Hi Everyone - figured it would not hurt to cast a broad net here in hopes of hearing any tips, tricks or advice about being a parent to a young kid (3 year old daughter) with Type 1 Diabetes. We just found out on Wednesday 12/30 after spending some time at Children's Hospital in Denver. They have what seems to be a great center called the Barbara Davis Center for Childhood Diabetes where I am sure we will learn a ton, but perhaps hearing directly from any of you could be really helpful. Not going to lie - it has been a tough couple of days for all of us in the family. Trying to explain to her why we are poking her and giving her what seems to be non-stop shots is far from easy. Thankfully, she is an amazing rockstar who is tough as nails. I know it will get easier - and with some tips I hope to fast track that path. Anything you may have as first or second hand advice will be very welcome. Thank you - I am looking forward to putting 2020 in the rear view mirror.
Seeking Advice - Tips and Tricks for parenting a type 1 diabetic kiddo?
- Thread starter JoMo
- Start date
MarvB
Well-known member
I have literally nothing to offer you but my thoughts for family and hope -21 turns the right direction. Wishing you and your little one the best.
270.Rose
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- Dec 12, 2020
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- 271
Just wanted to say that I'm sorry to hear about your daughter and will be praying for you all as you move forward. Best wishes for a peaceful 2021.
I hope that you and your wife can make time for prioritizing your relationship and keep that strong, I've seen families let stuff like this tear them apart and it's really sad when they start treating each other as the enemy instead of sharing the burden of fighting against an outside enemy.
I hope that you and your wife can make time for prioritizing your relationship and keep that strong, I've seen families let stuff like this tear them apart and it's really sad when they start treating each other as the enemy instead of sharing the burden of fighting against an outside enemy.
With two young girls myself I can only imagine how tough that a time like this is.
I have little to add as I have no experience with pediatric endocrinology however I am a pharmacist and can say that generally speaking youth onset - type 1 diabetics tend to have a much tighter grip on their condition later in life, having learned proper behaviors early on.
With advances in medicine (insulin pumps and continuous glucose monitoring systems) outcomes are much much better than ever before.
Best of luck to you and your family. Shoot me a message if I can help answer any medication related question. I do work with Childrens Hospital (oncology) and you are in great hands.
I have little to add as I have no experience with pediatric endocrinology however I am a pharmacist and can say that generally speaking youth onset - type 1 diabetics tend to have a much tighter grip on their condition later in life, having learned proper behaviors early on.
With advances in medicine (insulin pumps and continuous glucose monitoring systems) outcomes are much much better than ever before.
Best of luck to you and your family. Shoot me a message if I can help answer any medication related question. I do work with Childrens Hospital (oncology) and you are in great hands.
Hi JoMo, I'm Sytes' wife. Although I haven't parented a Type 1 diabetic child, I can offer advice from your daughter's perspective. I've been Type 1 myself for 37 years, diagnosed at age 1. The advances in technology are far greater than what we had back in the '80s, so that's the great news for your family. For me, growing up in a small town, I was the only diabetic until another friend was diagnosed when I was 12. It can definitely make for some frustrating and lonely times as a kid when no one else understands why you're passed out in the nurse's office or the only one sidelined from basketball practice, waiting for a low blood sugar to come back up, but my parents did everything they could to make sure that everyone treated me as normally as possible and never let diabetes be an excuse to stop me from doing something. I'm eternally grateful for that as that mentality has allowed me to go on some crazy adventures that I would have regretted missing out on. It might take a little more planning and preparation, but don't be afraid of diabetes or let it stand in her way (I hate that diabetes can be classified as a disability -- it only disables you if you let it). If you have other kiddos, never treat her any differently because of it. Do everything you can to make sure she grows up knowing it's just something to manage to stay healthy, but there's no reason it should ever stop her from anything she wants to do. My dad has said that it was huge battle for them to get other family members, especially grandparents, to not treat me any differently because of it for years after I was diagnosed, so you might have to work at it to get others to do the same.
Although it may not seem like good news for your daughter now, it will be helpful that she's diagnosed so young because she'll only grow up knowing how to manage it. It was much harder for my 12-year old friend when she was diagnosed because it was very life-altering for her, and to this day she continues to struggle to control it and live a healthy life. As a parent, it will be your job to educate everyone around her (extended family, child care providers, teachers, parents of friends, coaches, etc) to ensure that someone is always watching out for her. As she gets older, teach her to manage it herself as early as possible rather than managing it for her. She'll need to make mistakes and figure it out while still having you to help her. I was a pretty responsible kid and think I was in 5th grade when my mom turned over the reigns and let me make decisions myself (under her watchful eye, of course).
