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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. Serenia

    Serenia Approved members

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    My son was just diagnosed T1D in June - 2 weeks before the end of the school year. Right now is of course summer vacation and the entire family is using this time to get adjusted to a whole entire new routine.

    Today I have a migraine (I was pretty stressed out yesterday) but I cannot spend a day in bed to recover as I used to do. I have to be up to monitor my son, do his carb counts, prick him, poke him, feed him, do the laundry, and manage my DH as well.

    DH has T2D and other illnesses which is why he is on disability. He would usually help out if my migraine was really bad, but most of the time he cant.

    What I would love to do is to email with another parent (or parents) in Ontario who have a Diabetes management plan in place at their school, and what they have on it.

    Right now we are using insulin pens - doing morning and evening injections - no injections at school, and just one finger prick at lunch time.

    I was given a DVD and other material from the Toronto Sick Kids hospital to give to the school which I did before school ended. The principal assured me that all teachers would get to see this DVD in the week of training before school starts again. But is that enough? I think the video is the trillium video - its mostly about low sugars, the signs and what to watch out for. (see video link below)

    http://www.trilliumhealthcentre.org...Health/familyCareCentre/media/diabetesmov.php

    Do I still need to put a diabetes management plan in place?
    What did you do?
    What works best for your child?

    We are with the Toronto Catholic District school board - which does not have any Diabetes plan at all. In fact the school board actually told the school principal that pretty much each school develops its own policy!!!!

    I guess some kid has to die of a diabetes coma before Ontario will bring in a comprehensive diabetes management law for kids in schools.

    The only reason that all Ontario teachers are required to know how to use an Epipen is due to Sabrina's law which was petitioned and passed in Ontario (in 2005 - see link below) for severe anaphylaxis allergies after Sabrina died in school from a dairy allergy anaphylactic reaction.

    http://www.cbc.ca/news/health/story/2005/05/17/sabrina-law050517.html

    At my sons school there are 6 kids with peanut allergies. My son is the ONLY one with T1D.

    I am a newbie to all this and I would REALLY LOVE to have some email support from other parents in Ontario.

    Thank you. :)

    Serenia in Toronto
     
    Last edited: Jul 21, 2012
  2. MomTo4Girls

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    Hi Serenia, we are just north of Toronto. DD is 9 and was diagnosed in February of this year. We were using pens but were lucky enough to get a pump through DH's insurance and so she just started pumping a few days ago.

    Before she returned to school I had a meeting with the principal, the gym teacher and her classroom teacher. I told them what to expect and what should be done. Luckily DD feels her lows and is able to treat them on her own.

    Last year she was in grade 3 and went to the office to test and treat. This year her classroom will be further away from the office so I will have her keep her meter and glucose tabs on her with a spi belt or something similar.

    You are right. We have terrible laws in Ontario with this. You can request a nurse to come via CPCC but I have not yet explored that route. Let me know if you have any questions!

    Kate
     
  3. Serenia

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    Hi Kate and thank you for responding.

    About Lows - my son can feel when he is shakey and always tells someone, so that's good. He gets a juice box (or two) to cover that. But he does tend to go low whenever he exercises - its taken us several weeks to drop his insulin down to a level that balances with his exercise and we finally seem to have found the right amount.

    As the diabetes educator told me last week - its not uncommon for kids to have one level of insulin during the week - because of all the exercise they do - and a slightly higher level during the weekend because the kid is not as active. And this describes my son very nicely.

    He is active during the weekdays - either at school or (currently) at the summer camp he attends, and he is quite sedentery over the weekend, while he sits at the computer or watches TV.

    I was lucky to find this 7 week camp to put my son into otherwise he would have spent the entire summer at home on the computer ALL day, EVERY day.

    That's what he did last summer (2011) and it was not good. Not good for him and not so good for me. He totally refused to get up and go out at all.

    Now that he is in camp this year - he has to get up and go out, Of course he was resistant to going to camp - I had a real struggle getting him there. But now that he is there, he has settled down and accepted that this is the way things will be.

    I probably need to add that he is an only child. Not by choice. DH and I have not been able to have more kids.

    As for school, I am not worried about the Glucagon issue (since No Ontario school will administer that anyway - because it is a medicine - at least thats what the diabetes educator at Sick kids hospital told me) so I cant worry about that. I do have a Glucagon kit and I am only 5 blocks from the school, and they know they can call me if they have to.

    Like someone else mentioned elsewhere on this forum, its not as if a diabetic child will die if he falls unconcious from a low sugar - unlike an allergic child who WILL die if he eats the offending allergen. There is usually enough time (20 to 30 minutes or more) to get help (ambulance) or get the diabetic child to the hospital, before any lasting damage is done. Add to that the fact that there are far fewer children in the schools with T1D than there are with life threatening allergies, and this why most schools boards dont have a Diabetes policy.

    Still - it is frustrating.

