When/How do you tell them?

Parents
1

Hi, my name is Jennifer and my son is about to turn four years old.  Was diagnosed at 14 months.  I have been wondering, when is the right time and how do you tell your child about their diabetes?  I've tried explaining it as simply as I can, but as a toddler I keep getting the question why?  He's also only allowed 40 carbs per meal, including his drink which we manage pretty well, but when he's finished eating he says he's still hungry.    He gets a decent sized healthy as a picky kid's meal can be and he wants more, but I can't give him more.  Of course, as mom it makes me feel bad.  I try my best not to eat around him sometimes when we have those days.  

Some days I am at a loss at how to tell him.  There was one day that broke my heart a few months ago.  I was making his lunch and I can't really recall our conversation but at one point he asks me, "Momma, when are you going to fix me?"  I gave him his peanut butter sandwich and went around the corner and let a few tears slip.  I wish to god I could fix him.  I would do anything to fix my lil man.  I didn't know what to tell him.  So, how do you explain to your toddler that he has type one diabetes, he can only eat what he's allowed, how do you explain carbs to him (or her)?  His questions are becoming more frequent and I don't have the answers.

Thanks for any advice or help you can share.  I love my T1D son.  <3

2

We're going through something like that now. Our son is 4 also and he is now asking how much longer does he have to get shots. It breaks my heart when he says it. I wish I could make him all better. I wish I could take it from him. I would gladly give myself shots for the rest of my life if it meant he didn't have to anymore.

Why is he restricted to only a certain amount of carbs per meal? When my son was first diagnosed, just had our 2 year mark, he was on a meal plan. He could only have so many carbs, fat, and protein and we had to fit it all into a meal. It was HARD!!!!! We went through the same things as you are. We finally switched to a new endocrinologist about 6 months ago and he is now on the carb counting only. It's sooooo much easier. His doctor doesn't mind how many carbs he eats per meal as long as its not all junk. He has been doing remarkable well since we've changed doctors. In my opinion, you can't restrict children from only having so much to eat. Sometimes he has 80 carbs for a meal. Sometimes higher. He eats well and loves fruit. I let him eat as much as he wants. He loves candy, but he only gets a small amount once in a while. Kids can be difficult. The more you take or not let them have the more they want.

Good luck to you and know your not alone in this. We all go through tough times and its so heart breaking.

3

You know, I'm not really sure why as to the reason he's restricted.  His dr doesn't want us going above 45 carbs for his meals.  He doesn't get candy, but sometimes for either part of his meal or a snack he will get half a sliced banana with a few sprinkles.  He and his sister both are very picky eaters.  :)   We even went to a nutritionist on a visit last year and she had no more of an idea how he should eat than we did.  I was like ooookay.  We do the best we can and that's all we can do, right?  Oh and at lunch today for some reason he was 496.  Everything before hand was normal.  We went through probably four pullups in one hour.  Potty training hasn't been easy to say the least.  LOL  I will be so glad when he is.

4

Luckily my son (4 as well; 16 mo dx) hasn't asked questions like that. But we don't have any carb restrictions in place. That sounds like a problem to me. If he's asking from a hunger standpoint, then it sounds like you need to talk to your endo. 40 carbs isn't much for meals like lunch and dinner. You'd have to give him a lot of protein to fill him up on those number of carbs. We give my son a reasonable carb meal and a "special treat" (read: something sweet). We average 40-60 carbs but we've gone up to 100 before (not often). We just dose and correct accordingly. His A1C is 8.5 so we aren't doing too bad with that routine. If he doesn't like the shots, then you might want to talk to your endo about getting a pump. That will give you freedom as well for snacks and unexpected highs.

Long story short, my son gets what he wants (within reason). We don't limit him because of his diabetes. We give him correction doses if he has something big between meal times. We still have our highs and low but we deal with them as they come. Every day is a new day on how his body is going to react.

Tim

(Merrick's Dad)

5

I don't think you need to have a big talk.  Just let him know different people have different challenges and be open to questions and conversations about having diabetes (and his frustrations about it) that naturally come up.

Since your child is school age, make sure to do the obvious stuff, like tell your son to always tell his teacher that he has diabetes and make sure your son knows how to treat his low blood sugars.

Most kids have times when they are ravenously hungry and other times when they barely eat.  That's part of normal growth and development.  Your child should never be hungry and I think it's bad in the long run to eat a restrictive diet.  

Limiting carbs isn't necessary and it's not real life.  In the early 1990's carb counting was introduced, which allows a person with diabetes to dose short acting insulin (Novolog, Humalog, Regular) to the number of carbs eaten.  

6

Yea I would definatly talk to his endo about the carb restriction. 1 peanut butter and jelly sandwich could be 40 carbs alone. That's not enough food for a 4 year old to eat. My son just had a peanut butter sandwich, 2 yogurts, and 2 fiber one bars for lunch. I couldn't imagine feeding him only 40 carbs. Hes a growing boy and is nowhere near over weight. When he was on the meal plan his A1c was between 8.5-9 and now that we only count carbs his A1c is 7.5.

