Living with Juvenile Diabetes

Living with Juvenile Diabetes

Clearing up misconceptions is the first step to dealing with this disease
by Wendy Myers

About four and a half years ago, my son was diagnosed with Type I Diabetes, aka Juvenile Diabetes or Diabetes Mellitus. This precipitous event has changed not only Alex's life but our lives, forever. What has surprised us the most over the years since are the gross misconceptions and the trivialization surrounding the disease, so I thought I'd try to let parents know what diabetes is and how it can affect your child.



Kids with diabetes are no more fragile than other kids. They just have to pay better attention to their overall health.

There are two types of diabetes, called, unsurprisingly, Type I and Type II. Type I Diabetes, while the rarer of the two overall, is more prevalent in children and adolescents. Basically, Type I Diabetes is a disease thought to be caused by the body's autoimmune system; it keeps the pancreas from making insulin. Insulin is the hormone that allows glucose to enter cells, providing energy to the body.  When the body has no insulin, the glucose cannot enter the cells, so it passes out through the body via the urine.  The body, unable to get energy from the glucose as it normally would, "steals" energy sources from other parts of the body (fat, major organs, etc.). A prolonged state of this is called ketoacidosis, and it causes dehydration, listlessness, thirstiness, and can lead to coma and death.

Symptoms to look for in your child include, but are not limited to, frequent urination, frequent thirst, listlessness, and sudden and extreme weight loss.  If you suspect diabetes, ask your doctor for a simple blood glucose finger-stick test. If the child is severely ill, take your child to the emergency room.  Since I am NOT a doctor, consult your physician rather than take what I have written as gospel.

Type II Diabetes is the more common of the diabetes types. It mostly occurs in older adults. Type II Diabetes usually is when the body makes insulin, but not enough for the size of the body or the body's cells cannot properly process the insulin into energy.  There is a longer time period before symptoms are noticed since the body is usually making some insulin.  Symptoms are the same but can also include blurry vision and numb extremities.

Treatment

Type I Diabetes must be treated with insulin injections. The biggest key is balancing these insulin injections against other factors that affect the sugar in the blood system such as diet, exercise, hormones, stress and illnesses (and many other intangible things).   Every single thing that a Type I does (and sometimes thinks about) affects the blood glucose level.

Type II Diabetes usually can be treated with oral medications, diet, exercise and weight control.  Many people with Type II Diabetes also need to take insulin injections as well to supplement the other treatments.  Some people with Type II Diabetes are fortunate enough to be able to control it simply by diet, exercise, and/or weight control and do not have to take any medications.

And now, the myths and misconceptions

Diabetes is the second most common childhood disease in this country.  In spite of the prevalence of diabetes in this society, it is a very misunderstood disease. It's particularly confusing when there are so many misconceptions out there about it.

MYTH:  You can "get rid" of diabetes.

MISCONCEPTIONS:  Type I:  "Oh, he'll outgrow it." Type II:  "Oh, I don't have it anymore."

TRUTH:  Once you have diabetes, you always have it.  THERE IS NO CURE FOR DIABETES!

I can't tell you the number of times that I have heard, "Well, at least Alex will outgrow it!"   No, he won't.  This disease will be with him for the rest of his life and, more than likely, he will die from diabetes.  The only thing that I have been able to figure where this misconception has arisen from is that maybe people are confusing it with a common childhood problem called hypoglycemia.  You can outgrow hypoglycemia if you had it as a child.  However, if you or your child has had hypoglycemia, be aware that many times you may develop Type II Diabetes later in life.  The connection there is unknown.

For Type II individuals with diabetes, they may have it under control with diet, exercise and/or weight control, but if they lose that control, the diabetes will "come back."  It never really went away.

There is no cure, miracle or otherwise, for diabetes.  And insulin is NOT a cure; it's simply a means of life support.

MYTH:  "He looks so healthy, you'd never know he was sick."

MISCONCEPTION:  Diabetes is a sickening or debilitating disease.

TRUTH:  Diabetes is NOT a sickening or debilitating disease.  Especially if kept in good control.

People with diabetes can do anything that they want.  There are many professional athletes with diabetes including professional football and baseball players.  Actually, people with diabetes who have it under good control are often healthier than the general population because they must maintain excellent diets and exercise habits to maintain that control.

MYTH:  You are not allowed to eat sugar.

MISCONCEPTION:  Any sugar will make diabetics sick or they will die if they eat sugar.

TRUTH:  Quite the opposite.

All food contains "sugar" in the form of carbohydrates.  People with diabetes will not die if they eat any sugar; in fact, they have to make sure that it's part of their diet.

All foods have carbohydrates, and the body's job is to turn these carbohydrates into glucose, the form of sugar that our body uses for energy.  So, in actuality, people with diabetes MUST have sugar.  As long as people with diabetes can work it into their diets, they can eat whatever they want.  It is, like the rest of us, in their best interests to make it a healthy type of sugar.

MYTH:  Diabetes is contagious.

MISCONCEPTION:  Since people with diabetes test their blood, it's a blood-borne disease.

TRUTH:  Uh, no. 

You cannot get diabetes from anybody else, at all, ever.  If Mom and/or Dad has diabetes, then you have a higher chance of getting it genetically, but you aren't going to get it from drinking from the same water fountain as somebody with it.

