Tag Archives: children with diabetes

Parents Suffer But Children With Diabetes Suffer More

I’ve been active in the Diabetes Online Community for an entire decade, literally since my twins were born. I’ve noticed that parents suffer a lot due to having children with diabetes. I’ve always had compassion for this because I could empathize and did empathize with my own parents growing up–it is gut-wrenching to see your child develop and live with an incurable, life-threatening illness. I know what it feels like to grow up with diabetes as a little girl so when my little girl was diagnosed, I felt strong emotional and physical pain. Type 1 diabetes in a child IS hard on parents.

However, something I’ve long wanted to say that has more weight now that I’m also a parent of a child with diabetes is that parents do well to remember that no matter how much suffering you’re experiencing, it’s worse for your kid.

Since I was 10 years old, when my sister was diagnosed, I’ve heard the following from type 1 parents (I never heard my parents say these things, thank goodness):

“Kids are resilient, it’s so much harder for the parents”.

“I’m glad my child got it early, they don’t know life with type 1 so this is much easier.”

“Children are different, high blood sugar doesn’t bother them much.”

“It’s so tough for adults who are diagnosed because they didn’t grow up with diabetes and get used to the needles and everything.”

These comments, while they might be someone’s valid opinion, for which I’ve never received an explanation that makes enough sense to me, indicate a lack of empathy and ignorance on the part of the parent, towards the type 1 child.

Parents are adults (or ought to be) and so they have much more in the way of resources with which to cope with difficult situations. I’ve been the kid with diabetes and I’ve been the parent of a kid with diabetes and I think it’s harder to be the kid. You still have worry, fear, and increasing awareness about how diabetes affects your life and you have to deal with it without completed brain development and before you master many other tasks.

We look at children and they play, they smile, they laugh, and we tend to forget that deep down they think and feel very deeply. Often, we talk to others about how they’re doing and we’re only giving out our perception versus the reality according to that child. So we have to be aware that in the midst of our suffering, it is our child who lives with this disease. It will move out of your home one day, but not your child’s body. Your child knows that and so while you’ll get a break one day, they know they won’t. You’ll likely worry for them their entire lives, but it won’t be the same. In my case, I’ll live with it forever alongside my daughter but I can’t carry it for her so she’ll have to bear all her own burden and I have to respect that reality.

Amidst your suffering, don’t give your child the impression you’re suffering more than they are.

As a kid, it was annoying for me to hear adults tell each other about how their job was the hardest and the diabetic kids were just living it up as normal kids. I did the teenager eye-roll, which was invented precisely so that kids would have a way of physically coping with the desire to throw something across a room when adults showed they forgot what being very young was ever like. Kids don’t have an absence of suffering, they just show it differently.

If diabetes is bad, then more time with it can’t be good. Impossible. So, that’s my thinking on the topic of it ever being a good thing that someone gets it sooner versus later. Damage adds up over time. It’s simple arithmetic and statistics. Damage is bad and who knows what someone’s personal threshold is for damage turning into a complication.

High blood sugar still affects kids, even if they say they can’t feel it and even if they can still be good at sports like I was, despite running high numbers. Children struggle to pinpoint their symptoms, this is why pediatricians get trained in the specific ways children describe certain sensations. They also have acquired less potential for neuroticism in their short lives so you’ll not hear so much complaining from them the way you will from an adult. Deep down, the symptoms they feel affect them. And at a cellular level, they’re absolutely being affected, the effects of which may not be very noticeable until they’re adults who must now take on this huge burden of accumulated damage.

I’m constantly wowed by the things my kids say, evidence that I too can forget their capacity for nuanced and complicated thoughts and feelings at their tender age. What children with diabetes need (speaking as a former child with diabetes) is to be asked about how they feel and what they think. You might discover they don’t care if someone tells a diabetes joke (that outrage might just belong to you) and they might feel profoundly sad or tired. Try not to speak for them. Don’t tell others that your child is empowered and handling this well. They might feel that you’re misrepresenting their experience and that makes it hard for them to tell you if they’re having a particularly hard time–they don’t want to make you out to be a liar. Listening to them talk about their diabetes from their perspective is probably one of the most helpful things you could do.

How to Do Easter With Diabetes in Your House

Too many people seem to go overboard on Easter candy, in my opinion, and as a result, their kids do, too. The effects of sugar are such that if your child has any major stress happening, they might be tempted to sneak candy in when you’re not looking and this can wreak havoc on blood sugars.

Trying to dose for and cover candy doesn’t usually lead to any consistent positive results, either. Unless you’re ok with a 160 mg/dl and in that case, therein lies our fundamental disagreement.

Either way, havoc-wreaking on blood sugars is a very big deal and is to be avoided for your child’s immediate and long-term wellbeing. It’s not “ok” if it’s often happening because we’re letting it by doing things that make success highly unlikely, you know? Like, if it usually doesn’t go well, why keep doing it?

Here are some ideas on how to celebrate Easter if you do (or don’t) have diabetes in the house:

  • Make a special roast or something that you don’t eat every day.
  • If you’re a Christian, here’s a reminder that you obviously should know where to put your focus and this can help you avoid too much emphasis on all the other Easter activities.
  • Bake a low carb treat to have after dinner. This splurge isn’t going to mess up blood sugars and there isn’t going to be a bucket of more of it tempting you or your child for the next few weeks.
  • Plan a fun activity. It takes creativity, especially if you have kids of different ages (though they all have different personalities). Talk to your kids and find something the whole family can enjoy.
  • Start a new tradition. This also summons creativity but it’s worth it. Kids are ok leaving behind something like typical Easter egg hunting with candy if there’s a worthy replacement. Some people stuff eggs with coins, others do erasers, stickers, and other small toys.
  • Put on music.
  • Bring a festive attitude–it’s infectious to your child and other family members.

