What Parents of Kids With Type 1 Diabetes Want You To Know - A Guide

I have put together a short guide of often discussed or addressed issues parents of kids with t1 run into while out and about.  This guide can be shared online or printed and handed out as needed.  I only ask that you please not edit the document without asking first and please do not remove the credits at the bottom of the document.   If you have suggestions as to other items you'd like to see on the guide please feel free to leave a comment. Here's a copy to print.  What parents of t1s want you to know It's in PDF format.  You may need a PDF reader to view the document.  That can be downloaded for free at Adobe. Here's a copy to read:

What Parents of Kids with Type 1 Diabetes Want You To Know

A Guide

1. Type 1 Diabetes is an auto-immune disorder. That means that my child's immune system attacked the cells in the pancreas that produce insulin. His/Her pancreas no longer makes insulin. Type 1 diabetes is not caused by eating too much sugar, being overweight, being lazy or any other lifestyle choice. The exact cause is not known at this time.

2. Diet and exercise will not make Type 1 Diabetes go away. The impact diet and exercise has on my child's health is the same as any other person – with or without diabetes. It will keep them healthy, but they will still require supplemental insulin to survive.

3. I am not “drugging” my child by giving them insulin. Insulin is a hormone that is made in the beta cells of the pancreas. Every living person without diabetes produces insulin to help their cells absorb glucose to provide the fuel their cells need. Any food that contains carbohydrates break down into glucose in the body and this is what fuels those cells. In a person with Type 1 diabetes their pancreas does not produce insulin, so they require supplemental insulin through injections or an insulin pump for their body to be able to absorb the glucose for fuel.

4. Without insulin, my child with type 1 diabetes would slowly starve to death, despite eating food. Insulin acts as a “key” to open the cells so they can absorb the glucose in his/her blood. If there is not enough insulin in his/her system those cells will start burning fat for fuel and he/she may develop ketones which are a byproduct of that fat breakdown. Ketones may cause my child's blood to become acidic and result in a condition called diabetic ketoacidosis (DKA) which may result in a coma or death. Excess ketones, left untreated, can cause severe organ damage or even organ failure, especially in the kidneys. The only way to get rid of ketones is to give insulin. Increasing water consumption or IV fluids can aid in flushing out ketones, but will not get rid of them alone, without insulin.

5. I will never be as efficient as a pancreas at determining my child's insulin needs. We do use a formula to decide how much insulin he/she gets throughout the day, but it is a constantly changing formula and it is not always 100% accurate. So many things besides food can effect blood sugar levels, such as exercise, emotions, growth hormones, stress, illness...the list goes on and on. Because of this there will be times, often frequently, that my child's blood sugar may get too high or drop too low.

6. In the case of blood sugar levels that are too low my child is at a very immediate risk of seizure, coma or death if the blood sugar level is not addressed immediately. The quickest way to raise a low blood sugar is through very simple carbohydrate sources like fruit juice, candy, glucose tabs, cake icing, regular soda, or table sugar, just to name a few. Basically anything that is “pure sugar” and does not contain any fat or protein, as these may slow the absorption of the carbohydrates and fail to raise the low blood sugar quickly enough. In the event of a low blood sugar episode these items will not harm my child, and in reality may very well save his/her life. These are “emergency” items and go almost everywhere with us.

7. My child is not on a restricted diet. There is no food that is “off limits” to him/her. My child can eat the foods that he/she has always enjoyed, they just now must be accompanied by insulin to cover the amount of carbohydrates consumed. There is no right or wrong amount of insulin and a greater amount of insulin is not “bad”. Different foods may effect blood sugar levels differently, such as foods that are high in fat and slow digestion.

8. No, I will not take my child in the restroom to give his/her insulin injection. Public restrooms are germy. If you don't want to see him/her get a shot, then look away. Be thankful that you don't require a shot every time you eat something.

9. There is no such thing as a “good” or “bad” blood sugar number. There is only “in range” “high” or “low”. These numbers are used as a guide to assist in the correct dosing of insulin. They are not a “grade” or a judgment of how “bad” my child's type 1 diabetes is. If my child has numbers that are consistently out of range then a dosage adjustment may be needed. This may be due to several different factors, most of which have nothing to do with anything that me or my child are doing “right” or “wrong” in regards to diabetes care.

10. My child is a child first, and there are many times when being a child will come before type 1 diabetes. This doesn't mean that we are neglecting my child's health, it simply means there is more to his/her life than type 1 diabetes. Living with a chronic illness can wreak havoc on a child's emotional health and sometimes being given the chance to just be a kid and not having to worry about diabetes for a few hours is worth it to me, as a parent, as health outcomes are often better when the person is in a better state of mind.

11. This generation of people with diabetes are not likely to see long-term complications from type 1 diabetes. Telling horror stories about your relative who lost their limb or went blind from diabetes is not helpful to my child, or to me. There have been technological advances in the past decade that have made diabetes management much easier and more precise than in previous generations. Managed properly, people living with type 1 diabetes now have a long life ahead of them. In fact, people with diabetes are currently expected to live an average of 10 years longer than people without diabetes due to being more aware of their health status and are more likely to receive prompt medical care than their non-diabetic peers.

12. Type 1 Diabetes is a constant roller coaster that we live with every day. Some days are better than others. It takes a lot of patience and understanding to be a parent of a child with Type 1 Diabetes. I try to reserve my patience for my child. That may mean that I don't have any patience for you right now, which may be why you are reading this guide. Please don't take it personally. My days are hectic, my nights are hectic and chances are I haven't gotten enough sleep lately. I'm sure you mean well, but unless I asked for your advice or opinion, please keep it to yourself. I judge myself quite enough every day, I don't need you to judge me too. I wish I had the time and the energy to educate the entire world about type 1 diabetes, but I don't. I dislike having to constantly correct people's misconceptions, especially when they refuse to listen. My child and I are the ones living this life, unless you or your child also have type 1 diabetes, please don't try to educate me, especially if I haven't asked you to.

I am planning on possibly updating this periodically and I also have given it it's own dedicated page on this blog. See Also: http://blackdogsrule.com/things-i-want-you-to-know-about-type-1-diabetes/