Juvenile Diabetes

[kel4han]

My daughter is 6, diagnosed 12-4-06. We are starting pump training this week minimed 522. We were going to purchase the Minilink for her as well, but she informed me that she doesnt want 2 sites. Between her diabetes, my diabetes, and watching my dad suffer the consequences of poorly managed care, I feel I NEED the minilink for my own sanity, and of course, her health immediate and long term. I find we are overly cautious of lows, its hard to judge especially summertime with swimming and all..what will happen in her sleep. She takes only 1/2 unit of Levemir at night, but some nights it is tooooooo much! She has an uncounted snack on swim nights, sometimes she will be low by 3 am sometimes high. Same old story. Tried moving the Levemir to earlier in the day, have been adjusting for months.

Do I do what I think is better for her health and go against her wishes for the minlink? What do you fellow Juvenile Diabetics think about all this minilink stuff? I would hate to cause burnout issues for her too soon. I am well aware of the contrversies over accuracy, reliability etc.of the minilink... And trust me, I would be just as cautious with her on the minilink or off the minilink, but I could use the nightime sanity. I dont even know how I will feel yet with her hooked up to the pump......I imagine another site would be ALOT for such a tiny girl. But I am stuck in constant worry/panic mode for both now, and the future. Very confused about it all.....

[rzrbks]

My gut tells me that you have to do the thing that makes you most comfortable as the Parent.

But I wonder if you've talked this over with your CDE and Dr and what they think.

Although I'm old enough to remember Eisenhower and Chubby Checker, my wife and I never had children, so my advice is very limited.

[notme]

I agree with rzrbks (and usually do). I think that you have to make the final decision on what makes YOU the most comfortable. Your daughter is young and probably frightened of two sticks. After a couple of days it will be old hat for her and you will feel better about her management. It will also make it easier when she is in school for control.

Talk to your CDE and have them talk to her also.

[xMenace]

I am a pattern person. I believe we follow consistent metabolic patterns.

I see two purposes of a CGMS. 1. is to learn your patterns: basal, bolus, exercise, etc. and 2. Monitoring: am I within the limits of my patterns?

I think you can effectively use this to determine her patterns and variances. I found that detailed strip testing uncovered a few pattern related things I never knew and never would have known otherwise. I highly suspect the reasons for her nightly lows and highs can be identified with effective use of a CGMS. Do this at the outset for basal profiling and bolus profiling, then follow-up say once every few weeks to verify no significant changes. She's growing, so she's always changing.

I wouldn't push the day-to-day monitoring. If she really knows the symptoms and knows how to treat herself, I wouldn't worry much.

One big question I have is her basal dosage. You say she only takes 1/2 unit of Levemir. That's .021 per hour. The 522 only goes down to .05 per hour. I think that's a major problem!

[kel4han]

Xmenace....I realized the .021 before we chose Minimed, but my logic is...with consistant basal testing....she does not need any basal from 10am-until she goes to sleep. She surely has some production on her own....So, I am thinking (we havent started training yet) that we could do .05 for just those hours of sleep, specific hours of 10pm-2am and then off from 3am until 6am and back on 6am to 10am that totals her .50 a day. ((make sense??))
She also goes through times where she does not need basal for a month, then back on etc. Thats why we chose to start pumping, the basal in the daytime causes lows, which made us have to change her ratios although I know from serious testing that they are set pretty great. Kids are so frustrating to manage...I think I have aged 20 years since her DX. Always growing, running, jumping, playing, getting sick. Completely exhausting.

[AMBlass]

The honeymoon period will end shortly enough, and once it does, you'll definitely want the pump there to make the transition to different basal rates easier! It will probably only be an inconvenience for a few more weeks, possibly a couple months, seeing as how she was diagnosed in December. I have met many people who had their honeymoon last longer than a year, I believe mine last about six-eight months... It sneaks up on you too. You start taking a little bit more insulin each day and then all of a sudden you realize you've tripled where you were at a month ago. It's kinda crazy.

As for your question... well, I'm a 21-year-old Type 1, and I was 8 when I was diagnosed, so CGMS weren't even around. I would agree with the other posters and say that if it helps you sleep at night, that's what you should do. Parents are always having to do things their children don't like because it's the best thing for them! This is just another to add to the list.

I think a good compromise to your daughter would be to switch on and off the minilink. You could have her where it 24/7 for a week, then take a week off, then go back on it, then off it again. Not only will it make your supplies last longer (as they are more expensive than the pump after awhile!) but you will still know how she "typically" reacts to X snack and X activity during her off-week and you'll notice if there are any changes in her BG trends during the on-week. I always thought if I went on the minilink I would do that. Just a thought.

[JediSkipdogg]

My personal feelings are that it needs to be talked over with everyone and EVERYONE must feel comfortable. What good is having a CGMS if she doesn't use it properly herself? Yes, it may provide a good sense of security, but it's useless without the want to use it.

My best comparison is saying that seat belts were still optional in cars. And a child turned 16 and doesn't want one and the parents want them in the car. What good is the seat belt if the child is never going to put it on?

I am 25 years old and have had diabets for 24 years. I have had my constant amount of lows. My mother use to worry about me at night on occasion too when I was young and played baseball. We DID NOT have all these fancy toys they have now days and yes, I did have some severe lows. But I'll say this, they were all treatable at home thanks to the good care of my mom and none ever resulted in any serious danger to myself and I have no complications from them.

When I have kids, if they get diabetes and don't want a CGMS, then they won't get it. If they want it, they will get it. I won't push technology that I think is just a feel good item on a kid. It can bite you back in the end. Ask Eri's Mom (a member on here.) She gives Eri great love and takes care of her as a fabulous mother should. However, she knows at times Eri cheats the diabetes system and there's nothing you can do as a parent about it. So talk it over with all involved and make a decision from there.

