JDRF Walk to Cure Diabetes – Houston Gulf Coast 2013 Walk

Our 1st JDRF fundraising walk

Our 1st JDRF fundraising walk

 

On Saturday, October 26th 2013 we along with many of our wonderful friends, took part in our first JDRF Walk to Cure diabetes fundraising event. It was a beautiful day to walk. Our team raised just under $10,000 which was amazing for us as first time walkers.  The Houston walk raising almost $1.2 million dollars in total !

This is a link to last years fundraising page. http://www2.jdrf.org/site/TR?pg=team&fr_id=2411&team_id=80665 We’ll be doing a new page later this year, for our 2nd walk.

It was also the first time that I got to make a video for the walk. If you’re interested in watching, it highlights the first 4 months of Matthew’s life with T1D. Still breaks my heart to watch 😦

http://www.youtube.com/watch?v=k3PbD-gNmEE

Our team as we set off

 

Matthew's sign board

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What is Type 1 Diabetes?

So what is Type 1 Diabetes? You’ve heard about Type 2, so what is the difference?  I have copied some information from JDRF’s website. This link can be found below. Probably the most important information you can have, is knowing the warning signs of Type 1 Diabetes. I would urge everyone to familiarize themselves with the symptoms. T1D can become  life threatening in a very short space of time in an undiagnosed person. Here is some information:

Very important to familiarize yourself with the symptoms

Very important to familiarize yourself with the symptoms

Type 1 diabetes (T1D) is an autoimmune disease in which a person’s pancreas stops producing insulin, a hormone that enables people to get energy from food. It occurs when the body’s immune system attacks and destroys the insulin-producing cells in the pancreas, called beta cells. While its causes are not yet entirely understood, scientists believe that both genetic factors and environmental triggers are involved. Its onset has nothing to do with diet or lifestyle. There is nothing you can do to prevent T1D, and—at present—nothing you can do to get rid of it.

Whom T1D Affects

Type 1 diabetes strikes both children and adults at any age. It comes on suddenly, causes dependence on injected or pumped insulin for life, and carries the constant threat of devastating complications.

How T1D Is Managed

Living with T1D is a constant challenge. People with the disease must carefully balance insulin doses (either by injections multiple times a day or continuous infusion through a pump) with eating and other activities throughout the day and night. They must also measure their blood-glucose level by pricking their fingers for blood six or more times a day. Despite this constant attention, people with T1D still run the risk of dangerous high or low blood-glucose levels, both of which can be life threatening. People with T1D overcome these challenges on a daily basis.

Insulin Is Not a Cure

While insulin injections or infusion allow a person with T1D to stay alive, they do not cure the disease, nor do they necessarily prevent the possibility of the disease’s serious effects, which may include: kidney failure, blindness, nerve damage, heart attack, stroke, and pregnancy complications.

The Outlook for Treatments and a Cure

Although T1D is a serious and difficult disease, treatment options are improving all the time, and people with T1D can lead full and active lives. JDRF is driving research to progressively remove the impact of the disease from people’s lives until we ultimately achieve a world without T1D.

Statistics

• As many as three million Americans may have T1D.1

• Each year, more than 15,000 children and 15,000 adults—approximately 80 people per day—are diagnosed with T1D in the U.S.2

• Approximately 85 percent of people living with T1D are adults, and 15 percent of people living with T1D are children.1

• The prevalence of T1D in Americans under age 20 rose by 23 percent between 2001 and 2009.3

• The rate of T1D incidence among children under age 14 is estimated to increase by three percent annually worldwide.4

• T1D accounts for $14.9 billion in healthcare costs in the U.S. each year.5

Warning Signs

Warning signs of T1D may occur suddenly and can include:

• Extreme thirst

• Frequent urination

• Drowsiness or lethargy

• Increased appetite

• Sudden weight loss

• Sudden vision changes

• Sugar in the urine

• Fruity odor on the breath

• Heavy or labored breathing

• Stupor or unconsciousness

 

https://jdrf.org/about-jdrf/fact-sheets/type-1-diabetes-facts/

Diagnosis Day

Very ill with DKA
Very ill with DKA

Tuesday November 13th, 2012 will be a day I never forget. It was the day our son, Matthew, was diagnosed with Type 1 diabetes (T1D).

I’ll tell you a little about Matthew, he’s always been a very slim boy. Average height, but always on the low side for weight. In August, just before he was due to go to summer camp, he got strep throat. He also had a horrible mouth ulcer from his braces rubbing the inside of his mouth. He didn’t want to eat, and in just a few days he had lost 3 lbs in weight. He struggled to get well and missed 2 days of camp as a result.

Fast forward to November 2nd, another visit to the pediatrician as I thought he might have strep again. This time it was negative. However, he was weighed as routine and noted that he hadn’t gained any weight back since he lost those 3 lbs back in August. Over the next week or so, he seemed to be really tired at bedtime. No issues getting to sleep.

