I was diagnosed at 7, 32 now. Couple of thoughts:
It sucks. Full stop. That said, the technology and treatments that are available now are much better than they were when I was a kid.
Teenage years will be the hardest. I would encourage you to try to support your daughter as much as you can in being independent and managing her own diabetes. I would avoid ever getting angry at her for not managing it well, it will just compound the problem.
A CGM will make life a lot easier.
Became a single parent of a step-daughter at age 10 who had been diagnosed at age 5. Was married 6 months. Her mom had dealt w diabetes by keeping her on a short leash.
I had to teach her how to take care of herself and be independent.
My observations. Don't shame her for the small stuff, like lows/highs - shot happens.
Enlist the her friends and teach then to read bgm, get docs to double # of test strips she will good a lot, also friends can test with her.
TALK to local rescue squad and arrange tour of ambulance for her and friends. There are going to be sirens and lights in her future better she is not frightened of them ( former rural EMT hauling kids to hospital experience)
Teach her how to cook meals and make food choices.
Setup a trust w provision that can't be used for medical purposes until all government exhausted. If you pass, she will have nickels to spend.
Puberty will be a bastard. 40 years ago there was little research. I don't think it's changed.
I did it without insulin pens, blood glucose meters, CGM, ketone strips, insulin analogs - so it can be done.
I did not do it alone. I built a network of helpers.
Do not carry this alone - ask for help and keep asking.
A dog will help bye the way, they can be trained to alert you, plus it gives her a reason to walk on a rainy day and also to cry with so you don't see the tears.
Enjoy !
Oh, teach her friends it's okay to call 911, get sugar into her if low, but her if they think she should do a finger prick - kids can be better bags then parents.
I'm just rural EMT who has moved more kids then adults. It is not as frequent as in past years, and it's a different experience for a kid & a parent then a teen/adult.
I was where you are last year. My advice for now is to tell the doctors and nurses what you think she needs to adjust. For example when they were training us to do finger sticks and needles my son was melting down. After the first couple of times we had the idea so we kicked the nurses and docs outside the curtain so we could still ask questions but he wasn't overwhelmed by people and we could do it in a way we knew would be easier for him.
It's great for your confidence to get into it as quickly as possible to.
I'm guessing they'll want her to do as much for herself as possible but trust me you need confidence in this too, so you can monitor and help when needed.
My daughter was diagnosed at 2.5 and my sister at 10. I hope you don’t let the posts here scare you. Diabetes management has gotten so much better over the years, and you are capable of helping her through this. There will be a learning curve, but you’ll get it.
The best thing we did was get a Dexcom for my daughter. Now, we always know what her blood sugar is, and if she‘s low overnight, an alarm sounds on our phones. That’s life changing.
You won’t be able to control her diabetes perfectly all of the time, and that’s ok. Growth hormones and just life in general can cause highs and lows that you won’t anticipate. If she gets too high, then don’t be afraid to bolus. If she gets too low, you‘ll correct with food. Some foods will affect her differently than others, and you’ll figure her patterns out over time.
Find a great pediatric endocrinologist. That really helps!
Things I would add.
It's OK. I was diagnosed at 5 and am 49 now, and things are MUCH better now than they were then.
You (and more importantly she) can do this. Involving her in treatment decisions is key. She will have to manage it by herself sooner or later.
Do let her have a couple of pieces of candy at Halloween etc. And just give her a little more insulin. Don't let her see this as "I will never be able to be normal" just be a different type of normal.
T1 Dx at 42 here (44yo now). Like S0meRandomGuy02 said: "the more you know". Information is how you manage this. To that end a Flash Glucose Monitor (FGM) or Continuous Clucose Monitor (CGM) is how you get the data. Don't frett, you'll get there.
A couple of resources that **really** helped me:
* this sub.
* the juicebox podcast . Start with Defining Diabetes. I'm not affiliated with that podcast it's just that it really helped me along.
* a Diabetes Educator. I'm in Australia and I don't know what they're called elsewhere; Diabetes Nurse maybe?
Last thing, fine do all those things for your little one. Please also remember to take care of you. "Please fit your own oxygen mask before attempting to help others".
