Matt, I’m not going to offer any suggestions, because you’ve already been flooded with information. But what I will do is assure you that your son can live a full and long life. I’ve lived with T1D for 46 years and have not missed out on much. Your son might like to read some of the stories I’ve written about living with T1D - https://alex-of-oz.com/
One advantage of letting insulin get to room temp is, you may get fewer air bubbles to remove while filling. You can get rid of them while it’s cold but it may take a little more effort.
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As a newby please don’t be overwhelmed with all the responses. Just know that carbohydrates are the enemy for any diabetic. Avoid as many of them as you can and fill in the vacancy with the other food groups and you will find equilibrium.
The numbers will come down and you will find control.
Tom Carli, T1, 23yrs, 77yrs. Old.
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My 12 year old was diagnosed in January and we understand the shock and the ‘lifelong’ as you mentioned. They did try to keep our daughters sugar on the higher end those first few weeks, once you have first endo appt you will be more at ease. Our endo ordered Dexcom shortly after diagnosis and this made things much easier. Our 6 month appt is approaching where we will be talking more about pump therapy. It will get easier although very hard to accept I know. Your child will surprise you and you will be amazed at their bravery. I still have many questions I ask this group and also the website and app Beyond Type One has great resources that we have given to friends and family… a BFF guide, etc. We have the glucagon nasal spray for emergencies- hoping never to have to use, and also never be without juice, fruit snacks or similar. We never leave the house without these items. It will be okay, and your child will thrive as it is obvious you are doing all you can to educate yourself.
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So we’ve been plugging along and so far so good I guess. His blood sugar level has dropped to within the normal range and things seem pretty stable. I guess that’s part of the Honeymoon period. ??
Today his levels were: before breakfast - 121, before lunch - 109, before dinner - 79, 9:00 PM 105, which is when he takes the 24 hour dose. We checked again when he actually went to bed, around 10:30 - 76. He was of course worried as am I that its a little low. His nighttime snack was 0 carb Jello and some cheese (<1g carbs). He drank about 4 ozs of fruit juice just as he went to bed. I’m not sure if that was the right thing to do.
The doc doesn’t seem too concerned with things going low, but when we called to check on his dosages based on his readings, his lows for the day were 115 and 120. I guess we should call the doctor.
I may have mentioned before that his diet wasn’t the greatest before all this happened so he definitely has to try new things.
Your numbers are sounding great especially since you’re still adjusting - good job!
By all means check in with your doctor. I just got on Dexcom with Basal IQ and my overnight numbers have been running steady just under our around 100 overall - but I do start a bit higher to allow a cushion for a drop, which works for me. They key is how he does overnight - if he remains stable over the hours - which is hard to tell without multiple fingersticks or a Freestyle Libre if you do not yet have a Dexcom or Medtronic CGM. Definitely discuss with your doctor - since he may be honeymooning and making some insulin on his own it might be good to be a bit higher at bedtime even doctor is okay with a bedtime reading of 79. Remember, you have the right and responsibility to advocate for your son, and if that number makes you uncomfortable - does not allow much room for error and you don’t have CGM alerts - you can discuss your concerns as you “negotiate” a higher one. I need to stop right here and say I’m not criticizing you - in fact you’re learning “hey, this is something we need to look into” - and you knew to have something before turning in.
I too definitely would have a bedtime snack. Juices week raise blood sugar but won’t “stick with you” - my nutritionist recommended yogurt as a good choice that would last. His nutritionist can offer additional suggestions.
Keep up the good work! When do you see the doctor?
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Thank you Dorie! Ah, yes a yogurt may have been better. My thought (fear) is that low level at night will be brought down further by the basal dose.
I believe we have an appointment with nurse tomorrow so I’ll bring up concerns then.
I know we have a lot to work on with diet, but he is sticking to the 60-75g of carbs per meal. The basics are that plus he usually has either a free to 10g snack in between meals. So about an hour and a half to two hours after dinner he has a snack, takes basal at 9 then, since summer, goes to bed between 10 to 10:30. Would another snack be advisable at this time (question for nurse or doctor, but feel free to give opinion)? I’l also ask at what level we might or should say have that later night snack.
I shall defer to your medical team for specifics about snacks. As with many or most “things diabetes” it depends on “if/then” scenarios - but I commend on your questions. You may not realize it but since diagnosis day you have gone from, not knowing what you don’t know - which means not knowing what to ask - to formulating questions based on your experience and observations. I’m excited for you about your upcoming visit, but not nearly as much as you are. Take plenty of notes!
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@mawa316 I can sympathize with you and I will definitely keep you all in my thoughts and prayers. I’m sorry I can’t offer any advice cause my daughter that’s 9 was just diagnosed on 6-8-20 
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Just keep following this thread and others in this forum as there are quick, great answers to questions and also comfort.
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Like I said before, the thing that scares me is getting closer to the lower ends of the normal range. I checked him when I want to bed and he was up to 81. He woke up at 102 this morning so the night was good.
To top it all off, I started reading Think Like a Pancreas and after reading all of the other ailments that could come out of this… well, it was a little unsettling. Good blood glucose level maintenance helps to avoid all the other conditions, but what does that actually mean? What is good maintenance? If you’re close to 80-120, maybe a little high or a little low at times? Could one be all over the place in that range and still be considered good level maintenance?