Then the weekend before diagnosis, we noticed he was drinking a lot of water. Like constantly at the drinks dispenser filling up a glass. He was eating non stop. But shockingly he looked really thin. On Monday he got up happy and ready for school. I wanted to take him to the pediatrician but he didn’t want to miss school. He came home from school in the afternoon, quite happy. Starving hungry, ate a ton of food, drank lots more water. A few hours later, we sat down for dinner. He didn’t want to eat. He felt ‘funny’ He wasn’t really making any sense what he was saying. We let him leave dinner and go for a lie down. We knew something had to be wrong. I spent some time on google trying to work out what his symptoms could mean. Type 1 Diabetes seemed to make sense, but reading about it, I prayed that it was not that. At bedtime he filled his water bottle. He never took a bottle of water to bed ever. At 1am in the morning, he woke us up by switching all the lights on downstairs so he could fill his water bottle again. My mind was made up at that point. He was going to the pediatricians first thing in the morning. No more excuses.

I asked my wonderful mother-in-law (who thankfully was staying with us at the time) to come with us to the pediatricians as I had a feeling we’d have to go straight to the hospital if my fears were confirmed. She sat in the waiting area whilst I went back with Matthew. Firstly they weighed him. He’s lost another 3 lbs in weight. As soon as I heard his new weight, I just knew life was about to change.

The nurse gave Matthew a bottle to do a urine sample. She wanted to check for ketones in his urine. The pediatrician came in, he arranged for the nurse to also check his blood glucose level. This was the first of the finger prick tests that would become an every day normal. His blood sugar level was 532. I asked what was the normal level. She told me between 80 to 150. She then said he had ketones in his urine. My world world fell apart at that point. I was totally devastated. I was not a tower of strength but a sobbing mother knowing my child’s carefree life had just changed forever.

Our wonderful pediatrician confirmed that based on those two tests Matthew did indeed have T1D and that Matthew had DKA (Diabetic Ketoacidosis). We needed to go immediately to Texas Children’s Hospital ER department where they were awaiting our arrival.

That was the start of 3 days in hospital.

On arrival, Matthew was admitted to ICU and needed to have to two IVs put in. He had a bad experience when he was 3 1/2 years old having an IV put in and it had made him terrified of needles ever since. Again, the 1st IV to go in was just horrible. They struggled to get it to work. After many tears they had to do a 2nd one. I promised Matthew whatever toy/game he wanted to let them put the 2nd one in. Thank God the 2nd went in first time with no issues.

The rest of the day was a whirlwind of doctors coming in and out of the room. First a group of endocrinologists ordered more tests to confirm the T1D diagnosis. They explained that one of the IVs was to bring Matthew’s blood glucose level down very slowly to a normal level. They also told me that there was nothing that I could have done to have prevented Matthew from getting T1D. It was an autoimmune disease whereby your immune system attacks the beta cells in the pancreas that produce insulin. They could not tell me why that happens, but one theory is that viruses are a trigger.

Another endocrinologist asked us if we would be prepared to help with a research study that was being conducted. I’ll talk about that later in a separate post.

It was also a sobering moment to realize that DKA was a very serious condition and that if we had delayed going to the doctors by another day or so, we may have had a tragic outcome. Delayed diagnosis can lead to brain damage and tragically death.

I lost count how many visitors we had to his room. The amount of information sheets and booklets that was left with us to study overnight, was quite overwhelming.

That night I stayed on the sofa bed in the room with Matthew, and observed the nurse check Matthew’s blood glucose level every hour. In the morning she told me that at 3.30am his blood glucose level had finally come down to a safe level.

Later that morning, Matthew was able to eat breakfast for the first time along with a shot of insulin for the food he was eating. By that point in time, he had not eaten anything in 38 hours.

First meal

A bit about my blog…

Hi, my name is Carolyn and my son, Matthew was diagnosed with Type 1 Diabetes in November 2012, at the age of 11. When your child is diagnosed with a chronic, life threatening, non curable disease, you as a parent research and learn as much as you can about it.

We as a family knew nothing about Type 1 Diabetes at all before our son’s diagnosis. We pretty much only knew ‘diabetes’ as the stereotypical Type 2 Diabetes which dominates in the media. Mainly because approx 95% of the population with diabetes have Type 2, and approx only 5% Type 1.

There is so much you have to learn before you leave the hospital with your child. But the learning does not stop there. As time goes on, you learn new tricks, how different types of food affect your blood glucose levels, the technology that is out there, the list is endless.

I had intended to start this blog a few weeks after he was diagnosed, mainly as a type of therapy for me. I had so much I wanted to say and felt totally overwhelmed by the huge change to our family life. Then the tragedy at Sandy Hook occurred a few weeks later and my enthusiasm just evaporated. But 16 months on, I feel I’m ready to talk. I have a lot of catching up to do now !

I am hoping that by sharing some of our experiences, you can learn to understand what Type 1 Diabetes is all about and if you yourself or your child is newly diagnosed, you may find some information helpful.

Please note, that I cannot offer medical advice. I will share what we do to manage Type 1 Diabetes to the best of our ability, but you should always refer to your Endocrinologist or CDE if you want to make any changes or look into the technology I mention.