Extremely Overwhelmed!


(Julie) #1

My 10yo dd, was diagnosed in Feb. 2017. She was only on Levemir for about 2 months before being taken off completely for a year! Then April of this year was put back on Levemir and T1D has been a spiral ever since. Now we are on Levemir and Apidra, counting carbs etc. Thankfully, I have been counting carbs for myself for the past 6 months as I follow the Keto diet, so I am familiar. We are still so confused on snacks, as they want her to give insulin for everything however, they say they would prefer her snacks to be “free carbs” or under 11g of carbs so that she doesn’t have to give insulin and so it doesn’t interrupt her BS check at the next meal. It’s all just so confusing.
Her endo and dietician are now talking pumps and I am so overwhelmed. I want something user friendly enough that she would be comfortable enough to fiddle with it (with supervision of course) or her grandmother could use it. We are thinking the t:slim 2 with the Dexcom G6.
Any help or advice anyone can give would be great! I would really just love to chat with other people that have been through this. Her dad and grandparents are very supportive and trying to research too, but I think still in shock and a little denial. So we are all just trying to find out as much as we can!


(Dennis J. Dacey, PwD) #2

Hi Julie @EgerFamily - welcome to you and your family from TypeOneNation.
Living with and managing TypeOne is and can be an overwhelming experience for many people - probably all who have been “blessed” with this condition. You, your daughter has been through an interesting 17 months and still striving to grasp what insulin she needs. Did I read correctly that she did not take any insulin for eleven months?
Diabetes is a balancing act between food, activity and insulin - all three need to work together. She could be on the world’s “best” diet and that wouldn’t do much for her without the proper dosing and timing of insulin - and both food and insulin needs can be affected by activities. I’ve been learning - still learning how to balance these three elements for 60+ years and for many years I have found that there are very few foods that I can not eat and there have not been any activities I’ve needed to avoid; I’ve led a very active and productive life.
A key for me was learning carb counting in the 1970’s and knowing my insulin sensitivity rate for different times of the day - she will need to know these two factors no matter what method she uses to deliver insulin - multiple daily injections [MDI] or a pump; the advantage of a pump, any pump, is the elimination of background insulin and relying solely on rapid-acting insulin. Using a pump requires proper setting, and then knowing how to make adjustments, in basal rates; a body “at rest” needs basal insulin at different rates at various times during the day - my standard pump pattern has nine different basal rates and these rates change with the seasons; in warmer weather I need less insulin.
The Tandem t-Slim in conjunction with the DexCom G6 incorporating “Basal IQ” has grand potential - but keep in mind that it is NOT completely hands-off and you, your daughter and her grandmother will still need to master the three basics - Food, Activity, Insulin. And while learning, please check BGL [Body Glucose Level] frequently.
Good luck to you, and please don’t be shy about asking questions.


(Julie) #3

Yes you read that right! Absolutely no insulin from April 22 2017 until April 9 2018. A lot of the problem we are running into now is that I have followed a Keto diet in our house for over 6 months and we usually just fix extra side dishes for her. However, she was only getting around 30-40g of carbs at each meal max and her Endo wants her to have 50+ at each meal. Not sure if you are familiar with Keto but it’s high in good fats and protein so usually you are very full off the main course so pushing even more carbs on her is hard.
As for the pump I’m just overwhelmed with it all! She is very hesitant to have to take the cannula off every 3 days after taking a test one off today and then having to rotate sites since she will not allow us to stick her shots anywhere other than her abdomen. She says they hurt a lot. She is very lean and skinny which I think is part of the issue. No fat to pinch and stick lol!
I’m just trying to transition her the easiest way possible since she has been so great about all of this since the beginning but now everything is changing for her again!


