Basically, my problem is that my daughter is a normal 6th grade kid - which doesn't mesh well with type one diabetes, haha! She does obey me, but she clearly wishes I would not remind her to do her routines all the time - yet so often if I say nothing she appears to have forgotten. I feel like I am always nagging her, and I really don't want to cause resentment that might make her stop cooperating. We aren't using a pump, so when I read about what other families are doing I don't always understand the lingo. We are still trying to recognize patterns in her BG levels, so she sometimes has way out-of-range numbers that baffle me. And of course she's in a difficult time of life, anyway (puberty, middle school, etc.), so I just don't even know if I can prevent all this fluctuation. Do we ever feel like we have a clue about what's going on?? Just when I think I've got the hang of it, I read about someone whose child died of type one diabetes and I panic again... The stakes are too high. I can't mess this up. Help!
First of all, I'm sorry about your daughter's diagnosis (dx). But I'm happy that you found Juvenation, it has been a great support to me and many other parents and people with type 1 diabetes (T1D). You can come here anytime to vent or cry or ask questions or celebrate successes and you will find people who understand.
I will try to put in common short hand in parentheses, like I did above, so you can understand what I'm talking about and start to learn the abbreviations yourself. But never be afraid to ask questions here!
I'm pretty sure there is not a child's age that does mesh well with T1D LOL. But yes, 6th grade feelings of wanting to be just like all her friends and going thru puberty will make it harder, emotionally. Try to keep in mind that just like you feel bad and are grieving about this shocking diagnosis, your daughter is also grieving and having to come to terms with what diabetes (D) means in her life. It is a BIG change and she will feel mad, and sad, and confused, etc. Make sure you let her know it is OK to behaving those feelings and to let those feelings out. It is probably not too early to look at Diabetes camp for her (there are summer and camps held year round) where she can meet other kids with D and feel less alone. Your clinic also might have support groups for her. (Or there is a teen forum on here if you are comfortable letting her on the internet). It will get easier with time, but it takes time for each member of your family to come to terms with things and each one of you will not get there all at the same time and that is OK. (it just can be hard to remember).
Being on shots you are most likely using a long acting insulin (Levemir or Lantus) - this acts the same was as basal insulin with a pump. Then when you give a shot of short acting insulin (Novolog or Humolog or Apidra) to cover a meal that is the same as giving a bolus with the pump. Shots are often called MDI for Multiple Daily Injections.
Try to do the best you can to keep things as normal as you can for her. This probably means talking with her to determine what help she wants from you and what you are comfortable giving to her. Try to give her what she wants to eat just as long as she gets the insulin for it. If that means at home that you remind her to test before supper, measure her food and count her carbs and measure out the insulin and write it down, and then she just has to be responsible for it at school. But I would try to agree with her on what your plan is. Involve her as much as you can. For instance at school my 5 yr/o does his own BG tests but I do almost all of them at home, so he doesn't get burned out. Try not to make a huge deal out of forgetting to test or give a shot if it is only occassionally (1-2 times/week). That may seem like a low bar, but I can tell you as a parent who is responsible for a young child, that sometimes you do just forget. Another approach is to have a 5 minute meeting everyday with you, dad, and your daughter to look at her meter, review numbers, discuss any concerns. As she takes more responsibility, you can reduce the nagging because you'll know you get your time to discuss with her later. But if she's not there yet in terms of being pretty consistent, you have to work your way up to that.
There will be days that the numbers are just bizarre and are for no apparent reason. You'll learn to accept that. You'll learn to analyze patterns and adjust for them. And you might have to adjust a lot at first. That is OK.
Finally, yes, your child can die from diabetes. That fact SUCKS! But eventually it won't be at the forefront of your mind. I have found it helps me to remember that my child could also be hit by a car and killed, so if I want to spend all day worrying about all the ways my son could die, I certainly could. But it isn't going to be productive or healthy, and so sometimes I have to consciously choose not to worry. Your child can also live a long healthy life with D. You will do the best you can, and when its not perfect, you'll learn from it and do better the next time. The worry will never go away completely, but it will get better with time.
