Do you mind me asking…you said most days are good, some days are bad. Could you explain a bad day in your house? I ask, because being in the honeymoon stage, we are doing well with numbers and just kind of would like to be somewhat prepared on what to expect since I am clueless for the most part.
My son and I were talking today and I told him that he really needed to start thinking about what he wanted for Christmas this year, since every year gets harder and harder coming up with ideas on our own. He said…a new pancreas. I said, baby…I would give you my pancreas and take yours in a heartbeat if I could. He said…I wouldnt want you to do that. I said, but I am the mom and I call the shots and you wouldnt have a choice lol. I so wish God had chose me to be stricken with this. No child, mine, yours or anyone elses should have to deal with this on a daily basis. Yes, it may make him stronger. It may do a whole lot of good things. But bottom line is, it sucks!
Our “bad” days are chasing highs and lows. She plays soccer, so some days it takes us hours to get her at a comfortable level to send her to bed. When she goes really high, we often wait it out until the next meal since she is not on the pump. Since she is in puberty (I don’t know if boys will have it as bad), she goes extremely high when she’s about to start her period! I googled type 1 and menstrual cycles, and some literature suggests they have it worse than your “average” girl. One more thing to deal with! My personal “bad days” are worse when she wants to go to someone’s house for a meal or sleepover. I worry like crazy that she will go low. Although she is very mature with her disease, she is also very private. She tends to “hide” in the bathroom while she’s testing/injecting. My bad days come from my broken heart for her that she cannot go for pizza with her friends without alot of planning.
I agree, I wish I was the one with this and not her. It breaks my heart to know the cross these children have to bear. I take strength from reading posts from people here that are happy, functioning adults. These people are the one that give me strength and hope! The best advice I could give is just take it one day/one meal at a time. I try not to become too overwhelmed with the future!
I am very sorry your son was diagnosed. Twelve would be a hard age to have to adjust to diabetes, as the teen years are so difficult even without D. You express what I have felt and still feel today with such eloquence. Part of this will get a lot easier, such as the carb counting (it won’t be long before you will be able to rattle off every carb count for most of the food your son eats, as it will be committed to memory). I agree with another poster that getting a pump will make things so much easier and I hope you don’t have to wait a year if you do want to pump. I would challenge the endo or even find another if you want a pump sooner than the endo advises. But if you feel comfortable waiting or decide not to pump that’s okay too. Yes, a lot of this does become second nature (my niece has had D for five plus years now), life does go on much as before. I believe a cure will be found (and a viable therapy a lot sooner than later). Certainly, there are advances that will happen within the next five to ten years that should make managing this disease a lot easier. Hang in there!
My son plays basketball, baseball and track. Basketball doesnt start for a few months, but I cant say that I am not dreading when it starts.
I know life can change at any given moment (proven by diabetes), but my son isnt a sleepover type kid. So for now, I don’t have this as a concern. But it doesnt mean this couldnt change. I do worry when he is out with his friends at the mall or some other activity. I make him test before he leaves and then he tests 2 hours later and lets us know what his reading was.
I may sound naive. But with the pizza. The planning part? What do you mean? If I understand correctly…let say my son gets a call from his friends that want to go for pizza and he already had dinner. Then we treat that pizza just like another meal. Test, insulin for the carbs. Or do you mean just because pizza can cause readings to go high?
I agree…reading posts from happy, functioning adults really helps. Before finding this message board, every board I went to was gloom and doom. It literally had me scared beyond words. Again if I understand correctly, those people, the adults who have complication after complication, chances are didnt always manage their diabetes well.
All I want is my son to grow up happy. Live a long healthy life. If injecting insulin 3-4 times a day is what is needed to achieve this. Then so be it. I pray to God that a cure is found and that some day we can look back at our journey and know that it helped us grow to be stronger.
As for the horror stories, don’t forget that many of those people (if T1 and not T2) were kids when blood sugar was tested through urine (when the numbers were 3 hours old), and you were given a dose of insulin 1x or maybe 2x a day and expected to make your meals and life fit your insulin. there also wasn’t A1C tests either. The last 10 years have seen a real change with just keeping track of BG numbers. I even had one diabetes nurse said that we are still in the 1st generation of kids that will have so much more info and tighter control at a young age, and so there isn’t even any info to evaluate on how that will make a difference in the long run, although they do believe it will be significant in avoiding major complications down the road.
Just remember that things are very different now for kids with T1, and try not to worry too much about the future, you have enough to worry about on a daily basis!