    The other thing that is frustrating is the needles issue - and insurance. I just had some forms returned to me from the insurance business with a note saying that we can only ask for a specific item in quarterly amounts (every 3 months) and we had only written it for 1 month. This will delay whatever money we receive for needles so we will have to continue getting them from the hospital.

    I dont know if or when my son is going to able to go on the pump. Or even if our insurance will cover the pump. It sure would make his life easier - one needle every 3 days - which is much better than 4 needles every day - which is what we currently do.

    But we shall probably stay on the pens until at least next year before we start looking at pumps. He has to be at a consistently steady level at school, and I need to know that I can trust the school staff to know what to do if he feels shakey.

    Especially when I never know when they will have extra time outside running around - which will send his BG low. Must make sure that he is allowed to have an extra granola bar before he does the running around.

    I asked my DH a few days ago why he was not on a pump?

    Oh, they are only for Type 1 diabetes, not for Type 2, he said. And DH has T2D - despite also being on insulin. He did spent several years on metformin and other medications but they did not help much.

    So we now have 2 shelves in the fridge door stocked with insulin boxes - one with DH's insulin and the other with DS's insulin - whereas 2 months ago we only had one shelf stocked full of insulin boxes.

    My son has quickly learned NOT to eat more carbs than the food I give him - because when he does that - his sugars go high and he gets very rude and irritable and has a temper tantrum that is way off normal for him.

    Apologies for another long and rambling post
     
  4. jbmom1b2g

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  5. MomTo4Girls

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    Sadly here in Ontario the teachers are not trained to administer Glucagon and it is in their union rights not to. I guess it covers their butts... We also do not have nurses in our schools but the ambulances do carry glucagon so that is the best bet. Tell the school to call 911 and to tell them that your child lives with typ1 diabetes...

    Our DD is also less active on week-ends and in the summer than she is at school. What kind of insulin does your son take? We used to have her take a 15g carb snack before gym so she wouldn't go low when she was on Humulin N. But then we were feeding that insulin all the time. She couldn't miss a snack or go low.

    The government of Ontario will fund a pump for you after 1 year so that is when most people here get them. We were very lucky that our insurance covered it. It is worth making a call to your insurance. Her numbers are so much easier to manage so far and it is only day 3!

    We have a lot of type 2 in my husbands family so it helps a bit because they are used to checking sugars and the needles but they are two very different beasts I am afraid and they have to be managed very differently too I guess.

    Oh and my DD becomes very grumpy when her sugars are high too! We can almost always guess what her number is going to be before it comes up. She is actually a much happier child now then she was before she was diagnosed for the most part :)
     
  6. Serenia

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    NO CAN DO about the Glucagon in Ontario schools. Its a provincial mandate. Probably one that the teachers union has bargained for in the employment contracts - that teachers do not issue or administer any medicine - it is not their job.

    If a diabetic child falls unconcious, the teacher will call 911. And then call the parents. Hopefully the paramaedics have Glucagon on board.

    If a diabetic child starts kindergarten, it is not unusual for a nurse or the childs parent to have to come in at lunch time to either inject insulin or do a finger poke.

    About your school nurse saying that a child in anaphylactic shock lives longer than a child with low blood sugar - well since the blood sugar will never fall to zero (certainly not that fast) - I dont beleive that statement to be true. The anaphylactic child will stop breathing before the diabetic child does. The diabetic child can be given glucagon or juice. The child who is in anaphylactic shock must be given an epipen and if that epipen is locked up and noone can find the key - then the child dies. This is why (IMO) Epipens should NEVER be kept in the school office. THey stay with the kid at all times. Whats the point of it being in the office when its too late to get it to the child?

    Anaphylactic means something like fast and fatal reaction. Diabetes is a CHRONIC illness. Eventually you may die of it or of complications of the illness, but it will not kill you that fast.

    The lowest my son has ever been in the 5 weeks since he was diagnosed was 1.9 mmol/L and while he was shakey, he was still conscious. The only reason it got that low was because he was participating in sports. It took 2 juice boxes to get his number back up to 6.
     
    Last edited: Jul 21, 2012
  7. Becky Stevens mom

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    Hello Serenia and welcome:cwds: I know this is a very big adjustment for you. I dont live in Canada but many people on the forums do and have discussed the laws in your country governing the care in school of CWD. Here in the states its better but still many states like mine will not allow anyone but the nurse to give a Glucagon shot. If the nurse is not there they would have to call an ambulance. The ambulance people will usually start a dextrose IV to get the blood sugars to start rising. Its very important that the people at your son's school know how to help him if he feels low, they can give him juice or dextrose tabs and its good to have the Cake Mate gel, not sure if they have that in Canada. Its good to rub that into the cheeks if the CWD is so low they cant drink or chew anything. It will help to start bringing them around. A good thing to try if your son is going to be active is to give him a snack with some fat and protein in it. Some cheese and crackers or nut butter and crackers or even a meat sandwich or pudding will help to keep his blood sugars from dropping as quickly
     
  8. Mimi

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    I don't know if you're aware of this site but it was started by a parent on this forum. There is some good information and resources.

    http://www.diabetesinschools.ca/

    We have been very fortunate with our school ~they've been helpful and there have been no issues. I think a key factor, especially because it is up to each school, is to know what you want for your son's care before any meetings in September. If you are armed with simple instructions and information, approach the teachers and staff in a kind, non-threatening way you will probably have an easier time.