All my best to you and your family.
My daughter is 12 and was dx at 10. We found out 11 days before halloween! I understand everything you said, I think it is harder for them when they are dx'd later. My daughter is the same way she just wants to be like everyone else. I also feel like I am always watching Casie, what is she eating, did she bolus for that, etc. I try to look at it as that is the job I have right now. I need to make sure she is as healthy as she can be, I mean I do the same thing for her brother and sister. With her it is just more stuff. I think we all are afraid of the what if''s of this disease, we just try to concentrate on what we can do to keep them at bay. This site is a life saver! I know I can always come here if I am having a bad day and nobody is going to judge me or tell me I am worrying too much, they just understand. Casie's numbers somedays are all over the board, her dr keeps telling me it is just everything she goes through everyday and just do the best we can. This is the hardest job of being a parent! It would be easier if so much wasn't at stake, or if we didn't love them so much! I'm glad you found this site. I am always available if you need a shoulder or just need to talk!
I just wanted to write you both and tell you how much it means to me that you took the time to write me such comforting words. My daughter is on the pump now, and it has made dosing MUCH simpler. We still have to deal with figuring out carbs and all, but there are fewer needles and there are fractional doses... it's just much better than the shots. I am grateful for Juvenation. Even though our 1-year anniversary is fast approaching, I still feel like a newbie, and I can tell how valuable other D-moms are to one another. Thank you again.
While I'm writing, I have a more specific question than before: how do working D-moms get enough sleep? I wasn't checking Maddie's BG overnight much before, but her A1C was too high at her last checkup, so I realized that I need to begin doing that diligently. I guess I had let her go to bed with way too high numbers because I was afraid of an overnight low, and so she was going for long periods of time with high blood sugars. Even though her daytime numbers were okay, the overall average was not. So I've recommitted myself to sending her to bed with 100-150 (instead of anything over 150), which means I need to check her at 3am. Since I'm a teacher, I have the summer off, so it's not a problem for me to stay up until her 3am check, then sleep until 11am. (Okay, it seems like I'm a lazy slob when I sleep that late, but I remind myself that I'm getting the same amount of sleep as other people, just at a different part of the day!) But when school starts back up again, I won't be able to do that anymore. I'll just have to go to bed at a decent hour and get up in the middle of the night - assuming my alarm clock can wake me up! How do people get enough sleep in this lifestyle? I thought maybe I wouldn't have to do it EVERY night, but then last night I went ahead and checked her and sure enough, she was having a low that took TWO corrections to get back up into range. I'm afraid NOT to check! At least I've been able to check her without waking her up most of the time. It's bad enough that I have to get up and be sleep deprived, but I don't want her to be sleep deprived during the school year. Is there any other way??
Kimberly, when you get a good answer to this question, please let me know! My son is now 13, and has had T1D for 4.5 years. This past year (starting April 2010) he has dropped low (very low) in the middle of the night and has actually gone into seizures, etc. He has been to the ER or been admitted to the hospital at least 10 times in the last year. The doctors cannot find the cause, other than saying that the teenage years "are the worst" (hormones, etc.). They actually admitted him several months back for 9 days and watched his every move, thinking that he was giving himself too much insulin on purpose. I was so relieved when he dropped two more nights in a row while under watch so that they knew he wasn't causing it himself. At any rate, my point is that now I have to check his blood sugars 2-3 times a night, every night, to make sure he doesn't drop "for no reason." I usually stay up until at least 2:00 a.m., check him, then check him again at least once more before getting up at 6:30 a.m. Now that he's balancing out more, I may go back to checking him only once during the night, at least for a little while. Needless to say, I have been sleep deprived for quite a long time. So I feel for you, Girl!
