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Post by compeateropeator on Nov 5, 2018 0:51:49 GMT
My 8 year old niece was just diagnosed with type 1 Diabetes last week. We are all still reeling from this a bit. It saddens me so to see all that she will have to go through for the rest of her life. But it is her reality so we need to be help her live her life as normally as possible and learn good habits now.
I am looking for places to read and get some good information on how to help her manage this disease. I know that I can just google, but there is so much information out there it is almost overwhelming. The Peas always provide such good information/places to get good information/links so I thought I would also ask here.
Thanks in advance for anything that you can pass along.
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Post by pjaye on Nov 5, 2018 1:17:16 GMT
I know you mean well, but I'd let her own medical team handle it and the family should follow their advice and they suggestions initially.
It just muddies the waters when relatives, friends etc all get involved with conflicting information and advice and it usually just serves to confuse the family.
The "peas" are generally NOT good at giving advice on medical conditions (apart from a few who are actual health professionals), most of what I read on here is inaccurate at best and often completely wrong and/or dangerous. Sure you get a lot of replies, but quantity isn't quality.
Lots of people do things that aren't recommended and lots of people manage their own diabetes poorly - you won't know what is good advice and what isn't. And like many diseases things are constantly changing in how they are managed, what one person learnt 10 years ago may not be something that is recommended now.
Just be emotionally supportive and leave the advice and information up to the doctors who are actually seeing your niece. Read and show an interest in what she is being taught and support and encourage her that way instead of trying to add other (probably inaccurate) information into the mix.
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Deleted
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May 16, 2024 5:42:18 GMT
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Post by Deleted on Nov 5, 2018 1:21:54 GMT
My 8 year old niece was just diagnosed with type 1 Diabetes last week. We are all still reeling from this a bit. It saddens me so to see all that she will have to go through for the rest of her life. But it is her reality so we need to be help her live her life as normally as possible and learn good habits now. I am looking for places to read and get some good information on how to help her manage this disease. I know that I can just google, but there is so much information out there it is almost overwhelming. The Peas always provide such good information/places to get good information/links so I thought I would also ask here. Thanks in advance for anything that you can pass along. The best place for information is HER doctor. Seriously. Each diabetic is different. Let her doctor provide the information and links. What is good advice one T1 may not be good advice for another. |
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Post by compeateropeator on Nov 5, 2018 1:27:14 GMT
I know you mean well, but I'd let her own medical team handle it and the family should follow their advice and they suggestions initially. It just muddies the waters when relatives, friends etc all get involved with conflicting information and advice and it usually just serves to confuse the family. The "peas" are generally NOT good at giving advice on medial conditions, most of what I read on here is inaccurate at best and often completely wrong and/or dangerous. Sure you get a lot of replies, but quantity isn't quality. Lots of people do things that aren't recommended and lots of people manage their own diabetes poorly - you won't know what is good advice and what isn't. And like many diseases things are constantly changing in how they are managed, what one person learnt 10 years ago may not be something that is recommended now. Just be emotionally supportive and leave the advice and information up to the doctors who are actually seeing your niece. Read and show an interest in what she is being taught and support and encourage her that way instead of trying to add other (probably inaccurate) information into the mix. Thanks for your response. This is not for them (parents) necessarily, they have great doctors at a wonderful hospital. This is more for me to familiarize myself with everything. What types of foods to make/bring to events that she might be able to eat and easily calculate the carbs for, what to know about it, etc. I know no one who has a child with diabetes, so I just want to learn the basics without bombarding my brother and sister-in-law with questions. They are just trying to get by at this time. My niece came and stayed with me a lot. While I am sure it won't be for quite awhile, I would like to be able to have her come and stay with me again and I just kind of thought I could educate myself a bit on it. But I appreciate you taking the time to reply. |
