My 8 year old daughter was just diagnosed last week after being rushed to the ER with DKA (just the first new term we had to learn on the journey). She was diagnosed with T1D and released a couple days ago. She’s had the best attitude so far especially with her parents learning to check her levels, giving injections, and calculating out the proper insulin dose. We’ve tried to make sure we have as many free foods and lower carb foods that we can find to make sure we give her options so that she doesn’t feel like this is a punishment. I know that she’s going to get down at some point, which is a totally normal emotion to have as we adjust. My wife and I are having a harder time because we can’t fix it, we feel horrible having to poke her, and feel like we’re drinking out of a fire hose learning.
We have our first appointment with an endocrinologist this week. We’ve been a little concerned that her blood glucose levels have been anywhere from 200-350 mg/dL before meal time. We’re dosing as prescribed by the hospital and are worried this may cause issues. I’d appreciate any experiences and advice on coping with a newly diagnosed child and on managing glucose levels to start.
That may have been a bit lengthy, but it feels good to get it out and see in the forums that we’re not alone.
Manuel @mitsanchez, sorry to hear about your daughter and can almost relate yo what you and your wife are experiencing - Welcome to TypeOneNation - we are here to give you a shoulder to lean on and offer support from our experiences living with diabetes; I’m in my 62nd year living with diabetes. Being supportive of your daughter and each-other is really important and keeping a positive attitude when your daughter is around is important. Come here when you want to rant and express frustration - some real good listeners here.
Your endocrinologist and maybe a nurse educator will work with you / your daughter and establish correct insulin dosing. Insulin dosing - exact number of units - will not be set in stone and will change many, many times. You have probably been told that good/appropriate diabetes management is a balancing act based on activity, food and insulin - that is the starting point and then there are many other factors that will affect her BGL [Body Glucose Level]. Do keep written notes to bring with you to the endo, including your daughter’s emotions, activities, school schedule, favorite foods , time she ate compared with time of her BG Check and the readings.
Although T1D can never be “controlled”, it can be very well managed and your daughter will be able to lead a full, active, happy and productive life. When with her, lean conversations more to “you CAN do” rather than what she can’t or shouldn’t do - I haven’t let diabetes keep me from doing and it will not restrict your daughter either.
Keep in touch - keep asking questions and let us know how your daughter is progressing. As she gets her feel on the ground, she may benefit from chatting with other young folks with diabetes - tips for success that are not in the books.
@Dennis, thank you for your response. It’s been nerve wracking especially after being discharged from the hospital without resources to contact. I know that she can have a productive life and learn to manage this, but i still have so much worry and anxiety. Perhaps when we meet with her endo, it will help calm my nerves to have a plan of action.
Today with her seeing her younger siblings going to school, which she can’t yet without endo’s orders, I think it made her feel different. It was the first down day. She was searching for snacks and getting frustrated that she didn’t have the freedom she had in the past. When we decided to go out to dinner and give her a treat, the nerves of being the first time out with her kicked in…wondering if the nutrition facts were correct and giving her an injection in public.
I’ve seen so much do’s and don’ts that vary from person to person that it’s overwhelming to know what the right thing to do. Check her at night? What are good snacks she can have without having to cover with glucose?
I definitely wish there was a simple cookie cutter answer. After seeing so many posts, I know I’m not alone. Those that have lived with it, like you, and others just starting their journeys. Thanks for letting me get it out.
So sorry about your daughter. I know you must feel a little trapped and scared. My encouragement is that she was diagnosed a a really good time. Medical advancements and technology with our condition have really improved. She WILL be able to live a long and productive, fulfilling life. This will become a way of life for her. Hopefully, she will embrace it, and learn to control it instead of letting it control her. There are some outstanding social networks out there, like this one, that can help answer questions and reinforce that you are not alone. I would suggest Youtube’s Michelle Lord, Diabetic Danica who are both great (they ae in their 20’s). Laina Elyse is a much younger teenager who is normal, bright, and out to conquer the world as she lives with T1D. So, be optimistic, become a T1D student, understand there are going to be a lot of highs and lows (Pun intended), and everything can be alright. By the way… these are not just words. I was diagnosed at age 9 when medicine and T1D care was archaic. It has improved 100X since then… and still, I am 55 and living with relatively no long-term complications. Good Luck!