I noticed that you live in Texas and someone mentioned earlier about sending your daughter to a diabetes camp. Texas has a great camp (Texas Lions Camp), sponsored solely by the Texas Lions. Go to http://www.lionscamp.com/ to get an application, then check around for Texas Lions in your area that may be interested in sponsoring her. (She won't be able to get in without a sponsor. But they totally pay for everything, so it is well worth the effort to check around.) Brian has gone every year since he was diagnosed, and it is the highlight of his year. He gets to hang around with kids "just like him" and thoroughly enjoys himself. Also, they have so many counselors and medical staff there that it is a totally safe experience for your child. I hope you'll look it up, if you haven't already. Your daughter will be glad you did! (BTW, the camp is in Kerrville.)
Wish I could have helped with your sleep deprived question, but I'm afraid I can't. Hopefully you'll get a good answer soon.
My daughter Celia will be 11 in July and was diagnosed in Aug 2009. She went on the insulin pump in January 2010 which has also made life with Type 1 easier. I found out a couple of weeks ago that it has been too easy. She has been doing such a great job, that at the end of the day I ask her how her blood sugar numbers are doing, but never really checked her pump. The school nurse would send home a daily paper with her #s that I would check, but found out that Celia hadn't been checking her blood sugars very well at night. Her A1C was 9.6! YIKES! I also wasn't checking her in the middle of the night. For two weeks I set my phone alarm for midnight & 3 am to check her b.s. I work at 7:30 am, full-time, single parent & over 40...talk about sleep deprived! My motivation to get up 2x a night (in addition to coffee & Diet Coke) was the tough love lessons given by our pediatrician. She came right out & told Celia some of the consequences of high blood sugars and the complications of diabetes. The thing that scared her the most was telling her that she could be blind as an adult if she continues on the path she is going.
In two weeks we brought her average blood sugar down, she is checking at least 8x a day and starting this past weekend, I am back to checking at only 3 am. I go to bed at 10, get up at 3, go back to bed & get up at 5:30 am. I check her at 7 am before I leave for work and then it is up to her during the day. Her older brother is at home with her and takes good care of her while I'm not there.
I don't know if there is any other way since Diabetes is 24/7. It's like having an infant in the house again. You get up in the night & try to catch a nap or sleep when you can. Celia is going to diabetes camp in July. That is when I will sleep thru the night...hopefully!
If you you figure out a way to not be sleep deprived, please share!
Dear Kimberly and Marianne,
My son was diagnosed last November 2010 a few weeks prior to his 9th birhtday and 1 week before his birthday party :-( Lucky in one way for my son I caught it early as I myself, my dad and brother are all Type 1 diabetics and I was testing Joshua for Ketones every 3 months and the last time I checked his Ketones were the highest so I brought him into the ER and they confirmed my WORSE NIGHTMARE!!!
However, things are doing better as my son took well to the shots which was our biggest concern. I can tell you that most moms of T1 kids don't get much sleep and worry constantly.
I see Kimberly that your daughter is on the pump so I don't have much experience with that as of yet but I hope all is well with your daughter and hang in there with the sleep deprivation. I wish I had an answer with regards to your dilemna for when you return to work.
For Marianne, if you son is not on the pump I may have a few tips for you. If your son takes Lantus at bedtime I have encountered a few problems when taking this insulin. To be honest, I monitor my son's sugar frequently before bed and I don't put him to bed if he is under 9.0. I noticed that he needs to be between 12-14 at at bedtime after his bedtime snack and then he wakes up between 7 (119) - 9 (150). Our hospital recommends this number for the AC sugars in the am for kids.
My main issue with Lantus is when I inject and there is blood when I remove the needle I make sure to check his sugars again in 15 minutes. It has happened to me several times and once with my son where we were bleeding and I may have hit a vein and our sugars dropped over 200 in 15 minutes. Now that night we happen to be high at bedtime but once I went to bed with 220 and in 10 minutes after taking the Lantus my sugars dropped to 50. It took over 2 hours each time to stabilize my sugars taking over 100 grams of carbs. Once I woke up in the night with my sugars at 40 and it was from then on in that I always check my sugars about 15 minutes after my bedtime shot of Lantus. I have mentioned this to my doctor and my son's and they have no answer.