MYTH:  You have "sugar."

MISCONCEPTION:  You get diabetes by eating too much sugar.

TRUTH: Sugar intake does not cause diabetes.

Type I Diabetes is caused by an in-born autoimmune problem within the body that has nothing to do with dietary intake. Type II Diabetes is caused by the body not using the sugar properly.  Some overweight people may have it, but they don't have diabetes from eating too much sugar (although, some may be overweight from eating too much sugar). I actually had a woman ask me one time if my son had diabetes because I fed him too much sugar as an infant. Grrrrrrrr...

Just the FAQs

If you are a parent of a child who has a friend with diabetes, what do you need to know?  Here are some common questions and the answers that I would give you if your child was a friend of my son's.

Q: Can my child get diabetes from your child?
 
A: No.  See above.  It's a disease that you are born with the predilection for.  You can't get it from somebody else.



Worried about inviting a diabetic child to a birthday party? ASK! It's probably okay.

Q: What if I want to invite your child over for a birthday party? 

A:This is one of the most practical and frequent questions I get.  Please--don't NOT invite the friend because you're worried! For my son, I allow him to eat whatever he wants to at the party and then give him an extra shot for it. This is not true for all parents; it's just my personal policy for various reasons. IT VARIES FROM PERSON TO PERSON, SO PLEASE ALWAYS CHECK WITH THE PARENT FIRST!

Q: My child wants to invite your child over for a sleepover, but I'm afraid of the responsibility.
 
A: PLEASE don't be embarrassed to admit that.  It is a big responsibility. Instead of simply not inviting the child, talk to the parent and see if something can't be worked out.  For older children, they're often able to take care of their own diabetes.  For younger children, many parents will stop by to take care of what's needed.  I've known of so many children with diabetes who simply weren't invited to slumber parties and the like just because of fear and ignorance.  With a little planning and thinking ahead, you can keep a child with diabetes from really feeling left out!

Q: What if my children want to eat something that your child is not allowed to have?

A: This does happen quite frequently.  My kids are playing with the neighbor kids and everybody wants to take a break for some freeze pops.  I test my son and his sugar is too high to allow a snack.  Whatever do we do?  Well, my son is told that his sugar is too high for this particular snack and he'll have to find something else to do while they're all eating it.   Most times he'll shrug and say "okay" and go play by himself for awhile or sit and talk with the other kids.

The other thing that I do is offer him a snack that won't affect his sugar much (like a couple raw vegetables, a small amount of cheese and a glass of ice water with a bit of lemon juice squeezed into it).  That way, he's having a snack, too!

Under no circumstances would I make my friends and their children feel uncomfortable if they're eating in front of Alex when he's not allowed to have any.  I realize that some people may still feel uncomfortable about it, anyhow; but I'm telling you--don't!  Relax!  Most children with diabetes know the rules.  My son does already and he's only five!

Diabetes is a grossly underrated disease. More people die of diabetes each year than die from AIDS and Breast Cancer combined.  Yet, the government only gives diabetes research about 1/16th of what it gives to research toward cures for AIDS and breast cancer.  Diabetes is also the most expensive and prevalent disease in this country.  The only chance we have to save many lives (and yes, a lot of money, too) is to find a cure.


More about Wendy here. © 1999-2005 Wendy Myers, used by permission.

Comments

Guest's picture

thank you very much for this valuable information. My name is eddy and im 14. My sister is 11 years old and was diagnosed
with type 1 just yesterday and she is still in the hospital. im her big brother and i felt i really needed to look after her. once again i thank you for writing this. feel free to contact me by e-mail address. and i would love for you to share some other stories about your son and his diet and what he does to keep his levels where they should be.

thanks agauin, eddy

Mark's picture

My wife and I found out today that my 6 year old son has diabetes. We are both worried and upset. This really helped. Thank you.

CASSIE WATSON's picture

My daughter Ashlyn was diagnosed at the age of 9 and she is now 11. We were able to catch her early enough before it did any damage to her organs. My mother in law was also juvenile diab. We lost her at the age of 46. So we knew what the warning signs were. And you should see some of the looks I get when take her to b-day parties and I let them know about her. I let her have cake. She knows she can't have a big piece with a lot of icing, which too much icing makes her stomach hurt anyways. The carbs in that she's going to run off anyways. As far as pouch drinks and popcicles we look at the carbs. You can find some with below 4 carbs. That way she can still have the treats. She has learned to deal with it well. Which we have explained to her everything her grandmother went through. She passed 15 yrs ago and they have come such a long way with this kids to have a better life. I told my daughter from the get go. She has diabetes it does not have her. She controls her life and not the diesase. Wish everyone lots of luck and God Bless1

Sarah Nicole's picture

Hi! My 13 yr old niece (whom I take care of) was diagnosed with Type 1 diabetes just a few short hours ago and I am in fact sitting in the childrens hospital as we speak. I am really worried about her health, her new life, and everything that can go wrong. Reading your page has helped me to realize that she can have a normal life, with some rules of course. I am glad I can now go speak to her and we can make a plan with her providers on an educated level.

alissa's picture

My son was just diagnosed at 5 and I am reassured by your post that he can have a normal life.

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