(Dennis J. Dacey, PwD) #4

Thanks Julie for the clarification / additional information. Kind of unusual to be taken off insulin, even during “honeymoon”, but it appears your endo acted prudently. I’m not an expert about “low carb” diets as even as I tend to eat less in my latter years I continue to assume more than 200 grams of carb every day. What does concern me is the high fat - good or bad - in the Keto diet and insulin management. Fats tend to delay the absorption of the glucose / sugars by the body making meal-time dosing with Apidra more difficult. for instance even if you count a meal’s carbs correctly and accurately calculate the dose, she may go low after a meal because the fats had prevented the release of sugars from the food. This is a rather wordy and cumbersome sentence I wrote and maybe not “scientifically” worded but I hope you can understand.

As for having her start immediately on a pump - I’m not a strong advocate - I worked with injections for 47 years before I agreed to a pump in 2004. The principal reason I agreed to a pump was to reduce the 1,500 injections every year; the first pump I was offered around 1980 was worn as a backpack about the size of the three liter camelback I wear on long bike rides.
Cannulas can be rather short - right now I have a 6mm one in my arm. I can remember when it came time to remove a cannula, my then 7 year old granddaughter would just pull it out of me without hesitation; she said it was “payback” for the number of times I administered her antibiotic via IV.


(Julie) #5

I think her endo was shocked to take her completely off insulin too but she started on 5 units at the hospital and steadily had to come down because of constant dangerous lows. She was down to a 1/2 unit and was still getting extreme lows so they took her off and we just monitored. But then again this is the kid that she didn’t go to the ER with symptoms of DKA she showed signs of appendicitis and nothing further. No thirst no frequent urination nothing. Then they ran blood work checking her appendix and bam! Bs of 446. After she came off insulin her numbers stayed steady around 110-120 and a1c of 6. Then they started to go up around March.


(joe) #6

@EgerFamily once a person with T1 begins insulin therapy, it is common for them to start making their own insulin again. as @Dennis explained - it’s called “Honeymoon”

it doesn’t shock me one bit that she stopped having to inject insulin, the length of her “Honeymoon” is a little longer than I would have guessed… but “it is what it is”. I am sorry because, like it or not, “Honeymoon” gives everybody that false bit of magic thinking that diabetes went away, was a fluke, or that T1 is easy because my blood sugars are always in range - then the other 16,000 lb. shoe drops.

Please please work with the nutritionist… I am not saying that 50, 500, or 5000 grams of carbs is good or bad, because it’s neither. Lids use up tremendous if not unimaginable amounts of energy compared to a grown adult. Forcing her body to manage fat burn may or may not be a great thing. I am not a doctor, but the mechanic in me thinks that her fuel intake needs to cover her immediate requirement and the requirement for growth and development, whereas mine needs to be a bit under my immediate needs for me to not get huge around my belly.

Depending on her insulin sensitivity, a pump at 10 years old may be awesome or overkill. look at it this way: it’s just a programmable syringe. If her basal requirements are vast and different throughout the day, or if her mealtime insulin sensitivity is high… then the pump would be awesome. For myself, after 30 years of shots (of which I survived), my basal requirements and travel were the selling points.

Mixing fats with carbs is an art form as well as a science. Please consider getting the books “Think Like a Pancreas”, and “Pumping Insulin”

if you are already overwhelmed, my best advice is to keep it simple. at least for a little while longer. btw there are short cannula sets that might hurt less… might. I have pain too, sometimes.

cheers and good luck - please tell us how you are doing.


(Tyler) #7

Hi there! Just some little tips or pieces of advice that I’ve used or been through during the last 15years or so.

Just as said below, simple is better! Now I have recently began to get my sugars under control and it’s due to being consistent and aware of what I’m putting in my body, and how different foods affect my sugars. I do tend to have better blood sugars with lower amounts of carbs. For me personally, I try, if possible to eat as little as carbs per meal with high protein and fiber therefore not having to use as much (if any) insulin. (I use novolog for my fast acting and was on Lantus while growing up for my long release).

I used the Dexcom g5 for some time and loved it… my blood sugars were so much easier to control, it’s a great device (trying to get it back as I had to switch insurances due to work).

All will be okay, just takes time to figure it all out. Good luck!!!


