My son was Dx 5 months ago at the age of 4. This week after dealing with daycare and grandma trying to operate my son's pump, it hit me. I finally get why people say I am not a diabetic, I am someone with diabetes. I feel like my son is getting lost in the disease. Any suggestions on how I help my son? Concern mom.
I have been a diabetic for three years. i know exactly what you mean by him getting lost in the disease. like its taking over every aspect of his life. I suddenly realized how much a have to mention or talk about or deal with diabetes everyday. I found that the best way was to find some low carb food that i dont have to take an immediate shot for, and doing something that doesnt effect diabetes at all, like a movie, or a sleepover, takes my mind off of diabetes, if only for a while. Also, having someTHING(not someone, because someones judge) to talk to about all of it and something to go thru it with me helps too. Like, my Rufus bear. (its a diabetic bear that JDRF gave me) I hope my advice helps
It is frustrating but like most young children keep a consistent schedule if you can, especially with others helping. Then it will become routine for him. He will just stop do what he has to then go back to being a kid. Good luck and keep the faith.
Ive been diabetic for about 9 years, i was diagnosed when i was 4 years old and my mom always kept me on the same schedual. when i got the pump i got more independent. i know it can be very frustrating and i wish everything turns out well
If it's only been a few months, you're still in a learning stage (although I'm still learning new things and it's been 28 years!). But, things will become more automatic as you adjust to using a pump, etc etc.
I also think, esp for a small child, it's a careful balance between not being so overly stressed that your family can't live a normal life, while still maintaining tight control. I go through periods in my life where the pendulum swings one way or the other, but hopefully you'll be able to find settle into a more middle ground when you aren't using so much "mental energy" trying to maintain a complicated, pretty new routine.
I hope you can get some family member(s) well-trained enough in the next few months, where you could take a few hours off to go shopping or whatever without having to worry about his D! Occasionally, when I'm feeling overwhelmed about my BGs, I give myself an "afternoon off" where I still test and inject, but try not to worry about them at all as long as I'm somewhere in the 60 -220 range...
Hang in there and let us know if you have specific questions!
[quote user="Sarah"]
If it's only been a few months, you're still in a learning stage (although I'm still learning new things and it's been 28 years!). But, things will become more automatic as you adjust to using a pump, etc etc.
I also think, esp for a small child, it's a careful balance between not being so overly stressed that your family can't live a normal life, while still maintaining tight control. I go through periods in my life where the pendulum swings one way or the other, but hopefully you'll be able to find settle into a more middle ground when you aren't using so much "mental energy" trying to maintain a complicated, pretty new routine.
I hope you can get some family member(s) well-trained enough in the next few months, where you could take a few hours off to go shopping or whatever without having to worry about his D! Occasionally, when I'm feeling overwhelmed about my BGs, I give myself an "afternoon off" where I still test and inject, but try not to worry about them at all as long as I'm somewhere in the 60 -220 range...
Hang in there and let us know if you have specific questions!
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I agree with Sarah. I was DX when I was 6 and the first thing the doctor and nurses told my mom to watch my diabetes, but to let me be like the other kids and to not worry so much as to put stress on our family life not being normal because of it. it helped, because i have never grown up thinking diabetes has me, but i have diabetes. i also have adjusted a lot better than at least one other diabetic girl i know who was diagnosed later on whose mother didn't do that.
contact your local JDRF chapter to see if they can hook you up with a sitting once a week so you can go do your errands maybe? i didn't have any family adults around when i was little, and my brother was only 5years older than me, so he could watch me while she went to the store or something quickly..but not for hours at a time. she was connected with a woman who had experience dealing with diabetes and she would take me for a few hours every week so mom could go out for tea with friends or go do errands without worrying about me. (actually, she is now one of my mom's best friends now and my brother and i have called her "aunty eve" for the last 16years!)
Hi Mara, I was diagnosed in 1945, when I was 6. I can still remember how difficult it was during my childhood. Not much was known about diabetes back then. I have worked so hard to have good control. Now I have been Type 1 for 64 years and i am very healthy. You and your son can work together just like my mother and I did. He can have a long, healthy life like I have. It will get easier for both of you as time passes. Hang in there and ypu and your son will begin to see some improvement in his control as adjustments are made.
Thanks Everyone for the support and encouragement. It is so nice to have others that understand!!!!
I was diagnosed when I was 6, (I'm now 23) and at first you do kind of get lost in it. I think my parents had it much worse than me actually, since they were the ones worrying about this. I basically did what I was told (I was an angel, lol, probably not) and I actually don't have many clear memories of the first couple years. As I got older and took over more control from my parents, I also learned how to not let it define me. By the time I was in high school, all my friends knew I was a diabetic, but generally forgot unless I did something to remind them, like make comments about being "high". High school humor being what it is and all, it was quite funny. Don't worry about "getting lost". As you develop patterns and learn when to be concerned and when not to be, day to day life gets easier and what was once overwhelming will simply be "the norm" and there will be plenty of opportunities to your son to "define" himself in ways totally unrelated to diabetes. Best of luck!
It unfortunately requires so much attention. It affects how you feel and think too. The best thing you can do is figure out how to provide the consistency he needs to try and reduce the fluctuations from high to low all the time.
This requires eating as much as possible at the same times and as much as possible the same things. Being low is like not sleeping for 3 days, and being high is like somebody pusing on your temples in a hot room. Try concentrating and feeling the same with those things going on! Now, imagine, you flip back and forth between those two not once a day, but every couple of hours! Another thing is the dramatic drops and rapid rises in blood sugars make these things even worse (e.g., drop from 240 to 115 with an adjustment). I suggest testing in the morning before breakfast, a couple hours after the meal. Do the same for lunch and dinner. Of course, test before bed too to make sure he does not go to bed low. Remember that testing once does not show you whether the sugar level is dropping and rising. This means you can test and get 100 before bed, but the sugar may be dropping. There is no great way around this issue. You have to decide based on activity and how much was eaten before bed. You can also test an hour before bed and then at bed to maybe get an indication.
In conclusion, build the consistency in his life he will need to help avoid as many drops and rises in his sugar levels.
I know what you all mean. My daughter was diagnosed about 3.5 months ago, and while I try to keep things as normal for her as possible, I wake up, spend the day, and go to sleep thinking about diabetes! I guess I'm doing it so she doesn't have to. She's been amazing with everything. She found herself a very cool little purse in which she keeps all her supplies. She's excellent about testing, and excellent about counting her carbs and deciding how much insulin she needs.
Today was actually a pretty good day. I reduced her lantus last night by one unit because I knew she was going to her daycare today (and they stay very busy). She didn't need a shot for breakfast, and was just over 100 at lunch. She took one unit for lunch (which was a mistake) and ended up at 64 a couple of hours later, and didn't take a shot for dinner because all she ate was a cup of crab meat and 1/2 piece of bread (her choice).
Our biggest challenge is keeping her interested in foods we're used to counting for. For awhile she was great about having an egg every morning with either a small bowl of cereal or peanut butter toast, but now she's tired of eggs. This morning she called me to tell me she was having a piece of sourdough bread with butter! Super healthy, right? I had to convince her over the phone to at least add a piece of cheese to that.
Is it overwhelming him? Or is it more overwhelming to you? I know in the beginning of each our diagnosis I was so worried how it was affecting my boys. I think at the time it was much more devastating to me then to them. They were all underf five at the time of their diagnosis, but the thing that made the biggest impact on them was my reaction to it all. The heartbreak is all encompassing, and the worry can be so overwhelming.
I promise that over time it will get easier. Maybe not easy...but easier. Just keep swimming...just keep swimming. Sending much love to your family!