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Would LOVe to be on contact with parents from ONTARIO, on this forum.

Discussion in 'Parents of Children with Type 1' started by Serenia, Jul 21, 2012.

  1. MelStan

    MelStan Member

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    I understand. I think people were concerned that the OP seemed so sure that nothing serious or immediate could happen with lows. From where I'm standing I can tell you that learning the reality of what can happen with this disease, no matter how devastating and frightening, is NOTHING compared to the grief I live with every day now. I don't wish this on anyone EVER :(

    Maybe I'm coming across pretty harshly, but to be honest I've always felt that way about this topic..even before we lost Eilish.
    Stressed (but aware) parent? Or DIB? I think we all know which one we'd rather. And we all know how many medical 'professionals' tell us it's not necessary to test through the night :rolleyes:

    I'm doing my best, but my life is just very very different now. Thanks for asking Christina :cwds:
     
  2. MomofSweetOne

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    Mel,

    I was just thinking about you as I read this clip from Gary Scheiner's Diabetes Bites. It sounds so much like Eilish's death:

    Heart Rate Affected by Nocturnal Hypoglycemia in Type 1's

    For adults with type 1 diabetes, it appears that there is a marked change in heart rhythm when low blood sugar occurs during sleep. Minna L. Koivikko, M.D., from the University of Oulu in Finland, and colleagues conducted a study involving 37 adults with type 1 diabetes who wore continuous glucose monitors as well as electrocardiograms for three nights. During periods of hypoglycemia (glucose below 70 mg/dl or 3.9 mmol/L), heart rate variability was analyzed.

    In the study, published in Diabetes Care, the researchers found that hypoglycemic episodes lasted an average of 71 minutes. During these episodes, abnormal heart rhythms were observed. According to the researchers, "Spontaneous nocturnal hypoglycemia in patients with type 1 diabetes results in a reduction of the low-frequency component of heart rate, which is best explained by excessive sympathetic activation without a concomitant withdrawal of vagal outflow," the authors write.

    In other words, during hypoglycemia, the nervous system sends signals that cause the heart rate to speed up but without an appropriate increase in blood pressure to ensure adequate return of blood to the heart. It is possible that this is responsible for the so-called "dead in bed" syndrome that has many living in fear of hypoglycemia during the night.
     
  3. Lisa P.

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    Very cool about Sick Kids. Wasn't criticizing, but I do think that would have undergone a name change here years ago!

    I really don't want you to feel badgered here. But the responses you give make me feel you really don't have a good handle on how diabetes works yet, but think you understand it very well.

    Please just buzz past me if this is hurtful, but I really feel that for the good of your son I need to address a few of these things, and I hope you understasnd this isn't about thinking I'm better than you or some other "mommy wars" sort of garbage all us moms have to put up with, this is about living with this for four years and having learned some things. If you want to ignore me, please read the Hanas book, obviously you are a person who likes to be well informed and that book will cover it all.



    The line I put into red is really scary to me. I think you genuinely don't understand right now that you do not know that, you cannot know that, particularly if you dont' test at night. Hey, every parent has to decide how and when to test, if you settle in for not doing night tests after you've seen your son through the honeymoon and you have a great deal of knowledge about his particular diabetes works, I won't even blink, plenty here say they can do that. But right now, you simply don't know what you say you know.

    As for testing at night being about getting a perfect A1C, I test multiple times at night and have every night for years (use the CGM now) and I can totally guarantee you that we don't have and will never have a perfect A1C!! Not even a good one! But if I didn't test, she'd have spent many nights below 50 (sorry, don't know the Canadian numbers!) and many nights well above 300 (which is damaging when it runs on for hours and hours), and while pumping might have gone into DKA. It's not about being perfect, night tests. It's just what a lot of us got to do. Whether you'll have to is, honestly, something you just can't know yet. And frankly, I don't care what the diabetes educators say, it's not their kid, they don't get to tell me how much risk I'm willing to tolerate.

    Hope you find some of this helpful. I read your posts as trying to take control of the diabetes instead of letting it take control of you, and I think that's a huge thing, very, very important. And you are absolutely, positively right that the majority of the time your kid is and will be just fine -- completely right. But it's like walking into the round pen with a horse when you've got a few lessons under your belt and trying to take control, you have to respect the animal enough to know what you don't know and not take on more than you're ready to take on while you continue learning. It's on the job training, and no one gets out without one good kick in the gut. :p Just remember this is a marathon, not a sprint, and you're headed in the right direction, you just have to pace yourself.

    So, now that I've rambled for seven pages and exhausted all my diabetes cliches, I'll let you be! :D Have a great night!
     
  4. diabetesgoddess

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    To get back to what to do with schools, the first step is to "ASK". As someone else pointed out, teachers are people first. Many teachers are willing to do all that they can. Some schools will train staff who are willing to be involved to inject or supervise injections. In Ontario, community nurses can also be brought in. Do not be afraid to stand up and demand help. It is there.

