Type 1 Diabetes: The Silent Killer

With the recent deaths of Type 1 Diabetic diagnosed children in the news, I want to pay my respects by sharing some signs that we went through with our son when he was diagnosed.  If sharing our story helps save even one more life, it was worth it.

Wyatt was a healthy baby.  He had occasional illnesses, but usually got better quickly.  In the spring before he was diagnosed, he got pneumonia.  I seem to also remember him getting a red rash that would move around his body when he was sick, and then go away after about two weeks.  Over that same summer, he started not wanting to eat very much.  He had always been a great eater, so this was odd for him.  His stomach also seemed distended and he was constipated.  Looking back at pictures, he appears kind of puffy in his face.

My mother's instincts knew something wasn't right with my son and we had repeated visits to our doctor who sent us for all sorts of tests to try to diagnose the problem.  He suspected some type of tumor or even cancer, but nothing showed up on any scans.  This was so frustrating but NOTHING ever showed up.

Wyatt was four and had been potty trained since he was two.  That fall, he started wetting the bed and couldn't hold it when we were out, crying that he had to go to the bathroom, and we'd have to pull over on the side of the road commuting to photo shoots and run into restrooms for him.  It didn't make any sense.  He was drinking constantly so we thought maybe he was just drinking too much. We also kept asking our doctor about bladder infections, but those never showed up either.

I remember noticing sometimes that his urine would be frothy and have bubbles in it and I questioned him about drinking bath soap.  I thought that was odd, but it wasn't consistent.  Our doctor even tested Wyatt's blood sugar levels and nothing appeared out of the ordinary.

The week before Thanksgiving, Wyatt went into ketoacidosis.  He had been attending pre-school and started not feeling well the day before.  My cousin picked him up from pre-school since we were at work, and when I went to get him, he was just resting on the sofa.  He seemed like he might have been coming down with some respiratory illness and didn't seem like himself.  I remember sleeping on the floor in his room that night, so I could listen to him breath, because he was breathing pretty hard but he didn't have a fever.

The next morning, I was doing conference calls for my online class and noticed my son started to slouch over in the chair.  He was watching a show and just didn't seem right.  I called my principal and told her I had to take my son to the doctor because he was sick and we took Wyatt immediately in.  Our doctor was awesome and got our son right in because he had been suspecting something, but nothing had showed up on any test results.  When he saw Wyatt he diagnosed him immediately with diabetic ketoacidosis (DKA) and called the hospital to admit him.  Ketoacidosis Explaination and Signs To Look For

Nobody at the hospital could believe our son had Type 1 Diabetes and they were shocked when his blood test came back over 900.  We were taken by ambulance to a larger hospital that was able to treat him and began the process of slowly having our son come back from a diabetic induced coma. It was the worst 5 days of our lives trying to learn how to take care of him before we were allowed to take him home.  We had to overcome our fear of blood, needles, and learn how to calculate carbs and insulin doses for a child afraid of shots and needles that now had to have them combined with finger pokes and doses, about 12 times per day.  It is now 7 years later and we have come a long way since that day, but we still live with high and low blood sugars that are just a part of this disease until there is a cure.  We do the best we can helping our son and want him to know how much he is loved and supported.

The every day management of Type 1 Diabetes is intense and constant.  People living with it need your support, love, and understanding.  They try not to let it stop them from doing anything, but there is extra care needed, especially for extreme exercise, eating, sleeping, doses, well...pretty much everything.  It is a life changing and life threatening condition that, if not diagnosed and treated properly, is a silent killer.  People can look fine and appear "healthy" while their organs are being damaged on the inside.

My heart and prayers go out to all the families who have lost someone to Type 1 Diabetes.  I hope sharing our story will increase awareness and add to the understanding of this silent autoimmune disease.  To all those who live and love someone with it every day, my prayers are with you for strength and courage, you are not alone.

With love,

Trina Licavoli Gunzel

A Type 1 Story, Resources, and Tips

Hello friends!
We have had a busy summer of traveling and that presents extra blessings and challenges when you are the parent of a Type 1 Diabetic.  It still surprises me how misunderstood this autoimmune disease is, so I want to share some resources and tips to help educate and encourage those living with it or who want to be supportive to loved ones who have it.

