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Parents at the end of our rope and desperate - very long read, sorry

Discussion in 'Parents of Children with Type 1' started by DadTheImpaler, Jan 31, 2015.

  1. cdninct

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    Wow, that sounds like my son. Thank you for that bit of insight. My little guy is much younger than yours, so I have no good advice for you, but thank you for giving me a little insight into my boy!

    I know in Ontario, the last 3 a1cs have to be under 10 to get approval for the provincially-funded pump program. I am assuming that a1cs have to stay under that mark to keep the pump? Perhaps that is why the hospital is thinking of removing its support? Of course, anyone who deals with diabetes day in and day out knows there is a world of difference between under 10 and under 8! I agree with you about the utter stupidity of taking the pump away, though.
     
  2. wilf

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    I guess I am wondering why any jurisdiction should leave a pump with a youth who is obviously not making reasonable use of it. Why not give it to someone who WILL make use of it's capabilities? Ontario will take back your pump if you don't continue to meet the eligibility criteria including A1C cut-off. I have to say that I agree with this position.
     
    Last edited: Feb 6, 2015
  3. Sarah Maddie's Mom

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    Obviously it's a cultural thing, but in a humane world no "jurisdiction" and no insurance company would take an insulin delivery device away from a Type 1 diabetic regardless of A1c.

    A1cs fluctuate, diabetes is hard, would you similarly propose that those failing to check bg often enough be discontinued from receiving lancets and perhaps offered a steak knife instead?
     
  4. cdninct

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    Not a cultural thing. I don't think the people of Ontario are generally less humane than people elsewhere! I definitely don't agree with the pumping-is-a-privilege mentality, and I don't think it's just because the formative years of my diabetes development were spent in CT!

    Having said that, I think I overstated the case before. I don't think the government takes away the pump, per se, but it will decline to keep funding the pump and pumping supplies if control and care are deemed unacceptable. There money, their rules, I guess. People could still fund the pump on their own or with their private insurance. Actually, I'm not sure if a prescription from a doctor is needed for a pump, as long as a person is willing to self-fund, but I imagine that private insurers would insist on a doctor's approval. Then, you could get screwed by an overbearing endo, but that can happen anywhere!
     
  5. swellman

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    Well, here, they would never take back a pump because once you buy it it's yours and no one can take it back. It would never be redistributed anyway ... to my knowledge.

    EDIT: My knowledge of tubed pumps is minimal so I guess it's possible one might be redistributed here in the US.
     
  6. DadTheImpaler

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    Seems a little harsh, frankly. Beyond what others have said, the responsibly for using it effectively is on the parents. Clearly we're failing on this front to a degree, but I'm working hard to correct this. My son shouldn't suffer for his parents' failings. I'm confident that, with the help of our resources and the good people here, we'll get his levels turned around.
     
  7. Melissata

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    Just wanted to encourage you to stay the course. Look at it as a team effort and your son will thank you for it. He is so young and has the rest of his life to deal with this disease.
     
  8. C6H12O6

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    they will only discontinue funding supplies if the a1c is over 10 for patients under 18. it's actually only a matter of 200$ a month toward supplies. I am not sure what the process of regaining funding is, I believe it's getting the a1c under 10 again.

    the pump itself can only be taken away within the first 3 months of your first pump, or any subsequent new pumps
     
  9. wilf

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    I stand corrected. Thanks. We've never had a pump, and I made the mistake of passing on what I had heard from a pump family without qualifying my comment.
     
  10. SarahKelly

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    This doesn't "fix" the food sneaking however I was thinking about how my son behaves when his BG is high - he can not focus, feels he's starving and wants to eat everything that is high in carbs. It is a cycle where his body is saying he needs food because his insulin level isn't high enough to get the energy into his cells. So, I started taking note of when this was happening, raised basal rates an hour before and for the hour afterschool I raised it so high to build in a 20 carb snack. May not completely cover what he eats but it gives him a chance to not be in the cycle of high, hungry, higher, not making sense, high.....grrrr.
    Does that even make sense? My son is also younger so I still have more control over things and we do not have free range of snack foods in our house for either of our children. When he's older I am sure we'll come up with another system, but for us we do need to pre-think when he's going to be hungry and then add in extra insulin to keep things from going out of balance quickly.
     

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