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Post by compeateropeator on Nov 5, 2018 1:28:35 GMT
My 8 year old niece was just diagnosed with type 1 Diabetes last week. We are all still reeling from this a bit. It saddens me so to see all that she will have to go through for the rest of her life. But it is her reality so we need to be help her live her life as normally as possible and learn good habits now. I am looking for places to read and get some good information on how to help her manage this disease. I know that I can just google, but there is so much information out there it is almost overwhelming. The Peas always provide such good information/places to get good information/links so I thought I would also ask here. Thanks in advance for anything that you can pass along. The best place for information is HER doctor. Seriously. Each diabetic is different. Let her doctor provide the information and links. What is good advice one T1 may not be good advice for another. Thanks for the response. ETA: I guess advice was not the correct word to use, I would just like to learn some information about it and how to support her. |
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Deleted
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May 16, 2024 5:42:18 GMT
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Post by Deleted on Nov 5, 2018 1:40:55 GMT
I know you mean well, but I'd let her own medical team handle it and the family should follow their advice and they suggestions initially. It just muddies the waters when relatives, friends etc all get involved with conflicting information and advice and it usually just serves to confuse the family. The "peas" are generally NOT good at giving advice on medial conditions, most of what I read on here is inaccurate at best and often completely wrong and/or dangerous. Sure you get a lot of replies, but quantity isn't quality. Lots of people do things that aren't recommended and lots of people manage their own diabetes poorly - you won't know what is good advice and what isn't. And like many diseases things are constantly changing in how they are managed, what one person learnt 10 years ago may not be something that is recommended now. Just be emotionally supportive and leave the advice and information up to the doctors who are actually seeing your niece. Read and show an interest in what she is being taught and support and encourage her that way instead of trying to add other (probably inaccurate) information into the mix. Thanks for your response. This is not for them (parents) necessarily, they have great doctors at a wonderful hospital. This is more for me to familiarize myself with everything. What types of foods to make/bring to events that she might be able to eat and easily calculate the carbs for, what to know about it, etc. I know no one who has a child with diabetes, so I just want to learn the basics without bombarding my brother and sister-in-law with questions. They are just trying to get by at this time. My niece came and stayed with me a lot. While I am sure it won't be for quite awhile, I would like to be able to have her come and stay with me again and I just kind of thought I could educate myself a bit on it. But I appreciate you taking the time to reply. Patience. She won't be staying with anyone for awhile and her parents won't have answers until they have gotten some experience under their belt. Her doctor will first need to get her glucose levels down and they will all need to learn how SHE, as an individual, processes carbs, impact of her activity levels, and her insulin. No need to bombard them with questions right now that they can't answer and that websites are just going to confuse you because there are so many variables to this disease. |
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TheOtherMeg
Pearl Clutcher
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Jun 25, 2014 20:58:14 GMT
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Post by TheOtherMeg on Nov 5, 2018 1:45:42 GMT
My family has been quite involved with the Juvenile Diabetes Research Foundation for many, many years. We love this organization. Of course, your niece's doctor/family should be the first source of info pertaining to your niece's particular case, but for general juvenile T1D, the JDRF is a wonderful source of info and support.
