What It’s Really Like to Have a Child With Type 1 Diabetes

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Child with Diabetes

I have two daughters with Type 1 diabetes, and in my experience there’s a disconnect between what people think it’s like to have Type 1 diabetes and what it actually is like.

Many people are not aware of all the variables that come into play to control blood sugars. Some people think you take your medicine and you get a steady blood glucose of 120. In reality, you have to guess what the dose of your insulin is based on your guess of what the carbs in the food are based on what your guess is of the portion of food that will be eaten. Plus, you must take into account your guess of the amount of fat and protein in the food, and whether one has just exercised or is about to exercise (and how much exertion that exercise will involve). If you are about to go to sleep that must be taken into account, or if you’re going to be somewhere difficult to treat a low (such as a child on a school bus) keep that in mind as well.  And don’t forget to pray that your pump infusion set is working and that your insulin didn’t fry in the heat. Now push go on your pump, or poke your arm with a needle and, voilà, you’re done!

A diabetes disconnect also results from confusing headlines, such as Cure for Type 1 Discovered (it’s in mice) or New Drug for Diabetes (it’s for Type 2). Many book titles are misleading as well, often using language like ‘Reversing Diabetes’ or ‘Preventing Diabetes’ while meaning Type 2 diabetes and not Type 1. Even medical journals often don’t distinguish between Type 1 and Type 2 diabetes in their titles.

Recently, I saw a friend whom I hadn’t seen for a long time. When I pulled out my daughters’ meters and lancets to check blood sugars, she said “I didn’t think you still had to do that.”

This is not the first time I’ve heard someone say this. People seem to interpret the advent of continuous glucose monitoring systems (CGMS) as the end of fingersticks. Not only were we on a break from the CGMS, but the CGMSs can lead to more fingersticks due to the alarms for low or high numbers and the need to confirm them, as well as the need for calibration with fingersticks. 

Another time an acquaintance told me that when she grew up her relative had to check his blood sugar with fingersticks. She sincerely thought that blood sugar testing no longer required finger pricks. Perhaps advertising had confused her, as some ads seem to gloss over that fact that you still need to prick your finger, and some emphasize ‘soft’ needles. Also the talk of pumps “instead of shots” perhaps has misled those who don’t know that the pump still requires needle insertions and that shots are still necessary when high blood sugars develop from pump sites malfunctions or other problems.

A pediatrician with a child with diabetes told me her colleagues have no idea what it’s really like to have a child with Type 1 diabetes. There is a lot of talk about blood sugar levels and the threat of complications, but I hear less on the day to day side effects of high and low blood sugars, such as headaches, stomachaches or feeling shaky, that children often cannot put into words, but suffer from nonetheless. This is apart from the amount of work that diabetes care involves, such as testing blood sugar levels throughout the day and night, giving insulin for meals, snacks and bites, always counting (or guessing) carbs, checking on daily supplies, carrying diabetes bags, filling prescriptions, downloading pumps, visiting the doctor, and the list goes on and on, encompassing every single day and night. In addition, I don’t think people are typically aware of the need for the continuous infusion of basal insulin, and that this rate of delivery needs to be adjusted regularly due to physical growth or changes in routine.

To make up for the diabetes disconnect in the world, I actively seek environments that focus on connection for people with diabetes. Educational diabetes conferences like the Children With Diabetes Friends For Life conference are places where everyone understands the look on your face when you are performing the complex analysis of variables listed above followed by the necessary math.

Diabetes camp is another place that can make up for some of the inequities of diabetes. My daughters may not be included in some playdates and sleepovers, but the camp camaraderie and happy charades of diabetes camp can make up for it.

And of course there is support online. Numerous blogs and cyber cartoons bring smiles and understanding to those in need. Nevertheless, a more widespread awareness of the challenges of Type 1 diabetes is still needed in my juicy opinion. 

As a mother with two children with Type I diabetes, JuicyMama always has juice with her. That’s why she is one JuicyMama!  You can read her juicy blog at http://www.deletediabetes.com/or email her at juicymama2go@gmail.com.

 

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Comments (10)

  1. Sheri Zimmerman at

    Great read!  As a “non-mother”, but a T1 for 33 years… I suffer the same issues!  And get so irritated by those “Diabetes cures” and “reversing” ads.  I had a relative tell me there is a cure.  And I said, oh yah!   I just do all this for the fun of it!  

  2. Not to mention worrying every single night if your child will still be alive in the morning. No-one EVER talks about that.

  3. kate higgins at

    This is all so true and Simon’s comment brought tears to my eyes, it is always my last thought at night and my first in the morning.   

  4. Karen at

    The sleep deprivation from Routine 3 am blood checks, the worrying when you send them to school if they’ll be dosed wrong, the inconvenience of forgetting the diabetes kit if you’re out somewhere,  and having to keep up with the bag at all times.   And then the stress the kids go through having to be different,  get poked like a pincushion,  and the physical symptoms of highs and lows, which I can’t even comprehend.   And the emotional stress of trying to keep blood sugers in a “normal” range, which is so difficult given the many factors you listed in your post.  

  5. DD at

    I have 2 daughters with T1D as well.  I love this post describing the things that we go through.  One thing that makes matters worse is that my youngest is too young to tell me when she is feeling any low symptoms.  It’s the worst having very small children with this disease! They can’t help you out at all.  It’s just so scary all the time.  It causes anxiety, stress, depression.

  6. DD at

    I have 2 daughters with T1D.  One is too young to tell me when she has any low symptoms.  It’s the worst having a very small child with T1D.  They can’t help at all.  The stress, anxiety, depression from managing this disease can be difficult to cope with. I always worry about them dying.

  7. Catherine at

    Having been diagnosed at 22, I am so grateful that my own parents did not have to go through what you describe. I think that the parents of kids with T1D are unsung heroes. Even though I have type 1 myself, I honestly cannot imagine the fear and anxiety you must experience each day (and night). Thank you for all that you do — and I hope there is someone in your life who can give YOU a hug. 

  8. Thank you so much from a mom of a Type 1 pre-teen son!! He also has thyroid problems related to his diabetes and when his doctor said he was going to hit puberty early and I was going to have a hormonal boy on my hands before I was ready, Boy was she right!! 

  9. Gunhild at

    Thank you for writing this. I am a mother of a 4 yo son, who has had T1D for just over 1 1/2 years. It is so comforting to know about other people who deal with the same hardships. 

  10. Alysha Heise at

    Yep, it’s the variables that only other parents of Type 1’s (or their close caregivers) understand.

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