So, if your son does not take Lantus then just ignore my advice :-) but if he does this may help with his problems of lows in the night if he just checks his sugars 15 minutes after injecting Lantus. I know if 15 minutes later my sugars are relatively the same then I can go to bed; if not I recheck in 10 minutes and wait until I stabilize and if need be eat some carbs.
Unfortunately, as my dad who has had diabetes since he was 1 years old and is now 71 "that is the nature of the disease" so it is tough to regulate and everything can impact your sugars from sickness, stress, hormones, lack of sleep, activity, travel, food, etc...
No one knows what it is like unless you are a parent of a diabetic or have diabetes. I always tell people this is a 24 hour//7day a week/365 day a year job!!!
Good luck to you all...
My son (as you see in the above post :-) was diagnosed in Nov. 2010 and I became a Type 1 diabetic while pregnant with my son 10 years ago. Please tell you daughter it is important to keep her sugars in check as I did not since I was so busy with a new born baby and my husband travelled ALL THE TIME and after many years of high sugars I developed something called, "Gastroparesis" in which my stomach no longer works properly and I am on an liquid/puree diet and can no longer eat solid food. THis is nerve damage to the nerve that runs from our brain to our stomach which was damaged due to high sugars.
While I did not take care of my sugars I am VERY strict with my son as he sees what I am going through and he actually worries when his sugars are high.
I can tell you between my giving myself 6-10 shots per day and my son 4 shots and checking his sugars, my sugars, counting carbs, etc...our schedule is crazy!!! Ironically, since my stomach condition I was on sick leave from work and have yet to return since my son became diabetic about 7 months after my gastroparesis was diagnosed. The doctor said stress is very bad for my gastroparesis so I have not returned to work and I am trying to get my sugars under control while managing my son.
I wish you well as diabetes is 24/7 and it MUST BE TOUGH being a single parent!!!
Just know there are other moms of diabetics out there who are willing to support you and know what you are going through. I have found this website to be fantastic since I cannot find other moms here in Montreal, Quebec Canada eventhough I posted a sign at the hospital wanting to meet other parents.
Lion's Camp looks wonderful! I wish my daughter would consider it. Right now, she's stuck in an anger/denial phase. She doesn't want to talk about diabetes except when absolutely necessary. She does well managing it, as long as there's not a lot of conversation involved. And forget meeting other kids with it - she would rather pretend she's not "one of them" than be comforted by knowing that she's not alone. Seems like she would really benefit by going to Lion's Camp, or by joining Juvenation, or by attending Tyler Type One meetings with me, but I can't get her to agree to it. I'm praying she'll give up this mindset ASAP!
I totally relate to what you were saying about things being "too easy." When Maddie was diagnosed, her a1c was too high to measure... over 14. Three months later, after being on shots, her a1c was 7.? (I forgot the decimal number). We were thrilled, but she had been experiencing a lot of lows, so I think that's why we were less rigorous than before about maintaining BGs. So when we returned for another a1c, it was up to 9.0 - and I was really deflated. Shortly after that we put her on the pump, and I really was encouraged by how much simpler it was to give her the proper dosages. We kept her numbers pretty well under control during the day, but at night it sometimes ran higher because I was afraid of overnight lows. When we went to her Endo last month I was REALLY disappointed to learn that her a1c was still 9.0, even on the pump. I had been operating under some misunderstandings, so the doctor cleared them up:
-- I need to continue sending Maddie's BG numbers to the doc weekly so he can adjust her basal and bolus rates. I had stopped sending them after a few weeks, because he hadn't made any changes and I thought it wasn't necessary. Eventually I hope to learn to adjust her basals and boluses myself, but in the meantime I'm going to continue sending in her numbers. We've already created varying rates throughout the day, and her numbers are much improved.
-- Loose BG control overnight will significantly raise her a1c because of how long that sugar is in her system. That seems obvious, but I guess it didn't occur to me. I was just worried about the danger of an overnight low that she wouldn't survive.
