Month: March 2014

Organisation, organisation, organisation……….

So in the beginning I was totally overwhelmed with everything you need to learn. For me, I realized very early on that I needed to get ‘diabetes organized’. I’ve changed a few things along the way, but some of the things I learned to do early on have been invaluable to me and keeping my mind focused.

This first thing I did was make up a file with all the paperwork that I was given from the hospital. There was so much stuff handed to us to read up on, it was crazy. Soon as I got home, I put all of this into a file so if I needed to refer to anything, I knew where it all was. To be honest, I rarely look at this now as we’ve come along way, but we still have the file.

The next thing were the supplies and the snacks. You need space in your house for this stuff and this is the most important thing for me to be organized. My son now has an insulin pump & a CGM so our supplies now have taken over a whole cupboard ! To make my life easier I went to Target and bought several storage containers. I bought a smallish one for the ‘hypoglycemia supplies’ only.  That box stays in one place always and contains emergency glucose gel, juice boxes, skittles, Glucagon pen and instructions on how to use Glucagon pen in case of an emergency.

Hypo box

Then I had a box with snacks that contained 15g of carbs. In the early days of management, Matthew was told to eat a 15g snack whilst at school. He usually had that after PE. Then a 15g snack at bedtime. We’ve kind of done away with that box now as we manage his diabetes on a much tighter scale and with the help of the cgm discovered he did not need a 15g snack. I’ll go more into that later, but if you need those snacks, have a place to keep them organised.

Then I had another big box with a small amount of the supplies he needed on a daily basis. The rest was put in a cupboard (we get 3 months worth of supplies so it’s too much to store in my handy box). In the beginning it contained:

Syringes

Alcohol wipes

Insulin

Lancets

Ketostix

Now it contains

Syringes

Alcohol wipes

Lancets

Ketostix

All pump supplies

Hypafix tape

SkinTac

Uni-Solve

Lithium AA & AAA batteries

Frio pack

Lidocaine

Tagaderm

Easy access supplies box

I think I need a bigger box now ! Having a small quantity of the supplies we need to hand frequently, just makes it a little easier for me to grab what we need quickly. I’ve lost count how many times as Matthew needs to leave to get the school bus, and he announces he needs tape around cgm as it’s coming loose…arghhh. At least I know where it is, and I can deal with issue on hand right away without having to search for whatever is needed at that moment.

FOOD & KITCHEN ORGANISATION

Ok so this is a biggie. You need good kitchen scales. Measuring cups. Jug for measuring fluids.  Accurate carbohydrate counting at home means that I can see trends forming where I might need to change carb to insulin ratios. So whilst at home, I really am careful about how many carbs are eaten.

scales

A simple note book. To write down what is going to be eaten and how many carbs. This helps me so much every single day. I’m lucky that Matthew is older, so we have a chat before he eats to establish how hungry he is to work out portion sizes. That is probably more difficult with a toddler, so I’m sure others can offer better advice on that. Thankfully I have a non fussy eater child, so we can accurately work on carbs in advance and bolus before he eats.

Image

This was my calculation for mini sausage rolls I made for his birthday party ! Type 1 Diabetes is good for mathematical brain exercises !!

The other thing I did was in my pantry cupboard, things like flour, rice, sugar which I tend to store in Tupperware containers, I cut out the nutrition info from packaging and tape that to Tupperware containers. Saves me looking up carb amounts every time I bake.

Then we have the very important ’emergency kit’ that goes with us everywhere (not school as he has separate school supplies). This has a bit of everything needed to cover for emergency lows (Glucagon), candy, glucose tabs, juice for lows. Spare pump supplies for any issues that may occur (this has happened to us before, be prepared !).

Emergency kit

Finally we have the supplies cupboard which is gradually taking over all my storage space ! Helps to keep organized as I can see when supplies running low and gives me time to make sure new supplies are on their way.

Supplies cupboard

A quick view of all the ‘stuff’ ! (actually this is old pic and doesn’t include the CGM stuff !)

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One whole decade……

This fantastic Mum has been a great help to me. In different time zones, she’s been there helping me when struggling with a stubborn high blood sugar in the middle of the night. This is her sweet girl

theunderstudypancreas

http://www.kizoa.com/slideshow/d8127213kP176628012o2/one-whole-decade

This illustrates how from the very beginning, and our fear and trepidation of the new world we were moved to, we managed, with the excellent example set by our daughters, to overcome those darker days and flood them with sunshine and fun!

The past decade has flown past, with advances in treatment that we couldn’t even begin to imagine as we stood absorbing information in intensive care all those years ago. Words are fairly inadequate to describe how proud we are of our daughters.

Pumplette continues to thrive and embrace all that life has to offer and her sisters both take the same stance.  I can think of no better motivation for them all to become smart, sassy young ladies than the fortitude and resilience they all have to draw upon each and every day.

Although I would love nothing more than to liberate my second child from the…

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So what did we have to learn in the beginning?

Image Early day supplies !

So whilst we were in the hospital we were taught the basics of caring for a child with type 1 diabetes. This post is going to focus on the early days. Before Matthew went onto an insulin pump, and before we started more intensive monitoring.

I started typing out in way too much detail and then realized that, no one was going to read all that ! So here is the simplified version of our hospital training.

1 How to give insulin to our child

2 How much insulin to give to our child

3 How to use a blood glucose meter & lancing device (believe me I struggled to do this initially and that’s probably one of the easiest things to do !)

4 How to count carbohydrates  (I’ll talk about carbs in a separate post later)

5 How often we needed to check his blood glucose levels

6 What hypoglycemia and hyperglycemia is (well talk about that in another post too)

7 What to do in an emergency situation

8 How to use a Glucagon emergency pen (for severe low blood glucose level)

9 General information on what T1D is.

We were given a lesson with a nutritionist who recommended how many carbs for Matthew to eat with his meals, when he should eat extra snacks through the day and before bedtime. Matthew was also very happy to hear that a small tub of Blue Bell vanilla ice cream was only 18g of carbs ! We have a basic course of caring for a child with T1D. Plus we were shown how to draw up the insulin, mix the two types of insulin, and actually inject the insulin (that was so scary to do the first time)

Test paper and before Matthew could be discharged from hospital, we had to take a test ! As well as demonstrate that we could draw up the insulin and inject the insulin.

To be honest, Matthew could not wait to go home. I was actually terrified of him coming home. Suddenly you find yourself responsible for taking your child home from hospital and dealing with a chronic life threatening disease for which you are only just starting to get your head around. Remember how you felt taking a newborn baby home from hospital? Well multiply that by 1000 in terms of knowing nothing and that everything you do now, means your child’s life is in your hands. Scary !

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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

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