Pizza plays havoc with blood sugar management (as does Chinese food and cheeseburgers and Mexican food and most fast food) because fat converts to glucose much more slowly and causes huge blood sugar spikes anywhere from 6-12 hours after eating those high-fat foods. Each of us has to learn how to “manage” these kinds of foods without throwing our whole day off.
I would disagree with alice above that it’s been longer than the last ten years. At least the last 25 of so have included blood sugar testing, multiple daily injections, A1c testing, etc. I’ve had T1 for 20 years and the only advances I’ve added in my lifetime are better insulins, pumps, and continuous monitors.
The point still remains that we are still in generation 1 though, you are still a very young person, and most people didn’t still really seeing complications until later in life, past 40’s and 50’s. i have talked to many people in the 30’s and 40’s who remember the major switch in treatments.
I wouldn’t say I’m a very young person at 31, but I will say that I agree that all of our odds are better at avoiding complications with the improvements we’ve made in treating Type 1. I was diagnosed before the DCCT, which taught us a LOT, but I think I was also lucky to have a doctor who treated me according to the latest methods (like MDI).
The one point I do need to make though is double-edged. Yes, it’s possible to live to be complication free and I think it’s important to treat your children as though complications are not an inevitability. I am 31 and healthy, thankfully, and have always been empowered to live fully despite diabetes. My doctors never told me I’d never have kids, etc. My parents were positive and proactive.
BUT by that same token, complications are not a punishment for poor control. We have members here my age and younger who suffer from neuropathy, retinopathy, etc. who have managed their condition well. We have lost two 13 year olds this year in the type 1 community whose parents were doing everything right. Diabetes is not fair and that’s what makes it scary. Its threats are real…but the huge majority of us live healthy lives and it’s important to stay positive.
You’re absolutely right to say that we shouldn’t go crazy with worry for the future of our kids. If my daughter develops diabetes someday, I’ll grieve its arrival, but I’ll also be confident, like you, that today’s advances provide her with a brighter future!
What everyone wrote here is true. One thing I’d like to add is what helps me is finding out about others who have T1. I think of Nick Jonas, somewhat newly diagnosed, or Sonia Sotomayor on the Supreme Court, who has had T1 since a child (the “dark ages” of care) and made it all the way to the Supreme Court!!
Just today my T1 daughter and I were going for our flu shots, and I made the obligatory statement “My daughter has T1 Diabetes”. One of the two nurses who were working the flu clinic chimed in “oh my sister does too, she was diagnosed at 22, she is now in her 50s” and the other nurse said she had a very good friend whose daughter was also diagnosed as a child. I asked them how they were doing and both said very well, had normal lives, successful pregnancies, etc. all we want for our kids. Now if I hadn’t said anything, I wouldn’t know T1 was in their circle, but by me sharing it I learned about others and it showed me hope that others have gone through the diagnosis and the initial shock and come out on the other side, so to speak, by living NORMAL, healthy lives.
I consider my T1 daughter healthy. She can do anything, she has to manage her condition (I hate the word illness) but if she takes care of herself, like we ALL SHOULD, she should be ok. That helps to keep me going.
Tried to reply to the actual post below, but there is no “reply to this” button!
You said…BUT by that same token, complications are not a punishment for poor control. We have members here my age and younger who suffer from neuropathy, retinopathy, etc. who have managed their condition well. We have lost two 13 year olds this year in the type 1 community whose parents were doing everything right.
I admit, I am overly sensitive. Not even a month into this roller coaster ride. But as I laid in bed last night feeling scared and woke up this morning with the same thoughts, it all came back to this post.
No, complications do not always come from poor management. I have had it embedded in my head that highs and lows can come even with the best management. But with those warnings, I have been reminded that you just correct the high or low and move forward. But it has been pointed out to me to expect these highs and lows and not to beat myself up over them. But honestly…was it necessary in a thread that is clearly from a mom whose child was just recently diagnosed to point out that two 13 year olds died whose parents were doing everything right? How do you expect a mom whose new to this to go from that statement to its important to stay positive? I went to bed last night and all I could think about was what you said about the two 13 year olds who died. I woke up thinking about the same thing. I don’t need kid gloves when being talked to, but really did you not think for a moment that it probably wasnt the best thing to say to a mom who has a son that is close to 13 years old and overwhelmed with everything that comes with diabetes? Telling me that complications can arise even with the best management would have been enough. Just saying…
My husband always tells me I should be a writer. Thing is…it took me 3 days to write my orginal post. I would go back to it when I had free time. When I am just spouting off the top of my head, I don’t always sound so eloquent!!! LOL
We have our second appointment on December 15th. At that appointment I believe they will offer my son the pen. Then our appointment after that is in February. If anything, I think I will wait until that appointment to bring up the pump. I know I don’t want to see my son wait a year for this. A year would take him right back to the beginning of the school year and I think there is enough going on in a teenagers life when school goes back in session. My hope is that the doctor will agree that when school lets out for the summer that Jerod is ready for the pump. This will give him the whole summer to adjust to the new way of doing things. If I understand correctly, because they are tweeking with my sons carb ratio so much, if he had a pump, it would require us to be running to the doctors office everytime to have the pump adjusted? So I assumed this is why they prefer to wait.