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Post by compeateropeator on Nov 5, 2018 1:46:00 GMT
Thanks for your response. This is not for them (parents) necessarily, they have great doctors at a wonderful hospital. This is more for me to familiarize myself with everything. What types of foods to make/bring to events that she might be able to eat and easily calculate the carbs for, what to know about it, etc. I know no one who has a child with diabetes, so I just want to learn the basics without bombarding my brother and sister-in-law with questions. They are just trying to get by at this time. My niece came and stayed with me a lot. While I am sure it won't be for quite awhile, I would like to be able to have her come and stay with me again and I just kind of thought I could educate myself a bit on it. But I appreciate you taking the time to reply. Patience. She won't be staying with anyone for awhile and her parents won't have answers until they have gotten some experience under their belt. Her doctor will first need to get her glucose levels down and they will all need to learn how SHE, as an individual, processes carbs, impact of her activity levels, and her insulin. No need to bombard them with questions right now that they can't answer and that websites are just going to confuse you because there are so many variables to this disease. I was afraid of that...that I wouldn't be able to read up on it and know everything about it right away, but wanted to so badly.  There is so much info out there - you are correct it is very confusing. Thanks again. |
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Post by compeateropeator on Nov 5, 2018 1:47:10 GMT
My family has been quite involved with the Juvenile Diabetes Research Foundation for many, many years. We love this organization. Of course, your niece's doctor/family should be the first source of info pertaining to your niece's particular case, but for general juvenile T1D, the JDRF is a wonderful source of info and support. Thanks, I appreciate your response. |
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TheOtherMeg
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Post by TheOtherMeg on Nov 5, 2018 1:50:29 GMT
I know no one who has a child with diabetes, so I just want to learn the basics without bombarding my brother and sister-in-law with questions. They are just trying to get by at this time. My niece came and stayed with me a lot. While I am sure it won't be for quite awhile, I would like to be able to have her come and stay with me again and I just kind of thought I could educate myself a bit on it. You can take a class to learn these things! My mom, sisters, and I learned what to do so we felt confident when our nephew (who lives out of state) came to visit SoCal each summer when he was a little guy. (He's a young adult now, so doesn't need us all in his business now. lol) |
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Post by pjaye on Nov 5, 2018 1:53:45 GMT
What types of foods to make/bring to events that she might be able to eat and easily calculate the carbs for, what to know about it, etc You need to cook (almost) normally, she is the one who is going to have to learn to navigate her food choices. Make sure you have protein and complex carbs as food choices, not all simple carb food such as white bread, pasta, cake etc. I don't have much experience with kids who have diabetes but I don't think they calculate carbs like they used to, and they don't cook special meals for people with diabetes either...it's all about making healthy/good food choices from what is available. Here's a legitimate (Australian) website link: www.diabetesaustralia.com.au/what-should-i-eat |
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kate
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Post by kate on Nov 5, 2018 1:58:59 GMT
We have students at school with T1D, and WOW have things changed since my cousin was diagnosed (she's in her 50s). Yes, her world will change, but it's a very different disease now than it was when I was young. I have a friend and colleague (mid 40s) with T1D who has no other health issues and lives, dare I say, a glamorous life. I'm not trying to paint over the difficulties and very real dangers of living with T1D; I'm just pointing out that it may not define your niece's life. And I'll echo TheOtherMeg in saying the JDRF is a great resource. |
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Post by compeateropeator on Nov 5, 2018 1:59:18 GMT
I know no one who has a child with diabetes, so I just want to learn the basics without bombarding my brother and sister-in-law with questions. They are just trying to get by at this time. My niece came and stayed with me a lot. While I am sure it won't be for quite awhile, I would like to be able to have her come and stay with me again and I just kind of thought I could educate myself a bit on it. You can take a class) to learn these things! My mom, sisters, and I learned what to do so we felt confident when our nephew (who lives out of state) came to visit SoCal each summer when he was a little guy. (He's a young adult now, so doesn't need us all in his business now. lol) My mother and I were talking about this, if it was possible to take a class to learn signs, what to do, etc. I know that it will be a long time before she will be able to come and stay but I really hope that eventually it will be feasible. I work for a hospital (but in IT) so I will check to see if we have classes that are offered. And I really do understand that this is jumping the gun, but sometimes it feels like I have do something to understand this disease. |
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Post by betty on Nov 5, 2018 2:03:14 GMT
My son was diagnosed T1 at age 4. I think it is great that you want to know more and be supportive. You would not believe some of the hurtful and stupid things people said to us after he was diagnosed. I'll skip medical advice and go for other helpful advice  Once they have their personal medical plan worked out I'm sure your niece will stay with you again. The best thing you can do is learn how to do whatever she needs (she may need injections, or have a pump or continuous glucose monitoring, etc.) so that her parents can have a break. That was hard for us in the beginning because we had no family nearby and had just moved to our current location. Treat her just like you did before and just like her siblings, if she has any. So many times over the years a friend, neighbor or even family member would want to take my older 2 kids for ice cream, to McD's or to kids eat free night at the local pub but not take my son because of his diabetes. They were scared, I get it, but it was hurtful. You can also learn all you need to from her parents and be on the school forms to volunteer on field trips and at events like field day. In elementary school my son had to have a chaperone or the school had to hire a nurse to attend field trips with him if we weren't available per county rules. Having an extra person to take a field trip would have been a life saver when work was hectic. My son was scared to death of the random traveling nurses the school would hire but LOVED his regular school nurse. My heart goes our to your niece and her family. It is a tough diagnosis for little kids. |
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scrapngranny
Pearl Clutcher
Only slightly senile
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Post by scrapngranny on Nov 5, 2018 2:12:13 GMT
The first few months are the hardest. In the beginning the pancreas is still partially functioning and her numbers will kind of be all over the place. This is celled the “honeymoon” phase. My oldest grandson is a T1 diabetic. He was diagnosed 4 years ago.