If I could make a suggestion?
Teach her to poke herself.
Im a lot older than your daughter (55) and when I first got diagnosed, my family each wanted to take turns giving dad a poke. I figured it was probably a good idea just in case of emergencies… I mean, seriously, it couldn’t be worse than eating all that undercooked and overcooked cakes and cookies thruout the years. Boy was I wrong.
Watching someone else come at you with a needle is a bazillion times worse that doing it yourself. A BAZILLION!!!
MY daughter was too gentle so she went too slow. My son was too rough and wanted to make sure it was all the way in. My wife had shaky hands and it felt like she was tapping out morse code.
Doing it yourself is easy. You learn really quick how to do it without trauma or dread. You can go at your own comfortable pace and honestly, it was a piece of cake after the first time.
Hey. Andrew and Dennis, we seem to gravitate toward the same posts. I don’t know if what I say is helpful, but…
My best friend’s kids (4, 7 and 11) are always curious. When they know it’s time to eat, they chant “Do blood, Do blood, Do blood!” So I will check my BG in front of them and tell them if it’s high, low or ok. And I will then explain what I might need to do. It seems to calm them. They seem to understand that T1 it is something that can be managed. They know it’s not a game, but they understand that it’s something we T1’s need to do. I understand that your daughter is only 8 years old, but give her as much control as you think appropriate. She won’t get it perfect, but she will learn to feel more confident. Give her space, but keep a (very, very) close eye. There is a big learning curve. You’ll get there. Peace.
LMAO! I wake up with one of the dogs in my face. I think he’s trying to rip my throat out, but then he reconsiders (I don’t have opposable thumbs, who’ll dish out the food and open the back door?). Get some rest…if possible.
Manuel, it’s going to be ok. Just keep doing what you can. 200’s and 300’s are ok for now. Plenty of fluids. Keep checking the BGs and the ketones. And NEVER be afraid to call the the ER and tell them that you need ADVICE. That’s what they are supposed to do. DEMAND to speak to the Pediatrician. It’s their job. (I can say this, I’m an MD. It was my job!). For right now, consider checking the BG in the middle of the night (you’ll feel better). I ran Diabetic Camp a long time ago (Before I was T1. Oh, the irony.)
Thank you! We’re finally meeting with our endo today and I’m feeling a little less anxious. There are so many firsts and unknowns, but I’m starting to get a grip of that. I’m really encouraged by the technology that may help manage her BGL and what other advances may come. I’m also realizing that it’s not an exact science (which is hard to digest since I’m an engineer) and that so long as we’re monitoring her, she’s going to be ok. On occasion, the anxiety still gets me, but I’m working through it.
@AJZimmerman, thanks for the suggestion about having her work towards doing it herself. I’ve started talking to her about it and I think she’ll try it for the first time soon.
Again, thank you so much for the encouragement. I’ve felt a bit like a ship without a rudder, but the words and learning from others is helping.
Hi there, I am sorry that your daughter has been diagnosed with T1D but as stated by others it can be managed. I work with T1D on school campus. Please contact your Director of student services person and demand a 504 for your daughter. You will need a Doctors orders to state she needs an aide to be with her all day at school. We are the Cadillac district in our town, we cater to diabetics. We manage, based on MD orders and parental requests, all day to monitor for highs and lows. I have a strict protocol for times and such for treating our kids so they’re able to be as NORMAL as possible. Diabetes supplies should ALWAYS be with the student and backup in her classroom. I have been doing this for over 4 yrs and it’s such a relief to have your child monitored every minute of every school day. I am happy to help in any way I can. My email isneeceegirl1965@yahoo.com
I can email any forms and step by steps for you to use as a guideline for her care at school. I will be here so don’t hesitate to email me and please please please get her MD to state she needs a full time Health Tech for 1 on 1 care. The district will grant a 504 and you can relax a bit knowing she’s safe at school.
Take care
Thanks for the advice. We started talking to the elementary about getting the 504 started and talked with the school nurse about what she needed. We found out that there is one other student that is T1D in the school. Unfortunately, she’s afraid that she’ll be made fun of or of how the nurse will be when giving injections and doesn’t want to go back to school.