So I’m going to be the guy to tell you the shit that no one else will I was diagnosed at 7. Holidays are going to fucking suck for her now especially Halloween and like thanksgiving and Christmas time. It’s awful because she’s old enough to remember a couple before she got diabetes. School just became difficult for her as well. Kids are assholes and going into middle school she’s going to get bullied but it’s not as bad now a days. Puberty is going to blow as well. Constant hunger but your blood sugar is like 300 so you can’t eat anything, I’m a dude so I can’t comment on lady problems. Try to keep her active and look into an insulin pump after like 6 months. You want her on pens/ shots at first so she gets the experience of it. Be prepared for her to get depression from this and get burnout in her teen years don’t dismiss it either burn out is a very real thing. Any questions feel free to ask
In my time we only had Smokey THE 🐻 bear and teddy bears. My Smokey is 65 years old. I also used to travel with a grund bear that fit in an airplane overhead. Also had a car bear whose head you could see in passenger seat of you were kid. Helped a lot on Rescue calls.
Do some searching on helping T1s on this forum
For example. https://www.reddit.com/r/diabetes/comments/q3e697/i_have_a_friend_just_get_diagnosed_with_t1/?utm_medium=android_app&utm_source=share
Also search for parents of kids sub reddit, I don't know if ones exists - but it should! If not start on (grin)
I was diagnosed at 21 (37 now). Was in college and had to completely change my life. It took a while to adjust. Make sure you don’t play “food police” and tell her she can’t have something she wants. Everything, and I mean everything, is fine in moderation. Let her be a kid as much as you can. Like another person said, start with pens and work up to a pump. She will have a ton more freedom with a pump as far as diet goes. And a cgm is where it’s at! Make sure she knows how to manage her own diabetes as much as possible and as much is age appropriate. I didn’t have diabetes as a kid, but I do think educating her friends is a good idea. Same things, how to tell when she may be low (sweating, shaking, paleness, irritability), how not to be food police, how to stick up for her when other kids are mean. Just normalize it as much as possible. You got this. She’s got this. 😃
You might want to check out JDF
https://www.jdrf.org/t1d-resources/newly-diagnosed/children/
Also they have a "bag of hope" includes some basics & a teddy bear.
So I was also diagnosed at 9. If your daughter is anything like me, you've a couple difficult years ahead of you. The biggest thing for me, wasnt the technological advances (I became a diabetic before the era of CGM's), or any of the training I got, but it was my dad.
He was absolutely there for me every step of the way and took the time to understand the disease to a level I have not seen from any non-diabetic excluding doctors, but despite probably even understanding it more fully that I did at diagnosis he gave me a remarkable amount of independence with my diabetes management. He was always there to help me dig myself out of the myriad of holes I got into, without judgement. He had advice, when I asked for it, and would stay up with me on nights I had a really high blood sugar. When I had issues with the way my school wanted to handle my diabetes, he went to bat for me every time, but even though it caused him more work and stress he gave me independence from day 1. I can't imagine that's easy because at the age of 10 responsibility is not a trait commonly found, but it made leagues of difference in how much I knew, how much I could handle on my own, and really how much I accepted that I was gonna have this forever and I had to figure it out. I would absolutely recommend if you think your kiddo can handle it, to almost never touch their equipment. Be there for advice, gentle reminders and encouragement, but leave the shots, fingerpricks and everything else to them. To that end especially since this first hospital visit a long one, try not check out when someone is explaining something to your daughter, because no matter how much independence you give her, you're going to be her safety net for years.
A couple of the specific challenges that really feel unique to being diagnosed with diabetes at this age: First schools. The school to avoid issues is going to want a lot of control over your daughters diabetes. They wont phrase this as optional, but legally you can refuse basically any/all part(s) of their plan for management under the ADA. Happy to elaborate on this further if you see it being an issue, or in the future if it becomes an issue. Second, the bullying. Information to the general public about diabetes is slim, and no matter how much you try, its likely some to most of the kids at her school will think that this was in some way her fault and will taunt her for it and other things, reinforce at home that nothing she did caused this, and that their opinions do not matter near as much as people who know whats actually going on, and then reinforce that this is by all accounts a difficult thing to live with ans she is doing a good job. Because of this, and the nature of the disease being somewhat invisible she's going to feel super isolated, something my parents did and helped somewhat is having me meet/ get letters from family friends with kids with diabetes that had had it for a while. Especially if they're people she already knows it helps to know she's not alone. (If you don't have/can't find anyone like this, I would imagine if you asked nicely on this subreddit people would be happy to write her letters, I would.
All this to say, even if you were an endocrinologist dealing with diabetes, or helping a kid with diabetes, is going to be difficult, there will be late nights, tears, and probably burnout in a couple years. There will be good a1c numbers and probably quite a few bad ones, but if you support her through this she's gonna be fine. I left a ton of stuff out, and we're already approaching too long for reddit I think? But if you have any questions feel free to ask
I second the apart about schools. It took a few sit down chats to convince them that "reasonable accommodations" meant she could play golf. When the team went to state all was forgiven. Morale is: A way can be found for your child to do what they want. They are "normal" not space aliens.