-- Tighter control will increase the risk of an overnight low, but it's more important than my getting a good night's sleep. I can sleep when she's grown up. Or when there's a cure. Or when there's a more efficient monitoring system. Or when pigs fly.
-- She should go to bed with a BG of 140-160, and I don't need to correct a 3am BG unless it's below 100 or above 200.
I guess I had just overgeneralized the endocrinologist's statement that my daughter can live a normal life and make diabetes fit into it! "Normal" to me does not include such invasive measures to control blood sugar. But LIFE is worth it, so I will be the "bad guy" and make this thing happen.
My son does not want to meet other kids with diabetes either but I will try to attend the next family outing with the diabetic foundation and see what happens.
Our doctor, nurse and dietician all say the same thing about being able to live a "normal" life. I guess they must mean after all the "work" we must do, in the end they can live a "normal" life but they are not the ones who have to calculate carbs, do shots/pump, worry, wake up in the night, say "no" to their kids when they want ice cream or cake or a sleep over, etc...
My son does run a bit high when he goes to bed so now I hope his A1C which he will be checking this week is not too high. Last time after being diagnosed with diabetes for 4 months the A1C was 8.6 and his doctor was happy with that.
Can I ask what benefits the pump has over shots? My son seems opposed to getting the pump when will be allowed after having diabetes for at least a year. Ironically, I am looking into getting the pump for myself but I am waiting for the wireless Omnipod to come to Canada although it is so expensive.
Jodi, here are the benefits of using the pump in our situation:
Oops! I must have hit the wrong button… trying to do this on a smart phone! Here are the benefits of pumping in our situation:
- She doesn’t have to be stuck every time she needs insulin. This is especially nice for my shy girl.
- Fractional doses! The pump can give 1.3 units, if that’s what she needs, instead of having to under dose to avoid getting too much insulin from the pen. Our pen could only give whole units.
- The pump keeps track of how much insulin is on board so you run less risk of stacking (overlapping insulin dosages and driving your blood sugars too low as a result).
- It looks a lot like a cell phone, so my shy girl doesn’t mind wearing it.
Except for summer camp I never wanted to hang our with other diabetic kids either. It never helped me.
Pumps are great because the base amount of insulin a person needs varies throughout the day. Pumps allow you to tailor it to what your body needs, then take extra insulin when you eat. There's a great book by John Walsh called "Pumping Insulin" that explains all the details and can help determine if this is the right time to try a pump. I took shots for 25 years and have pumps for 9... I'd never go back to shots.
- It can be programmed with your different basal rates, sensitivities, and boluses at varying times in your day, which is really nice. This saves a LOT of math work!!!
Jodi, thanks for the advice about the Lantus. My son used to take Lantus in the morning and in the evening, but with him dropping so low at night so often, the doctor's took him off of his nighttime Lantus and added the units to his morning Lantus. Actually they started out with less units than what he was currently getting day and night, then started adding more units of Lantus gradually until he started balancing out better. Taking him off nighttime Lantus has worked pretty well. He'll still have an occasional low in the middle of the night, but not low enough to go into a seizure. That has been quite a relief, believe me!
Also, thanks for the advice about blood after the needle is removed. Brian gives himself his shots (under my supervision) during the day, so I've never noticed the blood. But I will be more aware and see if that's part of the problem. His doctor has never mentioned this either, so it will be interesting to see what happens and to report the findings to the doctor if bleeding/hitting a vein is the case.
Brian tried using a pump twice (two different pumps, in fact), but doesn't like using one. Believe it or not, he'd rather have the shots. I just can't imagine having to take all the shots he takes. I think his problem with the pump was inserting and wearing the catheter. He's rather hard-headed and wouldn't take the catheter out on the day he should have and the insertion spot would get sore or infected. He would stretch the recommended days out by one more day, and that just doesn't work. Now he's scared to try again. He tried the MiniMed pump first, then about a year later he tried the Animas Ping.
Still praying for the cure so no one has to go through this anymore!