Tag Archives: parent of a type 1 diabetic child

Children With Diabetes Deserve Insulin Concentration to Meet Their Needs

Young children with type 1 diabetes face a serious conundrum and that is that the available insulin is often too concentrated for their needs.

As a result, endocrinologists wanting to avoid terrible lows (and subsequent lawsuits) in these little ones order parents to feed a certain number of grams of carbohydrate per meal or they convince parents to put their child on an insulin pump, which can dole out smaller increments of insulin to meet their requirements.

However, the high number of carbs many type 1 kids get these days is a dangerous thing for these children because it crowds out essential protein and fat and can lead to weight gain and directly paves the way to roller-coaster style blood glucose management that I promise you, is worse for the child than the parent–no matter how much work and worry is involved on their part.

In the case of an insulin pump, not everyone wants this technology which comes with concerns about tubing issues and scar tissue development and also, not every family can afford one.

Why isn’t insulin made at different concentrations? I mean, it is, but mostly to meet the needs of the type 2 diabetes population which generally has very high insulin requirements. I’ve talked with many type 2s who use in one day, the amount of insulin I use in a week. This isn’t a judgment on them, it’s me pointing out that adults are getting their needs met in this regard and children are being left behind because why? Is it that they can’t advocate for themselves and their parents are being misled by pediatric endocrinologists who don’t know better? Pretty much, I think. One may argue that they grow up quick and then they don’t need such small insulin quantities but childhood health is essential to the rest of one’s life and so optimizing their care while they’re young is morally imperative.

There is a solution for those who want to give their child a smaller amount of carbohydrate and who don’t or can’t use an insulin pump. Diluted insulin. Special diluent fluid is provided free upon request from insulin makers and shipped to your nearby pharmacy. You can do it yourself or have a healthcare provider do it (if you can convince them to). The diluted insulin means you can dose to correct and cover for your child without the elevated risk of sending them low or needing so many extra snacks. This offers the potential to lower their carbohydrate intake, leaving sufficient appetite for what drives growth in a child–protein.

Regarding growth, look up the science, there is nothing indicating your child requires a lot of carbohydrates to grow. I think this is oft repeated mostly due to the above phenomena or lack of time and willingness on the part of physicians to do the proper research as well as their overreliance on what they’re told by other physicians and by governing associations. My daughter, on a very low carb diet, just shot up over 2 inches in 4 months. Before that, she was on a moderately low carb diet for a long time and her height is over the 90th percentile. Her bones and musculature are impressive. Her hair is thick and long, her nails are strong.

Aside from adequate nutrition, kids also need something else to grow to their full potential and that’s normal or near normal blood sugars, which only low carbohydrate diets achieve and which diluted insulin in children enables.

Diluted insulin could be a service pediatric endocrinologists provide to parents of young children with type 1 diabetes if we demanded it. I admit it’s intimidating to do one’s self. First, we have to educate ourselves and then them. Health care professionals feel really bad for us because they know what type 1 diabetes means in the long run for our children and they know the demanding lifestyle we parents lead (because we advocate well for our own suffering–lack of sleep, anyone?) but they’re not being very brave or ethical by ignoring what is going on with kids these days. Too many aren’t thriving!

Not only do most type 1 children have poor blood sugar management, but many are also gaining excess weight. This doesn’t bode well for their future and it’s not fair that adults have appropriate insulin and children don’t. As parents, we have to fight for our kids. Maybe I’m completely wrong. Fine. Maybe you should find out if any of this is true and if so, I implore you to think and discuss the topic with others. I was one of those kids with high blood sugar and weight gain after diagnosis and it made me extremely depressed and unmotivated, totally slowing down the trajectory of my life which has only got back on the rails by a bunch of miracles, sweat, and tears.

I’ve had enough of this poor treatment of children with diabetes and will not stand for it when it comes to my dear daughter. Children deserve medicine that is dosed for their size. They deserve myths to be expelled by our careful investigation and attention to the matter. And they deserve normal blood sugars.

To Share or Not to Share the A1c


This post is largely a reply to an interesting post by Moira McCarthy who has a daughter with type 1 and blogs at Despite Diabetes.  She makes great points about the Diabetes Online Community being more careful with the way they share A1c results.  I agree with that but I feel strongly on the subject of feeling shame.  I used to feel a lot of pain, shame, and jealousy but no longer since changing my way of thinking in the last few years.  It’s a much happier way and this is what I’ve learned:

First of all, I can’t help but ask…

Should we not share news of a pregnancy because it may bring shame to someone who can’t get pregnant?

Should those who get job promotions not share their happy news so as not to shame the unemployed?

Do we not buy a nice car because those unable to afford it might be ashamed?

Should I not mention my weight because someone heavier could be ashamed?

I couldn’t afford a Christmas tree last year, does that mean no one should have put one up so as not to make me feel ashamed?

Should we all take off our jewelry and wear frumpy clothes as we walk past the homeless?

