We are just over two weeks into the diagnosis of Type 1 diabetes in our 2 year old. While he’s doing amazing, his parents are struggling. I feel like we left the hospital with a ton of questions and the very basic of resources. Maybe it’s supposed to be that way because this is more than overwhelming anyway, but life still happens and we have questions. Here are just a couple that we have been experiencing:
How long did parents see huge fluctuations in blood sugars?
Any helpful tips for eating out? What are some websites/apps you use? Do you bring a good scale or measuring cups?
Did you meet with a dietician more than once? If so, how often do you recommend?
Thanks in advance for the help.
Hello Anna, I got T1D when I was 14 months old in 1963. There are very good knowledgeable people on this forum that can usually help you with suggestions and answers to your questions. Can you give us a little more info like is he using an insulin pump, does he use a constant glucose monitor for you to see his blood sugar, what are his sugar level ranges, is his appetite ok, do you have a nutritionist or dietician that you have been talking to? You can also do searches here that may also give advice. There are other parents with young children on here that will probably see your post and offer assistance so hang in there, we’ll help any way we can. BTW, has the hospital offered any support group info for you to contact maybe with other local parents experiencing the same situation?
Oh wow. Dealing with this with a two year old is going to be difficult. I hope yours isn’t too fussy about eating and discipline and so on. You have my sympathy.
Education is important. I was lucky to have a top notch diabetes education class at my local hospital, which also offered an ongoing support group. COVID makes that more difficult. But it’s worth checking to see what’s offered in your area. It may also be a good idea to find your local JDRF chapter and get in touch with them. They’ll know more about local resources.
I’m not an expert, let alone a medical professional. But the honeymoon period can be unpredictable. Especially when you’re dealing with growth spurts, too. It’s highly individual. Depends on how much of the body’s insulin production capability is left and how quickly the rest is going away.
Calorie King was recommended to us for my grandfather, and it served us well. Available as a website, an app, and a printed pocket-sized book. There are others. But, no. I’ve never brought measuring cups to a restaurant. I learned fairly quickly to eyeball portion sizes. You’ll get the hang of it. That said…
Talk to a nutritionist as often as you need. Which will vary. Get the training. Get up to speed. Get to a point where you’re comfortable. That may be one appointment or it may be several. You should definitely be seeing a pediatric endocrinologist on a regular basis, and I expect that doctor will have a nutritionist that they regularly work with and can recommend. That doctor (or their nurse practitioner) should also be able to help you get up to speed.
Diabetes is a long haul. It does get easier with practice. And better tools as they become available. But it’s a life-threatening condition with a lot of complex moving parts. So you absolutely should get training and educational resources as soon as you can. I’m glad you found us and that you’re reaching out.
Feel free to keep asking as many questions as you have.
Good luck. It’s a lot to take on. But there’s help. You can do this, and it will get easier.
Paul is correct about the honeymoon phase, it’s very unpredictable and temporary for a period of time. His pancreas may start producing insulin and you won’t know it so while you’re manually giving him insulin by pump or injection it can cause an overdose making his blood sugars drop and you don’t know why because you’re calculating insulin versus calories and then his body adds a little more insulin on it’s own. Then it will stop producing again and you’re back to doing his pancreases job. The start and stop intervals are unpredictable so vigilance is key for that period of time. A constant glucose monitor would be a key tool to help keep you informed and treat low BGL’s early, if you don’t have one I’d look into getting one.
Hi @Abdean . I was a little older than your toddler when I was diagnosed - I am approaching 60 years with Type1 and am doing well. Needless to say the technology came along much later for me and there’s a lot more to learn now than there was then. It will be a great benefit although overwhelming especially at first.
I see a dietitian now and then - I find sometimes I do things so much of of habit, I lose focus. And if I’m trying a new eating regimen or want to lose weight, I might check in to make sure I’m getting the nutrients I need. They will teach you shortcuts to measure foods. Naturally you want to be precise with such a tiny body, especially at home, but the guidelines are very helpful for dining out, and you can always correct after the fact if need be. I use Mynetdiary to record my glucose, meals and insulin. It has an extensive list of foods and you can look up those at most restaurant chains - and you can enter recipes and based on the quantities of ingredients it will calculate carbs and other nutrients for you. I’ve compared its carb counts with those on restaurant websites or food packaging and find them to match. Again, eating out may be a bit touch and go when it comes to quantity but that can be addressed after the fact. You have to pay for an annual subscription but there are free ones available that people on the forum speak highly of. Unfortunately I don’t recall them but I’m sure some responders will share.
PS - a tip on seeing a dietitian - over time I have discovered they send me home with an assignment to keep a food log then return for a review. You could get ahead of the game by starting now. You’ll want to measure so you have the correct quantity, and record the time he ate and how much insulin he took. And of course the carb count which you can look up in your app. You’ll be ahead of the game.
The struggle and questions you have are par for the course - you’re having to learn an overwhelming amount of stuff at once. If you read through posts under the Parents topic you will find parents who started out terrified and who, a few or several months later have become much more comfortable. You will too over time.
