Hello everyone! My son, Aaron, 9 yr. old (will be 10 this week) was diagnosed as T1D on June 03, 2019! He was in DKA when we took him into the Urgent Care and from there we were sent to be admitted into the Children’s Hospital downtown Kansas City. He was treated, diagnosed, and released all in 24 hours! To say that it has been hard is an understatement! Our entire world has been flipped upside down!
We have been educated by his Endo team, but I am still seeming to have constant battles everyday keeping him in Target 70-150. They told me since he is very new to his diagnosis to expect more on the side of 150 BG readings as a Target for the first while. We have made multiple dosage adjustments to his Humalog and Basaglar insulin’s but it seems, more often than not he is ALWAYS high in the late afternoon and night hours!
With that being said, we have looked into other options to help us manage his diabetes and have been approved for the Dexcom G6 and Omnipod Dash! I am very excited about this bc the injections have been a battle! He is on the Autism Spectrum, has ADHD and Sensory Processing Disorder, so he is a very unpredictable eater! With that, the doctor gave us permission to inject immediately after eating! But I am so confused on what to expect with giving insulin afterwards! What is an acceptable time limit for him to have high BG? I have gotten so many different answers from the nurses, and everyone at his Endocrinologist’s office! They have advised that he will have higher BG readings for a couple hours afterwards! What I am confused about it the correction times! I have voiced my concern about it to his doc and team but still am so uncertain and anxious about giving corrections too soon!
We are hopeful that once he gets the Dexcom and Omnipod placed this week that it can help us learn more about his diagnosis and how to better treat it! Any help would be great! I also think he is not lasting the full 24 hours on his Basal dosage! It doesn’t matter the amount we give, we have tried many different units, it never fails he automatically starts to spike around 9 pm. This is even if he has had a good in range day! Also, any help with applying the Dexcom would be appreciated! We have a nurse who will help with the pump but we were told the CGM is pretty simple but I am so scared! How does it feel as it is inserted? Does it cause them pain anymore or less than the injection or finger sticks? Thanks! I know I have left a lot out! If you have any questions please ask!
I wanted to add, he is very high functioning on the spectrum! He is super smart but communication on his feelings is sometimes hard for him! He has had a very hard time emotionally with this diagnosis! It has affected his sleep, and since coming out of the hospital he has had so much issue sleeping. So, most nights he is up past midnight bf he can fall asleep! This of course, messes up his routine for eating during the day bc he sleeps in later! And I wanted to make a correction! He does have ADHD! Not sure how to edit yet! This is my first post!
I’m sure you’ve had your share of sleepless nights as well. You’re going to get some amazing advice from the members here, who are parents of diabetic children just like you.
Welcome to our community
Not qualified to answer your questions except for the “edit”. To edit your post, go to your post go to the bottom of your post where it says Reply. Hover over the icons and they will tell you what they do. The second icon from the left will re-open your post for edit.
Thanks you guys! Yes, sleep is not very often for me nowadays! And when I do sleep, it’s never for more than a couple hours, as I am waking up worried he will have a low or be high with ketones! It is hard! This has blindsided us! No one in our family has ever had this type of diabetes and especially, not any children! I was told by his Endo that since it does not run in our family that it was likely caused by a virus? Does anyone else have a similar situation here?
I think with an autistic child you might have to have higher numbers than usual, just because you can’t count of what he’s going to eat. Plus with any child you have a tendency to have higher numbers because you are more careful about getting any hypos as they can be more dangerous if a child doesn’t notice or speak up in time. .
You will love the Dexcom and there are patches called Grif Grips that help keep the Dexcom on and they come in cute shapes for kids. You will be able to read his numbers 24/7 and know if he is headed down or up. You will love it.
I am not familiar with the Omnipod Dash, I just have a regular Omnipod, but you can program different basal rates for night and day, most of us have a different basal rates throughout the day. That will help with some of the higher numbers if the basal isn’t lasting. But it could also be not enough bolus with his lunch meal.
PS The Dexcom has alarms so you can sleep better! Set it with plenty of warning leeway so you can get out of bed and take care of it. But you also don’t want it going off when not necessary!
Thanks for the advice, I have been in contact with a few other Moms of T1s and they have all told me the same thing with the Dexcom and the pump, they said it it literally a game changer! I am just anxious about the switch I guess! We are just getting adjusted to the injections but not really so it can’t be any worse than it is now!
His doc said just to try to stay in range 50% of the time and he will be just fine! However, there are some days where he seems to be having higher numbers and I mean, mid 200s, sometimes 300’s for up to 3-4 hours after he eats! And then the night time highs start up! I am so cautious to give him his rapid acting late at night bc I am scared of a hypo bc he has not yet started to recognize the symptoms! I have begun to be able to tell when he is high by his actions but he gets shakey and has symptoms of lows when he is in range lower 100s! So, the doc said that was to be expected too, as he is used to being higher before diagnosed!