@sgwilson - The meeting with the endo was good in that we finally have a number or person to call for questions. A majority of the time was spent with the Dietician/Educator going over answering questions and what to do in cases of illness or hypoglycemia. They also stressed with my daughter that she still could eat anything she wanted, but would just need to account for it with insulin. I’m not sure it helped because it’s just made her more frustrated to not have the freedom of the past. They also explained how she needed to move around the injection sites and why because she’s only had them in her arm. That also seemed to make her dig in more because we tried to do her Lantus tonight in her leg and she fought us (first time she has done this). I don’t think it was any worse in her leg, but she was so angry.
I can’t wake to look into a CGM and possibly an insulin pump so that she has a little more freedom and fewer pokes, but even when discussing this with her, she’s afraid of the unknown. 2 of the last 3 days we’ve seen her start having a negative attitude as the reality sets in. I’m not sure what all to do other than to continue to drive home that she’s no different than anyone else, except that she needs to get her insulin from outside her body and that we’ll work through this together.
I’m thinking back to my experience dealing with kids at Diabetic Camp in Kerville, TX. This was 30 yrs ago and before I had T1 myself, but I think it’s still helpful.
Give limited choices:
She can pick a NEW site. She can be mad for maybe 10 minutes, but after that, it’s a done deal. No arguing.
Food multiple choice: I will assume the family is eating a balanced meal; a protein, vegetable and carb, her choice on one or two things, but after the choice, no back and forth. Done, no arguing. Snack choice: a. b or c.
Her life has changed. Your life has changed. She has freedom, but not UNLIMITED freedom. She’s 8 and will put up a fight. Multiple choice: a, b, or c. Then move on. It was always tough to make a stand with the young ones, but in the long run SHE makes a choice (empowerment), but YOU don’t give in to manipulation. Hope this helps.
I even have to do this with myself sometimes. Exercise: a, b or c. Food: a, b or c. But in the end, it’s choose and move on. Best of luck.
Manuel,
I understand her hesitation about other kids, I deal with that daily however, we do NOT tolerate bullying of any kind and educating the other kids is very important too. There’s a book about a boy with diabetes at school and I highly suggest you or the teacher read this and answer questions. Be sure to involve your daughter it will help her. Also the nurses office is a totally acceptable place to do diabetes care except in urgencies of high or lows. I wish I was near you to help you they this because I deal with it daily as it’s my job to care for the T1D students. My advice is to keep doing what you are doing. Reassuring her and keeping a positive attitude. Remember you and your wife will need a “break” from managing and should definitely find a trusted family member or friend to take care of her once she’s settled in a few months. Take an evening for your marriage ITS PERFECTLY OK! I actually do care for my students outside of school so the parents can have a break. It’s the least I can do for them. After all you parents are unable to escape this affliction too.
I’m sending all my best to you and your family.
Hi. I have two children who have type 1. The first was diagnosed in high school and my youngest was diagnosed at 11. Worst time of my life as they were diagnosed 8 months apart. Know one thing: ”it does get easier!” Both of my kids were open about their “situation”at school, at restaurants- anywhere we went. They felt the freedom to check their blood sugar at school and if necessary take in a snack if they were trending low even give themselves shots in the classroom. (My eldest started out w/ syringes now both use pens) I made up their 504 plans to include they be able to carry their supplies and use any and all tools they require as deemed necessary IN THE CLASSROOM. Or if they felt necessary be excused to use the restroom or nurse. My youngest was able to send me her blood glucose #’s via text any time- I regularly reminded her throughout the day when she forgot: (#’s?!). My kids really ate what they wanted, when they wanted, and still do- just have to cover the carbs w/ an injection. In our life diabetes has made us ALL eat better. We all watch our carbs now. I compare it to being on a diet, we HAVE to watch what we eat for our health. We all should, so now we do. One last thing- both my kids have CGM’s. Has been a GODSEND for me personally. I can check blood sugar levels at any time my phone and get alerts when trending down or up, its been so helpful!!
Sorry for being so long-winded
Hope I was helpful
VDenerson
Manuel, too bad your daughter had to join the club nobody wants to join.Just keep learning, you’ll find it pretty much second nature in 6 months or so (maybe less).
