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Help with a teenager that's on his own.

Discussion in 'Parents of Teens' started by truck2ff, Sep 3, 2010.

  1. truck2ff

    truck2ff Approved members

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    This is long, bear with me. My son is 8yo and was dx last august so we're still fairly new to D. DS is pumping now (since June) and was on MDI when he was first Dx. I think we're doing a pretty good job managing his care and he amazes me every day, but something has come up at work and I've decided to intervene, but I'm struggling with resources and what to do next.

    I'm a career firefighter and our department sponsors a group of FF Explorers that get FF training and do ride alongs on our rigs. They're good kids (16-20yo give or take) I met one of them through a family friend several years ago when he was about 16 and had just been Dx with Type 1. Well, he's 19 now and he's in our explorer group and showed up for a ride-along on our rig last week. He's at least 40 lbs lighter than when I saw him last. After asking around I found out he's been hospitalized several times in DKA over the last several years and I'm pretty sure he's not doing much for his care right now.

    He really loves the FD and would love nothing more than to do this for a living, but at the rate he's going I doubt that he'll live that long. I managed to get out of him what kind of regimen he's on and I'm not that familiar with it. He has no real help in managing this, doesn't count carbs, seldom tests, and has no insurance and very little money for the supplies and insulin even if he wanted to do a better job managing his D.

    He has no endo, because no one will see him without insurance. The last direction he got in his care was when he left the hospital several months ago. I confirmed his insulin, when he takes it, they have him taking 40U of Novolin-N and 40U of Humalog in the morning mixed and 40U of Novolin-N in the evening. How can this be?

    I want to help him, but I need some more info on how he should be doing this. Shouldn't he be taking humalog or Novolog at his midday meal and to cover snacks? I think we could help him get close on I:C ratios and his correction, but I can't figure out how he's not crashing when he takes the 40 units of humalog in the morning, am I missing something? I figured If he stayed conservative we could get him in better shape till we could find an endo that would see him. I figured anything would be better than him walking around in borderline DKA all the time. I'm open to any suggestions. I think he'll listen to us and even if he doesn't I don't think I could live with myself If I didn't try to help him.

    I have great insurance and my kid's endo is one of the best in our area. His CDE has us page her even when she's not working. I feel like he's had the best care and we've gotten the best training available. This other kid has a hell of alot stacked against him with very limited resources. He needs help.:(
     
  2. sarahspins

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    Could you buy him a copy of think like a pancreas or using insulin? Either of those would be a step in the right direction... even if you wanted to read them yourself and try to assist him by offering advice, it would be better than nothing. However, it might not be exactly legal for you to do so, but if you approached it more like "I read that you should do this, you can read it and see if you agree" kind of way, then it's less like you're offering medical advice, and more just common sense "here's how to help yourself" advice.

    While seeing an endo or a CDE would be helpful, long term it may not really provide him with much if he can't continue to see them because of the expense or inability to make an appointment without insurance.. in any case, he has to be provided with the tools to manage his own diabetes.. it CAN be done without the extensive oversight of a doctor who is highly trained in diabetes. When I was first diagnosed, I was not only uninsured, I was pregnant, and I didn't qualify for pregnancy medicaid... I didn't see a CDE or an Endo when I was diagnosed and first put on insulin.. my OB/Gyn gave me my initial dosages and advised me on how to increase as I needed to, but really left me on my own for a majority of the decision making (all he cared about was that my #'s were not insane - and they weren't, because I was technically honeymooning at the time) and I literally fought through it on my own.. I figured out everything I could from the internet. The hardest part for me was paying for enough test strips.

    If he is already super-high from poor management, it's likely that the 40u of Humalog in the morning isn't going to drop him like a rocket. Poor management alone contributes to a fair degree of insulin resistance, even in a T1 who may be underweight, which means that as long as he's uncontrolled, the insulin he is taking will be somewhat less effective - especially if he's running high most of the time. It's hard to really imagine that is the case if he's taking 120u a day, but it's not completely impossible either. If you can spare anything for him, like test strips, I can guarantee that it will be apprecated. The cost of managing diabetes without insurance is immense - I know, I've BTDT, and everything helps.
     