(Julie) #8

I guess most of my stress from the carb issue comes from our diet at home. Abbie was put back on Levemir in March with no bolus insulin. As I stated before I have followed a Keto Lifestyle in my house for around 6-8 months where I ONLY have about 25-30g of carbs per DAY! Now of course I know that she needs way more than that so I was making sure she was receiving around 25-40g at each meal. It was extremely hard to get her to eat that much because she was SO full off the main Keto meal. Her growth is phenomenal growing like a weed actually! She has plenty of energy and her BS numbers were outstanding in the beginning. Then of course they started to creep up no matter what.
So her ENDO added Apidra and we started counting carbs. I was never told what to give her at each meal in the beginning (around the end of June). So I kept her at 25-40g at each meal, usually closer to 25-30 because she was full. Her numbers were amazing. BS maintained with the Levemir in the morning and Apidra around 120 -150 (150 being her target). So now that I have seen the ENDO and her new dietician they want her getting 50g. So I started giving her that over the past few days… they upped her Levemir slightly as well and changed her carb ratio down some. But her BS numbers are higher around 190-210.
Like I said I understand why she needs more carbs than me, however, for a T1D, to be giving them so many when I have seen what keeping her around a certain amount does for her BS, makes no sense. Wouldn’t it make more sense to keep her with what works and keeps her BS within target range than raising it to get her an additional 45g of carbs per day?


(Tracie) #9

My daughter was almost 5 when she was first diagnosed. My first reaction was to cut carbs, the doctors told me that she needs carbs for her body to use as fuel, and for brain development. So we didn’t cut them, we just count them. Not sure how many carbs a growing kid needs, but a nutritionalist should. As for the insulin. I was also told that they have no idea how long my daughter had been diabetic, it could have been months or years. It sounds like you caught your daughters early and that might be why she was able to stay off of insulin longer! My daughter had BG in the 800’s when she was diagonised and I felt like a bad mom. The nurses in the ER at Vanderbilt told me that was the lowest BG that she had seen of a newly diagnosed kid and she had been a nurse there for a while. Maybe she was just trying to make me feel better, or maybe not. But it sounds like you caught it early!!! That’s GREAT! For the first 3 years my daughter did not want a pump, so we did shots. She didn’t mind them. As she got older the Endo recommended the pump for easier control, less shots, and less hassle. She LOVES her pump now!!! Sometimes she will go off of if it in the summer, but not always. We just work with her doc to change her shots and so forth around during those times. She does have a T-Slim, and it’s easy!!! Her 83 year old grandmother can put her BG and carbs in if needed. You still have to count the carbs, but it’s super simple and her and I both would strongly recommend the T-Slim. Plus, all of her friends thought it looked like a cell phone, so they thought is was cool. :slight_smile: I know, small bonus points. :slight_smile: She has had it since second grade (she is now going into 5th). She also wears the Dexcom 5 - moving to the 6 next month. So I can’t tell you how the T-Slim and the Dex6 work together yet, but I’m hopeful. The best thing about the Dexcom is that she now has a cell (which she calls her iDevice) and the Dexcom sends her Bg to her cell and then the cloud, so my husband and I both have it on our cells as well as her school nurse. It give me piece of mind when she is away from me. I will say, as much as we LOVE the technology and ease of use, I am glad that we did spend some time learning how to do the shots, configure the dosages, and so forth, you never know when you might need it. Technology is GREAT when it works, but I am glad that I am still prepared just incase it doesn’t.

I am happy to answer any questions you might have about the T-Slim or Dexcom though. :slight_smile:


(Julie) #10

Hey Tracie -

Thanks for the reply! Sounds like our girls are about the same age and grade! Abbie is 10 as well and going into the 5th grade. Maybe they can become penpals? I am sure it would help Abbie to have someone to talk to besides her parents all the time, as I am sure her school friends just don’t understand. Do they do snail mail anymore… or may email? lol.


