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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. Brenda

    Brenda Junior Member

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    I had this mostly typed and got sidetracked. Wow, missed several contentious posts.

    The OP has explained why her son is on NPH, why he is at camp (remember, Let Kids be Kids is one of our sayings), etc. Rather than criticizing her, I think those of us who have been in "Diabetes World" for many months or years need to remember that she has been part of our world for only a month. Did we all learn everything in that first month? Not exactly. Give her time to learn, try to teach her, not criticize her. Those of us in the U.S. should be even less critical because we do not know how the schools in Ontario work. Also, rather than blasting her statements about treating lows, provide evidence to the contrary. Show her the studies that point out how critical it is to give glucagon asap. I don't have the statistics, but I don't know how many people have ever had to give glucagon (excluding mini doses for illnesses).

    As for the statements that she said "wait 30 minutes...," I did not see that, but admit there's a lot to read. I also did not see where she said she does not provide food if her son is shaky.

    In sum, I think the OP is not trying to harm her son. She is new to diabetes and is trying to learn everything she can. Remember that you/we were once in her shoes.

    Just my personal opinion.
     
  2. Christopher

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    Nicely worded, Brenda (maybe I should take lessons from you :D).

    I too was surprised at the way the OP was being badgered by Sooz, picking her words apart and such. Not the way we want to welcome a newly dx parent! :cwds:

    To the OP, this is a great place for support and education. As you can see, sometimes people go a little overboard, but take it with a grain of salt and keep coming back.
     
  3. C6H12O6

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    I don?t think sooz was trying to be unkind. I just think that she is worried bc the OP said that she believes bc diabetes is a chronic illness you can?t become acutely ill and die from it. She even put chronic all in upper case letters to emphasize her point. It could be a miscommunication but even thought a number of people have said that one can indeed die from hypoglycemia I feel like the OP remains unconvinced
     
  4. Christopher

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    Understood.
     
  5. Lisa P.

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    To the OP:

    A couple things here, and know that I never get my feelings hurt in any way if someone ignores my two cents! :p

    1. Please understand that I and others here do not understand the Canadian system, and I suspect you don't understand ours. For example, I can't imagine an American diabetes group labeling itself "Sick Kids"!!:p American privacy laws with medicine are so outlandish that I have to sign a paper every single time I go to any doctor saying they can call and leave a message if they have info for me! So the idea of sticking the pictures of kids with medical conditions on the wall is bizarre to us. And, in particular, American public schools usually have nurses (if only a rotating nurse) but if a nurse is not available, the school is legally obligated to make sure a diabetic kid can be given insulin and treated for lows by someone at the school, maybe a health aide, etc. Although it sometimes happens, American schools cannot require a parent come to school to inject a child, and the school doesn't in any way determine whether a child uses the older insulins, uses MDI, or uses a pump. That's up to the family, and the school must acommodate it. So you can see how some folks might find it strange that you use long acting insulins during the day, since we don't have to deal with having no one at the school to give injections. I only mention this so you can see some of what people say is because it's a hard system to understand.

    2. Please understand I do not know you at all, but I've been in this game over four years and on this forum for about that long, and I've seen many parents who are given poor information about testing and about lows. Unfortunately, they find the endo has underplayed the importance of frequent testing and danger of lows only after a bad event has happened, to themselves or someone they know here or elsewhere.

    I hope you are testing frequently. I see you note nighttime numbers are good because before sleep and morning numbers are good -- are you testing during the night to make sure that is the case? Are you familiar with rebounding? A child with functioning alpha cells, most believe, will kick out glucose from his liver in response to a low. So let's assume Selah goes into the night at 150 and wakes up in the morning at 150. She may wander up to 200 and down to 150 during the night, that's all right. But she may also drop down to 30 and rebound up to 150 by morning. That's not o.k., because after many nights of this the body's ability to respond to the low may be depleted, and then one night she might go low and not rebound, and stay at 30 or lower until morning. If that's hours later -- you see the problem. When an insulin has a strong peak, you need to test many times at that peak time if you use it at night.

    Most kids also have a dawn phenomenon. This is a natural rise in bg that happens between midnight and dawn. So if Selah goes to bed at 150 and wakes up at 150, she may have had a curve that went down to 50 before rising with the dawn phenom to 150. This could have her going too low every night even without a rebound.

    Remember that kids in a honeymoon (yours is likely to be in one at this point, but only you would know) respond differently to peaks when the honeymoon ends, so you need to watch out for that.

    I would suggest, also, that you consider a few days of frequent testing during the day. Selah has a continuous glucose monitoring system, if that's an option there I can't recommend it enough, it gives you the info between the testing points, it's wonderful. I can tell you that if you test the often recommended 6 times per day, you are not going to get all the information you need. For example, I have met people who say their bg never goes about 200 -- but those people also never test except before meals! The highest your bg is going to be is about 2 hours after meals, normally, so if you never test then you never get a real picture of the curve.

