Parents Mental Well-being

Type 1 and LADA Parents of Children with Type 1 Diabetes
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I completely understand. I think we have been t1 parents around the same amount of time. I know that I will never sleep peacefully again.

Last week we were fighting night time lows. This week we have been fighting night time highs. Even when he runs higher at night, I am nervous for a quick drop.

We have all the alarms in place. His pump beeps, then Dexcom cries and a fire alarm goes off on my phone. I still feel more comfortable if he is in the same room as me.

At the science fair the other night he dropped from 108 to 51 in less than 30 minutes. Yesterday was a good bg day. He woke up and had the exact same breakfast this morning as he did yesterday with a completely different result.

Change is our only constant and getting used to that will take the rest of my life. I have no real advice…just know that we are right there with you.

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I feel the same about my daughters diet. She has always eaten healthy, well balanced meals. The kid loves her chips and fries. We do not have them often. More of a snack night. She loves her fruits and pastas too. My wife and I swore that her diet would never change. We will simply study and learn her trends with various foods and manage them with insulin. It’s a learnin curve. Her sugars have been fantastic the past 3 days. She has spent 90% of her days between 4 and 9 mmol/L. We were at McMaster Children’s Hospital for our 2 week checkup since having the pump and for the first time her A1cs are on target. Let’s hope it continues

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Hello Josh,
In regards to your daughters diabetes. I just want to tell you I’ve been a Type 1 Diabetic since 1956. I was diagnosed close to my 6th birthday. When I was a kid, no one lost any sleep worrying about me. In those days it was one shot a day hit or miss. I woke up numerous times either sick from being too high or sweating because I was too low. I’m no expert, but I’ve lived a long life. I believe I’ve made it this far believing that we all have within ourselves a sense that will warn us if we are aware of how our bodies operate. I know this may sound harsh and you want to do the best for your daughter but, my advice is to slowly let go and educate her and yourselves on what the body goes through when it has too much insulin or too much sugar. Once she is experienced, she should be able to react unless the effects are so sudden which would only happen if a larger than normal amount of insulin is given or she has been lacking insulin for a long time.
Not sure if this helps but I’m trying to relay some idea’s from experience.

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Hi Halvdan. Thanks for your reply to my post a while back. I haven’t really been reading up on the forum lately. Thought I would take a look and I’m glad I did. Thanks for the video link. J just finished watching is and I’m glad I did. We have been having a tough go lately with my daughters blood sugars and we have been trying a few things with her diet. My family loves their carbs. Especially Emma. I’ve been trying to limit them at school to help manage her sugars better and the selection of foods is getting smaller. I just hate seeing the look of sadness on her face when she can’t have a particular food. It kills me. She was diagnosed about a year and a half ago at the age of 6. So she has a love for carbs. After watching the video I am really thinking about taking the family on a limited carb diet. Not so much zero carb diet but a reduced one. I’m really starting to think that taking my kids grocery shopping is going to be out of the question for the next few months. They are my weakness. I am curious as to what your diet looks like? Thanks for the post.

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Thanks anon. Blood sugars have been really off lately and I have no idea what is going on. I’m really thinking about limiting carb intake for the family to help offset the ridiculous bgs. Too many sleepless nights and I’m beginning to see how her highs and lows are effecting her moods. Not liking it at all. The problem we have is that Emma is getting really tired of the carb free foods. We buy the unsweetened apple sauces and unsweetened Jello but she is falling off that wagon. She also loves her breakfast cereals which will be tough to take her off of. J don’t know. Things are just so up and down right now and I don’t know what to do.

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We are beginning to accept the same about Emma and carb counting. We still have to count for the sake of her pump and bolusing at school. Not sure how to get around that. Plus her sugars are different from one day to the next even though she has eaten the exact same foods and portion sizes. I don’t want to restrict Emma from carbs bit I am beginning to realize I need to reduce them. Her sugars are not what the doctor’s said they would be with her on the pump.

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@Josh101
Do you do pre-bolus?

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We have tried. Emma’s sugars are so inconsistent that it becomes difficult to arrange a nurse to come to the school to pre bolus before her nutrition breaks. That and her sugars are too inconsistent. We have an appointment with her doctor next week at sick kids and will be discussing this. She has only been on the pump for 3 months too.

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@Josh101
How is her post-breakfast BG going into Lunch?

We have found that a breakfast pre-bolus (about 45 minutes) has a larger impact than the other meals. Probably multiple reasons.