[AMBlass]

What good is having a CGMS if she doesn't use it properly herself? Yes, it may provide a good sense of security, but it's useless without the want to use it.


Well, considering the child is six years old, her ability to use it is irrelevant - of course she's not going to use it. She's six.
This isn't for the child, it's for the mother. By the time her daughter is old enough to actually look at, understand, and make adjustments herself, this form of the CGMS is going to be obsolete. It more of a question of whether or not to make the child "suffer" with having another piece of technology on her.

[jeggeman31]

My daughter is 6, ..... We were going to purchase the Minilink for her as well, but she informed me that she doesn't want 2 sites.....

Do I do what I think is better for her health and go against her wishes for the minlink?

I have a 7 year old daughter, and if I was faced with this YES I would go against her wishes. She is 6, and can't make sound judgements at the moment.

Try to do some research at your local library to see if they may have some age appropriate diabetes books that you and her can read. I think Animas use to make some sort of kid book ( I know one of the pump companies did)

She may be mad at you for a while, but in the long run it will be better.

[jeggeman31]

When I have kids, if they get diabetes and don't want a CGMS, then they won't get it. If they want it, they will get it.

I use to say the same thing, once you become a parent the ballgame changes 100%

[jeggeman31]

It more of a question of whether or not to make the child "suffer" with having another piece of technology on her.

How is a child going to suffer from having a CMGS on?

[AMBlass]

How is a child going to suffer from having a CMGS on?

I was being somewhat facetious, which obviously didn't carry through the internet. I just meant that the girl might be upset about having to have 2 sets in her... that's the "suffering" The mother was concerned about hooking up such a little girl to a lot of technology and that she might be upset about it. I didn't actually mean she'd be in pain because of it.

[kel4han]

I feel so many different ways here, still after replies. I have also questioned this in childrenwithdiabetes as well. Most parents with older children (age 10+) say of course, its the childs choice. But, at the age of six, she cannot understand the benefits, especially not the benefits to a mom that has "D" herself and would like a "mental break" from constant wonder of two of us with "D". Thats 10 injections a day, 30 finger pokes a day, and 5 lifetimes of worry between us both. I never feel like I am doing enough becuase I maintain great control for myself, but she is like a yo-yo. I know, she is a growing child, much harder to control. I freak myself out every day thinking that some day she will pay the price for our lack of control. Every day, every minute, times 2 of us, I worry. Worry is not healthy. I do all that I can to manage her numbers, and logging never shows patterns. No rhyme or reason. We test her about 10-15times per day. I feel guilty checking so much. I see my dad with his amputations, blindness, dialysis, and I see her. It makes me wonder if we have a genetic makeup that makes us more likely to have complications with even slightly higher A1c's. I guess, I know I will feel guilty in opting for another site with the minilink, and I need reassurance that it is okay to be an overprotective mom when it comes to this stupid disease. I guess I would feel guilty in whatever I chose, and it can never be good enough when it comes to your child. -Tears- S-i-g-h

[VinceF]

Have you asked her why she does not want 2 sites? She may think it will hurt twice as much or she might think she'll stand out too much or being 6 she might have some irrational reason. I must admitt 6 for me was 39 years ago and when I was diagnosed at 5 my mom boiled my glass syringe.

[VinceF]

It's a hard decision, your frustration brings a tear to my eye. We feel that frustration every day. I think you know what to do. I also think you need someone to say it's okay. It may help to see past today,tomorrow, next month, next year. Thinking back my parents made decisions I was not happy about but now I'm glad they made them for me.

[JediSkipdogg]

This isn't for the child, it's for the mother. By the time her daughter is old enough to actually look at, understand, and make adjustments herself, this form of the CGMS is going to be obsolete. It more of a question of whether or not to make the child "suffer" with having another piece of technology on her.

So mother can get up at 3 am every night and test. The devices don't work down the hall, so it's not like mother can be in her own bed and see what the reading are or hear the alarm go off when she hits 80. The daughter may hear the alarm and will just shut it up or try to get the two apart as far as possible. Simply put, she may ignore the purpose of it which makes it pointless to even wear. Yes, mom will get trends and all that, but if she already knows she may go low after swimming she already has a trend caught. BOTH sides MUST be in on this or I see it as pointless.

[Scarlett]

after speed reading through these posts, I went back to my diagnosis-I remember the DENIAL-does any kid go through this any more-I didn't take my insulin and ended up near death several times before I was OVER IT and realized that I hurt when I did it and I felt better when I paid attention and did what I was supposed to do-I can't imagine 2 sites and I've had this for 34 years-your 6 year old has a lot to go through before she adapts to Diabetes- GOD BLESS HER- and keep her in his care-it's tough and she'll get through this!

[catgalla]

My son is 6 and is a type 1 and was diagnosed when he was 4. He's been on the pump, Paradigm 715 for a little over a year and I know what you mean about being nervous about lows. But once you are at a point when you have her basal rates and carb ratio down you'll find she won't have as many over night lows. I wouldn't go against her wishes, she's probably going to feel uncomfortable with having a pump and being in school and stuff. During the summertime I only use the pump for boluses and use lantus for his basal so he doesn't have to worry about swimming and for how long he's disconnected. The only problem we have with him is he sneaks food so he tends to have highs a lot. We've tried to tell him how important it is for him to tell us what he's eating and it's not like we're telling him he can't have any certain thing but I think he thinks we're gonna tell him no. It's tough with kids. I'm also type 1 and on the paradigm 715 so it's a plus knowing how to work it. My advice is to be vigalent on testing and carb counting. Good luck. :)