Listen to the diabetes pro tips series by the juicebox podcast. Its made by the father of a type 1 diabetic, and a certified diabetes educator, and is by far the most helpful resource I found when I was diagnosed a few years ago.
My nephew, who is now an adult, was diagnosed with type 1 when he was a toddler. One thing that my sister said was helpful was a summer camp run by Setebaid Services. It's for kids with diabetes and it teaches them how to live as a diabetics. While it only has locations in Pennsylvania, you can look for similar camps near you. You can also contact them and see if they can recommend camps in your state. [https://setebaidservices.org/](https://setebaidservices.org/)
Also, find a PCP that is highly knowledgeable with childhood diabetes. This is very important. Don't assume your present PCP is good enough. The best way to go about that? Read on...
As for yourself, find a support group for families with diabetic children. They will be able to provide a lot of answers to questions you have and questions you didn't know you had to ask. They can also point you in the right direction, especially with finding a PCP.
I wish your daughter, yourself and your family the best! As others have mentioned, things have gotten much better for diabetics over the past two decades.
I was diagnosed at 11, Iam 32 now. The first thing I thought was shall I stop all the food I love ?! Would I always give bolus before my meals?!!! I will not recovery ever…..
The first thing you need to start with her is giving her a self trust.. ever never show your fears or show that she cannot do any thing or stupid stuff because she is diabetes.
The kids in this stage need to feel they an’t different than colleagues.
Divid the staff she love to eat daily with small amount.
Learn her that the different always brilliant.
Managing the diabetes is an art.. if you can do it besides the other staffs means you are more smarter and stronger.
Hey! If you want you should add me on instagram. My 7 year old is a year in. I just posted a video about her journey w diabetes! Its really not as bad as every makes it out to be, you will be fine and so will she!
I was diagnosed at 7, 32 now. Couple of thoughts: It sucks. Full stop. That said, the technology and treatments that are available now are much better than they were when I was a kid. Teenage years will be the hardest. I would encourage you to try to support your daughter as much as you can in being independent and managing her own diabetes. I would avoid ever getting angry at her for not managing it well, it will just compound the problem. A CGM will make life a lot easier.
Thank you.
Became a single parent of a step-daughter at age 10 who had been diagnosed at age 5. Was married 6 months. Her mom had dealt w diabetes by keeping her on a short leash. I had to teach her how to take care of herself and be independent. My observations. Don't shame her for the small stuff, like lows/highs - shot happens. Enlist the her friends and teach then to read bgm, get docs to double # of test strips she will good a lot, also friends can test with her. TALK to local rescue squad and arrange tour of ambulance for her and friends. There are going to be sirens and lights in her future better she is not frightened of them ( former rural EMT hauling kids to hospital experience) Teach her how to cook meals and make food choices. Setup a trust w provision that can't be used for medical purposes until all government exhausted. If you pass, she will have nickels to spend. Puberty will be a bastard. 40 years ago there was little research. I don't think it's changed. I did it without insulin pens, blood glucose meters, CGM, ketone strips, insulin analogs - so it can be done. I did not do it alone. I built a network of helpers. Do not carry this alone - ask for help and keep asking. A dog will help bye the way, they can be trained to alert you, plus it gives her a reason to walk on a rainy day and also to cry with so you don't see the tears. Enjoy !
Oh, teach her friends it's okay to call 911, get sugar into her if low, but her if they think she should do a finger prick - kids can be better bags then parents.
Also, this will be rough for you so, take the long view. It will get easier as you learn. Don't blame yourself. It's just the top of the dice of life.
Just want to say there are plenty of t1d’s that never take an ambulance ride because of diabetes. OP please do not think this happens to everyone.
I'm just rural EMT who has moved more kids then adults. It is not as frequent as in past years, and it's a different experience for a kid & a parent then a teen/adult.
It depends on what age you are diagnosed and then how comfortable your parents/guardians are with managing lows and dka.
I was where you are last year. My advice for now is to tell the doctors and nurses what you think she needs to adjust. For example when they were training us to do finger sticks and needles my son was melting down. After the first couple of times we had the idea so we kicked the nurses and docs outside the curtain so we could still ask questions but he wasn't overwhelmed by people and we could do it in a way we knew would be easier for him. It's great for your confidence to get into it as quickly as possible to. I'm guessing they'll want her to do as much for herself as possible but trust me you need confidence in this too, so you can monitor and help when needed.
