Yes it is heart-breaking to say the least. As a mother we want to be able to fix it. Kiss it and make it go away. I think that is the hardest part for me. I can’t fix this for her.
Maybe because we got the pump so quickly, I didn’t find it to be harder than shots.
I have cried many tears for my daughter… I have many times wished I could have it and not her. It would be so much easier. I too have had to come to my own resolve about not being able to fix it for her… but still the feeling of helplessness lingers as a Mom…
Oh me too. Especially at night when I go in to her room to check her before I go to bed. For some reason it really gets to me then. I keep reading that a cure is around the corner and I so hope this is true.
I talked to Destiny some more about the pump today after school. We went to some pump websites together and she agreed to try the Omnipod demo. So I filled out the info. She told me that she is still scared that the pump can mess up and all the insulin can dump in to her body causing her to die in her sleep. So now I have a new question. Since I know what her fear is any suggestions on how I can deal with it? She has always been scared of her diabetes more at night and her fear has always been dropping to low in her sleep. I try to assure her that I will continue to check her blood at night like I have done since her DX. She seems to be perfectly happy with running high but low scares her. Has anyone else dealt with a child that felt this way or ever felt this way yourself? I really appreciate you guys giving me some clue on what questions to ask. I have gotten farther with her today than I have in a while and I’m really excited about it.
My daughter has been on the OMNIpod for about a year and loves it!! Kristen has been on pumps for about 10 years… and there are so many safeguards built into each pumping system that it is impossible for Destiny to get TOO much insulin. It is very common for children with type 1 to have these fears. One thing that helped with my daughter when she was younger was a child (baby) room monitor. Some how this seemed to reassure my daughter that I could hear her if she needed me. I think they make them now to be able to hear her and for her to hear you. THis will give her confidence and hopefully lessen her fear… hope this helps…
I think the fact that there are so many more variables is a little overwhelming after shots. All I could do before was change his basal up or down. Now I can change it up or down at all times of day, put it on a temporary rate, etc. I can also extend boluses and change the carb factor by one carb instead of big amounts allowed by the 1/2 unit syringes. The results are well worth it - but it is more to think about.
Well you actually are giving her a ratio - you just don’t know what it is, which is what is upsetting to me that your endo has done it this way. You can get just as much control knowing what your ratio is. If she is getting 56 carbs for breakfast, with 8 units, then she is getting 1 unit per 7 carbs. So if you give her another 7 carbs, you can add another unit. Or if she eats 7 carbs less, you subtract a unit. Lunch looks more like it’s 1 unit per 8 carbs, and dinner is probably 1 unit per 8.5 carbs. So then you keep logs and if you are low three days in a row at the same time, then you can adjust the insulin that is “responsible.” So if she’s always low after breakfast, then you could change her ratio to 1 unit to every 8 carbs. Give that three days and see if it’s better. And you can do that with every meal. And if it’s high at the same time you just do the opposite until it’s in range at that time.
After school was when lantus would cause my son to be low - so that makes sense that her ratio after school is basically 1 unit for 15 carbs - basically those extra carbs are probably covering for the low in the afternoon. Most kids need very little basal insulin during that time, and since the lantus is constant, it can produce a low around that time.
Hopefully that makes sense. I don’t think the ratio thing is much more complicated, and I think it’s worth the flexibility it provides. I would bet it would cause better control because she would be more willing to follow the regimen, even if all her meals aren’t exactly the same number of carbs anymore.
Lastly - you said she isn’t playing basketball because of the lows. The book I was talking about - Think Like a Pancreas, is written by a guy named Gary Scheiner who has also made himself an expert on sports and diabetes - so that might help. He has a section in the book about what to adjust when playing sports. My son has to cut his basal insulin in half, and only dose for half of his carbs while playing high intensity sports, so giving her a bottle of gatorade right before she plays might make her feel safer. You can always fix a high at the meal after the game. That’s our attitude anyway.
Have you watched Caleb’s videos? His mom is a member on here - and she has made some great videos of him putting on the Omnipod, and talking about diabetes. You can find them on youtube, but they might be on here somewhere - her name is Lorraine. My son loved watching them before he got the Omnipod.