  3. MyBoys'Mom

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    Does your state have the higher risk insurance pool run by the govt yet? I think that would be a first step - help him get some kind of insurance so he could get a physician. He could be taking the Novalin, maybe, because isn't it available without a prescription?

    I agree with the PP about the books. I learned so much from "Think Like a Pancreas". It discusses things in a completely realistic way and I think a young man would be engaged by it.

    He seems at that tough age where he's in the world by himself, but ill-equipped. I have a 20-year-old son. He's bright, but he and his friends just do such self-destructive things sometimes.

    I'm sure this boy would love to have a mentor if you're willing to take that on. He probably has no idea how to go about finding out about high-risk govt. insurance and applying for it. Our CDE told us once about how shocked she is by how many kids' parents aren't engaged with their kids' diabetes. It's something that I think all of us here can't even fathom, but I guess it happens. This poor kid probably never got a break, but is trying to do the right thing.

    Please let us know how things go. Once you bring someone into the CWD family, they're kind of like one of our own kids :)
     
  4. truck2ff

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    Thanks for the ideas. Just got home from work so I hadn't had time to reply since last night. I'll look into the book and maybe the calorie/carb king book we've used for our DS. I have supplies I can help him with. I even have a fair amount of lantus pens and novolog pens that we have from when DS was stll on MDI. I think the Novolin-N and humalog are his best bet for now because I think he gets them at a very reduced cost from a local clinic and the lantus and novolog would probably mean more injections and he's barely managing two injections right now.

    As far as the subsidized insurance, I doubt that he could afford even that so I have to do some more investigation. If could get him in for an intial exam I think I could help him adjust his dosing after that.

    His parents have been out of the picture for awhile. Dad was killed when he was a baby and mom lost it after that. A realative with a fair number of her own family challenges has tried to raise him since then, but he's basically an adult now and never really had great direction on how to manage his disease to begin with. Throw in the fact that he was a teenager when he was diagnosed and I think it was a recipe for disaster.

    Hopefully he'll be receptive to the help, he says he would appreciate the help, but we'll see how it goes. Thanks again.
     
  5. Mom2rh

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    I hope you can help him and mentor him. My heart goes out to him. :(
     
  6. chbarnes

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    Talk to your CDE. She may be able to get him in with the endo, or provide some counseling herself. I have been able to get some favors in this way. Most of us learned the basis of MDI in about 3 hours. He has some understanding already - and probably some bad habits. He mostly needs to start testing, count carbs, and give meal boluses. If you have a teaching hospital nearby, call their office of social workers and determine what services are available for indigent care - he may qualify for Medicaid, or for care at that particular hospital.
    Our Pastor has an amazing knowledge of resources in our community - yours may too.
    All the pharmaceutical companies have assistance programs with fairly generous income allowances. He may be able to get test strips, even insulin in this way.
    Many professions that were once off-limits to PWDs are now open to those with good control. If this includes firefighters, it may motivate him to work on his control.

    Good Luck,

    Chuck
     
  7. bgallini

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    There should be some free clinics in your area. Look into that along with the programs that help with test strips, etc. Freestyle Promise program: http://www.myfreestyle.com/fs/home/en_US


    I think that Alex used Novilin when he was first dx.....some people call it NPH, I think. But he was taking that 2x a day with Humalog. And he had a set # of carbs he was supposed to eat for bkfst, morning snack, lunch, afternoon snack, dinner and bedtime snack. Every once in awhile, the Dr adjusted the dosages based on a couple of weeks of bg numbers.

    I would think that if that is what he can afford, he should stick with that but he can learn how to adjust those dosages depending on how his bg is doing. If you could learn how that works and teach him, that would be great.
     
  8. TheFormerLantusFiend

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    Are you guys in the general Chicago area or more downstate?
     
  9. wilf

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    I'm sitting here with tears in my eyes, stunned that this is even possible nowadays. It is so wrong that a young man with Type 1 is falling between the cracks like this.

