-day action plans, and recognizing hypoglycemia.
Other contents include information on symptoms, complications, exercise and nutrition, blood sugar control, sexual issues, drug therapies, insulin regimes, and much more. Plus, information for every parent about children, schools, and day care. This updated third edition features new information on medications, diabetes management and new therapies, and new treatments for diabetes complications.
Page Updated 03/27/2006