Potty training itself wasn't a problem since he was potty trained early and before he got diagnosed. However, the problem we did have was getting him out of diapers at night. Having diabetes and having sugars fluctuate during the night seemed almost impossible and we liked the fact that we could check his ketones every morning from the gauze pad that was in his diaper. I am happy to say that he has gone to bed without a diaper for a little over a week now and only had one accident the first night. I thought it was going to be impossible to get him out of them at night. It takes time. I wouldn't  worry about it too much. My son will be 5 in April. Our goal was to get him out of them before he started kindergarten.

7

I'm not sure where you live, but JDRF has local chapters and there is always something going on and maybe you could get him to go to some of the events. We do the walk and we just went to the Pittsburgh celebrity vs JDRF hockey game. My son got awards and the golden sneaker award from the walk and he is soooo proud of it. Being involved in some of the things help alot. Just a suggestion :)

8

When my son was diagnosed at the hospital, the doctor there tried to set us up with a fixed carb lifestyle.  But as soon as our heads cleared, we realized this wouldn't work for him/us.  We wanted him to have a normal life with holidays, birthdays, hungrier days, etc.  

You need to speak to your doctor about a more flexible lifestyle.  If he won't work with you, consider switching to a more up-to-date endocronologist for your son.   Good luck!

9

To teameddie1 - he actually only eats peanut butter, no jelly.  He says it makes them soggy.  LOL  But two pieces of bread with peanut butter is about 30 carbs.  Also, I use cookie cutters to make them fun for him and his little sister so not all the bread is used.  It's gotten my daughter to eat them more often now.  Sometimes I'll add half a sliced banana with a tiny bit of sprinkles to the side.  He gets excited about that.  :)

We live in Kerrville with no endo in our town for T1D kids.  We have to drive an hour to San Antonio every three months for his appointments.  Next one is next Thursday.  His A1c had been a steady 7.8 for the past two years but recently went up to 7.9 from our last visit.  We stil don't understand a lot of things as there is no one else to talk to about it.  We tried racking our brains as to why it went up, nothing changed.  Except for the fact that I had a new baby in the house.  (Seven weeks premature, I had to be in the hospital a week for HBP)

Oh and I would LOVE to take the kiddos outside to play (my mom and husband both work during the day), but 1. we live on a hill 2. in a trailer park 3. with a sex offender just around the corner 4. and no fence to speak of.  A park would be a great idea except there's only one car, and for some reason not all the carseats fit in the backseat.  (Figures, right?  Also, we'd have to drive miles into town in order to get to a park - so no walking there.)   I'm not trying to make excuses, I'd like to do (what is in our means, which isn't much) everything possible for him.  Sweet little boy.  He'll randomly come to me and say "Momma, know what?  You're beautiful."  I love that guy.  

I digress.  Anyway, thanks all - I will be bringing this up to his doctor when we head up there next week.  Oh also, I found some really great shirts on cafepress for Juvenile Diabetes.  I got my daughter one that says "Heroes come in all shapes and sizes, I know because my brother is one." and on the bottom Juvenile Diabetes Awareness.  For my son I got one that has the Superman symbol except for the S it has Hero in the middle.  Lots of great ones, I may get one for me and his dad as well.  Sorry, I get a little random sometimes.  :)

10

As far as getting outside for exercise - sometimes it's hard... We have a wii game, and if it's an "indoor day" due to rain, cold, snow etc... we play Wii Sports or Just Dance to get some excercise... but Wii can be expensive. So, there's a game called Hullabalo that gets the whole family up and moving... don't need to much space - just an area on the floor. Sometimes I give my kids indoor "obstacle courses" too... Even if it involves 5 jumping jacks, 3 hopping up and down off the couch, army crawl across the floor and then marching back to the finish line, etc...

As far as telling him... My son was 5, so he knew from the start - and now at 8, when people ask him about it, he says "I have diabetes, so I need insulin." and that's it.  Most kids don't ask after that, but I always tell their parents they can ask me any questions...  Here's an idea... My neighbor's daughter was adopted.    She's only 7, so she really can't understand completly, but they've used the word adoption, and  always go to adoption events and gatherings... They've always been quite open about it.  So,   maybe if you start using the word "diabetes" "blood sugar" "insulin" etc... with him, he will come to use them himself... Immerse him in the language just as my neighbor did with their daughter's adoption.  Let him be able to answer the questions - for example, when he's asked, "Why do you have to take shots?" Let him be able to say, "Because I need insulin." or "Because I have diabetes."  The kids won't really understand - but it usually stops the questions...

