Looking After A Child With Type 1 Diabetes

My beautiful niece, MacKenzie

Today I wanted to raise awareness of type 1 diabetes, another terrible autoimmune disorder which will hopefully one day have a cure. There is a clear genetic link between celiac disease and type 1 diabetes and around 10% of people with type 1 will go on to develop celiac disease.

World Diabetes Day is November 14th. To raise awareness my sister-in-law recorded her daily routine of looking after her baby girl, MacKenzie, who was diagnosed with type 1 diabetes at just 15 months old. This isn’t an annual, monthly or even weekly routine; this is the every day reality of looking after a diabetic child. MacKenzie is two years old.

MacKenzie receives insulin through her insulin pump, which is connected to her 24/7. It gives her small amounts of insulin to keep her levels steady but you can adjust this at any time of the day if she suffers a natural rise or drop.

Her healthy blood glucose range is 4.8 – 7.0. If she is higher than this for long periods of time it could result in health problems later in life, if her levels are extremely high or low she could fall into a coma.

  • The normal blood glucose level in non diabetes is about  4 mmol/L or 72 mg/dL
  • The body, when operating normally, restores the blood sugar level to a range of about 4.4 to 6.1 mmol/L (82 to 110 mg/dL)
  • Shortly after eating the blood glucose level may rise temporarily up to 7.8 mmol/L (140 mg/dL)

2.23am

I missed my alarm. I don’t know how many times I’ve hit that snooze button, jumping out of bed with a skip of my beating heart as I reach for the blood glucose monitor and open the door for some light so I can see her little fingers. She is sleeping so peacefully. Blood glucose 6.3, good number.

 4.44am

Yet again I slept through my alarm. I am so tired that my eyes are burning. Her blood glucose is 4.6, a little low for my liking so I try to get her to drink some juice through a straw without waking too much. This time she doesn’t fight me and has her juice before going back to sleep. I hope her levels don’t go sky high.

7.00am

I wake to MacKenzie bouncing on me and again she needs another finger prick, she is very brave. Her blood glucose levels are 6.2, a great number to start the day. Her fingers are looking sore, those little fingers are pricked so often. I put on some tea tree cream to soothe them.

Food is the hardest part of my day as little miss doesn’t always want to eat. The challenge is trying to distract her so that I can get carbs into her.

12g special K = 9.24 carbs
9g belvita biscuit = 6.12 carbs
10g toast = 3.35 carbs

18.71g of carbs in total so I will give her 19 carbs. I input the information into her insulin pump so that the pump will deliver the right amount of insulin to cover the food. If insulin ratios are wrong her blood sugar levels will either go high or low. 0.600 of insulin delivered

Heading to soft play with MacKenzie. Her lunch has been weighed and packed, 37g carbs if she eats it all. I have a bottle of OJ and glucotabs in case her levels drop and she is hypo. Exercise and running around can drop her levels so quickly.

I carry a spare infusion set in case her cannula faults or comes out whilst we are out. If this happens it prevents the insulin being delivered into her body that she receives 24 hours a day. If she doesn’t receive insulin it can cause very high blood sugar (hyperglycaemia) levels, which is extremely dangerous and will also cause her to get ketones.

Ketones are an acid remaining when the body burns it’s own fat. When the body has insufficient insulin it cannot get glucose from the blood into the body’s cells to use as energy and will instead begin to burn fat. When the body burns too much fat it may result in ketones in the bloodstream. Untreated ketones can lead to ketoacidosis.

Happy family 🙂

10.40am

We arrived at soft play at 10.35am, time for another finger prick. This time she is low (hypoglycaemia), 2.8 when she should be above 4.1. All she wants to do is play but I need to treat her hypo. She has 1 glucotab and 120 mil of juice. Now we have to wait 15 minutes to retest and ensure her levels have risen. Her levels are back up to 5.9.I have disconnected the pump. I don’t want her getting any background insulin as she will be running around like mad. A diabetics sugar levels can drop or rise due to things like exercise, temperature or illness.

11.56am

Another finger prick, 6.8. This is good her levels could still drop due to all her running around.

Lunch time:
20 carbs for the sandwich = insulin 0.600
8g wotsits = 5carbs = insulin 0.125

She is finally in bed having a nap and I will check her bloods again in 5 minutes. She had already had too many finger pricks today but I need to ensure she is safe.

15.15pm

MacKenzie has been napping for 2 hours. I didn’t mean to wake her but needed to check her bloods. She is higher then she should be, 12.1. I have given her a correction of insulin through the pump.