Get a good support system for her, with friends and their parents, and make it as normal as possible. When I was a kid and had a sleepover, when it was time to check my blood sugar, everyone got to check their blood sugar, regardless of whose house we were at (maybe something to incorporate at home with your family while she's getting used to it?). Since no one else knew anything about it, it made it a little less awkward to talk about if others got to experience it a little, too, and then I didn't feel as much like I was the odd one. There are a lot of misconceptions out there (the one thing I've always heard is "Really? You don't look like a diabetic!"), so educating those around her and normalizing it for her will be helpful. Most people don't understand that Type 1 and Type 2 are not the same thing, and that Type 1 is not caused by inactivity or obesity. Get used to explaining this to people often.
I won't lie, it's a challenging disease, and there will be some very scary moments that will make you terrified to let her out of your sight, but all you can do is learn from those things and make modifications to prevent them from happening again. The disease changes over time and can be very unpredictable; something that works today may not work tomorrow, so you just have to keep tweaking things as you go. Find an endocrinologist who really listens to you and hears what you're saying because you're the one who knows your daughter better than anyone else. You'll know when the frustration has been enough and it's time to try something new, and it's ok to say no if your endo suggests something new and you or your daughter just aren't ready to try it yet. My own experience shows that science can't always explain why I react the way I do sometimes, and accepting that diabetes is not an exact science will make this easier. In theory, certain insulin dosages and carb ratios should work, but sometimes they just don't, so expecting the unexpected and knowing that this can often be trial and error will help you be prepared (although it doesn't make it any less frustrating). My own kiddo has some special needs (not diabetes-related), and it's really difficult as a parent to know that they're struggling and not be able to just fix it for them. For younger kids, though, they're not nearly as aware of the struggle they're having with it as you. The best you can do might not seem like it's enough, but it is, and it is in her mind, too.
Pumps and Continuous Glucose Monitors are great tools. Not all young kids can handle the tubing that comes with a pump, but there are several parents of young kids on some of the diabetes forums that I'm part of that use CGMs for their little ones. It's personally been a life-saver for me (both literally and figuratively) and you'll sleep better at night. I use the Dexcom, which has the ability for you to monitor her glucose levels when she's not with you. I imagine this will be incredibly helpful for both of you when she starts school (many insurance companies will cover a CGM under their prescription plan instead of as durable medical equipment, which is much cheaper for you, but you have to ask for the prescription plan coverage and it requires a different prescription from your doctor). Also ask about Baqsimi, an inhalable glucagon that's much easier for an inexperienced person to administer than injectable glucagon if she experiences a severe low. When she gets a little older, there are week-long summer camps in most states for diabetic kids, managed by doctors and nurses. I went many times as an elementary and middle-schooler, and it was a great experience to get to know other kids dealing with the same thing. My mom admits that she was a nervous wreck for the entire week the first time I went, so it was also good for her to see I could be away from home for a bit and still be fine.
Best of luck to you and your family as you go through this. Feel free to message if you have questions or just need to chat, I'm happy to share!
Although it may not seem like good news for your daughter now, it will be helpful that she's diagnosed so young because she'll only grow up knowing how to manage it. It was much harder for my 12-year old friend when she was diagnosed because it was very life-altering for her, and to this day she continues to struggle to control it and live a healthy life. As a parent, it will be your job to educate everyone around her (extended family, child care providers, teachers, parents of friends, coaches, etc) to ensure that someone is always watching out for her. As she gets older, teach her to manage it herself as early as possible rather than managing it for her. She'll need to make mistakes and figure it out while still having you to help her. I was a pretty responsible kid and think I was in 5th grade when my mom turned over the reigns and let me make decisions myself (under her watchful eye, of course).