You will be surprised how fast the family will adapt to it. It’s a horrible shock at first.
I wish her the best on this journey.
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Post by revirdsuba99 on Nov 5, 2018 2:14:01 GMT
My family has been quite involved with the Juvenile Diabetes Research Foundation for many, many years. We love this organization. Of course, your niece's doctor/family should be the first source of info pertaining to your niece's particular case, but for general juvenile T1D, the JDRF is a wonderful source of info and support. great suggestion. She will learn to manage most of her needs including shots. |
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Post by compeateropeator on Nov 5, 2018 2:14:36 GMT
My son was diagnosed T1 at age 4. I think it is great that you want to know more and be supportive. You would not believe some of the hurtful and stupid things people said to us after he was diagnosed. I'll skip medical advice and go for other helpful advice Once they have their personal medical plan worked out I'm sure your niece will stay with you again. The best thing you can do is learn how to do whatever she needs (she may need injections, or have a pump or continuous glucose monitoring, etc.) so that her parents can have a break. That was hard for us in the beginning because we had no family nearby and had just moved to our current location. Treat her just like you did before and just like her siblings, if she has any. So many times over the years a friend, neighbor or even family member would want to take my older 2 kids for ice cream, to McD's or to kids eat free night at the local pub but not take my son because of his diabetes. They were scared, I get it, but it was hurtful. You can also learn all you need to from her parents and be on the school forms to volunteer on field trips and at events like field day. In elementary school my son had to have a chaperone or the school had to hire a nurse to attend field trips with him if we weren't available per county rules. Having an extra person to take a field trip would have been a life saver when work was hectic. My son was scared to death of the random traveling nurses the school would hire but LOVED his regular school nurse. My heart goes our to your niece and her family. It is a tough diagnosis for little kids. Thank you. When I have been Facetiming with her I have been just doing and acting as we have done before. I try to be nonchalant about talking about it, being sympathetic but just "well that is what you have to do" type answers. She was showing me the American Doll Diabetes kit that she got yesterday and how it had everything thing that her kit did...plus a pump. She said she didn't have a pump, but the pen made the same sounds that hers did.  Then she said she had to go so she could have her snack but she had to get poked twice. I just talked about the yummy grapes she was going to have.  It just breaks my heart. |
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Post by Basket1lady on Nov 5, 2018 2:40:26 GMT
My son was diagnosed T1 at age 4. I think it is great that you want to know more and be supportive. You would not believe some of the hurtful and stupid things people said to us after he was diagnosed. I'll skip medical advice and go for other helpful advice Once they have their personal medical plan worked out I'm sure your niece will stay with you again. The best thing you can do is learn how to do whatever she needs (she may need injections, or have a pump or continuous glucose monitoring, etc.) so that her parents can have a break. That was hard for us in the beginning because we had no family nearby and had just moved to our current location. Treat her just like you did before and just like her siblings, if she has any. So many times over the years a friend, neighbor or even family member would want to take my older 2 kids for ice cream, to McD's or to kids eat free night at the local pub but not take my son because of his diabetes. They were scared, I get it, but it was hurtful. You can also learn all you need to from her parents and be on the school forms to volunteer on field trips and at events like field day. In elementary school my son had to have a chaperone or the school had to hire a nurse to attend field trips with him if we weren't available per county rules. Having an extra person to take a field trip would have been a life saver when work was hectic. My son was scared to death of the random traveling nurses the school would hire but LOVED his regular school nurse. My heart goes our to your niece and her family. It is a tough diagnosis for little kids. Thank you. When I have been Facetiming with her I have been just doing and acting as we have done before. I try to be nonchalant about talking about it, being sympathetic but just "well that is what you have to do" type answers. She was showing me the American Doll Diabetes kit that she got yesterday and how it had everything thing that her kit did...plus a pump. She said she didn't have a pump, but the pen made the same sounds that hers did. Then she said she had to go so she