    As for glucagon, most teachers, despite union rules, will be willing to administer glucagon in an emergency situation especially when they realize that a)the child may die or have brain damage if this is not done and b) that doing so does not put them in legal jeopardy. The Good Summaritan's Act protects them.

    As to the concern about the newly diagnosed son's fear of injecting himself--you may also want to look at IPort. I understand that they are readily available through most pharmacies. They are like an infusion set that is worn for three days but you inject through them avoiding multiple injection each day without pumping. As with a pump set, there is not a large needle left in the child but a small, thread like catheter.

    Diabetes has a huge learning curve. This forum has offered a lot to sift through. Consider some of the books mentioned, look at John Walsh's Pumping Insulin as well as others. Read and post on forums or the CWD parent list (or other online groups). Keep an open mind. Diabetes is time consuming and stressful. Night testing is a personal choice. I have had friends die and seen my son go low with no warning. I chose to test. After 12 years, my son is only now sometimes waking to his lows at night.

    Congratulations on being able to let your son be a child first and attend a regular camp. Living life to the fullest is all that any of us want for our children.
     
  5. danismom79

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    I'm going to chime in one last time about the NPH at bedtime, because I skipped over to your blog and saw what you learned about adjusting insulin. Unless you check in the middle of the night - ideally around that peak time - you have no idea what his blood sugar is doing. He could go to bed at 5, wake up at 10, but that doesn't mean he was rising all night. He could have gone down to 2, or up to 20. And if you adjust the bedtime NPH just from the two numbers you SAW, you could be compounding a problem you don't even know exists.

    By all means, ask your endo team what they think about testing. My endo still says I don't NEED to test, and he's highly respected in this field. But I'm going to trust my experience of catching lows in the middle of the night, and continue to check. I don't check every night, but at least a few times a week. Much more when my daughter was on NPH. Good luck to you.
     
  6. MomofSweetOne

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    Since my daughter is on double the insulin today for some reason, I was told by the CDE to check every two hours tonight. I'm going to be tired tomorrow. We're not telling you something we're not also living. Diabetes is exhausting, but it's better to check than live with regrets.
     
  7. caspi

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    I am not sure why you continue to post these comments. :confused: The OP has been given the information in numerous posts and what she decides to do with it is her choice. Don't you think it's time to give it a rest?
     
  8. C6H12O6

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    I see where you are coming from, but I think she just wanted to give a personal anecdote
     
  9. C6H12O6

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    This is something that occurred to me later. You can?t transition from nph to a pump it is against the provincial formulary for a pump funding. You have to go from a basal bolus regime with either levimir or lantus as your basal insulin and novorapid and humalog using carb counting with all meals and snacks. So sick kids has either given you misinformation or you have misunderstood what they have told you
     
  10. Serenia

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    Thank you Caspi, for your support.
     
  11. Melissata

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    Unless you test at night, there is absolutely no way to know what is going on. We didn't test at night on a regular basis, because no one ever suggested it to us. When my kids were diagnosed they were on the older insulins that peaked, not NPH, but Ultralente and Lente, along with regular and Novolog. There were times when my son was so low in the morning that we had to administer glucogon. There were times that we also had to call 911 because he wouldn't let us give it to him. All because he was a bit more active the day before. If I had known then that I should be testing him at night, I would have. Even after these episodes, no one ever told me to do so. I took him to several different endos and still no one ever said we should test at night, just reduce the insulin. He would eat extra carbs to try to avoid the lows, but it didn't always work. Activity can drop them for up to 2 days later!

    My daughter never wakes up at night if she is low, but I had caught some by testing her at night. Once she got on the CGM, I realized just how much I was missing, both day and night, but especially at night. They can go to bed and wake up at exactly the same number, but you have no idea of what has gone on in between. I am sure that I probably increased her insulin doses the wrong direction, because of being high in the morning, when the highs were actually rebounding lows.

    Both of them have CGM's now and I can't imagine life for them without one. Blood sugars are constantly moving, but until you see that CGM graph you can't really just imagine how much. I am thankful every day that we somehow managed to avoid a really serious event with each of them.
     
  12. Serenia

    Serenia Approved members

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    Right now sick kids have not given me any info about pumps. Everything I read about pumps is from forums like this one. - and other places.

    My son and I are a long way from pumps, right now. So right now I am not going to worry about them.

    I will continue the MDI (multiple daily injections) as we are doing.

    And to the person who screamed in bright red letters about the 4 pokes and the 4 pricks a day and then said I was not a good mom if I dont do more than 4 pricks - are you nuts?? If course I do more than 4 pricks a day. That was just the MINIMUM I was quoting.

    God you people are going way overboard.

    In the interest of keeping the peace - I am going to make this my absolute last post and then leave this subject and thread alone.

    I spoke to my D educator this morning and asked her 2 specific questions.

    1 - about Glycogen in schools and what the chances were that my son will die in the 20-30 minutes it takes for the paramedics to get tot he school - and she said HIGHLY unlikely. and she said any kid that has a seizure has that same chance of dying when the paramedics take that same 20-30 minutes.