    Best to you in your coming months. Obviously you have learned a ton, but there is, of course, still a ton left to learn. I highly recommend the Ragnar Hanas book. Unfortunately, one thing you are likely to learn (although I sincerely hope you don't have to) is that your health care professionals aren't all going to have the same point of view on all issues, and also that you are going to find some of them hold views you disagree with, and some will likely be downright (and sometimes dangerously) wrong. One thing you will develop is the "radar" that tells you when to believe a nurse or doctor wholeheartedly, when to run away from that person as fast as you can, and when to take what you can get with a healthy degree of skepticism and compare it to other info you've gathered.

    Sorry, by the way, not from Ontario here!! :p Looks like you've had a few good chimes in, though, and hope you have great luck with more connections.
     
  6. C6H12O6

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    Bc Brenda suggested it here are some journal articles that confirm adults and children can become acutely ill and die from hypoglycemia

    Brian M. Frier, Morbidity of hypoglycemia in type 1 diabetes, Diabetes Research and Clinical Practice, Volume 65, Supplement, September 2004, Pages S47-S52, ISSN 0168-8227, 10.1016/j.diabres.2004.07.008.

    Keywords: Type 1 diabetes; Hypoglycemia; Morbidity

    A.L. Iscovich, Sudden cardiac death due to hypoglycemia, The American Journal of Emergency Medicine, Volume 1, Issue 1, July 1983, Pages 28-29, ISSN 0735-6757, 10.1016/0735-6757(83)90034-7.



    Philip E. Cryer, Hypoglycemia in Type 1 Diabetes Mellitus, Endocrinology & Metabolism Clinics of North America, Volume 39, Issue 3, September 2010, Pages 641-654, ISSN 0889-8529, 10.1016/j.ecl.2010.05.003.

    Keywords: Hypoglycemia; Diabetes; Defective glucose counter-regulation; Hypoglycemia unawareness; Hypoglycemia-associated autonomic failure in diabetes

    Anthony L. McCall, Insulin Therapy and Hypoglycemia, Endocrinology Metabolism Clinics of North America, Volume 41, Issue 1, March 2012, Pages 57-87, ISSN 0889-8529, 10.1016/j.ecl.2012.03.001.

    Keywords: Hypoglycemia; Diabetes type 1; Diabetes type 2; Insulin therapy

    Dorothy J Becker, Christopher M Ryan, Hypoglycemia: A Complication of Diabetes Therapy in Children, Trends in Endocrinology Metabolism, Volume 11, Issue 5, 1 July 2000, Pages 198-202, ISSN 1043-2760, 10.1016/S1043-2760(00)00259-9.

    Keywords: Hypoglycemia; Diabetes; Children; Insulin therapy
     
  7. C6H12O6

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    The hospital for sick children was one of the first children?s hospitals established in 1875. The name is a throwback to the time the hospital was created and people were less politically correct.
    Other children?s hospitals have normal names here ex mcmaster children?s hospital, children?s hospital of eastern Ontario etc http://en.wikipedia.org/wiki/Hospital_for_Sick_Children

    Children dying from diabetes before the discovery of insulin were admitted to the hospital for sick children and among the first to receive insulin. I remember reading that the whole area of the hospital took on the smell of ketones
     
    Last edited: Jul 25, 2012
  8. StillMamamia

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    When my son started primary school, his teachers put his photo on a piece of paper and a short description, so that, in the event of an emergency every teacher and school personnel knew who my son was and what to do. For ex: playground time - there are always 4 teachers supervising that, and they're not always his teachers, so, if he ever felt low or something happened, they knew who he is and what he has and could act accordingly. (we don't have nurses at school)

    To the OP - I'm sorry about the diagnosis. It feels very overwhelming and that is normal. The info about lows being very dangerous is very true, sadly.:(

    I would like to suggest something. Even though the school personnel is not allowed to admnister Glucagon, are they willing (and able) to keep a box of Glucagon IN THE SCHOOL, in case of an emergency? Say if the ambulance is called and maybe they don't have Glucagon, then at least a box is on site. I would look into this. Plus ask if an emergency box of glucose tabs and slower carbs can be kept in the classrooms used or the teachers' room. I'd start there. Maybe it works.:cwds:

    Best wishes.
     
  9. StillMamamia

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    Me again, sorry, but I don't get why it's such a big deal to administer Glucagon. I thought (maybe wrongly??) that you can't do anything wrong giving Glucagon, apart, if a big dose given to a child, lots of puking following.:confused: Can anyone explain?