16.48pm

Dinner time means changing the needle in the finger pricker so she isn’t getting stabbed with a blunt needle. Her sugar levels are just in range, 7.0.

Tonight she is having pasta, one of the hardest foods to control with her blood levels as its slow releasing and seems to spike 3 hours or so after eating it. Timing insulin delivery is crucial and I don’t always get it right.

99 grams of cooked pasta = 33 carbs

17.39pm

MacKenzie is sitting on the lounge in a pile of sweat, pale and cranky and getting very emotional. I fear a hypo as I grab the blood sugar monitor, getting a tissue to wipe her fingers and one to dry so I don’t get a faulty reading.

She is now curled up into me while testing. Phew, 5.3

19.18pm

I’m putting my baby to bed after another finger prick to ensure she is safe. She is 4.8, a little low for me. I need to give a little nudge with a glucotab otherwise I will be waking her up to treat a hypo.

21.12pm

I creep into the dark bedroom hoping I don’t wake my little Angel sleeping and praying that her levels are safe. It’s hard to see blood in the dark with the light from the door only peeping through. She is 5.2 and I’m now just waiting for the pasta to kick in and lift her slightly. I will check again in 2 hours…..

Today I didn’t have to hold my baby down whilst inserting a fresh tube into her tiny body. Today I didn’t have to cradle her in my arms whilst she sobs and tells me it hurts. Today she didn’t refuse her hypo treatment. Today was an easy day compare to some.

We are now doing our last test for the night. If her levels are stable I will not need to check again until 1am, then again at 3am, or 4 depending on her levels. I will lay awake with worry for most of the night rather then sleeping.

My brother Mark and his gorgeous daughter

22.43pm

6.0. This was the 13th test for her little fingers today. Some days she has 20 tests.

23.59pm

6.4

2.54am

2.8, hypoglycaemia. It’s scary when her numbers are below 3. Hopefully she will take her treatment without waking too much.

3.16am

4.1, I give her more juice.

6.00am

 6.9

This is everyday, some days are better then others but she will never grow out of this disease. If her levels aren’t managed and controlled she could have many complications in life. If she is not stable during the night and not being checked and has a hypo she could drop into a diabetic coma and may not be able to be woken.

As the world sleeps the beast of diabetes tries to control our lives and we have to be on our toes to make sure our children are safe.

 

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Comments

  • Oh help.
    First night back from hospital. She went to bed too soon after last meal. She said she wanted me to wake her up for testing, not do it in her sleep. I woke her up, she threw a wobbly, cried, shouted, screamed, kicked. I hate this illness, hate it, hate it. I told her that if she went back to sleep I’d have to do it in her sleep. Hate it. So I came looking for some idea about how not to wake her up (it didn’t work last night). Hate it.
    I can’t understand why those medical companies don’t get their act together on this?

  • Sorry to hear your daughter has been diagnosed. With not waking them in their sleep its something they will get use to, my daughter 14 months old when diagnosed and now 2 1/2 would always hide her hands under her body and clench her fists. She now puts her hands out and let’s me do it. It took a few months (for us) that she stopped waking when testing at night.
    Do you have any support?

  • There are many emotions that you will experience after your child has been diagnosed. I felt a lot of anger, blame, hate, hurt, sad, grief, loss and I felt so alone. The roller coaster you will experience is normal, I never thought I would smile or laugh again as that deep dark hole that I was sinking in felt like it was going to swallow me up, but there is a light at the end of this grieving, we have been diagnosed a year and a half now, MacKenzie will be 3 in October and we don’t let anything stop us, we travel to other countries, try new foods, run around like any other toddler, she just has to be checked more often to ensure she is safe, but she will achieve and have dreams and will hold her head high.
    Yes, we still have very tough days but we also have very good days, and her bravery just goes to show how amazing and special she is.
    I hope you have some great support and you are all coping as well as you can be at this unfortunate time.
    If you need anything please ask.

  • It is hard dealing with a diabetic child and coping with your feelings at the same time. I thought my world had ended when my. Son was diagnosed at 9.annd that we would never be a normal family. How wrong I was. 20 yeas on my son plays squash, attends circuit traing, holds a good job, lives by himself and has a good social life. Admittedly he had to grow up very quickly when he was diAgnosed buut that made him very independent, and aware of his body.
    The big problem was coping with my diet when I was diagnosed with DH six months later. Even that has improved with most supermarkets seling free from and our local chippy sellinf gluten free battered fish.

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