    While the Sick Kids hospital and the Canadian diabetes association (and other groups such as the diabetes in school group) do push the Toronto district and catholic schools boards to add a diabetes policy, they appear to continue to refuse to do so - probably (and this is JUST MY OPINION) because of the teachers union mandates that say that teachers cannot administer glycogen and insulin.

    My D-ed said we could ask the teachers if they were willing, and they can only say no if they dont feel comfortable.

    And 2 (the second question) About the checking for BGs at night - again I am going with my D-ed on this and she says that as long as my son has a good BG number when he goes to bed, and he doesnt wake up feeling shakey, then it is ok to allow him to sleep

    If he were to get up and tell me that he is shakey then of course he gets a BG test and some carbs to treat it instantly. He has gone low in bed a couple of times - but those were within an hour of going to bed and he was hot (those were on very hot humid evenings) and then I hear "mommy, I feel shakey". A BG test, number down below 4 and some instant juice to get those sugars back up. Once his number is up, he can usually settle down to sleep.

    I do treat the lows, and I do NOT starve my kid!!!!

    If he had a fever then of course I would check more often, but as yet he has not had a fever.

    Right now, (all this week in fact) my son has a cough, a cold, is sneezing and has a sore throat, so he is not eating and is NOT attending camp.

    I am dealing with this at the same time as dealing with you guys on this forum.

    So we have adjusted the insulin levels downwards to cover the lower amount of carbs and he is drinking just regular pop - 1/2 a cup of regular sprite once every hour. That covers the 15g (1 serving) per hour. He has not felt shakey all week, and has not had a low. I have tested his BG least 6 times per day and so far he is doing fine.

    When school starts, I will ask his teacher if she is willing to learn how to administer glycogen if its needed. She has the right to say NO. But what we are really asking, is for her to keep an eye on him in class, and encourage him to test his BG and drink some juice if he looks like he may be going low.

    The point is that T1 kids should NOT be getting to the point of where they become unconscious with extremely low BG. The teachers and classmates do need to keep an eye on them and encourage them to test their BG if they look like they may going low.

    I follow everything the D-ed tells me to do.

    Thank you.
     
  13. MomTo4Girls

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    We did transition from NPH to a pump through our private insurance. So it can be done. The government funding begins 1 year post diagnosis. The OP is a long way from there so there is a lot of time for her to transition if that is what she feels comfortable with :)

    Serenia, I test at 3am every night. I have only once or twice caught her low... but it was enough to concern me. I wouldn't go 8 hours without checking her during the day so we do check her in the middle of the night. On NPH she used to crash between 3am and 7 so we knew if she was under 7mmol at 3am we had to give her some carbs so she didn't bottom out. This is another YDMV thing :) You should do whatever you feel comfortable with. Our diabetes team told me night time testing wasn't necessary but I should do whatever gave me piece of mind.
     
  14. hawkeyegirl

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    Okay. Clearly you are not interested in our advice. It makes my stomach hurt to think of giving a child NPH and not testing them at night, and I don't think you have the first clue how that insulin works or why that worries people, but I'm not going to argue with a brick wall. There are plenty of folks who want advice, and I guess I'll spend my time on them.

    Good luck.

    ETA: You are not on MDI. You are on a NPH set carb regimen. There is a big difference.
     
  15. danismom79

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    Good luck, Serenia.
     
  16. C6H12O6

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    It is rare for private insurance to cover pumps and pump supplies. When the gov't rolled out funding for pumps and supplies most pumpers got letters from the insurance company saying they would have to obtain their funding through ADP within a certain time frame.
    You are lucky because you must have very good insurance.
    Some peds diabetes clinics turn a blind eye to the rules also
     
  17. Lisa P.

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    Scream at you and call you a bad mom? Heavens, I did no such thing!

    I could not have qualified my remarks more, I tried very hard to communicate sympathy to you but there are some extremely important things about diabetes that your posts give the impression you simply don't understand yet.

    No one who enters this game understands diabetes in the first months, but it's really important to stay open to new information and continue learning. I hope in a few months you can review this thread and see the many folks trying to give you important information. You seem to have some serious misconceptions, it's not about the choices you make as a mom, those are yours to make and I'm sure you'll do well, it's about your understanding of this disease and how it affects the physiology and the emotions of a child. This is all stuff you'll learn over time, the folks here just wanted to give you a bit of a heard start.

    Sorry you're dealing with an illness, I always feel bad for moms who have to deal with an illness right after diagnosis, it's no fun at all.
     
  18. Christopher

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  19. caspi

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    I agree. We are almost 6 years into this and I am constantly learning new things. But I am OPEN to learning and I think that may be the difference here.

    I think we've given the OP a lot of useful information. What she does with it is up to her. I personally think continuing with this thread isn't going to change anything, but that's just my opinion. ;)
     
  20. Lisa P.

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    I agree. I apologize to the OP if I've made what is always a difficult time more difficult.
     

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