Finally, attend events!!! They are usually on weekends.  My son, Jimmy, is the only T1D in his school district, so he has no "buddies" who can relate - for this, the events help!!  Also, there are camps for diabetics, and Jimmy attended this past summer - which is when he began taking ownership of his diabetes.  The cable guy came over recently to fix a problem we were having, and he noticed the "tester" on the counter.  He said, "So, who has diabetes?"  He said, "I do. Why, do you have diabetes, too?" And they had a whole conversation about how they care for themselves - Jimmy wanted to know why on earth he wasn't using the pump yet (the pump changed our lives!!!) And they even talked about the camp they both attended here in NJ!!!  The camp and the events are so good - almost like "safety in numbers" where Jimmy is just Jimmy and the diabetes is completely normal and ordinary...

One last thing - definitely talk to your doc about carb counting... That's how we started out - and I couldn't imagine limiting him... He's a bottomless pit and a grazer, so between carb counting and the pump, the diabetes is more manageable.  The Medtronic company is amazing - they do in home sales and training.  I can reach out to my rep (who is AMAZING) to see if he has a connection in TX (that's where you are, right?)

God Bless, and give your babies a kiss and hug from Jimmy!!

Peace,

June

11

We tell my daughter that everyone is different. Some people have brown hair, some have red hair. Some people talk in English, others talk in Spanish or French. Some people can walk when others have to use a wheelchair. And some people, like her, have diabetes and have to do special things to stay healthy and some don't have diabetes.  She is 4.5 now, but this explanation worked well even when she was three. Now if another kid asks why she has diabetes, she answers "it just happens sometimes, everyone is different". We also talk about how a person's pancreas makes insulin, but for some reason hers stopped so now she gets insulin from her pump instead.

12

Jennifer-

When your son turns 8 he'll be old enough to attend diabetes camp at  Texas Lions Camp in Kerrville.  Sounds pretty cool.  I grew up in MN and CO and attended camps in both places.  Diabetes camp is great for kids and also gives parents a break from caretaking.   www.lionscamp.com/Camps-DiabeticCamp.html

Are you going to a pediatric endocrinologist in San Antonio?  Dr. Jane Lynch came up on a list of best pediatric endocrinologists in your area.  You may be seeing her now, but if not you may see if it's an option.

health.usnews.com/.../jane-lynch-pediatric-endocrinologist-89CC002386

A slight fluctuation in A1c is usually not a big deal.  It's just the average blood sugar for the last 3 months.  So he may have had a few more highs or a few less lows, which raised the average.  Look online for an HbA1c conversion chart.  Think a 7.8 = 200 blood glucose and 7.9 = 204 blood glucose.  Don't be upset by the catergories on these charts that list anything over a 7.0 as "bad."  You need to work with your child's doctor to determine the best goal for him.  Kids typically have a higher A1c goal than adults because they are more prone to lows.  But talk to your doctor about what's best and how to reach that goal.

It must be crazy with a new baby and an older child with diabetes.  You sound like a really good mom and you're obviously are trying to do what's best for your son.  Take care and let us know if you need anything else.

-Jenna

13

Hey Jennifer,

  You may want to look into Dr. Stephen Ponder. He actually directs the Texas Lions Camp in Kerrville but he practices out of Odessa. Supposedly he was trying to start an Internet endocronology practice called DiabetesHouseCall. I'm not exactly sure how it works or if it took off. I heard him speak at a TypeOneNow conference in Austin a couple of years ago. Might be worth a look to see if it is an option.

 Speaking of TypeOneNow, the Austin JDRF chapter is sponsoring one on Mar 2. There is a fee but it's an all day event with lunch. I learned a lot when I went a couple of years ago. I didn't get to go last year but I'll be there this year.

Tim

14

You guys are sooooo awesome!  Thank you bunches and bunches!!!

15

One thing our endocrinologist said was its bad enough when children have diabetes, don't make it harder on them by restricting their diet.  Let them be like any other child without diabetes.

16

Our doctors office has a dietician on staff and we usually see one of them at every visit.  Last year I told her my 9 year old (who is 4 ft 11 and pretty lean, looks like he is about 12) was still hungry at breakfast when he had 45 carbs so she didn't see any reason why we couldn't go ahead and bump it up to 60 carbs and since then he is always satisfied.  Last year my son gained 2 pounds but also grew 2 inches and the doctor told me it was because he was having a snack again.  And I just told him that he had been having a snack all along.  When he was on a 70/30 for almost 2 years where it was 3 meals and 3 snacks everyday then they switched him to MDI and didn't really want him to have the snacks.  And I was just like you can't create this schedule with meals and snacks and then expect them to stop having the snacks cold turkey.  I would definately talk to a dietician because that is just crazy to expect a little like to be so restricted.  For my son he gets treats and such just like any other child we just work it in or give him a little more insulin. He is 9 and here lately he has been trying to sneak things because he is still hungry.  Never thought he would be one to sneak but I guess it probably happens to others.

17

People with diabetes are twice as likely to develop eating disorders.  It's because of being on unnecessarily strict diets.  There is no reason a child with diabetes need to eat a restricted diet.  If your doctor is advocating that, find a new doctor.  You don't want to risk undernourishing your child or stunting his/her growth.