    Thank you for caring enough to inquire about his situation, and for thinking about how to help him. :)

    I'm going to suggest that until he can find an endo, if he's open to this idea we can "adopt" him into our CWD family here and provide free advice on managing his D. That could either happen by him getting his own handle and posting (maybe in the Parents of Teens forum), or through you if he's uncomfortable with that.

    In answer to your questions, the Novolin N (aka NPH) he's on is a slower acting insulin that peaks 4-7 hours after injection, and can be used to cover lunch if given at breakfast. It also provides some basal coverage. My DD is on a regimen where we use NPH to cover lunch and even an afternoon snack, and it works ok.

    Normally he would need to take a little more of the NPH in the evening, mixed with Humalog to cover supper.

    I am concerned about the regimen he's on. Even if he's just using NPH and Novolog, I think that a better regimen could be developed using just those insulins. I share your concern about dosages - unless he's pretty heavy, it seems like he's getting a lot of insulin.

    Are you able to contact him and find out how much he weighs? Knowing his weight will help us to put together a better insulin regimen. It would also be good know what budget he's working on to cover his D supplies. My guess is it is less than adequate.

    Other posters have suggested there's free clinics around, and this would be worth pursuing.

    Please let us know more about how we can help you help this young man. :cwds:
     
  10. bgallini

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    Yes, let us know! I know we have syringes we can share. We don't have test strips here since they are with Alex but tell us what kind he uses and maybe someone has some extra.
     
  11. truck2ff

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    Wow, thanks guys. I just had a chance to get back on the computer and tried to answer all of your questions and my login timed out and I lost it all so here goes again.

    We're located in Central IL. We have 2 large hospitals and a large medical community for the size of the city, but endo's are few and one's that see kids are fewer. One of the hospitals acts as our FD medical control, so I think I can check around with them as far as social workers or programs that might be able to help him.

    I can help with most supplies for now and I think he's found a clinic that is helping him with insulin and syringes. Strips are the problem as always, he has a one touch meter and a freestyle that he has strips for, but I think he needs help getting hooked up with freestyles program.

    Our CDE will help, she's been type 1 for 30 yrs and is wonderful. She'll help "off the record" with calculations. She's out of town, but I hope to touch base with her nxt week. I'm guessing his weight at about 150-160lbs about 5'10". I've seen him up close in street clothes and he's wearing another FF's old gear and I know that's about his size. I think the suggestion to stay with insulin he's already using (Novolin-N and Humalog) makes sense given the cost and availability. I have a fair number of Novolog pens and needles if that would work in place of his Humalog.
    Balancing his insulin regimen with his diet is going to be a struggle. I think his financial situation is going to make it hard to do NPH for breakfast and lunch when it would peak, because he may not eat on a regular schedule. I wonder if the NPH could be reduced to provide some basal coverage and cover the majority of his food with a Humalog or Novolog bolus?
    I doubt he'll post due to access to a computer and what appears to be an attempt to keep his D a secret from most folks. He's not a perfect angel. but the fact that he's managed to graduate from HS and stay clear of the criminal elements where he lives is amazing considering the amount of support he's had. The exposure to the fire service seems to have been good for him. He's more assertive and respectful than I remember him being when I met him a few years ago. It would be nice to see him have an opportunity to stay involved in something he obviously loves.

    Thanks again to everyone. The CWD community is wonderful.
     
  12. Omo2three

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    wow sounds like you have a plan in motion...thanks for doing that...I just think that could be anyone's child...and its people who are willing to take the extra time to help that make a difference.

    By getting his D better managed it will save him money in avoiding those DKA or hospital visits.

    I remember talking to our CDE and asked what would happen if we lost insurance...and the Social worker said they would help us best they can. Writing to the companies and explaining the situation can help too. What programs are out there? Is there any federal or Grant money available for uninsured 20 year old with a chronic illness like D. Talking to ADA what options are available.

    here is a link to ADA for uninsured diabetics:
    http://www.diabetes.org/living-with...s/health-insurance-options-for-the-uninsured/

    Keep us informed!
     