could have her snack but she had to get poked twice. I just talked about the yummy grapes she was going to have. It just breaks my heart. She will get used to the finger sticks really fast, and her fingers will develop some calluses that will help. Most days I don't even feel my finger sticks. She may also get a continuous meter in time, and a pump. It really depends on her numbers and insurance. My old endo said that the treatment and living with diabetes is an art. Not one thing works for all people. Some foods may work for one and not another. Same thing with activity. It will take about 6 months or so for her to get comfortable with the routine and to figure out what works and what doesn't. I'm always setting an alarm for one thing or another, especially when I'm busy. Travel or a change in routine is tricky because you forget the timing of it all, meal times are off, and the foods are different. If I make something I'm pretty good at figuring the carbs (and adjusting if there is more processed food or more whole grains), but if someone else makes the food you don't always know what goes into it. I would really encourage you to listen your your niece and her parents. If you know of someone else who can eat a certain food and not have issues, but your niece says it can cause levels to fluctuate, trust them. Let your brother be a little obsessive and protective right now--it's a big responsibility to learn overnight. The ADA and JDRF are good resources. I didn't go onto the Australian website, but know that other countries measure blood glucose and insulin in other measurements and the numbers aren't even close. They mean the same thing, but the terminology is different. If you live in the USA, you may want to stick with US websites in the beginning. |
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Post by pjaye on Nov 5, 2018 2:45:51 GMT
I didn't go onto the Australian website, but know that other countries measure blood glucose and insulin in other measurements and the numbers aren't even close It was just a link to appropriate food choices, nothing about monitoring. |
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Post by compeateropeator on Nov 5, 2018 2:52:59 GMT
Thank you. When I have been Facetiming with her I have been just doing and acting as we have done before. I try to be nonchalant about talking about it, being sympathetic but just "well that is what you have to do" type answers. She was showing me the American Doll Diabetes kit that she got yesterday and how it had everything thing that her kit did...plus a pump. She said she didn't have a pump, but the pen made the same sounds that hers did. Then she said she had to go so she could have her snack but she had to get poked twice. I just talked about the yummy grapes she was going to have. It just breaks my heart. She will get used to the finger sticks really fast, and her fingers will develop some calluses that will help. Most days I don't even feel my finger sticks. She may also get a continuous meter in time, and a pump. It really depends on her numbers and insurance. My old endo said that the treatment and living with diabetes is an art. Not one thing works for all people. Some foods may work for one and not another. Same thing with activity. It will take about 6 months or so for her to get comfortable with the routine and to figure out what works and what doesn't. I'm always setting an alarm for one thing or another, especially when I'm busy. Travel or a change in routine is tricky because you forget the timing of it all, meal times are off, and the foods are different. If I make something I'm pretty good at figuring the carbs (and adjusting if there is more processed food or more whole grains), but if someone else makes the food you don't always know what goes into it. I would really encourage you to listen your your niece and her parents. If you know of someone else who can eat a certain food and not have issues, but your niece says it can cause levels to fluctuate, trust them. Let your brother be a little obsessive and protective right now--it's a big responsibility to learn overnight. The ADA and JDRF are good resources. I didn't go onto the Australian website, but know that other countries measure blood glucose and insulin in other measurements and the numbers aren't even close. They mean the same thing, but the terminology is different. If you live in the USA, you may want to stick with US websites in the beginning. Thank you for your response. A good thing (if there is such a thing) is she is a rule follower. So I feel pretty confident that she will be able to get into a routine and follow through with what she is told she needs to do. Now if it was her brother that would be a whole other issue. I guess time and getting into routines are what I need to keep reminding myself are important. |
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Deleted
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May 16, 2024 5:42:18 GMT
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Post by Deleted on Nov 5, 2018 3:23:42 GMT
Serving sizes , fiber, water and exercise.