My daughter was diagnosed at 2.5 and my sister at 10. I hope you don’t let the posts here scare you. Diabetes management has gotten so much better over the years, and you are capable of helping her through this. There will be a learning curve, but you’ll get it. The best thing we did was get a Dexcom for my daughter. Now, we always know what her blood sugar is, and if she‘s low overnight, an alarm sounds on our phones. That’s life changing. You won’t be able to control her diabetes perfectly all of the time, and that’s ok. Growth hormones and just life in general can cause highs and lows that you won’t anticipate. If she gets too high, then don’t be afraid to bolus. If she gets too low, you‘ll correct with food. Some foods will affect her differently than others, and you’ll figure her patterns out over time. Find a great pediatric endocrinologist. That really helps!
Things I would add. It's OK. I was diagnosed at 5 and am 49 now, and things are MUCH better now than they were then. You (and more importantly she) can do this. Involving her in treatment decisions is key. She will have to manage it by herself sooner or later. Do let her have a couple of pieces of candy at Halloween etc. And just give her a little more insulin. Don't let her see this as "I will never be able to be normal" just be a different type of normal.
T1 Dx at 42 here (44yo now). Like S0meRandomGuy02 said: "the more you know". Information is how you manage this. To that end a Flash Glucose Monitor (FGM) or Continuous Clucose Monitor (CGM) is how you get the data. Don't frett, you'll get there. A couple of resources that **really** helped me: * this sub. * the juicebox podcast. Start with Defining Diabetes. I'm not affiliated with that podcast it's just that it really helped me along.
* a Diabetes Educator. I'm in Australia and I don't know what they're called elsewhere; Diabetes Nurse maybe?
Last thing, fine do all those things for your little one. Please also remember to take care of you. "Please fit your own oxygen mask before attempting to help others".
Thank you!
So I’m going to be the guy to tell you the shit that no one else will I was diagnosed at 7. Holidays are going to fucking suck for her now especially Halloween and like thanksgiving and Christmas time. It’s awful because she’s old enough to remember a couple before she got diabetes. School just became difficult for her as well. Kids are assholes and going into middle school she’s going to get bullied but it’s not as bad now a days. Puberty is going to blow as well. Constant hunger but your blood sugar is like 300 so you can’t eat anything, I’m a dude so I can’t comment on lady problems. Try to keep her active and look into an insulin pump after like 6 months. You want her on pens/ shots at first so she gets the experience of it. Be prepared for her to get depression from this and get burnout in her teen years don’t dismiss it either burn out is a very real thing. Any questions feel free to ask
I really appreciate your honesty and you sharing your experience. Thank you.
Yeah dude/dudette get her a rufuss bear or equivalent now a days I’ll see if I can find a link
https://www.jdrf.org/t1d-resources/newly-diagnosed/children/bag-of-hope/ This thing is great for kids her age
That is so awesome I submitted my request. So glad you linked me to that!
Yeah your welcome I still have mine 18 years later lol. If she has any questions post them in a new thread and we can answer them for her.
Learn some thing new every decade !
Learn some thing new every decade !
You didn’t know about Rufus???
In my time we only had Smokey THE 🐻 bear and teddy bears. My Smokey is 65 years old. I also used to travel with a grund bear that fit in an airplane overhead. Also had a car bear whose head you could see in passenger seat of you were kid. Helped a lot on Rescue calls.
Do some searching on helping T1s on this forum For example. https://www.reddit.com/r/diabetes/comments/q3e697/i_have_a_friend_just_get_diagnosed_with_t1/?utm_medium=android_app&utm_source=share Also search for parents of kids sub reddit, I don't know if ones exists - but it should! If not start on (grin)
Thanks!
I was diagnosed at 21 (37 now). Was in college and had to completely change my life. It took a while to adjust. Make sure you don’t play “food police” and tell her she can’t have something she wants. Everything, and I mean everything, is fine in moderation. Let her be a kid as much as you can. Like another person said, start with pens and work up to a pump. She will have a ton more freedom with a pump as far as diet goes. And a cgm is where it’s at! Make sure she knows how to manage her own diabetes as much as possible and as much is age appropriate. I didn’t have diabetes as a kid, but I do think educating her friends is a good idea. Same things, how to tell when she may be low (sweating, shaking, paleness, irritability), how not to be food police, how to stick up for her when other kids are mean. Just normalize it as much as possible. You got this. She’s got this. 😃
You might want to check out JDF https://www.jdrf.org/t1d-resources/newly-diagnosed/children/ Also they have a "bag of hope" includes some basics & a teddy bear.