I will discuss that with her in the morning before she goes to school. I will also tell her about you daughter using that pump and that she really likes it. I’m really excited about the progress we made today. We actually had a conversaition about her diabetes without her telling me I didn’t understand. It was just so much easier today than usual. I found out that she gets more scared when she runs low then when she is hi because of a time right after she was diagnosed that I had forgotten about. It was before we changed her Endo and she got up one morning, did insulin and started eating breakfast. Shortly after she started eating she started vomiting so she had insulin onboard but I couldn’t get her to hold any food down so she started to drop. I didn’t have anything sweet in the house because I had cleaned out everything when we found out she was diabetic so she ended up dropping to 30 and passed out. I panicked and called an ambulance. So she said she can deal with being high because the worst it does is gives her a headache but the shaky feeling that comes with her dropping reminds her of that day. Since she has been so high for awhile now she feels low before her levels are even in the normal range and as soon as she feels shaky she steals the snacks or starts eating glucose tablets from her kit to avoid “feeling low and like she is going to pass out”. So many things make so much more sense to me now but also brings on some new questions. Would it be ok for her to eat free foods even though her blood is not in the normal range? I mean so she feels like she is doing something to keep from dropping low enough to pass out but at the same time she isn’t sending her bs right back up. Also how many free foods would it be ok to eat?
No I haven’t but I will look for them. May make it more real for her than the people on the website. Thank you so much for all your help.
Thank you and I think I’m going to try this with atleast her dinner dose to see how it works out which I’m figuring it will be such a load off of all of us. Seems like the guilt she feels for wanting more and the guilt I feel for having to say no will be a lot less. I can’t change the other two meals for now because of school but she goes back to her Endo May 25th and we are going to discuss that with her. I really appreciate this so much.
Oh one more question. How would her correction work into this? We are still pretty much correcting at every meal and snack. The sliding scale she is on is 201-250= 1 unit
251-300= 2 unit
301-350= 3 unit
351-400= 4 unit
400- above= 5 units
I can’t reply to the one below - it won’t let me, but my first questions is - do you have to correct at breakfast? Because if you do - then her basal insulin is probably not enough.
If you don’t have to correct at breakfast, and are talking about fixing the dinner ratio, then I would keep track of numbers 4 hours after dinner on days when she isn’t high before dinner - and not let her have a snack until 4 hours after either. If she is in range 4 hours after being in range, then you know the ratio is right. THEN you can address the correction factor. I would start with what you have - one unit per 50 over your target according to what you have listed. See if that works. If she ends up low, then you change it to one unit per 60 over, etc.
If she is really never in range before dinner - then you would have to make some sort of change at lunch in order to get her dinner number in range and test it. I don’t know if that helps - it’s all clear in my head . …
It’s not letting me reply to your last comment either but any ways. We are adjusting her basal insulin right now. I fax her numbers in last week and they went up to 26 units of Lantus on it and then on Wednesday of this week they went up to 28 units so as of right now we are still having to do corrections with breakfast. I was just thinking if I could give her more freedom with Dinner then maybe it wouldn’t be so hard for her to stay within her carb range on the other two meals until we can get her A1C down and get her on the pump. I’m still a little confused but I’m sure it’s me being that I’m up at 2 am waiting to do her 3 am check because of the increase of the Lantus.
If you are in the middle of fixing the basal insulin, I would wait before you change anything else. Fixing the basal might help bring her down slowly too so that she isn’t so shocked by the normal numbers and feeling low all the time. If you are relying on meal-time insulin to bring her down so much, then she probably feels worse more of the time.
We are trying desperately to get a CGM - my son was more interested in that than a pump originally for all those reasons - sports, sleeping etc, but it’s become a fight with the insurance for us. Most people (but not all) that I know who got the Minimed with CGM are actually still using the Dexcom because they like it better. I also know many people who like the Navigator - it’s just too big for my son when he is also wearing an Omnipod. Omnipod and Dexcom are supposed to be integrating sometime soon too, so I’m hoping we can get the whole package deal eventually!
Thank you guys and I will look into that. Now I’m freaking out about my other daughter. I started another discussion about her. Please check it out and let me know what you think. Thank you again.
Watched the videos. Not with her yet because she had company tonight and couldn’t get her to sit still long enough watch anything. I think she will enjoy them. I did. Amazing little boy.
diabeticmom2007… My daughter was just diagnosed in November at the age 11. The dietician put her on a carb controlled diet as well. The first thing she did when we got home from the hospital was to sneak a carb loaded treat. When I realized that she had done that, I asked her why and she said that she was soooooo hungry and couldn’t stand it. In my opinion and many others that I have since talked to (such as her pediatrician (who is her basic diabetes caretaker right now), the CDE and other dieticians) that there should not be any restrictions set on her carb intake. However, I do not allow her to eat anything that she wants as well. She can’t eat ice cream right before bed because her blood sugars spike a few hours later. Things like that. If she wants ice cream with her dinner or even breakfast, I allow it. Since I made these new changes, she has not cheated.
I also agree with others on the site that you should take over her diabetes management and let her take a break. It is alot of responsibility for someone that young to have all the time.
I wish you the best of luck with your daughter and hope the issue resolves soon.