Her parents will give you the list. You don’t stray from that list.
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psiluvu
Pearl Clutcher
Posts: 3,217
Location: Canada's Capital
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Post by psiluvu on Nov 6, 2018 1:49:43 GMT
Serving sizes , fiber, water and exercise. Her parents will give you the list. You don’t stray from that list. I don't agree with this. My dd (19) was diagnosed in April and there is NO "list". She can eat anything, and as much as she wants, she just has to calculate the carbs and adjust her insulin accordingly. She does tend to limit carbs and eat very healthy but that is more a 19 yr old who wants to maintain a healthy weight than to do with her diabetes. She will sit around with her housemates and eat cookies and ice cream if the occasion calls for it. There is nothing off limits. She spent 5 days in the hospital at diagnosis and many appointments with nutritionists, diabetic nurses and endocronoligists and not one mentioned anything about fibre at all. She was also told she definitely won't be as thirsty and won't need to drink near as much as she drank before OP your niece is young but I am sure that her and her family will adjust quite well (honestly they have no other choice) My dd was told that she can look into getting a pump after about a year because she had so many variables in her life, (busy uni student, living on her own first time, hockey goalie, volunteer, part time employee) they want to make sure her levels are correct and maintained before a pump. With your niece she may be able to be on the pump quicker because her life may be more routine and levels easier to regulate. It is a very scary diagnosis at first but there are many new possibilities in treatment and products to manage it. The one thing that drives my dd crazy is people who go on on and about how awful it is and how wonderful she is to give to prick her finger and give herself a needle 4 times a day Her grandma is bad for that. DD always say "what does she expect me to do make a huge production 4 times a day. it is less than 10 minutes out of my day not a big deal at all." Good luck to your niece and her family I hope they have an easy transition to their new normal. |
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Post by tkdmom on Nov 6, 2018 2:23:21 GMT
Another good site is Diabetes.org form the American Diabetes Association. I use a lot of their material in my education programs. It will give you a basic understanding of what is going on. If your niece's school does not have experience dealing with a student with Type 1 diabetes the site has a good educational plan. Includes what the school needs to have a plan and back up plan for, Teaching plans for teachers to follow for classmates. Schools will also hire a diabetes educator to come in and educate the staff if pushed.