Get a good support system for her, with friends and their parents, and make it as normal as possible. When I was a kid and had a sleepover, when it was time to check my blood sugar, everyone got to check their blood sugar, regardless of whose house we were at (maybe something to incorporate at home with your family while she's getting used to it?). Since no one else knew anything about it, it made it a little less awkward to talk about if others got to experience it a little, too, and then I didn't feel as much like I was the odd one. There are a lot of misconceptions out there (the one thing I've always heard is "Really? You don't look like a diabetic!"), so educating those around her and normalizing it for her will be helpful. Most people don't understand that Type 1 and Type 2 are not the same thing, and that Type 1 is not caused by inactivity or obesity. Get used to explaining this to people often.
I won't lie, it's a challenging disease, and there will be some very scary moments that will make you terrified to let her out of your sight, but all you can do is learn from those things and make modifications to prevent them from happening again. The disease changes over time and can be very unpredictable; something that works today may not work tomorrow, so you just have to keep tweaking things as you go. Find an endocrinologist who really listens to you and hears what you're saying because you're the one who knows your daughter better than anyone else. You'll know when the frustration has been enough and it's time to try something new, and it's ok to say no if your endo suggests something new and you or your daughter just aren't ready to try it yet. My own experience shows that science can't always explain why I react the way I do sometimes, and accepting that diabetes is not an exact science will make this easier. In theory, certain insulin dosages and carb ratios should work, but sometimes they just don't, so expecting the unexpected and knowing that this can often be trial and error will help you be prepared (although it doesn't make it any less frustrating). My own kiddo has some special needs (not diabetes-related), and it's really difficult as a parent to know that they're struggling and not be able to just fix it for them. For younger kids, though, they're not nearly as aware of the struggle they're having with it as you. The best you can do might not seem like it's enough, but it is, and it is in her mind, too.
Pumps and Continuous Glucose Monitors are great tools. Not all young kids can handle the tubing that comes with a pump, but there are several parents of young kids on some of the diabetes forums that I'm part of that use CGMs for their little ones. It's personally been a life-saver for me (both literally and figuratively) and you'll sleep better at night. I use the Dexcom, which has the ability for you to monitor her glucose levels when she's not with you. I imagine this will be incredibly helpful for both of you when she starts school (many insurance companies will cover a CGM under their prescription plan instead of as durable medical equipment, which is much cheaper for you, but you have to ask for the prescription plan coverage and it requires a different prescription from your doctor). Also ask about Baqsimi, an inhalable glucagon that's much easier for an inexperienced person to administer than injectable glucagon if she experiences a severe low. When she gets a little older, there are week-long summer camps in most states for diabetic kids, managed by doctors and nurses. I went many times as an elementary and middle-schooler, and it was a great experience to get to know other kids dealing with the same thing. My mom admits that she was a nervous wreck for the entire week the first time I went, so it was also good for her to see I could be away from home for a bit and still be fine.
Best of luck to you and your family as you go through this. Feel free to message if you have questions or just need to chat, I'm happy to share!
Wildabeest
Well-known member
I have a good friend who has two kids with Type 1. They’ve definitely had their ups and downs over the years, but the kids are now teens and doing fine. They are big adventure junkies and don’t let it stop them from doing pretty much anything they want.
The parents are very active in JDRF, and I would encourage you to look into that. Tons of support there. When I lived back east, I would always attend their annual fundraising events. The stories were nothing short of inspirational. As Mrs. @Sytes says, technology and treatments have come a long way over the past decade or two. JDRF provides a lot of funding towards that, but they also provide a lot of support to families dealing with it.
Best of luck to you!
The parents are very active in JDRF, and I would encourage you to look into that. Tons of support there. When I lived back east, I would always attend their annual fundraising events. The stories were nothing short of inspirational. As Mrs. @Sytes says, technology and treatments have come a long way over the past decade or two. JDRF provides a lot of funding towards that, but they also provide a lot of support to families dealing with it.
Best of luck to you!
I am AndyPOW's wife. I've had T1D for more than 40 years when there were no blood checking machines, CGMs and the insulin was U40. I got it when I was 6 years old. I use a pump that I like pretty well as well as a Dexcom CGM which I love. I will say that when I was young I was really annoyed that I had it. But kids are kids and if you spend time explaining it you can avoid a lot of the behavior and attitudes that I had. Sytes' wife's info is right on the money. But I am happy to help and support any way I can as well. Post a message about any particular issues as they arise and we will answer your concerns as best we can.