    Also, can they administer insulin or not? I admit I haven't read all the posts thoroughly, so sorry if this has been answered.:eek:
     
  10. C6H12O6

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    Nope school personnel won’t give insulin. But on a side note there is a bottle of insulin pictured on the latest 100$ bill
    http://www.google.ca/imgres?q=new+1...on the smell of =24&ved=1t:429,r:10,s:0,i:104

    http://www.google.ca/imgres?q=new+1...173&start=0&ndsp=24&ved=1t:429,r:15,s:0,i:120
     
  11. Brenda

    Brenda Junior Member

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    Glad you found all those studies. However, the ones I read (could not find them all) were more about multiple incidences of hypoglycemia. I thought, and I may have read this wrong, that the related issue in this thread is the school's unwillingness to administer glucagon. I don't think that a majority of people with diabetes ever need to use glucagon (see http://www.childrenwithdiabetes.com/poll/poll20110831.htm). What is not clear in that poll is whether or not the glucagon was a dose for a "severe" low or seizure or a stubborn low during an illness.
     
  12. Serenia

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    Lets answer the above statement first. The only people I personally know who have died from diabetes complications were -
    1 - elderly at the time of death
    2 - all had leg amputations because they did not manage their diabetes very well - and
    3 - were all type 2.

    I do not know personally anyone (adult or child) with type 1 or who have died from complications of Type 1. So as yet I have no experience.


    In response to SOOZ -
    Why do you expect me to have to think about death every day? Why do you expect me to think my son might die, my son might die, all day every day?
    Do you live like that every day. do you wake up saying my daughter might die today. my daughter might die today, My daughter might die today. If you do - how very depressing.

    I refuse to live in fear and I will do the best that I can for my son, and give him the best chance he can to make the best of his life. All this wallowing in death and fear is not mentally healthy at all. I grew up and spent years living in fear of authority. I will NOT go back to living like that again just because you demand it. It took me a lot of courage to get out of that situation I was in, and I refuse to live in fear again.


    Now to answer other statements.

    The Toronto Sick Kids Hospital used to be the HSC - Hospital for Sick Children. But because so many people called it Sick Kids for short, it eventually (and fairly recently) legally changed its name to Sick Kids hospital.

    http://www.sickkids.ca/

    About the pumps - Everyone I see or talk to says that pumps are a good thing, and they cant wait for their kid to go on pumps - so of course I dont know of any other regime or system.


    nanhsot -
    Thank you for advising me of our choices. That we can choose not to switch to pumps and we can continue with injections. We will have to discuss this with the Diabetic team, and see what my son wants to do. I do have to keep in mind that right now he hates needles.

    So I have to weigh up the constant large needle in his tummy changing it every 3 days - or 8 short sharps pricks and pokes every day but no needles in between.


    About camp - everyone told me that putting my son into camp was a great idea. To keep him in a routine of sorts. The school said it was a good idea, the hospital team said it was a good idea. The only reason he was resistant is because he WANTS to stay home and be on the computer for 14 hours a day. Not going to happen,. Not after last summer.

    I check his lows every time he says he is shakey, I do NOT DENY him food. He can have free food if he is hungry. I just deny him more carbs if it is not a scheduled snack or meal time. And sometimes he will say he is shakey but the meter says his BG is 8 or 9 (mmol/L) - which is NOT low but is in fact right on target. Those are the times I suspect him of trying to get more carbs outside of his schedule.

    He also sometimes has a delayed reaction. I check his BG at a scheduled time, find that is low (maybe 3.8 or 3.6) and treat that (with a juice box) and then 15 minutes later when I retest, his BG is back up to 4 or 5, but now he says he is shakey. The diabetic educator said that delayed reactions to lows are not uncommon.


    About the overnight lows - If he has gone to bed with a low BG (if it was between 4 and 5 (mmol/L), then I might recheck it later on before I got to bed, (around midnight) and invariably it is improved up to 5 or 6. If it was already 5 or higher at bedtime, then he will be fine overnight. He has a snack of carbs, plus NPH to manage his BG during the night.

    About the checking overnight at 2 am - well right now I am not terribly concerned about getting the perfect A1C percentage, so I am not going to live my life trying to get the perfect A1C. I have read a lot of stories about mothers who are UPSET with their kids when they dont get perfect A1C scores. I do not plan to be that kind of mother.

    Someone made a comment on this forum I think - (I may be paraphrasing this) - If he had a perfect A1C score, then he would NOT have diabetes.

    Looking at the logbook over the last 4 weeks, his morning BG numbers are fairly steady between 4 and 7 (mmol/L) when he gets up before he has breakfast.

    But no, I do not get up during the night to recheck his BG. The hospital has not said that I have to do it - except when he is ill (if he has a fever). He has not had a fever yet.