Don’t want to loose my trend of thought on the range maintenance question, but here is something else that came up while in the hospital.
We live in PA and have Capital Blue. At the hospital some were mentioning the potential need for a medical supplier? We are trying to find out what specifically would need to be obtained from such a supplier instead of through pharmacy coverage. It’s really unbelievable that we can’t get a straight answer on this. We have contacted the insurance several times and we either get boiler plate information or get jockeyed back and forth between departments.
We were also supposed to get a list of suppliers from the insurance co. as well, but we’re still waiting.
If anyone has some experience with this, as I assume many if not all do, info here would be appreciated as well.
Your doctor will give you a range of “good” for your son. Since he’s new and may still be making some insulin on his own - perhaps sporadically - the numbers may be higher than you may have seen in the book, or have read from others on this forum, who are adults. Bottom line: use what you read as a guide, and perhaps ideas for discussion, but take your doctor’s guidance and give feedback “Doc, you said his low should be around ## but he always starts to feel -----.”
Diabetes can lead to complications but that does not mean it necessarily will. And something does occur, there are ways to treat if not reverse them that did not exist many years ago.
For my diabetes supplies - durable medical equipment such as my pump and CGM, I’ve used Edgepark for years. They work with many different insurances, and when I’ve changed plans I have not had to switch. I get my insulin at my local CVS pharmacy but used to get it and my other meds via their Caremark mail order service.
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Matt @mawa316, a “supplier” is a third party distributor. The supplier steps in, at the request of either an insurance company or the manufacturer/first party distributor of medical devices or medicines in cases that a contract does not exist. For instance, if you choose DexCom, and Capital Blue does not have a relationship with DexCom, a third party would be used to bring a CGM to your son. DexCom and United Health do not have a contract, so I get my CGM from Byram, a very efficient ordering & delivery company.
Let me strongly suggest, that when you decide what your son will need and use, contact the manufacturer, i.e., DexCom, and let the manufacturer’s representative do ALL the leg-work for you. This makes everything less complicated for you - the professionals of the Manufacturers [in my case, both DexCom and then Tandem] did all the arranging for me and held my hand.
I could not agree more. I have occasional spent time on the phone with suppliers and my insurance trying to figure things out. It’s much more efficient for them to hash things out between them - they speak the same language as it were, so you can spend your time on the home front.
@mawa316, I agree with @Jason1. He needs a pump & CGM. The Tandem t:Slim with Control-IQ software and a Dexcom G6 CGM are the best on the market today. Medtronic is just releasing a new pump & CGM. It lacks the time test of Tandem & Dexcom.
@wadawabbit, @Dennis, & @joe have shared are sound and very well time tested as they are part of the old guard. Wishing the best for you.
Remember, there are no bad questions. This group is here for us to share. Keep us posted with how things are going. Share both the ups and downs. We will all learn together.
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So our first low reading, 64, just before lunch. We went with the rule of 15s, once level in normal range, we’ll do the regular lunch routine. I hope that’s the way to go. Problem is, he says he feels great.
We have an appointment with nurse today so we’ll cover all of this. We have another visit with the nurse next week before seeing the doctor. I don’t know if that’s the norm or not, but would rather see doc. Might google for best pediatric endocrinologist in my area.
During the hospital stay, nurses and doctors were great, but since discharge, getting answers, contacting people, etc has been a little frustrating.
Feeling low is a kind of a weird thing. It’s also quite a bit like anxiety. Maybe your son didn’t notice. Maybe he had some symptoms but didn’t recognize them. 64 isn’t that low and could have signaled an actual blood sugar of 70 (for example, meter error) so its entirely possible he didn’t actually feel low.
You did exactly the right thing. As you get more used to insulin, for example when I am a bit low at mealtime, I eat and correct by lowering my meal insulin instead of taking carbs and waiting. Now I know a whole lot about how I react to insulin so I am not afraid to take meal insulin when I am low but you should avoid doing that for at least a little while.
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Calorie King has a great free phone app for carb/calorie counting. It provides generic info, as well as fast food and restaurant carb info. As with most apps, you can pay for an upgrade
version. But, I wouldn’t. The basic version has been more than adequate for me.
Remember, you’re not alone. Millions of us fight the fight everyday. All the best to you!
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My daughter was diagnosed in Jan. Once we saw the outpatient endo team for the first time we were so much more comfortable. They will help you! They will help you navigate your suppliers and pharmacy and what goes through what avenue. They will also guide you on snacks and what level to be at at bedtime. My daughter ran in the 80s at bedtime early on, now she is around 100’s. Sounds like you have a good handle on it. My gal was a grazer/snacker and we thought she would never be able to have that freedom again, after the third endo visit we learned how to dose for snacks, etc, yes it often requires a shot but… early on though, she drank alot of premier protein shakes(5carbs), ham, cheese, cucumbers. Also, as far as dr visits, we see endo every 3 months, and the physician and PA alternate the visits. We are close to 6 mth timeframe and will be talking about the tslim, we have had Dexcom since shortly after diagnosis.
Hope that helps in some way!
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