(Dennis J. Dacey, PwD) #11

Very well said Tracie @tblahblah.
I really enjoyed seeing your positive attitude and the encouragement you offered to Julie. And your “boost” to learning and perfecting the non-mechanical methods of diabetes management.
Yes, pumps, CGM and the closed-loop systems they support are wonderful but are not always available during power-outage and supply [recalled items] interruptions.


(Tracie) #12

That would be GREAT! I’m sure that my daughter would like it too!!!

My email is bly@comcast.net. Send me an email with your contact information and maybe we can do a FaceTime call with all of us for them to meet. Then they can take it from there! :slight_smile:


(Jennifer) #13

Hey there!!
First, congrats on being so strong mom. It’s hard when a child has something we can only manage from the outside! So, a little bit from me, my son was just diagnosed in March and it’s been really rough, he’s 2, and was in children’s for a while due to falling in a comma! With that, today he is on the pump and I will tell you from my experience, I am very happy!! After a rough couple of months he’s been on it for 2ish months now and it’s made things easier. He’s not high all the time anymore and I don’t need to inject him with the pens a bunch of times a day! I do still need to change out the infusion set and program food, but lately he’s been low enough (But not too low) to where I can even sometimes give him a meal without insulin. Depending on what it is also. I just wanted to share to you that the pump really helped me out!! And he’s happier. No pens, just finger pokes. I hope this helps you decide. It might be exactly what your girl needs! And I’ve also kept my fridge stocked with carb free or low carb snacks. Good luck mom. Look into it!


(tedquick) #14

OK, I understand what you said, but always question why diabetologists ALWAYS think higher carbs are necessary for anybody, ESPECIALLY any diabetic. Why is she supposed to need more carbs? Her nutritional needs re the same as any other persons, besides which more carbs equal moe insulin, which means more variations in blood glucose.
Another factor that s often ignored is that carb counting is based on a flawed system. The carb counts so prominently displayed on all food package in the USA don’t happen to mention that the standards allow a + or -10% variation in what the label tells you. So when you increase carbs you may well increase them 110% of what you thought, or 90%, or anywhere in between. So smaller numbers of carbs equals better control far any diabetic.
As you may know from your keto diet, the brain is said to burn only glucose, but in fact also burns ketones, a good secondary form of nutrition. Ketones are created by burning fats, whether eaten or from the person’s body. Proteins also can be converted to glucose when necessary, as when on a low carb diet.
So by eating more proteins and healthy fats with moderate carbs we don’t need as much insulin, nor can we create added highs and lows driven by unforseen differences in carbs consumed. I know this because my diabetes improved greatly when treating it for y seventh year, about 1962. My Endo gave me what was then considered a high protein diet, with reduced carbs. My control improved quite a bit, though medication changes at that time also helped. He started me taking 2 DBI (Phenformin, an older more dangerous form of Metformin) with 2 medium speed insulin shots per day in Globin insulin. It worked like a dream, and is likely why I have survived 62+ years of Type 1 diabetes with no major complications.
Anyway, most of the other Endos I worked with over the years (our family moved often) pushed me to eat more carbs because they believed as her’s does. When I did my control worsened, I gained unnecessary weight, and eventually went back to what I knew worked.
This was reinforced in the 90s when I read Dr. Richard K. Bernstein’s Diabetes Solution. He developed his own low carb method because he was suffering most of the complications of diabetes, and as an engineer he understood how to solve complex problems, so he approached it from that direction, rather than as a “treatment.”
He eats 30 grams of carb per day, always in cruciferous vegetables, and is now among the healthiest 80+ year old Type 1 diabetics in the world. He was diagnosed in 1942, so he has 1 years more experience than me. Look at: http://www.diabetes-book.com/


(Paula) #15

High Ms Tracie you don’t know me but I was just reading your post to Julie about your daughters I also have an 11 yr old daughter name Najee who’s been t1 for 2yrs and it’s a struggle trying to get her to understand how important it is to take her medicine. Can you please let met know how your daughter copes with doing this everyday thanks Paula