Does it hurt you to know that someone else has “more” than you?  Looks “better” than you?  If so, the problem is not them, it’s deep within you, or us, rather.  If that sounds harsh, don’t worry, this happens to every one of us at some point or other.  We’re all in the same boat, trying to do our best with what we have or don’t have.

I appreciate people sharing their A1c’s because it’s information and some of us really like information.  For those who don’t, don’t pay any mind.  And certainly don’t let that make you feel bad.  I’m sure you have plenty of qualities I wish I had.

When we feel shame, the root issue has less to do with other people and more to do with our self esteem and to think the answer is other people’s actions makes us victims of ourselves.  To feel shame means to lack confidence or to feel guilty or fearful or unsure of one’s actions.  I’ve felt enough shame during my most difficult years with diabetes to know that when I feel it, I feel guilty that I haven’t been doing what I would like to be doing.  This causes me to reflect and know that I have issues to tend to or feelings to release and acknowledge.  Nowadays, instead of feel shame, I try hard to just be open to the truth.  What do I need to change or do differently?  I try to focus on doing my best and when I fail I feel a lot better than I used to because I have an inner confidence that no one can take away from me.  I don’t do this 100% of the time but with practice and mindfulness it does get easier.

One of the best things children can be taught is to be responsible for their own feelings and thoughts and actions.  You allow yourself to feel blame, shame, and guilt.  To point to others for doing this to you is to remove responsibility from yourself and to lose your power and potential.

It’s true that many people and situations out there can illicit painful, shameful feelings in us.  This is because we’re human.  But, we need to spread the message that also, because we’re human, we have this amazing ability to learn how to accept ourselves the way we are, be completely conscious of our own potential, and be aware of how to respect others.

Maybe we shouldn’t share our A1c’s without all the honesty we can attach to it.  I have learned not to just fling out my A1c and say all is well.  I have a non diabetics A1c but I make it a point to tell people that I am aware of how that A1c is still very different from a non diabetics.  A low A1c doesn’t make me feel certain that no harm will come my way.  It’s as important to me as my blood pressure and lipid profile because it’s all valuable information.  When I share my A1c  I try to explain what I sacrifice and what I do in order to get there.  I’ve mentioned that being at home all day makes things easier and others don’t have that advantage.  Recently I mentioned that due to low hematocrit levels my A1c is possibly reflecting a lower number than it really is.  I also explain that years ago when I had low A1c’s they were a mix of many highs and lows and it was not at all ideal or healthy.  And I have talked about my high A1c’s and why I think they happened and how my experience with them has been.  When others do the same I feel like I learn more and gain insight.  I do however, appreciate when others share the broader story to go along with that number and that’s what I try to do, too.

I totally agree that no one should be using an A1c in a bragging manner or as a way to feel more credibility or to try and bully someone else.  But rudeness come in all forms, every day, and we have to be strong and confident in the face of it.  Especially since we’ve all done a rude thing before and can understand how easy it is to make that mistake.  Not to mention, sometimes all it takes to be rude is to be happy for yourself and someone feel unhappy about themselves.

All in all I hope that next time you see an A1c that bothers you, ask yourself why that is.  Then follow your own path to feeling better.  The first step is to take responsibility for your own feelings.  All you need to feel better and do better is within you.  No one deserves to feel badly about themselves when they have diabetes.  This disease works against our self esteem every single day.  I think we can learn to have more days where we are confident and self assured.  I know I have more of those days than I used to and it’s worth it.

There is no room for guilt, or shame, or blame, just respect, love, and understanding.

Thank you, Moira, for gracefully shedding light on this issue.  I write this post because of my own experience with shame and my opinion about how we should strive to completely own our feelings.  However, I do agree that if each person sharing an A1c (or any great info for that matter) thinks of those who aren’t in the same place, a kinder way of sharing will emerge.

In my opinion, if you have a great A1c or blood pressure or toddlers that talk (mine don’t), or a full bank account (mine isn’t) then share away.  I’m happy for you.

Parents of Children with Diabetes, You are My Hero


It’s Diabetes Blog Week!

Today we’re to pick a type of blogger who is different from us and write about how they inspire us.  This is easy for me as I have to say that parents of children with type 1 diabetes inspire me the most. 

I have to start by saying I do not call anyone my “hero” because of how cheesy it sounds.  In this case I make an exception because the truth in this instance outweighs the embarrassment factor.

Maybe it’s because I’m a parent now and understand the amount of heartache involved in parenting- something inconceivable to a non-parent.  I’ve never felt so much joy and anguish in my entire life (and my kids aren’t even two yet)! 