Tips:
Get to a Camp!
I know people struggling to get their blood sugar levels under control and especially when someone is first diagnosed, I cannot say enough great things about the Diabetic Youth Foundation in California.  They host many activities, but we attended Camp Bearskin Meadows and it changed our lives  You learn extra tips and strategies for management that you just won't hear anywhere else. Check it out!   Diabetic Youth Foundation

Participate in a Study!
We have and still are in studies for Type 1 Diabetes.  Our son loves to participate because it helps him to feel like he is actively getting to be part of working toward a cure.  He is wearing some of the most advanced technology today that he actually got to be part of advancing through studies that he participated in at Stanford.  When people participate in studies, this helps advance technology and ultimately works toward a cure for Type 1 Diabetes.  That is our ultimate hope and prayer, but using the best technology available and really mastering how to get the best and highest use out of it really makes a difference every day.  Participating in studies helps offset some of the costs and gets you excellent care from the best doctors.

Sharing Technology!
Our son, Wyatt, uses a Medtronic 530G pump and Enlite Sensor.  These devices talk to each other and yes, he still does about 12 finger pokes a day (at $1 a pop that's a lot to just check blood sugar), but this technology allows us to see what his blood sugar is on the pump every minute.  The best feature is that it alarms if he is going "high" or "low" and will shut off giving insulin if he goes too low. These devices have to be monitored and still manually input for blood sugars and carbs, and while it's not a thinking pancreas, it IS an external tool that has two needle sites (that are typically changed out every 4-6 days) and with careful monitoring and management, allow tighter blood sugar control.  There are many different types of pumps and sensors, this is just the one we have chosen to use.  It also works great with the Sentry device which is a screen I have by my bed so I can see and hear any alarms he has overnight.  Technology is not a cure, but it helps until there is one.

What's the Deal with Blood Sugar Anyway?
In the simplest terms, Type 1 Diabetics do not have a pancreas that works to convert food to energy anymore.  Their pancreas stopped producing insulin and they almost died when they were diagnosed. Many, like our son, had a blood sugar of almost 900 and were going into a diabetic coma when they were diagnosed.  Some people have issues with their blood sugar going up or down, but it's not the same as Type 1 Diabetics.  They MUST have insulin given through either shot or pump doses, or their blood sugar will just continue to go higher and higher and destroy their organs, especially when blood sugars remain high over prolonged periods of time.  This is a life threatening condition because they run the risk of death every day, especially at night when they are sleeping, when their blood sugar tends to go very low.  If they are not given sugar to bring them up and some carbohydrates to sustain them, they will pass away.  This is especially tricky overnight, after extreme exercise which continues to lower blood sugar levels.

I want to share this in the simplest terms I can, because many have questions about Type 1 Diabetes and want to be supportive or share their ideas.  I have seen that many of the strongest people I know are Type 1 Diabetics and while some don't want you to recognize their struggle, it is very real and it is an exhausting, constant, autoimmune disease.  There is no cure, no magic drink, no special diet that fixes it.  Type 1 and Type 2 Diabetes are not the same and we will never stop working toward a cure, educating others, or striving to give our son the best life we can, living with this life threatening condition every day.  We have chosen a diet that combines a protein, slow carb, and fast carb to help keep his blood sugars stable, but if we are at a birthday party, yes, we let him have the cake and just give an appropriate insulin dose for it.  He is a kid and wants to be like everyone else!  It's okay!

We don't let Type 1 Diabetes keep us from doing anything, but have made some choices to improve our lives.  We noticed that climate made a difference and we needed to be in studies and have access to better doctors, so we moved. We noticed our son was sick every week at public school, so we decided to home school.  We have wrapped our business and personal lives around being available to help him because, we are his parents and want to give him the best chance at a healthy life.  Our son enjoys scouts, fishing, archery, swimming, farming, running, playing with his friends and family, reading, researching, doing service projects, playing piano, creating art, and more.  We just make sure to have his "go bag" with supplies and extra low blood sugar snacks which might include gummy snacks, juice, candy, or even a pop, with us at all times.  It is an interesting life I never thought I would be a part of, but I feel there is a reason God sent us our son and this challenge and we hope our story will help others.  We have made some wonderful friends through this journey over the past 7 years and have been blessed with awesome friends and family who have been a tremendous help.  Do finger pokes hurt and site changes hurt, yes.  Does he desensitize to the pain after thousands, yes, but it is the way he can live, so we choose to smile through the pain and do our best with this hour by hour, day by day.

Whatever you are going through, you are stronger than you know, you are exactly where you need to be, and there is a purpose for your pain.  When you embrace your life and your new reality, you can help others and I hope sharing our story will do that as well.  I am always up for answering questions and sharing any resources I can.  Type 1 Families, you are not forgotten and you are not alone.

Type 1 Strong!  :)

Hugs,
Trina
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