I’ll admit, I didn’t know anything about diabetes before she was diagnosed, and now it makes me wonder how ignorant I am to other health things that can come up. Not one of my family or my husbands known family has diabetes, therefore we have never looked into it. I am so overwhelmed with all it entails. I have the visit with my daughter’s health team in a few days and I’m wondering if there are any specific questions or things I should bring up to them? I have a list of questions from my own 4 week experience with this, but wow, there’s so much to each and every day. I didn’t realize, and feel so silly not knowing how hard it is for people.
Hi,
I am not a parent, but I was recently diagnosed and may have a few useful suggestions for you! To start, you should know that Type One diabetes is not genetic. The cause is unknown, so the fact that no one in your family has a history is not surprising (mine is the same). Here are some suggestions for your visit with her healthcare team:
-Review her numbers: Make sure you go over instances of highs and lows, and be prepared to discuss what was happening at those times. Based on your replies, the doctor may suggest changes to her basal rate, or adjust her insulin to carb ratio at different times of day
-Ask about your options: 4 weeks is still so early in the diagnosis, but you could ask about options to make management easier. For example, switching from injections to a pump, or getting a CGM (Dexcom) to keep track of her numbers
-Frequency of checks: Talk to the doctor about how often you’re testing her blood sugar. I found that early on in my diagnosis, I checked much more frequently, but gradually was able to reduce the number of tests/day. There may be key times, especially for a baby, when yo want to check
-Carb counting and eating: Learning how to count carbs was hard, and it took a while to get completely right. In my early doctor visits, I kept a food diary to record what I ate, and how many carbs were in each item of food. This really helped my doctor understand my numbers, and also helped me learn when I was overestimating or underestimating the carbs in food.
Generally, I’d also advise you not to be afraid to ask the doctor anything and everything that pops into your head. I remember feeling a little pressured in my first visits to ask the right questions, or not look dumb in front of the doctor; however, I learned that to get the most out of the visit, it’s best just to go for it. You don’t want to leave feeling like you still don’t understand something, and the doctor will best be able to help if you’re completely up front and honest.
I hope it goes well! 4 weeks is so early into everything. Don’t feel bad about not understanding something, or not getting the numbers quite right. It takes time to get a good management plan in place, and even then there can be days that just don’t go well for no reason. You’re already doing the right thing by getting her the treatment she needs. Keep us posted!
My son was diagnosed at 16 months (7 yr old now). The night checks can be really hard. I’m not going to lie. And we’ve been doing them for 6 years now. I alternate with my wife so we can try to get an uninterrupted nights sleep at least half the time. The new CGM technology can help with that. Medtronics has a night monitor (expensive) and research Night Scout with Dex G4.
My favorite diabetes saying is “It’s an art not a science”. When you think you’ve calculated everything perfect, the BS number will go a completely different direction. Just remember this, IT’S JUST A NUMBER. Correct or treat and keep going. You’ll learn patterns for when they get sick or dawn phenomena. But growing, hormones, eating patterns, what being eaten, all play a role. There’s no perfect formula. So don’t beat yourself up over crazy highs or lows. Just do the best you can.
Go read “Think like a Pancreas” (Gary Scheiner). Great book and an easy read. Read “Typecast” (Andrew Deutscher) for some feel good stuff.
That’s my 2 cents
I’m a parent of a T1 child. She was diagnosed at 9 months and is now a month older than your little one. I am by no means an expert - but if I can help in anyway please feel free to send me a message.
Also - I would strongly suggest an insulin pump and some form of CGM - we run an Omipod and Dexcom G4 w/share on my little girl and it makes a WORLD of difference for all of us.
My daughter will be two this month and she was diagnosed at 18 months. I felt the exact same way. What has been a lifesaver for us is the dexcom G5. It’s a continuos glucose monitoring system. We are going to look into a pump next but felt she was two young. However, qafter reading the last comment I think we may look a little sooner. It feels overwhelming at first with all of the things associated with her medication but you will get the hang of it. I pray things get manageable for you soon!
My Son now 10 dx’d at 8 and we use Dexcom G4 Platinum with Share technology. It is the most accurate and comfortable CGM on the market, get your endo to approve, which may take strong advocating with your insurance company. It is the best thing we ever did.
Some issues with the Dexcom can be the adhesive sticking on skin, we get average of 10 days from your “sensor” and have to put different tapes on it. Right now we are trying “RockTape” and KTape", most you can get at Amazon.com. Dexcom has a facebook group where you can ask questions of other Dexcom users, that is also best thing we ever did, learned a ton there.
It can be extremely overwhelming at first and hard to even remember your questions at dr office with a baby… write it down on paper. Also, get buy in with DNE/Endo to email - we do this, not a lot but more in the early days. DO NOT HESITATE TO CALL YOUR DR. CALL FOR EVERYTHING - there is NO STUPID QUESTION. PERIOD. If someone makes you feel like that ask for someone else.
Best of luck
“Share” means you can get blood glucose numbers on your ipone or ipad.
i don’t have a lot of advice here, as my child is not diabetic. However, I just want to reassure you that, in time, you will get this figured out and everything will be fine. It’s a lot to take on in the beginning. I was diagnosed at 18 months old. I’m now 32, living complication-free, and gave birth to my first baby boy last year. It may not seem like it now, but life will go on and your daughter will be fine. You got this!
Also, in my opinion, the first response above was the best one. Yes, Dexcoms and other CGMs are great, but it will take you time to get one out of your insurance and then adjust to using it. In the very short term, read that first response 