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Post by compeateropeator on Nov 6, 2018 3:01:33 GMT
Serving sizes , fiber, water and exercise. Her parents will give you the list. You don’t stray from that list. I don't agree with this. My dd (19) was diagnosed in April and there is NO "list". She can eat anything, and as much as she wants, she just has to calculate the carbs and adjust her insulin accordingly. She does tend to limit carbs and eat very healthy but that is more a 19 yr old who wants to maintain a healthy weight than to do with her diabetes. She will sit around with her housemates and eat cookies and ice cream if the occasion calls for it. There is nothing off limits. She spent 5 days in the hospital at diagnosis and many appointments with nutritionists, diabetic nurses and endocronoligists and not one mentioned anything about fibre at all. She was also told she definitely won't be as thirsty and won't need to drink near as much as she drank before OP your niece is young but I am sure that her and her family will adjust quite well (honestly they have no other choice) My dd was told that she can look into getting a pump after about a year because she had so many variables in her life, (busy uni student, living on her own first time, hockey goalie, volunteer, part time employee) they want to make sure her levels are correct and maintained before a pump. With your niece she may be able to be on the pump quicker because her life may be more routine and levels easier to regulate. It is a very scary diagnosis at first but there are many new possibilities in treatment and products to manage it. The one thing that drives my dd crazy is people who go on on and about how awful it is and how wonderful she is to give to prick her finger and give herself a needle 4 times a day Her grandma is bad for that. DD always say "what does she expect me to do make a huge production 4 times a day. it is less than 10 minutes out of my day not a big deal at all." Good luck to your niece and her family I hope they have an easy transition to their new normal. Thanks for the response and optimism. My niece also can eat anything but they have to calculate the carbs to adjust her insulin. She was only diagnosed on Oct 29th (my sister-in-laws birthday  ) so they are still in the learning curb stage. They did adjust the calculation formula for her on Sunday because her levels are now down around 180 from the 300s. She is young and I know will adapt and I agree there is no option but to. It just makes me so sad that she has to go through this. Best wishes to your daughter and I am so glad that she is able to not let it define her and is continuing to live her life to the fullest. I am really hoping that they have some great breakthroughs with treatments in years to come...hopefully sooner rather than later. |
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Post by bc2ca on Nov 6, 2018 4:19:37 GMT
Our nephew(25) was diagnosed at 8 and, as we often took him for the day, we needed to learn along with everyone else what he needed. Making sure to have proteins with carbs is what I remember most about the early stages, but the parents should give you guidance. Pricking fingers and self-injecting just become part of the routine and staying on a consistent sleep and eating schedule is important. Type 1 diabetics have gone on to become everything from professional athletes and Olympians, to singers, actors and even a Supreme Court Justice. |
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Post by pattyraindrops on Nov 6, 2018 4:39:33 GMT
I have had type 1 diabetes for 40 years. I got it when I was 9.
I second the ADA, juvenile diabetes, and door advice given above.
Now for some unasked for advice. I know this is tough. I know my dad almost put his fist through the wall when I got it. I know my mom hoped I would die quickly because she didn't want me to have a long, painful death. I found out these things after I had it for decades when I was an adult. It is natural to feel sad.
That said, get past it as fast as you can. Someone above said not to let her diabetes define her. I TOTALLY agree with that. I can't tell you how many people feel sad for me, completely ignoring the full life I have lived. I can't tell you how many people when they see me, sometimes after years, and the first and sometimes only thing they ask is, "how is your diabetes?"
This is the beginning so of course you will talk more about it, but as time goes on, make sure the majority of your conversations have no mention of diabetes unless she initiates it. She needs to feel like she is still your niece, not the "diabetic".