I'll brag on my wife here a little bit. Her T1D has never held her back. She was on the swim team in high school, biked miles and miles, has several masters degrees, has lived and taught on three continents, had three of her own kids, adopted 6 kids, fostered numerous others, and now lives remotely on a homestead in Southeast Alaska that we have built from essentially the ground up. The message is a T1D diagnosis is not going to be a limiting factor in your young daughter's life. All the best, Andy
Seriously - so grateful for you all chiming in here. Being day 3 on this journey, I may reach out directly to some of you or post more specific questions. This evening, my wife and I were just discussing there being two types of parents when something like this happens. The ones who make it a pitty party and ones who don't. We know which category we want to fall into. Thank you for the great information and first hand tips @Sytes (wife) and @AndyPOW (wife). I will likely take you up on your offers and reach out via direct messages to touch base in the future.
-Joe
-Joe
D
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JoMo, I'm going to shoot you a PM. My Son was diagnosed with T1D two years ago at just two years old. He was in full DKA and had to get life flighted from Gunnison to Barbara Davis. I know exactly what you are going through. It's heart wrenching and still to this day was the scariest time in my life. I didn't know anything about T1D and he was so little and didn't understand all the pokes and shots at first. It was heart breaking. I promise it does get easier. Barbara Davis is wonderful. We had Dr.Wadwa, who was great, as my son's pediatric endocrinologist. I will echo everything Sytes' wife said. She pretty much nailed it, and has the experience to back it up. Technology is your friend. Use the CGM, with the app on your phone(and get her a dedicated phone), that severly cuts down on the finger pokes. If you need some help securing a phone for her for monitoring (IPhones are friggin expensive), let me know, and I can have my wife throw out a lifeline on our T1D FaceBook page she is on. People have extra phones laying around that are older models and are usually willing to help. Use the OmniPod, It's great. My son has had to have one injection in the last year. There is a small poke when it's changed every three days, but it's much better than shots several times a day.
One thing I will add is I see you are a CO resident. In CO, your child now qualifies for medicaid until age 6 because of T1D. Get that going ASAP. It will cover most of the costs and will give you a huge helping hand while you figure all this out. You'll need to be prepared to transfer her over to your private insurance in a few years, but this gives you some time.
I will shoot you a PM with my contact info. I live in Iowa now, and I am heading out to a deer blind all day, but I will get back to you. I am happy to help in anyway I can. I wish you and your family the best.
One thing I will add is I see you are a CO resident. In CO, your child now qualifies for medicaid until age 6 because of T1D. Get that going ASAP. It will cover most of the costs and will give you a huge helping hand while you figure all this out. You'll need to be prepared to transfer her over to your private insurance in a few years, but this gives you some time.
I will shoot you a PM with my contact info. I live in Iowa now, and I am heading out to a deer blind all day, but I will get back to you. I am happy to help in anyway I can. I wish you and your family the best.
Mark1970
Member
This thread is dear to me.
My mom got late onset type 1 in her 50s (yes, its a thing).
Its quite different than the childhood challenges you describe, but I think it has relevance.
Its been super hard for her, especially when others around her did not really understand her challenges. I am guilty of non understanding either, including visiting her when she had the "flu" only to bring her to the hospital and find she was in DKA.
There is some good news in this though.
She eventually took this on with a fury and has become a more determined and strong person for it.
There are few diseases where every day you make a life/death decision (how much insulin to inject).
She went from asking the doctor what to do, to eventually telling the doctor what she is doing. After all, with diabetes, the patient knows more about their body than the Dr.
She is continually learning to cook in ways that have low carb loads, and even enjoys sharing her food with friends.
Much in the way I hunt and then work hard to cook wild game that even a non-hunter would enjoy, she tries to make low carb dishes that even a non-diabetic would eat.
Type1 has had a huge impact on her life, but she eventually made lifestyle changes and turned it into a positive.
Similar story to AndyPOW's wife (A big salute to you).
My mom got late onset type 1 in her 50s (yes, its a thing).
Its quite different than the childhood challenges you describe, but I think it has relevance.
Its been super hard for her, especially when others around her did not really understand her challenges. I am guilty of non understanding either, including visiting her when she had the "flu" only to bring her to the hospital and find she was in DKA.
There is some good news in this though.
She eventually took this on with a fury and has become a more determined and strong person for it.
There are few diseases where every day you make a life/death decision (how much insulin to inject).
She went from asking the doctor what to do, to eventually telling the doctor what she is doing. After all, with diabetes, the patient knows more about their body than the Dr.