    PS I love the bottle of insulin on the $100 dollar bill.
    I was gobsmacked to discover that test strips cost $98 for 200 test strips!!! Fortunately my insurance pays for that. But the costs of being a diabetic are just so HIGH.
     
  13. caspi

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    I realize you have been innundated with posts here to read, so I will make this short. We were also told that we didn't need to test in the middle of the night - we were only to test if we were making changes. It was HERE that I learned that checking at night is necessary and I can tell you from experience that I have caught many, many scary lows. It has nothing to do with achieving a perfect A1C. Heck, I am the first one to say that I HATE to read about other kids A1C's because we have struggled a bit in that department. I don't live, eat and breathe diabetes 24/7 but there are things that must be done. And personally I think overnight testing is one of them.

    I'm sorry you had to deal with some very critical posts. Please understand that most people are coming from a place of good and just trying to help. :cwds:
     
  14. hawkeyegirl

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    Two comments:

    A needle does not need to remain in his stomach on the pump. With most sets, it's a small plastic cannula that stays under the skin for the three days. The needle is removed after you put the set in and just the cannula stays behind.

    If he is on NPH at night, you should check his BG every night. It has nothing to do with obtaining a "perfect" a1c, but with avoiding a dangerous low. It is a mistake to assume that with a snack he will be fine overnight. There is a (former) regular poster on this board whose child died from a low overnight. It is real, and it happens. And especially on NPH (because it has a strong peak), you need to check overnight. I think it's malpractice for a doctor to tell you otherwise.

    ETA: The point people were trying to make about him feeling shaky and not being low is that he could be HEADING low fast. So you could check him at he could be at an 8, but the reason that he feels shaky is because his BG is heading down fast. Do not discount his feeling. Check him again in a few minutes to see if he is plummeting.
     
  15. C6H12O6

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    It?s not the type of fact that a lot of journal articles are going to explicitly document. My understanding is that hypoglycemia can cause a cardiac arrhythmia and as a result death. Beyond that it could suppress activity controlled by the brains stem like respiration and that could cause death
     
  16. Serenia

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    OK - since you guys are so concerned, I will talk to my diabetes educator about checking his BG overnight and see what she says.


    About Ontario teachers not checking insulin - well, it's true - they dont.

    The only reason my son was allowed into the summer camp (after he was diagnosed) was because he was NOT getting insulin during the day at camp.

    He gets that at home. The particular camp is a boys only camp and they have a 3 days overnight camp in the first week of August. They will be going to some camping place up on Lake Simcoe (some miles north of Toronto).

    My son cannot attend this 3 day overnight camp because there is NO qualified teacher who can give him his insulin injections at breakfast, dinner and bedtime. Also I cannot go because its a BOYS camp - and I am not of the male gender. So he will be missing camp.

    He is not terribly upset though. That's 3 more days he gets to spend on the computer at home.
     
  17. caspi

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    Good Lord, really??!! Just to be clear here, while these things CAN happen, more likely than not they DON'T. I would hate to see newly diagnosed parents coming on here and reading this.

    Do you not remember what it was like when your child was first diagnosed? There is so much to learn and deal with. Please have some compassion here, folks.
     
  18. sooz

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    Sorry that my concern was interpreted as mean spirited and badgering. Serina I wish only the best for you and your family. I'm not the mother of a d child, I'm the grandma. Of course I don't think of death everyday as you suggest. I am just aware that it is a real possibility and my heart breaks every time I hear of another d child dying from Dead in the Bed Syndrome and other causes. I don't want to argue with you whether children die from type 1 or not. Hang on to that belief if you want to. I just thought your son might be safer if you knew about it. Sorry folks, no harm intended. Peace out.
     
    Last edited: Jul 25, 2012
  19. MelStan

    MelStan Member

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    Christina, do you seriously think it's better for parents NOT to know about Dead In Bed Syndrome?
    As tough as it is to learn about, and I remember being absolutely devastated when I found out early on, I would still rather know than not know. It's a no brainer isn't it?

    Serenia, I am the former, regular poster who's daughter passed away in her sleep 21 months ago. I'm sorry..this is frightening to learn about I know, but there really IS a need to test your son through the night (regardless of what your D Ed says). We used to use NPH and it is a very unpredictable insulin. There's no need to think about death every hour of every day, life needs to be lived! But if you test at times through the night, you'll feel safer having a better idea what's going on with your son's bgs.

    Best of luck to you :cwds:
     
  20. caspi

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    Mel, I stated in a previous post that I thought testing through the night is important. My gripe is that the OP was originally asking to meet people from the Ontario area. From there it went to people judging her and demanding she answer questions. She's a month into this. Yes, the harsh reality is that this can happen, but she didn't need to be bombarded like this. That's all I was trying to say.

    I hope you are doing well..... :cwds:
     

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