I know all about type 1 by living with it for over 16 years.  Put that knowledge together and what you get is not someone who knows what it’s like to have a child with diabetes, but someone who imagines that being one of the toughest jobs on earth.  I’m seriously amazed at how parents of D kids support each other and share what works and doesn’t work for them.  They share the funny and cute things their kids do and the learning process that they go through.  They share the scary moments and the sadness and worry.  I wish my parents had had the DOC when my sister and I were young and seemingly alone with type 1 diabetes.  My parents did well by taking all the diabetes related challenges in stride but emotional support would have been nice as well as the knowledge that they were not the only ones raising more than one child with type 1 diabetes.  I lived in an interesting household, I think.  I am the oldest and type 1.  Then I have a brother just a year and a half younger.  Then follows a sister, then another sister-who also has type 1 and was diagnosed at age 3.  Then I have another brother, 15 years younger than me.  Not only was there crowd control involved but two really different ages of children with type 1 to deal with.  At the same time my parents were dealing with a teenager with diabetes, they were dealing with a young child with it.  Man, the DOC would have been nice through all that (I imagine). 

Anyway, to you parents of children with diabetes, thank you for showing your amazing strength and unwavering support.  You do something most of the world doesn’t think is too hard and doesn’t understand.  You have to work when other parents get to rest.  You have to worry 24/7.  You have to celebrate tiny victories because you know how relentless tiny bits of bad news comes by way of a glucose meter.  It must be so exhausting. 

When you feel overwhelmed as a parent of a child with diabetes, remember that chances are totally in your favor that they will grow up to be happy and healthy adults.  I didn’t think I would ok at 27 (28 in a few days) and not only am I doing ok,  I’m doing awesome.  So you do what YOU have to do for YOUR kid and I promise there will be easier days ahead when your kid is an adult taking the reigns of management from you and thanking you for your hard work and dedication in getting them there.

To MY mom and dad:  I didn’t know how hard you had it and now only have an idea.  Thank you for raising two young children with type 1 diabetes all while raising three others, working full-time, giving back to the community, and setting an example to us of strength, commitment, love, and faith.  The main message I take away is that life is not meant to be easy but that doesn’t mean it can’t be full of purpose or meaning, and down right great!

Diabetes and Parenting, Anxiety in the Making


We know what can make a person anxious.  An unfamiliar social setting, an upcoming doctor visit, a college graduation resulting in a fear of the unknown, being the first to say the words, “I love you”.  Anxiety is a normal thing in life.  What’s not normal is feeling too much anxiety.

Having diabetes may mean fighting a constant thread of anxiety 100% of the time.  Having children, I’ve learned, produces more anxiety than I could have ever imagined.  Many of us find it can be worrisome to spend all day alone as a diabetic.  Never mind spending all day alone with diabetes and two little ones to look after. 

My mother stopped by the other day around lunchtime and worried when I didn’t answer the incessant door knocking and phone rings.  She finally got management to open up my apartment door.  Turns out the kids and I were sound asleep at nap time (I don’t normally nap).  It made me realize however, the anxiety for her as a parent, doesn’t go away just because I’m 27.

When you combine diabetes and children, such as in the case of my parents, who raised two kids with type 1 diabetes (plus three others), or in my case, a type 1 diabetic raising two children, you get…ANXIETY!  Before my day has hardly begun, I’m already feeling a little wigged out.

For example, when I wake up in the morning there is this feeling of urgency to get out the meter and (fingers crossed!) hope for a good number.  If I’m low, I “run, run, run” to the kitchen for some juice because “I’m alone with the kids and they depend on me”.  If I’m high, “oh no, how am I gonna deal with this and the kids this morning?” is what goes through my head.  Let’s say my blood sugar is good and I know that in 10 minutes I’m going to make breakfast for everyone.  I give insulin and wash up.  Next, I change the kid’s diapers (a major challenge nowadays), their clothes (yet, another struggle), give them a bottle, clean up the couch (they like to pour milk on it), and make their breakfast.  I think, “When did I give insulin? Ah yes, 10 minutes ago.  Ok, so in about 5 minutes I have to be eating something”.  I put the kids in their high chairs and give them their meal.  I’m about to take a bite when, “No! Please don’t take your brother’s food!  And please sit down! Thank you!”  I’m about to try that bite again but, “No throwing food on the floor guys!  Eat your food, please.”  I walk over to pick up the food on the floor and get the kids to sit properly.  Then, “Uh oh, I think I’m getting low”.  I guzzle some juice, forgetting about breakfast, entirely.  My heart races.  Back to the kids, “No no, don’t run your dirty fingers through your hair, please!”  I pick up the kids, take them to the sink to get their hands and faces washed up.  Man they’re heavy when I’m a little low.  I struggle to get them out of the bathroom because they love to flush the toilet and always try to lean into the tub.  I stumble back to the kitchen and finish my juice only to see the kids jumping on the couch.  I run over to prevent the little monkeys from falling.  They don’t want down.  I say, “Ok, let’s read some books!”  We read “Goodnight Moon” 20 times.  “Uh oh, I feel low again.  Run back to the kitchen and grab some juice.  Mental note: “Sysy, just don’t give insulin tomorrow morning, just don’t eat, it’s easier”.  <SIGHHH>  (Now you all see why I’m better off eating lower carbs= less insulin!)

This is just my first hour of the day.  The 10 hours that follow are very similar.  If the mix of parenting and diabetes doesn’t cause a person anxiety, I don’t know what does. 

God Bless you if you live with some combination of diabetes and parenting. :)