His Carb Ratio is 1:9 Breakfast and Lunch and 1:10 dinner! His insulin sensitivity factor is 75-100 I have been told to use 100 for now to be safe! And his Basaglar dose is 14 units now! He started at 16 upon leaving the hospital but was having many loss during the night so we got all the way down to 10 units a day then he started going high much more often so we are going back up. This is all per the docs instructions of course! I guess we have not found that magic number yet! This is what I am worried about with the Omnipod bc I have been told the Basal rate is much more effective with the pump so I am worried about lows of course!
So I have a different basal rates set for different times of the day. Morning for me is quite a lot different than afternoon or the evening. At first your basal and you bolus needs will usually go down because it is more effective at giving you what you need when you need it.
They usually will take your basal rate now and divide it evenly throughout the 24 hours as a start and you make adjustments as needed. It’s nice to do basal testing which can be done in 5 hour fasting time slots, but I’m not sure if that is feasible for you.
At the beginning his rates were probably varying because when you are first diagnosed you are in a honeymoon phase which means you are making insulin until you’re not. In an adult this can last a while but in a child it is usually just a week or a few weeks. But that is one reason it would have fluctuated at the beginning and hopefully then levels out.
Yes, that is what I was thinking, I have read a lot about the Honeymoon phase and I think it may have ended! Who knows! The doc says for someone his age it can vary between weeks to months and sometimes years! But I would think he would not be having such issues if he were still in it! Thanks for the reply!
Unfortunately, diabetes affects everything, and everything affects diabetes. I wouldn’t worry too much about fine tuning right now. Stress plays a huge factor in blood glucose levels. I think your Doctor is giving sound advice. Finding the right basal rates does take time. You’re doing great, keep asking questions both to your doctor and this community.
All the new technology in diabetes care will make your son’s quality of life so much better and give you peace of mind that you will be alerted if anything is happening with his BG, no matter where you are. The Dexcom share feature is worth it’s weight in gold as far as I’m concerned.
I was diagnosed as a T1 as a 57 year old adult so I don’t have much to add about problems specific to children but I want to reassure you that it takes time to dial everything in and even when you do there will just be days when nothing works. That’s meant to give comfort. It’s not like every bad number is someone’s fault.
We have many members here who were diagnosed 40-50 years ago when there weren’t even blood glucose meters and everyone used insulins that are very much inferior to what we have available today. Most of the old timers had very bad control for years based on current standards. They survived and your son will survive this break in period. A few hours over 300 aren’t good but bodies - especially young bodies- heal. Things will get easier with the Dex and Omni Dash and at some point both you and your son will find that managing diabetes is a hassle but not all that much more than that.
Welcome to life with type 1 diabetes. I was diagnosed at 8 in 1959. We didn’t have anyone in the family with diabetes, so I am thinking that it was most likely caused by a virus. I almost died before finally being diagnosed. I only had urine testing available until I was 30. I absolutely hated the shots and even though it was only once a day, I remember dreading the shot for months at first.
Here I am 60 yrs later and I am well and happy. I just want to assure you that life will get better and you will all eventually adjust to your new lives. It is just very hard for awhile.I am sorry that your son has other challenges on top of diabetes. My son had several diagnoses, so I can relate.
I still just do multiple shots and no pump so I can’t help you there.
@T1DMom The range of emotions your family is experiencing are completely normal. I can still remember 55 years ago when I was diagnosed, my mom was an RN and she and my dad were still freaked out. Mind you T1D stuff was prehistoric then.
Aaron will be fine. I’d chose to believe that his Autism Spectrum, ADHD and Sensory Processing Disorder will in fact be a benefit as he likely will be pedantic with his BG control as he grows up.
All of us here have unexplained highs and lows, it’s part of the disease. Don’t lose a lot of sleep over unexplained highs or lows - it’s part of the tightrope-walking all T1Ds take on when they’re diagnosed.
This is a fabulous forum to gain a lifetime of T1 info from. Far better than asking your regular doctor or Endocrinologist(s).
The only silly questions are those not asked
Thanks to everyone, for all the reassurance you have given me! I feel much better now that I have heard from several of you who have a wealth of diabetes experience. My next question, since I am going to try to not to focus so much on the dosages right now, and trust we will get him adjusted sooner or later, is about the Dexcom G6. He is a kid, so when I am setting everything up, I will most times be the one who will be looking at the app or device. But I was told, the account has to be with the user, say like when he is at school, I would have to use the Dexcom follow app? So, this leaves me confused on what or who’s device do I download the app and start the setup process? Any advice? Hope this makes sense!
@T1DMom You will have to use the follow app on your phone, the Dexcom G6 app on his. The follow app does not allow changes to settings or alert clearing whatsoever.
Welcome to TUD, @T1DMom, lots of great information here and lots of people eager to help, including parents as well as patients.
The Discourse system we use for the Forum works on a trust-level. Once you’ve posted a few times it will start allowing you to edit your posts.
You’re a hero, reaching out, researching what’s best for your son. It sounds like you’re getting hundreds of bits of advice, so I’ll add just one: I would not consider 70 an acceptable BG right now. Talk with your doctor; for me, in these circumstances, I would not want to be under 100. He’ll still go low now and then, but you’re a better place to catch it before it’s serious. Decrease your stress however you can. I wish you and your family the very best.