She is continually learning to cook in ways that have low carb loads, and even enjoys sharing her food with friends.
Much in the way I hunt and then work hard to cook wild game that even a non-hunter would enjoy, she tries to make low carb dishes that even a non-diabetic would eat.
Type1 has had a huge impact on her life, but she eventually made lifestyle changes and turned it into a positive.
Similar story to AndyPOW's wife (A big salute to you).
Mark1970
Member
Also, I am a nerdy sciency kind of guy and have done a load of work on optical non-invasive glucose monitoring.
Sytes' super excellent post #5 mentions the Dexcom and I think that is really good input.
Full non invasive measurements have been worked on for many years, and it always seems to be "just around the corner", but its very hard and results have been inconsistent.
I made a youtube tutorial on the basics of glucose sensing.
You may find it helpful.
Sytes' super excellent post #5 mentions the Dexcom and I think that is really good input.
Full non invasive measurements have been worked on for many years, and it always seems to be "just around the corner", but its very hard and results have been inconsistent.
I made a youtube tutorial on the basics of glucose sensing.
You may find it helpful.
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OntarioHunter
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- Sep 11, 2020
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My brother has been diabetic for forty-five years. It is a handicap but he has worked around it. Kept his weight down and stayed active. The disease is catching up to him at age seventy but he is still a licensed diving instructor and hunts with me every fall. His patient cheerful attitude has served him well (in that category we are polar opposites). This fall I actually witnessed a rare meltdown of frustration due to limitations of his condition. I am roaming all over the mountains while he simply cannot last long enough to get far from the vehicle. He bought a pair of RINOs so we can stay in touch and monitor movement. I kinda blew it off as useless technocrap ... at first. I now realize those are absolutely essential gear for us. I have seen him "go weird" so many times out hunting when I was with him. And he gets upset with himself if I hold myself back on his account. Sometimes I think it's more important for him to be a part of my adventures than his own. Anyway, being able to monitor him remotely has been a godsend. I can tell from talking to him when he needs to check his levels. He now has the pump and blue tooth monitor and it is great ... when it works ... and he remembers to bring the supplies. Before he had Medicare I bought insulin over the counter up here and smuggled it across the border. The same stuff I bought for less than fifty bucks a vial cost him almost $500 at Kalispell Walmart. Hopefully you can get some financial help with the expenses. Don't be afraid to ask for help if you need it ...
Depression has been an issue for him. Not uncommon for diabetics. Keep an eye out for it, especially in the teen years when hormones cause havoc even for kids without physical "handicaps."
I think schools are now much better equipped to deal with curbing stigmatization. Teachers can counsel classmates to help them understand.
Depression has been an issue for him. Not uncommon for diabetics. Keep an eye out for it, especially in the teen years when hormones cause havoc even for kids without physical "handicaps."
I think schools are now much better equipped to deal with curbing stigmatization. Teachers can counsel classmates to help them understand.
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This is Sytes' wife again. Regarding HighDesertSage's post about getting a phone for her to monitor her CGM, I have a two Verizon Android phones that are compatible with the Dexcom that I'd be more than happy to part with if you need it. Since no one wants a toddler to accidentally call China, there are also some great parental control apps out there that would allow you to monitor or restrict her access to anything else on the phone (which will also come in handy during her teenage years, haha!).
MarvB
Well-known member
This is what I love about HT; though I may have chimed in early I literally had nothing to give the OP other than my support for what they’re going through. Then along comes the HT clan, spouses and all, and rallies around this family with real thoughts, ideas, first hand knowledge, etc.
Hats off to all you guys/gals for stepping up- this site is far more than hunting and I for one truly appreciate it!
Hats off to all you guys/gals for stepping up- this site is far more than hunting and I for one truly appreciate it!
Second that!
BTW - this is Sytes… How she tolerates me - is beyond my comprehension.
@JoMo , My wife is a hard charger that I've yet to see something stop her. Backcountry packing, kayaking, proud UM Griz alumni... Type 1 diabetes is a challenge. I've seen first hand though the world is hers - and your daughter's. She has an inner strength I believe developed due to her management of diabetes, certainly complimented by her parents.
geetar
Well-known member
I’ve got no advice but as the dad of a 3 year old daughter myself you have my love and prayers. I hope and pray things get better for your girl.
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