(Karmella) #16

Julie,
Hi, I read your post several days ago and you and your daughter have been on my mind since then.
My daughter was also diagnosed February of 2017 she is now 9. She has required very little insulin as we caught her condition very early. We know that on January 15th she did not have any signs of diabetes but on February 28th she was sent from the doctor to the hospital with a bs of over 700. We spent 4 days in the hospital 2 of those days teaching her that mommy could handle her care. She said I was not a nurse and was not going to give her injections. But we went home and we work together to care for her. We spent over a year giving injections of very small amounts and I was really just beginning to feel like I was handling her care well, when she decided that she wanted a pump. I was very nervous because this meant I needed to learn a whole new world. She has a couple of friends who have pumps and she saw that they could do their own care (with supervision) and she wanted that independence. She chose the tslim and I love it. So easy to use and it walks you through so much. We have only had the pump for just over a week but the change that I have seen in her attitude and her health has been wonderful. We spent a week on saline. So we had to do both the pump routine and the injections but it was worth it. She gained a lot of confidence in that week. We have been on insulin in the pump for 5 days and her sugars have been great. She had a high and low yesterday, my fault, I forgot to put the carbs from her correction into her pump. Yes it has been a learning experience but just like the last year has shown us… We will get it. I am a perfectionist and I tend to beat myself up when she has highs or lows thinking that I did something wrong. Sometimes I do and I have had to learn from my mistakes but I feel like I get better everyday. I must be because her A1C was 7 2 weeks ago. One thing that we do is we talk through everything. Like when I count carbs, I speak it out loud so she knows how I came to the number I got. I tell her what I think the insulin should be and then she puts her bs and carbs into her pump. The pump then tells her how much insulin it will deliver based on her numbers and she tells me if the number I came up with is close. I glance at her pump before she presses to deliver to make sure she entered everything correctly and then she presses to deliver. It works for us. My friends daughter has a tslim. She told me to always check to make sure she didn’t switch the numbers. (placed bs in the carbs, and carbs in the blood sugar) so I always check for that.
As for carb counting and how many your child needs. You are her mom and have been for 10 years. Her doc has only been her doc for a year and a half. I listen to the nutritionist and I listen to the doctor but ultimately I know my daughter and I know how she eats and how she responds to the things she eats. One thing I did learn is that they need insulin. It does more than we know in the body so cutting out carbs all together so they do not have to have insulin is not good for them. The problem I had was my daughter would choose not to eat, rather than have an injection. She was already tiny (35th percentile for weight) so not eating was not an option. She would also choose to eat only meat or cheese so she didn’t have to have an injection. We made a deal. At meals she had to have a minimum of a half unit of insulin, so with her insulin ratio she had to choose something that had a minimum of 15 carbs. The nutritionist and doc stopped complaining and she started to feel better.
I have a mentor from the JDRF program and I met my friend through JDRF whose daughter is now my daughters friend. Those two ladies have been such an asset in the last year and a half for me. I bounce a lot off of them and they listen and help me more than they will ever know. I don’t post much on this site but I do read it a lot and there are some very knowledgeable folks on here too.
I was right where you are and I get overwhelmed from time to time still but reaching out to others will help you a ton. Feel free to contact me if I can be of any help. Take care you got this!


(Jennifer) #17

So I was wondering if any parents on here have gotten their young children with type 1 on the sensor. My son is 2 with type 1, yes I agree with posts of how exhausting it is. I’m so glad this group is here! I rely on reading posts to get through sometimes!! Thank you everyone for opening up. Some days I just want to cry!. Back to my question. What are your thoughts on the sensor? Good thoughts and bad. Thank you!!


(Tripta) #18

I am so sorry to hear about your daughter. It is very overwhelming if you don’t have a support group . Where do you live ?
You can email me triptadhillon@ gmail.com and I will connect you with the community which is very important for your sanity.
I can’t say enough about T1d community support . Let me know I will guide you !
Hugs Triptadhillon