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Control???

Discussion in 'Parents of Children with Type 1' started by dbz2988, Nov 11, 2009.

  1. dbz2988

    dbz2988 Approved members

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    How many of you with kids that are now beyond the teenage years, who grew up with diabetes, ever had their diabetes completely under control? I'm being told by the diabetes educator that "we can get there" (between 80-180 consistantly). The only time I saw his number consistant, or consistantly good, when he was at diabetes camp this summer and was monitored constantly and changes were made daily for the first 4 days.... Unfortunately, there is no set schedule and it is difficult to have a set daily schedule when there are 2 households involved. Plus he's 14 so he's going to friends houses, etc. What are your thoughts?
     
  2. MissEmi

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    You know, I talked to a lady once who you could say had "control," she freaked out over a number over 110, and didn't treat anything above 70. She had an a1c or like 4.something. She also had no life. I'm 17, not over a teen yet, but I just thought I'd say that it's asking a lot for a doc/CDE for a teen to be 80-180 all of the time, because of all of the hormonal changes we go through.

    --Emily
     
  3. Connie(BC)Type 1

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    I hate the word control!

    Diabetes does control ME, but I don't control it, I MANAGE it to the best of my ability!
     
  4. Corinne Masur

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    Control

    I honestly never know what to say when people ask me if my son's diabetes is well controlled yet. Usually I say, "No. I don't think it will ever be controlled. We just do the best we can each day".

    But do some people feel that their children's diabetes IS controlled?
     
  5. kiwimum

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    That word 'control' is like a swear word in our house! So is 'stable'.

    I always wondered how you can control something that changes everyday for reasons that are sometimes known and sometimes not.
     
  6. Toni

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    With cgms we had evening numbers in the mid to high 200s, which took four solid hours to come down. Overrode the pump and gave 1 extra unit, an hour and a half later 2 extra units (she had 4.0 IOB and not moving). Put temp basal on with the second 2 unit override to give her another unit more than she would have had via basal (from 2.3 to 3.3). That is pretty aggressive and it did work. This has happened before. That four units of insulin IOB should have kicked in sooner. So her body does not always cooperate. No, even with cgms, cannot always get to 80 to 180. Often can, often can get 80 to 150 even. But not reliably. CDE has not dealt with Type 1 directly or it's possible some Type 1s CAN reliably keep to target, but not all of them and, unfortunately for us, not in this house. P.S. Now on the ADULT forums, I have noticed a lot of the Type 1 adults can keep to very low targets reliably so there is hope for when they are grown.
     
  7. StillMamamia

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    My thoughts are not very nice when it comes to anything D-related.;)

    I think there is no other word really when someone asks about D, is there? People just assume that all you have to do is keep BGs within their acceptable level and that's it, without taking into account the different variables which will influence the BGs.

    I don't like the word control perhaps because I feel like we don't have any.;) We just do the best we can and manage D as you would manage a domesticated lion - sometimes tame, sometimes wild, but most of all, unpredictable.
     
  8. dbz2988

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    Thanks everyone. I'm having a hard time grasping "under control" myself. We can get him pretty level but then something happens and it starts to climb... or he'll have lows. To me, it's hard to get a teenager to be constantly on top of their care. Would we like them to be, absolutely! Can we monitor them, yes we can... but do we stop them from doing things, like a normal teenager such as sleeping over friends houses, playing sports, etc. We can't ALWAYs be there at this age... not like when they are little. So how do you monitor them to ensure that they are doing what they should be when not around you? We've tried calling him, texting him..... and it works, but he just gets upset and annoyed. I'm afraid harping on him to much may have an adverse affect where he'll protest his care all together. When he is home, we constantly remind him.... within seconds he'll forget, so we remind him again and this goes on and on. The other problem we are having is that when he was in 4th grade, he was diagnosed with ADHD. (that's another long story).... well, he is now a freshman in high school and is having a lot of problems with school work. He is failing all but 1 class. The teachers have all spoken to the guideance counselor asking if he's ever been testing for ADHD because he shows the classic signs. He did have ADHD on his IEP, however, when diagnosed with diabetes it was removed because other members of the family and his new PCP thought that his focus and attention issues all related to diabetes (he was diagnosed with D in 7th grade) and that he was misdiagnosed in 4th grade with the ADHD. They (the dtr, D educator and other mbrs of the family) do not want to do anything about ADHD until his numbers are "under control". I understand the importance of it and how any medications could possibly have an affect of his numbers, however, I'm afraid the longer we wait until those numbers are "under control", the worse school is going to get and so on....
    Anyway, sorry about the rant but this is really stressing me and his dad out. His dad has been there, dropping out of school in 9th grade for the same issues he's having, except, dad didn't have the diabetes in the mix.:(
     