I am pleased with our doctors which is a good thing because finding a new endo that deals with kids is almost next to impossible. You would think living in a suburb of Detroit, there would be more options. But I had 2 choices unless we used an endo that didnt deal with kids. The practice we are going to, we know 4 other families that go there and all of them had nothing but good things to say about them.
How do you all handle theatres and popcorn? I had considered going to the movies yesterday with my son since he had the day off from school. But everything I read about popcorn had red flags.
Pizza being my sons favorite food hasnt been to bad. Typically his bedtime readings are 130-150. When we have pizza, he ends up around 170. I cant decide if I should change the amount of carbs that I am using for a slice of pizza or if I should leave well enough alone.
It took my niece three months to get the pump, even though the Pedi endo agreed right away to help apply for one. They discuss the different pumps; you have to get the literature from the pump companies (you can do that now), training in basal/bolus method, we had to see a nutritionist and social worker, CDE twice… Since it takes a while, I would apply sooner rather than later. You don’t have to do the pump start until you are ready. Movie theater popcorn can be evil; it’s better if you don’t put the butter on it or lightly butter it. I wonder if they put some sugar in the fake butter they use? We charge 15 grams for four cups (though it is five grams a cup). Sometimes it works great; sometimes it backfires. Which is why I think they put sugar in at some theaters or high fructose corn syrup. I can’t prove it, but I can’t figure out any other explanation.
Hey Jerodsmom. When he starts the pump you shouldn’t have to head to the dr.'s office everytime you need to adjust. You’ll be trained to work with the pump yourself. Our Dr. is available for phone calls to help dedide on adjustments. If things are really weird, I drop of logs of his numbers at her office for her to look at on her own time and call me back. It did take us a few months after deciding it was time and getting the ok from his Dr. It’s never too early to ask about it and do your own research on the different pumps.
Movie theater popcorn? My son has no problem with it. For him, it’s one of the easiest foods. We only go to one theater and I have emailed to ask the company for the ingredients in the butter. We’ve measured the size Small before so we always know it’s 7 cups of popcorn. With popcorn normally being about 5carbs per cup, we give insulin for that 35 carbs. Although scary, diabetes is about trial and error. Try the popcorn and try giving insulin for it. If he’s high, try more insulin next time. If he’s low, give less next time. Once you figure it out, it’ll be one less worry.
If pizza is only altering his numbers that slightly, I’d leave well enough alone.
Welcome!
My son 5yrs (dx’d @ 2) live in Montana. I am glad you found this site! Things will become second nature for you and your son, as they have for us. We all have good days and bad days, I expect it to always be like this as D is not as predictable as we wish it was. Live for the good and get through the bad and life goes on! Baby steps!!!
Do you give him the insulin before the popcorn or afterwards? From what I have read, one of the things that makes it difficult is because even knowing 7 cups is 35 carbs, they take the entire movie to consume it. My son is allowed 30 carbs of less for a snack. I think what I will try is him trying popcorn at the theatre, but going with 5 cups so technically he shouldnt have to insulin for it. Then test him a few hours later and see what his reading is.
I give the insulin before. You’ve got to remember that it’s going to take a solid 60-90 minutes before the insulin is working at its strongest in his body also. My son’s on a pump though. A few times I’ve given 1/2 up front and 1/2 over the next hour or so. Either way seems to work the same for him.
30 carbs with no insulin is a lot. If that’s what he’s doing now, it might be fine. Sometimes when I’m ‘guessing’ or trying something new I give 1/2 the insulin for it and see how it turns out. I don’t give any snacks for ‘free’ though. Good luck!
Just what we have found that works for us, we decide on the “before/during/after” depending one their BG. if they are high, we go ahead and do it before, if low, then after, and if they are right on then sometime after they start eating. one of our girls is still pretty little, so the endos are fine with after dosing. Like so many have already said, unfortunately it is trial and error, and every kiddo is different.
Our new dx’d daughter also gets her first 15 carbs no insulin. her own pancreas still seems to want to cover that. is that like your son? i know you said he gets 30 free. the working around a somewhat functioning pancreas is new for us, since our first daughter had no natural insulin when she was diagnosed, so no honeymoon.