  13. wilf

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    Ok, so let's say he's 155 pounds (70 kg). Though they vary from one person to another, typical insulin needs for adults may be in the range of 1 unit per kg body weight per day. That would suggest he needs around 70 insulin units total. If I read your original post correctly, he's getting 120! :eek::eek:

    So here's where I would start in getting this regimen on track. I'd get him a LOT of test strips (note that I'll happily pitch in to cover costs if that would help), and ask him to test frequently for a week just to get things set up.

    Using the 2 insulins he has available (NPH and Humalog/Novolog), here's the sort of regimen I'd be steering for for starters:

    Breakfast (100 g carbs)
    - 20 Humalog, 30 NPH

    Lunch (80 g carbs)
    - covered by breakfast NPH

    Supper (120 g carbs)
    - 20 Humalog, 5 NPH

    Bedtime
    - 5 NPH

    This is based on the following assumptions:
    - weight of 155 pounds (70 kg)
    - insulin needs of 80 units a day
    - carb ratio of 1:5 breakfast, 1:6 supper
    - correction factor would be 1:25 (1 unit dropping him 25 points)

    My guess he has been in a vicious cycle of lows and rebounds for some time. Rebound highs make the body very insulin resistant, driving up daily insulin needs. I can not think of any other reason for him getting 120 units a day at his estimated weight.

    Maybe run this by your local CDE as a possible place to start. As I said at the start, the only way to get him set up properly is for him to test a lot for a week or so and to fine tune depending on what the numbers indicate. After that he can go down to maybe 4-6 measures a day. I would really encourage him to do that much. Key to helping him long-term will be to secure test strips to allow that level of testing.

    Good luck, and thanks again for taking this on! :cwds:
     
  14. truck2ff

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    wilf- Thanks so much for posting that and for the offer to help with strips. I think I can handle getting him set up for now until I can see if there are options to get him enough strips long term. I'll run the regimen by our CDE next week and see what she thinks.

    I wondered about the insulin resistance and also the the food he's eating. When I stopped by the house he's staying at breakfast was underway and it looked like bacon, biscuits, eggs and grits(I think). If that's what he's typically eating I can't even guess what the carbs are, not to mention the fat spikes....So the carb counting is going to have to be high up on the list in order to have any real useful data to reference.

    One question on the NPH and Humalog/novolog. Is there a specific order or procedure in drawing the insulins into the syringe when mixing the two types of insulin. The only time I ever saw insulin mixed was when the Nurse in the pedi ICU mixed our DS lantus and novolog the first night after he was dx....I thought the CDE was going to throttle her the next morning when I asked about it.....
     
  15. chbarnes

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    here is the link to the Sanofi-Aventis Patient assistance program.
    https://patientassistanceprogram.sanofi-aventis.us/brand/sanofiaventis_pap.aspx

    He could get Lantus for up to a year. If his meals are varied and unpredictable, this might be a safer option than the NPH. I think in 2011 the high risk pools will be established under the healthcare reform act - then he might be able to get some insurance.

    Chuck
     
  16. truck2ff

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    chuck- Thanks I wondered about going the lantus route, too. I'll have to do some research on the HRA, I just don't know that much about it.

    Chris
     
  17. wilf

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    you draw clear before cloudy insulins, so Humalog before NPH.. :)
     
  18. wilf

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    If you can get it, then Lantus is the way to go. :)
     
  19. truck2ff

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    I figured as much. I'll look into their program. He may have to stay with the NPH/humalog regimen till I can figure out what to do with helping him secure a source for the lantus. Oh, and thanks for the info on mixing the two. I'd like to know as much as can about what he's doing before I talk to him again.
     
  20. wilf

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    The thing I have a real problem with in terms of his current regimen (as you described it in your original post) is that he's getting 40 NPH at supper. That is madness. :confused:

    He needs a good bit of Humalog (not NPH) to cover supper carbs, and mixed in he needs a little NPH to cover basals overnight.
     

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