Be sure your little guy has a pediatric endocrinologist who specializes in Type 1. Many of not most doctors have only a textbook most of diabetes, and not all endos have Type 1. Type 2 is more prevalent, and unfortunately doctors without Type 1 training may use Type 2 protocols for Type 1 patients - it doesn’t work, so again be sure to find a Type 1 specialist.
It’s helpful if your practice has its own diabetes nurse educator as they will probably be more available than your endo to answer some of your questions.
Do ask about getting a continuous glucose monitor (CGM). They weren’t available until some years after I finished college (in fact we didn’t even have plain old BG meters until about the time I graduated😳) and give huge peace of mind to parents of little ones as well as adults like myself.
You’ll have lots and lots and lots of questions for your medical team. I suggest you write them down so you don’t forget (I can’t tell you how many times I’ve left a doctor’s office and had an “aha!” moment about something I forgot).
You’re on the start of a journey but there’s no reason your son shouldn’t be able to enjoy life. There are musicians, actors, a sitting Supreme Court Justice, a former Prime Minister, and professional and Olympic athletes living with diabetes - not to mention the really important people like parents, teachers, the customer service people at your favorite store, your co-worker or neighbor, etc.
Welcome to the club no one wants to join. You will see people give advice such as “decrease your basal rate,” "try bolusing a little while before you eat, “try changing your carb ratio” (diabetes vocabulary you’ll learn over time😊). Please remember - we are not medical professionals but people sharing tips we have found worked for us. Work closely with your medical team and go to them for specific treatment guidance, especially in the new phase. As you gain experience you will learn to incorporate suggestions, but that is for later.
fluctuations. I’ve racked up 42 years treating my type 1 and my 90 day high and low are 300 and 48 respectively. There will always be fluctuations. The first year is tough because your child may honeymoon and they are growing. Expect change. The right amount of insulin is the amount that keeps your blood sugar good. For a young child follow the dr target and it may be a benefit to use fast acting insulin only after they eat so you can dose for a better estimate of carbs.
restaurants restaurants hide sugar in the water. Restaurants add fat to butter. Restaurants are difficult. Plain and sauce on the side, small portions will be a starting point.
dieticians. Go as much as you need. My 12 year old needs different nutrition than when he was 2 or newborn.
You will be an expert soon. Please consider buying the book “Think Like a Pancreas “ it’s worth the 12 bucks.
@AbdeanHi Anna, and Welcome to the JDRF TypeOneNation Forum!
I’m not a parent of a child with diabetes, so I’ll only share my personal experience. And if he and his parents are anything like me, questions will never cease - I still have many questions after living with diabetes for 64 years.
Blood Glucose Level [BG] and Body Glucose Levels [BGL] will continue to fluctuate for his entire life. There are dozens of reasons BG will rise, and many more reasons will cause BG to drop. Food, activity, and insulin are only the three primary causes of BG to go up and then down.
Restaurants create the greatest challenge for me - when in business, I spent many days at a time eating all my meals out. Experience will provide an acquired skill in estimating portion-sice and carbohydrate count. The problem arises from “hidden carbs” in food preparation. I try to err on the conservative [low] side when carb-counting knowing that I can add more insulin as a correction 2 hours after eating. Try to avoid “overdosing” with insulin because once in there isn’t any way to take it out.
Two hours after leaving the hospital following my two-week stay at my diagnosis, I sat down at the supper table with my parents and siblings - I was number 4 of 8. I ate what everyone else in the family had for the meal - I did skip [mostly] the awesome pies and cake my mother always served. Today, I eat practically the same type “diet” - meat, potatoes and vegetables and plenty of fruit. The main aim in what I eat is healthful choices. Portion size is important when guessing carbohydrates and calculating insulin dose. Dietician??? For the last 55 years, I’ve depended on my wife’s good judgement.
Look at the top of this page and you will find a “Resources” tab. There is some awesome material posted there - including an opportunity to request a mentor who matches your particular situation.
@Abdean I am eighteen and was diagnosed at fifteen. It was hard for me and hard for my family in the beginning. I cannot imagine trying to do this with a two-year-old. There is a lot of wisdom here already. So I won’t add much more. Simply put about restaurants, consider looking up the menu and nutrition facts on their website before you go. Planning what you want to eat at a restaurant can be helpful. I feel like kids’ menus are generally not set up super well when considering diabetes, but your son can eat anything as long as you treat. Now I would say that that comes within reason and your eating style. For me, being a teenager it comes a little easier to find those food choices at restaurants. I always ask for sauce on the side and choose options with more fruits and veggies. The biggest thing is that I always request them to bring me a box so I can put half or more (depending on how big the serving is) in a box to bring home. It helps me not to overeat. Some restaurants are kind enough to pack up half right out of the kitchen for you if you ask. Always something to consider speaking with your nutritionist about when you see them. I agree with what @ Dennis said
I am a mom of a newly diagnosed 2.5 year old. We haven’t gone out to eat yet BUT I’d suggest studying the menu beforehand or maybe avoiding it until you get the hang of it.
Our doc suggested the CalorieKing app for carb #'s
Right there with you in this process. Although I will say my son seems happier than he has in a long time and for that I’m grateful we know understand what we need to treat.