I know a bit about Type 1 Diabetes, aka T1D, since I was diagnosed over 62 years ago (1956) when even the hospital didn’t know what to tell us to do. I think the key is that Mom sat down with me one day and told me I MUST keep 1 thing in mind. EVERYBODY has a problem, be it headaches, trouble with other people, etc, etc, but YOURS is diabetes. Deal with it and all will be well.
Anyway, I’m in very good health despite my experience, with no noticeable complications.I’m sure she can do the same, if they don’t cure us all first. Some things come to mind for you to consider. Our diets MAY contain almost any food, but are best for us if carbs, including sugar, are reduced to some extent. Of course your growing daughter will likely need more carbs than I do in my retirement based on higher activity levels and growth, but carbs drives blood glucose (bg levels up too fast, then drop them later, which makes steady readings hard to find. Eating more vegetables, meat and fats will help her keep stable so she can live well.
We always found it simplest to keep the whole household on my diet, with a few additions, so that I wouldn’t feel left out, or have much of the wrong foods begging to be eaten. You’ll probably have a healthier family as a result.
You’ve come to a great place to learn how to help her learn to live with her diabetes.
I hope that she’ll/we’ll settle into our new normal and she’ll accept it for what it is. With two younger sisters, we’re having a tough time getting all 3 on board to eating healthier. We have little victories…she tested her own BGL yesterday morning and this morning, she allowed I’d give an injection on her leg instead of just her arms today…but then she’ll fight snacks because she doesn’t want another injection. Or she just gets down because of all that’s hitting her emotionally and I believe that she doesn’t know an outlet. She’s eating, but I fear there’s becoming a negative association with food now. We’re going to try and get her back to school after the holiday, but we took her to an after school function she used to participate in, but instead she sat away from everyone moping. I wish there was something more I could do to help her. I’m feeling so anxious and helpless…and anytime I give her injections and they hurt her, I get even more torn up. We are going to join a support group for young people with T1D to see if that helps her and looking into counseling.
You’re making progress,but some things can’t be rushed too much. Keep positive and keep working at helping her know more about handling it every day. Painful at times, but necessary.
Injections will hurt at times, but there’s really no way around it. We all wish there was some way to see where each nerve was so that we can ALWAYS shoot between them, but that’s definitely a vain hope, so all we can do is our best.
Come to think of it, I’ve developed the habit of just putting the needle SLIGHTLY into the skin to test for nerves, THEN push it in if it doesn’t give me a warning that it WILL be painful. Still not absolutely perfect, but it seems to work much of the time.
My daughter 10 diagnosis 8/17 so it’s new to us… she returned to school with a 504 plan… the staff and nurse at her school were awesome the plan they wrote was a page long on her requirement… they are 200% on board. Her first 3 days back went to the school to observe her new routine at school to be sure she left the class 10mins early for the nurse so she could get her insulin and still be able to sit with her friends…
When she returned to school… I gave her the option to tell her friend/class or not she chose to educate them on T1D… she returned to a lot of hugs and a lot of kids now know the signs to look for… her teacher even joined in to educate… it was awesome. I hope your child has the same welcome back… take care
My daughter was diagnosed at 9 and she’s fixing to be 12 she is in middle school this year and likes that she doesn’t have to go to the nurse and can keep it on her now. We just got the CGM and I love it but it’s driving me crazy and her because I constantly find myself looking at it. I can’t get her to keep her phone on because she don’t want to feel different than everybody else so I can monitor the readings throughout the day since she isn’t going to the nurse so I had to give her an option it was either leave on or the nurse call her up so often through the day. She will start the pump this week but when she was first diagnosed she was completely against getting but now she wanted it to try so I hope it goes well. And if you can get her to start doing it on her own there are tricks she can do so she can do it in her arm herself like placing her arm on a chair or on her leg. And it is very important for her to rotate so she doesn’t build the scar tissue my daughter kept doing the same places so it came a point where it was like insulin wasn’t doing anything but that is why she had built the scar tissue in those areas. And as far as out to eat she would just do her injections once we got to the car. It is very hard at first but it gets easier but will always be a worry. I hope she comes over her fear of it.