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Hi Josh,
I understand that your family love their carbs. Just about everybody does. And yet… If you are diabetic it is the one ting that will get in the way of a healthy life. The thing is that to view NOT eating carbs as a restriction is the wrong way of looking at it. What you have to do is to find out what the alternatives are and then CHOOSE those. I don’t view not smoking as a ‘restriction’ because I choose ‘not’ to smoke. In other words it is something that can be controlled. What most people with T1 children do when they practice low carb is that they do it as a family. Without a total commitment by the whole family it is almost impossible. There are LOTS of alternatives to just about any carby food. For me the hardest part was to learn about new ingredients and familiarize myself with a different way of doing things. Now that I have it is relatively easy. Don’t get me wrong, managing diabetes through among other things low carb takes a lot of work and micro managing. But I rode the roller coaster train for 30 odd years and even though I am by no means perfect the moment I went low carb a HUGE weight was taken off my shoulders and I will never ever go back. It is also worth remembering that low carb eating is a far healthier option even for non diabetics, so everybody will benefit.
There are people that claim they can manage their blood sugars through pre-bolusing and sugar surfing, and I am sure some are quite successful, but it is not easy for anyone. The low carb route is probably the easiest way to avoid future nasty complications. Two years ago I wouldn’t thought it possible, but today my A1C is 4.9, I rarely experience lows (at least not crashing lows lows I worry bout), and I very rarely go above 130)
The look of sadness on your daughter’s face is upsetting, but the look on her face 10 - 15 years down the road will e far worse. I don’t let my kids play in traffic, and I don’t let them go rafting without life jackets because… well, you know why. So why would you buckle under the pressure of a ‘sad look’ when it comes to something that statistically is likely to cause so much grief, pain and suffering in the future? Many people will hold on to carbs for dear life and I just cannot understand why. If she had a peanut allergy I am sure you would simply forbid peanuts in the house. Same (although admittedly more complicated) with carbs.
At the very least, you and your partner ought to inform yourselves thoroughly on all aspect of nutrition and weigh up the choices. If in the end carbs are so linked to the happiness of your household that without them you will all suffer greatly, then figure out a way to deal with carbs. You will probably decide the potential consequences are worth it. On the other hand if you do not consider the consequences worth it you will find another way, because lots of other people do it and it just isn’t that hard.
I would highly recommend that you buy the book the Diabetes Solution, by Dr Richard Bernstein and read it a couple of times. He is an 83 year old diabetic who basically is the most knowledgable person on diabetes, and who is a pioneer in the field. His book does not offer a cure but it is a handbook, or manual, for how to achieve normal blood sugars. If not for him diabetes treatment would not be where it is today. His story is remarkable. He also has a you tube channel (run by RD Dikeman, the father of a T1). Dikeman found Dr Bernstein early on and decided to record all his wisdom for future generations. The Youtube channel is called Diabetes University. There are also two great low carb cook books that I would recommend. The first one is called The Everyday Ketogenic Kitchen, by Carolyn Mitchum (http://alldayIdreamaboutfood.com), and then any of Maria Emmerich’s books (Amazon.com: Maria Emmerich: books, biography, latest update). Her website is http://mariamindbodyhealth.com. There are also hundreds of yummy recipes at the Typeonegrit Pinterest page.
I have several other links about low carb eating and the general health benefits, but more related to your daughter here is a video from a presentation made by the parents of a boy diagnosed at 8 years old, and also one which is a Happy Birthday (to Dr Bernstein) video made by Low Carb people that follow the Dr Bernstein regimen.

Good luck! I know you want the best for your girl, so my main message (in spite of the hard sell), is to get informed, and know that her’s and your happiness will not be dictated by the ability to eat carbs. Health is absolutely worth more in my opinion :slight_smile:

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Caleb is now 15. Things are so much different than when he was seven. If our experience is a measure of how things go with a child with diabetes, and I’ve heard the same from those who have taken the path before us, so maybe it is, these irregular bgs will not be forever.

That doesn’t particularly help now, other than to know that is should get easier down the road. I remember the constant struggle from day to day. I think it was due to a few things: 1) we held ourselves to a really high standard, 2) little bodies are more sensitive to insulin, 3) I thought we were on a pretty regular schedule, but even the slightest difference in activity, growth or health messes with bgs, and 3) pumping means only using fast acting insulin and it can be finicky, particularly when the user is very sensitive to it.

Things that helped: record keeping of every detail, reviewing those details, identifying trends and adjusting action/dosing subsequently, prebolusing, using basal programs to help with meal spikes, superbolusing, talking to people who understand.

