Hi, I’m very new to this forum bit I’m glad I found it. My son has recently been diagnosed with type 1 diabetes, he is only 16months old. We found out when he went into DKA. It has been a rollercoaster ride since we got back back from the hospital. Everytime I feel like we have a routine something stops working. At first he was going high all the time. And now he tends to go low even during the day. He is on a sliding scale. He gets short acting and long acting insulin. I have a lot of questions, even though we have a great support that we found a pediatric endocrinologist but she seems very dismissive about my concerns, maybe because she goes through million patients and parents like me. But I’m new to this. I have no clue what this is. So I want to ask some of my questions here in hopes that someone would be able to answer.
How high is your blood sugar supposed to go after you eat like right after you eat? Now that we have dexcom it gives us numbers every minute and I see him go as high as 400 after a meal. But he does come down in 2,3 hours because of insulin. I want to know is this normal? Or his blood sugar is not supposed to spike this much even after eating?
He is not gaining weight even though he is eating and his appetite seems to have increased also. I know its too early since his diagnosis. But his weight has not changed even a pound in 3months. His pediatrician does not seem to have an answer. His endocrinologist like I said is a bit dismissive about my concerns. But I’m worried. Do diabetes have a struggle with weight gain? Mind you he also has celiac so he is on a Gluten free diet. Im trying to find a diabetic nutritionist who has experience in pediatrics but that in itself is going to be a struggle. Meanwhile im trying to do as much as I can.
How do I give him a normal life style? I used to take him out a lot before his diagnosis. But now I feel so overwhelmed just to even go for groceries mostly i’ll just do instacart in fear that if I go out or something happens or God forbid I forget his insulin or he goes low and I don’t have something to give him. Like million thoughts just for a small trip. Also Im taking care of him alone. So I try not to make things harder for me. But I want to connect to people in person where I can take him, share experiences. I want to go on events and learn more.
I would appreciate any advice or helpful tips.
Thanks.
Hello @Emaan great questions. So a little while after you start using insulin, a person with T1 often starts making their own insulin again. This is (unfortunately called “Honeymoon”). Honeymoon lasts a few weeks to a few months. During honeymoon, a young child will often need much less insulin, some need none, but you have to test often because honeymoon is TEMPORARY.
An adult, with a perfect dose, eating all medium fast carbs, will rise 60-80 mg/dl after a meal. If I eat fast carbs I can go 100 higher, if I eat a lot of fast carbs I can go 200+ higher. Kids can be different. If he’s coming down to about where he started before the meal the dose was perfect.
Gaining weight takes time. He’s not broken. If he has reasonable blood sugar control he will gain weight.
You give him a normal life by having a normal life. Sounds stupid. All I’m saying is that once you (and eventually him) learns how to use insulin you just live. Diabetes is a background function for me now. It never gets easier, but it does become a routine. I’ve done everything (mountain climbing, flying airplanes, college, girlfriends, work and marriage, have had kids of my own and more). I wanted to do so far. He will too. Nothing has changed in the life department.
Hi. @joe 's advice is excellent. One thing I would suggest is that if your endo is being dismissive of you, you might want to find a new one. Yes, it’s one me thing to add to your plate, but with a newly diagnosed child - particularly one so young, who cannot communicate well what is going on - it’s particularly important.
Trust your “mother instincts” if you think something is wrong. If he’s not on a CGM do a fingerstick to confirm what’s going on. If he is high after a meal it may be tempting to give him insulin, but do check with his doctor first: it may be the insulin had not had time enough to work, and if you add too much too soon (called stacking) it could send him low once it does kick in. I was diagnosed at age 3 and by the age of 5 I was able to tell my parents that I felt funny, even if I couldn’t verbalize exactly what I felt like, and didn’t tie it in to my blood sugar. In time your son will be able to do that, and even say “I’m low” but for now keep being vigilant. In time - particularly one the honeymoon period ends - you will become comfortable resuming activities. Check the Resources tab to see if there are local in-person support groups in your area. And ask your doctor if they could put you in touch with parents of going kids. You might be able to care for each other’s children once in a while, once you are more experienced - it can help to find a caregiver who is experienced with Type1.