  9. StillMamamia

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    Ok, I think, if I may suggest this, is to try to step away from all these people putting pressure on you guys. It will be hard, but I think you need to focus on two things right now - empowering your kid and establishing a trustful and healthy endo/patient relationship.

    I would be frank with your endo about the stress you are feeling. D is enough stress already, getting feedback that you're not doing enough or not the right away is not the way to handle things. The endo, CDE are there to work with you guys, to give suggestions, to help you see a different way of managing things. They shouldn't be there to stress you out.

    Of course, if you are easily stressed out, then you have to work on yourself there.;) I'm a worry-wart, so I can understand.:eek:

    I would also seek the guidance of a counselor, preferably someone who has dealt with families with T1 D. Take your whole family to see one, so you can get some pointers on what to do.

    Look for camps maybe for your kid?

    Call ADA for info on the counselors in your area and camps as well. CWD also has info on the site for camps I think, and support groups.

    Good luck! Being a pancreas is not an easy job.;)
     
  10. dbz2988

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    I wish we could step away! Unfortunately, it is bio mom and her mother... apparently he had an appointment last week with the educator that we did not know about so we are just finding out this information! They have been a thorn in our side for a long time. My husband and them do not see eye to eye and even though they are supposed to agree on any decisions regarding Jr, they don't and Mom and/or grandma makes all of the decisions regardless of how my hubby feels. My husband talked to the educator last night and express his concern. She didn't respond to it, she just said that "we can get to those numbers". She ignored the school issue.

    He did go to camp this summer. His numbers were level and great for the 2 weeks he was there. He was very active and constantly monitored. Things are different when he's home. As I said, unless he is constantly reminded over and over, he's a space case and forgets.

    I do stress easy. :rolleyes: Especially when it comes to him!
     
  11. spamid

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    Someone posted this meaning of control a few days ago, can't remember who?? but I think its the greatest definition I've ever heard.
     
  12. Mom2rh

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    Yeah, that definition is crap. I don't believe it. Never having a high or low? Yeah right.
     
  13. EmmasMom

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    As much as we all hate the term "controlled" there is a certain level of "control" that is required to be safe and healthy. I know that the teen years are very difficult for so many reasons, but the risk of complications really start to build in the teen years. If his A1C is too high or he's having problems doing the basic D management, changes may need to be made. If he's not... well... then he may be fine until he's a little older and ready to be more responsible. (Without knowing what his control problems are it's hard to say)

    I think pushing for numbers below 180 sounds reasonable and healthy in a 14 year-old. He's never going to be in that range all the time, but it should be the "goal." Obviously there are going to be times that he's higher than that and lows happen and life does get in the way, but if he knows to test (a minimum of 4-6 times a day) and how to correct highs and treat lows and he has help adjusting his dosing on a regular basis the big picture should still be OK. If those things aren't happening... it may be time to make some changes.

    Your situation sounds very complicated and I'm really sorry that you're dealing with so much. I hope it all turns out well. :) There is no such thing as "stable" in type 1 D which is why it's so much damn work. Hang in there.
     
  14. twodoor2

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    John Walsh, CDE and prolific diabetes author, once said that even the best controlled diabetics (Type 1) are in range only 70% of the time. I do think with the help of such devices such as CGMS, this percentage can be improved, but it's always a lot of work/managment.
     
  15. mom2kenny

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    This sounds Soooo much like Kenny! I have actually been trying to get him tested for add for 2 yrs now.(non cooperating school) Kenny has to be constantlly reminded what to do.(he forgets too) some times I have to tell him the same thing 3 times in 10 min. He is only passing 2 classes so far this year. But, Kenny sees school as mainly a social scene!! Teachers say his mind is always somewhere else, not on class. I actually make him do his homework every night. Does he turn it in? NO. he "forgets". Lost forever. He is totally distracted all the time. Never finishes what he starts, can't keep his mind on one thing. School says it is a teen thing, but I don't know. But I want every possibility of add ruled out before I just let him fail. I think it's a tough call with teens, especially teens with d. They just want to be like all their friends, just hanging out, going to the game, movies, ect. Definitely tough for them.
     