I spent a lot of time with charts and graphs and data and was able to come up with plans for various food and activity scenarios. It was still a continued struggle, but gaining some sense of control and reason over things helped. It was intensive and exhausting. It was suggested several times to loosen the reigns and be accepting of higher bgs. That’s another option. It’s a balancing act.

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Hi Josh,

Nice to meet you. We are also Canadian, from London ON and my daughter was diagnosed when she was 5, just before she was 6, so it’s been 6 long years. We were diagnosed at Sickkids and did our initial training there. It’s such a great hospital and I hope you find some help there.

Diabetes is not easy and we have struggled over crazy blood sugar, and then diet decisions. But our daughter is not on a low carb diet and won’t be until she chooses that for herself. Simply because we have three other kids to feed. So as much as I am fully convinced that a low carb diet is better for type 1 diabetics, I know that I can’t incorporate that for my whole family, especially with two teenage boys in the house!

So Sarah eats carbs, but we don’t buy processed food, and make all of our own granola bars/cookies which is great because then I can lower the sugar and up the fibre.

The thing is, I’ve read a ton and there are some active type 1’s who eat carbs and have great A1C’s because they burn them off. My daughter is super active growing kid and we are gearing for a summer of soccer and swimming, and when we add the trampoline in the mix, I won’t be upping her insulin all summer and likely will have to dial everything down once everything gets started.

Have you noticed a difference with your daughter’s blood sugar levels as they accord with her activity, because that can play a huge role! Especially when they are little because they might spend one day playing all day and the next day they are tired and won’t move much at all. That is going to affect her blood sugar like crazy!

When making all these decisions and trying to keep your daughter’s blood sugar balanced and trying not to stress out night-time lows, here’s the thing to keep in mind… there are people on this forum who have had diabetes for decades they have survived. And when they started there were no CGM’s or insulin pumps… maybe less technology was easier in some ways, less information to get stressed about. So we know that type 1 is survivable but sometimes it is going to get the best of us and so we just get up the next day and start again.

Oh, and an A1C of 8.2 is Canada’s national paediatric average. It makes me feel better because I always know some parents might be doing better than me, but others are doing worse. We just try and do the best we can. :slight_smile:

So I hope you find some answers, and find some solutions that work for your family!!

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Thanks for your reply Leelaa. I just picked up the book"diabetes solution" by Bernstein on my way home from work today. We aren’t going to.cut out carbs 100% but are going to reduce them. We have an appointment at Mac sick kids next week and will be discussing Emma’s sugars. We just aren’t happy with her trends and the drastic drops in her sugars. It is messing with her moods and energy more and more.

Emma played hockey this winter and swam. This summer she too will play soccer and swim alot. We haven’t noticed a huge difference in energy levels the day after. Her sugars tend to get a.little on the high side the night of. Still learning. I wouldn’t m8nd shedding a couple pounds myself so a low carb diet wouldn’t be the worst. Lol. We will see. Mornings tend to set the trend for the day. Her liver dumps a.lot of sugar in the mornings so she is often high in the mornings. With her nutrition breaks so close together at school, she never really has a chance to come down. So I tend to stick to about 20g of carbs for first break. That is again for your reply.

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We saw similar. We have the pump set for a significant basal increase about 90 minutes before waking up. Then upon waking, if a bolus is immediately done for the breakfast carbs to be eaten 30 ~ 45 minutes later it is generally quite effective for us. The pre-bolus is not always remembered and it is quite a huge difference which as you say, impacts the remainder of the day.

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I do the same. But have to make sure I don’t get distracted and forget to eat. But then dexcom reminds me :grinning:.

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Thanks for everyone’s replies. I truly appreciate them. Emma has been on a low carb diet the past couple of days. She gets about 25grams for each of her 4 meals. What a difference we have seen. The spokesman her sugars are limited. Her after breakfast spoke is a bit higher but we are finding that her insulin is breaking it down much quicker. It has become way more manageable. Even her night time sugars. We have learned that we need to adjust he IC ratio due to an increase in the number of lows especially at night. Last night I decreased her basal by .05units from.2 to .15. She still had 2 lows an hour apart. Tonight I will decrease her basal again within that time frame by another .05. Perhaps her IC ratio from dinner is partially to blame for the nighttime lows. All I know is I like this low carb diet. Her BGs have leveled out significantly. Since my nighttime rant a couple days ago, Emma has maintained sugar levels between 4 and 8 90% of the day. Very pleased with this.

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