Hello @Emaan, and please do feel free to ask as many questions as you wish. I’m still asking questions here after living with my diabetes for 65 years. Keep in mind that much of what you will see and hear , even from a very good professional diabetologist is what applies to the average person living with diabetes, so keep that in mind and also be aware that a very young child and still “new” like your son does not fall within “the average person with diabetes”,
What @Joe wrote is much of what I planned to write as I read your post, so I won’t repeat. I will add that my BG will sometimes shoot quite high following an intensive glycemic meal, but not into the 400s; some parents have told me this happens with young children probably because of their body size. The “good” part is that you said that your son returns to an acceptable point a few hours later. I I have learned, is just about everything with diabetes WILL change and we just need to accept and adjust.
It is good to know that your son is using a Dexcom CGM, but please don’t allow it to “govern” his OR YOUR life - use it as probably the best tool yet invented to help us live fully with diabetes - it provides us with guideposts for possible action we may need to take. Don’t be a slave to numbers, just use them. Go out, and bring him with you, but always try to have some fast-acting carbohydrate you for times his BGL may drop to much too quickly.
To connect with people who have a child with diabetes, and with people living with diabetes. I suggest that you click on the “EVENTS” tab at the top of this page, select “JDRF Near Me”, and enter your zip code. You will find a JDRF Chapter; look at the schedule and find an activity, or call the contact number and find more information. On Thursday this week, I will be at a monthly meeting that is mainly attended by parents/grandparents of young children with diabetes looking for suggestions.
I was diagnosed last year at age 66. My endo is patient and thorough every visit. That is immeasurable in feeling confident about my diabetes care.
I can’t imagine caring for a 16 month old with T1, but the first thing I’d do is find an endo you can depend on, lean on and trust.
This journey takes some time to gain confidence, but you’ll do great.
Thinking of you
The first year is always difficult! Hang in there!
Can only ditto what everyone else has said.
Definitely find an endo who will take the time to listen and help you- that’s their job! I’ve also heard that little kids especially can have pretty volatile bgs. Small bodies, growth, development, sickness, activity, sleep, etc all affect bgs.
Personally I have a hard time gaining weight but I’m not sure if that’s T1D related or if it’s just my body. I was severely underweight at diagnosis (I was 13) and afterwards I gained 30 lbs in 2 months but since then I’ve hardly gained anything. Some people gain more, some gain less. As long as your son is eating, has normal activity levels, sleeps well and is developing on schedule, then he should be fine. If you’re really concerned, you could check in with your pediatrician.
You could also talk to a nutritionalist. my BG rises more or less after every meal depending on what I ate. Talking to a nutritionalist may help you find different food options or choices that you could feed your son to help manage his BG a little better- and gain weight. My endo always says “not all carbs are created equal”- pizza will have a different impact on my blood sugar than pasta. The tricky part is finding out what the effects are and what to do about it. You also want to have a balance in meals- including carbs, veg, protein, and some fats will help keep BGs steady.
Do get out more! Even if it’s just a walk around the block. I assume you still carry a diaper bag with you- make a go kit with basic supplies that you can take with you everywhere. You could use a toiletry bag or a pocket in your bag. I’m still in school so I carry a backpack with me pretty much everywhere. The front pocket of my backpack has all my diabetes supplies- low snacks, testing kit, glucagon, insulin pens & needles, etc. everyday I make sure to refill my low supplies if needed. Since my supplies are always in that pocket and rarely get moved out, I know that everything is there and won’t forget it.
Everyone forgets something at some point- but you can pretty much always go home and get something. If your son is high and you forgot insulin, he won’t go into DKA immediately. You have time to drive home and retrieve the insulin. If he’s low and you forgot supplies you can run into a grocery store or cafe or to a vending machine or a friends house for some sugar.
There are plenty of diabetes blogs and websites that I really enjoy reading, especially soon after I was diagnosed. Every post taught me something or validating what I was feeling/going through. My favs are
beyondtype1.org and diatribe.org - organizations with tons of helpful posts and tips and stories, including some on parenting/caring for T1D kids
sixuntilme.com - Kerri writes about the daily ins and outs of living with T1D with a good dose of humor. Lots of funny stories and tips