  16. Boo

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    My D son is 14, and does not have ADD. He is a straight A student. We do, however, have many of the same issues as you with regards to his self care...or lack thereof. Over the 5 years since his diagnosis, his A1Cs have been pretty good (generally high 6's). However within the past year, a lot of changes have been going on for him. His numbers are ALL OVER THE PLACE, but mostly high. He is now fully in the throes of puberty, he is still adjusting to a cross country move, and I have slacked off quite a bit in my part of his D maintenance. He does most of his own testing correcting and carb counting now, and I must say it isn't going real well. :eek:

    I've stopped logging numbers regularly, and when I do look back at the history on his meter, I inevitable see many (really) high numbers that he neglected to mention to me (and I hadn't asked about). Many times when he does check his blood sugar, we'll see a really high number...I'll ask about it, and he'll say, "oh..I guess I forgot to bolus for {whatever**". Unfortunately, that whatever was 4 hours ago at this point, and he has been high ever since! And the worst part about it was that 8 times out of 10, I had even reminded him to do the bolus. He said he would, and then forgot.

    I guess what I'm trying to say is that I do think some of it is just age/stage related. I am quite sure that the ADD just compounds the problem, as does the issue of two households.

    Mammamia gives good advice. I think you need to get a handle on this now, before it gets much worse. If his care decisions are to be made jointly, and they are not being handled that way, maybe it is time to revisit the lawyer/court/custody agreement. It sounds like it would be very helpful to get all parties to sit down together (bio mom, bio dad, endo, and ADD specialist) to hash out a care plan that everyone can be on baord with.

    Hang in there. Here's to hoping they come out the other end of the teenage years without complications, both physically and emotionally!
     
  17. dbz2988

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    OMG... Jr is exactly the same except the school is 100% on board with the ADD. I guess the most frustrating part is that we've already been through the diagnosis stage with ADD in 4th grade and now everything is being blamed on the diabetes instead. We are also being told it's "normal teenager" stuff. I just don't see it. I have several nephews, I was a teenager once and my husband was diagnosed with ADD as an adult (he lived through it in school and knows what he went through!).... I just don't see this much "forgetfullness" in other teens. It's really to the extreme. We joke that a dust partical floating by his face will catch his attention and everything else disappears from his mind! He's explained it as his head is spinning on his shoulders. I just don't know what to do. Our hands truelly are tied because we don't have much say in what the ultimate decisions are. My husband is so frustrated because he's been there, done that and see's Jr going in the same direction. It's scarey.
     
  18. dbz2988

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    One good thing is that he does remember to test before meals and snacks, bolus when he should (sometimes he does forget the correction though) and when his calorie king book is not available and he doesn't know the carbs, he doesn't do to horrible with the carb guess.... When the is in the 200's... some people freak out and consider that absolutely horrible. Yes, it's not the best but it's not worth freaking out over. We do what we can to bring it down. This weekend, when we had him, he was in the 200's about 4 times (Friday through Monday morning), he had 1 low. Saturday, he only tested 3 times.... he didn't get up till 11 and didn't eat breakfast.... so he only tested at lunch, dinner and bed time snack. That was brought up in the appointment apparently. We had no idea that his BG had been high because the last time we saw him was last Monday and they were between 107-190 that night. AND we didn't check his meter.... shame on us for that I guess for not checking. I would just expect that if there was such a concern, something would have been mentioned. We would have monitored more closely. We stopped monitoring that closely when he went back to school. We have him every other week during the summer, so I would log everything when we had him for the week. We haven't had our normal visitation schedule (seeing him less due to being a teenager and wanting to be with friends etc). So I guess, we will not expect to be kept in the loop going forward. We will go back to being on top of it so the ball doesn't get dropped again, however, attention issues at school still concern me. At this point, he's already been warned that he's going to have to go to summer school for HEALTH class (of all classes!!!) and he's only allowed 2 classes for summer school! Otherwise, he's going to stay back. That is were he is headed!!!:eek:
     

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