Here’s what I’m considering (my kids are 9):

I am thinking about filling eggs to put around the house with numbered instructions for a treasure hunt. The kids would have to find all the eggs, put the instructions in order, and then answer riddles and questions for clues to the treasure. I don’t know what the treasure is, yet, but I think that it won’t be as fun as the treasure hunt itself, especially if it involves me getting up early to hide more clues around town. We did that once for my husband, Alex and the kids thought it was the greatest thing we all ever did. It takes effort but you gotta admit, it sounds fun, right!?

You can even plan for the treasure to end up with your church service. I’m not religious but for those who are, that sounds like an excellent idea to me! Unless it’s really early in the morning, then you’d have to get more creative, I guess, like starting the hunt on Saturday and ending on Sunday. Or the treasure could be a small gift that’s waiting at home. This works for all ages because you can make simple or hard questions and riddles and keep the locations as close to home as you want (living room or backyard is totally sufficient for very little ones).

Your kids will enjoy all this quality living that focuses on relationships, things of special meaning, and enjoying that which nurtures us and they won’t need the powerful effects of sugar to soothe or stimulate them. Yes, it’s hard with everyone doing loads of candy and chocolate but you can do different and maybe others will join you over time in tweaking the way we celebrate Easter and other food and kid-centric holidays.

We have to lead the way if we don’t like “how things are done” instead of just complaining about it all or bemoaning the consequences.

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.

Why My Child Eats Low Carb for Her Diabetes

In a post for Diabetes Daily, I wrote about the 5 main reasons why I feed my child with diabetes a low-carb diet. My duty is to deliver her safely into adulthood and ideally with perfect health, so that’s what I’m going for. And yes…her mental and emotional health is one of the priorities. Click below to go to DD and check out the article.

Share with a parent of a child with diabetes you think may be interested. As a former child with diabetes, I wish someone had shared something like this with my parents.

5 Reasons Why My Child With Diabetes Eats Low-Carb

One For Every Year

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My most memorable thoughts about diabetes for each year with diabetes, starting with the first year as an 11 year old:

1994  “I can do this.  No, I won’t go to diabetes camp, I’m just like everyone else, I’ll go to regular camp.”  “Ok, regular camp was fun but I thought I was going to die”.

1995  “Alright, I don’t like this at all.  I’m not sure I can do this.”

1996  “I can’t do this!  But I don’t want anyone to know…”  “I just want to be normal”.

1997  “Recovering from a gum grafting surgery.  So this is what happens when I try to be normal.  Not fair.”

1998  “I wonder what boys think about my diabetes?”

1999  “I hate diabetes.”

2000  “Feeling out of control.  Help!”

2001  “The way things are going, I might as well give up.”

2002  “I can’t do college while panicking like this.  I can’t even pick up a pencil.”

2003  “Can I turn my life around?  Is it possible?  I can’t live like this anymore.”

2004  “Ooooh…alcohol…what a nice way to forget my problems!”

2005  “Alcohol is useless.  Trying to do better.  Trying to do better.  Trying to do better.”

2006  “Eat this not that.  Do this not that.  Change is hard.  Super hard.”

2007  “Wow, I’m doing better…Just keep going.”

2008  “A1c is down.  Weight is down.  I can run a 5k every day.  Getting married this year.  Happiness is totally up.  I can’t believe this is my life now.”

2009  “TWINS!  Must. Have. Sleep.”

2010 “We’re not poor, we’re just struggling. (Can I borrow a $5 for groceries?)”

2011 “Hello DOC!”

2012  “I can do this!  Wait a minute…I am doing this.”

Life ebbs and flows.  When you’re on the up, enjoy it and take steps to safeguard your future.  When you’re down, know that you will be back up again.  Just don’t give up hope.  Giving up hope prolongs the process between going from down to up and we don’t want that.  Don’t give up hope.

Wordless Wednesday

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Ok so my version of Wordless Wednesdays isn’t so wordless.  But it’s shorter than the usual post.

I just read an article in last month’s National Geographic about Teenage Brains.  By using modern technology they’ve discovered that the teenage brain is not fully formed and this serves as an explanation to the often bewildering and parent maddening behavior.

What does this have to do with diabetes?  Well, the article states the brain’s development is completed in the mid-20s and the fact that before this the brain is incomplete and this has a direct impact on decision making skills.

How many of us struggled most with our diabetes during our teenage years and early 20s?  I did.  For those of us who grew up with diabetes, I think we owe ourselves forgiveness.  Trying to survive, day to day, with such a complicated and relentless disease without even having the proper mental maturity to do so 100% of the time?  That’s actually amazing.  For those of you with children with diabetes, this article really is a great read.  I definitely needed my parents to help me with my diabetes when I was a teenager and to stay connected and to catch my sneaky ways and notice when I was taking a crazy risk and I don’t think I’m the only one.  (And I was a kid everyone thought was responsible and “together”)

This may not be the most uplifting of news but the article puts a very positive spin on it and helps us appreciate all the wonderful things about young people and gives a few tips on how to help.

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