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Post by compeateropeator on Nov 6, 2018 5:45:06 GMT
I have had type 1 diabetes for 40 years. I got it when I was 9. I second the ADA, juvenile diabetes, and door advice given above. Now for some unasked for advice. I know this is tough. I know my dad almost put his fist through the wall when I got it. I know my mom hoped I would die quickly because she didn't want me to have a long, painful death. I found out these things after I had it for decades when I was an adult. It is natural to feel sad. That said, get past it as fast as you can. Someone above said not to let her diabetes define her. I TOTALLY agree with that. I can't tell you how many people feel sad for me, completely ignoring the full life I have lived. I can't tell you how many people when they see me, sometimes after years, and the first and sometimes only thing they ask is, "how is your diabetes?" This is the beginning so of course you will talk more about it, but as time goes on, make sure the majority of your conversations have no mention of diabetes unless she initiates it. She needs to feel like she is still your niece, not the "diabetic". Thank you so much for your response. While I know that this is treatable and she (and all of us) will adapt, hearing all the positive responses from people living full, productive, and happy lives is very uplifting at a time when I have so much sadness and fear. |
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Post by compeateropeator on Nov 6, 2018 5:46:55 GMT
Our nephew(25) was diagnosed at 8 and, as we often took him for the day, we needed to learn along with everyone else what he needed. Making sure to have proteins with carbs is what I remember most about the early stages, but the parents should give you guidance. Pricking fingers and self-injecting just become part of the routine and staying on a consistent sleep and eating schedule is important. Type 1 diabetics have gone on to become everything from professional athletes and Olympians, to singers, actors and even a Supreme Court Justice. Thank you so much for your optimistic words. They are so much appreciated at this time. |
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Post by pattyraindrops on Nov 7, 2018 8:20:29 GMT
Our nephew(25) was diagnosed at 8 and, as we often took him for the day, we needed to learn along with everyone else what he needed. Making sure to have proteins with carbs is what I remember most about the early stages, but the parents should give you guidance. Pricking fingers and self-injecting just become part of the routine and staying on a consistent sleep and eating schedule is important. Type 1 diabetics have gone on to become everything from professional athletes and Olympians, to singers, actors and even a Supreme Court Justice. And even moms! I am a biological mom of 3 children. I had some complicatons and after my first son I debated on adopting, but was still able to go ahead and go through pregnancy twice more. I know not everything is available for every diabetic, but the world is ours to really LIVE in. And so much has happened medically since I got it. We didn't even have home blood testing back then. We had urine testing that we did in a test tube! The advances are happenin so quickly that children diagnosed today have that much better medical care and living abilities. |
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iluvpink
Pearl Clutcher
Posts: 4,288
Location: Michigan
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Post by iluvpink on Nov 7, 2018 13:37:31 GMT
Be supportive and back up her parents/doctors. That's the main thing.
Insulin and technology have changed care for those with Type 1, it's constantly changing. But generally these days a good number of people, especially children and teens have fast acting insulin, insulin pumps and continuous glucose monitors. For the most part the only diet they are to follow is the same one we all should be eating with treats on occasion. Most children with type 1 will eat just like they did before, maybe a little healthier. Some parents will keep their child's diet the same, some will improve it a little and others will try very low carb diets. As long as the child's pediatric endocrinologist is supportive and they are managing the numbers well, the child is doing well emotionally, it's all good.
Sometimes they will do things that may not make sense to you. Sometimes they may do thing one way one day and something else totally different the next time you see them. Things change and the body doesn't always react the same way, treatment may change, technology might change etc. Most importantly what may work for an eight year old may not work for a twelve year old or a seventeen year old. Physically and emotionally.
I would say unless they say otherwise, to just make the same foods you do now. The only thing I would change is if she is allowed pop/juice etc to buy diet/lower carb versions for her. But also keep regular available if her blood sugar goes low. If you would like to have her over for sleepovers/babysit etc then you will need to learn more. Her parents will train you on that. If you are willing, that would probably be a huge help to them. My parents and sister are very close to us and when dd was diagnosed at age five, they were ready and willing to learn how to test her, give shots, carb count etc.
As far as technology my dd was diagnosed in 2006. She checked her blood three times a day at first and got two shots a day and had a certain amount of carbs she could eat and HAD to eat at very set times. It changed after a few months and continued to change. Now she's 18, has a continuous glucose monitor that is very accurate and only tests her blood by poking her finger once or twice a day IF that. Her CGM alarms when she goes below or above a certain number and goes through her iPhone. I can see her numbers on my iPhone and mine also alarms, no matter if I'm home with her or at work an hour away. She has an insulin pump that we will soon be updating so that it can suspend insulin for a short time if her CGM shows she is low or going low. None of this is perfect by any means, a cure would be SO much better. But it's also far far better than ten or even five years ago.
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There is so much info out there - you are correct it is very confusing. Thanks again. 
Then she said she had to go so she could have her snack but she had to get poked twice. I just talked about the yummy grapes she was going to have. 
It just breaks my heart.
) so they are still in the learning curb stage. 