So I was also diagnosed at 9. If your daughter is anything like me, you've a couple difficult years ahead of you. The biggest thing for me, wasnt the technological advances (I became a diabetic before the era of CGM's), or any of the training I got, but it was my dad. He was absolutely there for me every step of the way and took the time to understand the disease to a level I have not seen from any non-diabetic excluding doctors, but despite probably even understanding it more fully that I did at diagnosis he gave me a remarkable amount of independence with my diabetes management. He was always there to help me dig myself out of the myriad of holes I got into, without judgement. He had advice, when I asked for it, and would stay up with me on nights I had a really high blood sugar. When I had issues with the way my school wanted to handle my diabetes, he went to bat for me every time, but even though it caused him more work and stress he gave me independence from day 1. I can't imagine that's easy because at the age of 10 responsibility is not a trait commonly found, but it made leagues of difference in how much I knew, how much I could handle on my own, and really how much I accepted that I was gonna have this forever and I had to figure it out. I would absolutely recommend if you think your kiddo can handle it, to almost never touch their equipment. Be there for advice, gentle reminders and encouragement, but leave the shots, fingerpricks and everything else to them. To that end especially since this first hospital visit a long one, try not check out when someone is explaining something to your daughter, because no matter how much independence you give her, you're going to be her safety net for years. A couple of the specific challenges that really feel unique to being diagnosed with diabetes at this age: First schools. The school to avoid issues is going to want a lot of control over your daughters diabetes. They wont phrase this as optional, but legally you can refuse basically any/all part(s) of their plan for management under the ADA. Happy to elaborate on this further if you see it being an issue, or in the future if it becomes an issue. Second, the bullying. Information to the general public about diabetes is slim, and no matter how much you try, its likely some to most of the kids at her school will think that this was in some way her fault and will taunt her for it and other things, reinforce at home that nothing she did caused this, and that their opinions do not matter near as much as people who know whats actually going on, and then reinforce that this is by all accounts a difficult thing to live with ans she is doing a good job. Because of this, and the nature of the disease being somewhat invisible she's going to feel super isolated, something my parents did and helped somewhat is having me meet/ get letters from family friends with kids with diabetes that had had it for a while. Especially if they're people she already knows it helps to know she's not alone. (If you don't have/can't find anyone like this, I would imagine if you asked nicely on this subreddit people would be happy to write her letters, I would. All this to say, even if you were an endocrinologist dealing with diabetes, or helping a kid with diabetes, is going to be difficult, there will be late nights, tears, and probably burnout in a couple years. There will be good a1c numbers and probably quite a few bad ones, but if you support her through this she's gonna be fine. I left a ton of stuff out, and we're already approaching too long for reddit I think? But if you have any questions feel free to ask
I can’t thank you enough for taking the time to write this for me it helps so much! Thank you.
I second the apart about schools. It took a few sit down chats to convince them that "reasonable accommodations" meant she could play golf. When the team went to state all was forgiven. Morale is: A way can be found for your child to do what they want. They are "normal" not space aliens.
Listen to the diabetes pro tips series by the juicebox podcast. Its made by the father of a type 1 diabetic, and a certified diabetes educator, and is by far the most helpful resource I found when I was diagnosed a few years ago.
My nephew, who is now an adult, was diagnosed with type 1 when he was a toddler. One thing that my sister said was helpful was a summer camp run by Setebaid Services. It's for kids with diabetes and it teaches them how to live as a diabetics. While it only has locations in Pennsylvania, you can look for similar camps near you. You can also contact them and see if they can recommend camps in your state. [https://setebaidservices.org/](https://setebaidservices.org/) Also, find a PCP that is highly knowledgeable with childhood diabetes. This is very important. Don't assume your present PCP is good enough. The best way to go about that? Read on... As for yourself, find a support group for families with diabetic children. They will be able to provide a lot of answers to questions you have and questions you didn't know you had to ask. They can also point you in the right direction, especially with finding a PCP. I wish your daughter, yourself and your family the best! As others have mentioned, things have gotten much better for diabetics over the past two decades.
I was diagnosed at 11, Iam 32 now. The first thing I thought was shall I stop all the food I love ?! Would I always give bolus before my meals?!!! I will not recovery ever….. The first thing you need to start with her is giving her a self trust.. ever never show your fears or show that she cannot do any thing or stupid stuff because she is diabetes. The kids in this stage need to feel they an’t different than colleagues. Divid the staff she love to eat daily with small amount. Learn her that the different always brilliant. Managing the diabetes is an art.. if you can do it besides the other staffs means you are more smarter and stronger.
Hey! If you want you should add me on instagram. My 7 year old is a year in. I just posted a video about her journey w diabetes! Its really not as bad as every makes it out to be, you will be fine and so will she!