    Also contact the CCAC, some regions will provided nursing care (the school has to refer though, I think) and some will not.

    What I liked about the CCAC is that they worked with me and dd to help her become more independent in her care. (an awesome 3rd grade teacher helped with this as well :))

    I know it is early days for your son yet, but I wanted dd to gradually become more independent so that by the time she reached middle school (this September), because she'll be on a rotary schedule. Even though all the teachers are aware that she has diabetes, she is not with the same teacher the whole day-her care is really self-directed at this point.

    There is a lot for you to think about and work out before school in September. Good luck! :cwds:
     
  9. sooz

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    I don't think it is a contest between which is worse, allergies or diabetes. Both can be equally dangerous in their own way. None of us like to think about or post about the scary D stuff, but we have to be aware of what can happen so we can protect our children as best we can. The fact is, many of us do know personally of children who have died from lows. That is a tragic fact. Extreme lows can also cause seizures and brain damage. I don't think anyone should dismiss the reality of diabetes. Yes, other things kill, cancer, car accidents, allergies, but so can diabetes and it is not responsible to think otherwise. Please God that none of us has to face that. I hope you are able to find other parents to network with.
     
    Last edited: Jul 21, 2012
  10. hawkeyegirl

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    No offense, but you've been at this what? A month?

    I know a poster on here whose son came very, very close to dying THAT fast. Perhaps she'll pipe up, but if not, I can assure you that it can happen. The fact that diabetes is a chronic disease has nothing to do with how fast hypoglycemia can kill. Blood sugar does not have to fall to zero for it to happen, either. It just has to get low enough that the brain cannot perform essential functions.

    I'm not trying to panic you, but low blood sugar is very serious. The brain needs glucose like it needs oxygen. There is NOT always the luxury of waiting 20-30 minutes for transport to a hospital.
     
  11. Serenia

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    I'm sorry, I apologise. I dont mean to upset anyone.
     
  12. MommaKat

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    Sorry that you're going through all of this. It's a lot to digest. Thankfully, our children and families face this journey at a time when there's a vast amount of information and support available on the internet.

    Like Hawkeye mentioned above, hypoglycemia can become dangerous very, very quickly. You might only be five blocks away, but that may also be far too long for a serious hypoglycemic event. Hypoglycemia isn't all about the number - it's about the symptoms the body experiences, which aren't always felt by the diabetic. Low blood sugar is scientifically recognized as brain fuel deprivation, and can result in functional brain failure. Just like we need oxygen and cannot live without for any stretch of time, the brain must have an adequate source of glucose to function. That is why hypoglycemia results in seizures and coma, the brain unable to work runs into major problems.

    Like others have said, we don't want to scare you - you are new at this, and there is an incredibly steep learning curve. You clearly have your child's best interest at heart, but received some incorrect info on hypos. We care about every diabetic and parent of a diabetic that walks arrives in this forum, and simply want to help you understand that hypoglycemia is serious, which is why we treat them as soon as we're aware of them in the mild stage.
     
  13. MomofSweetOne

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    If this is your only solution, I would MAKE SURE that the responding unit (fire station, if it is like the USA) KNOWS AND CARRIES supplies for a Type 1 hypoglycemic episode with every call to the school. Don't assume they will have it or realize he has diabetes automatically. They have to go through a list of diagnostics that they can skip right to hypoglycemia if they know the individual has diabetes.
     
  14. danismom79

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    I don't think anyone is upset. I hope you realize your previous posts are wrong - dangerously wrong. "Chronic" does not mean "kills slowly."
     
  15. Serenia

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    My son takes NovoRapid at Breakfast and Dinner and NPH at Breakfast and Bedtime.

    During weekdays at camp he is supposed to snack or eat at 8.15 am, 10.30 am, 12.45, 2.30, 4.30, 6.0 and 8.30

    8.15 is breakfast
    12.45 is lunch
    6.30 is dinner

    What he ends up doing is eating breakfast at 8.15, snack around 10.30, eats everything in his bag at lunch and then has nothing until 4 pm when I come and get him. Sometimes he is low and other times he is not - but his number is usually below 6. But I always make sure I have at least a granola bar or some carbs for him to eat.

    Thank you for that info about the Govt paying for a pump. Much appreciated.

    What is Balanced day?

    I have seen mentioned of Balanced day to do with school?

    My sons school has morning recess at 10.30, lunch at 12, afternoon recess at 2.30 and home at 3.30.

    My sons snacks are measured at 20 g of carbs, not 15. Thats why he has one granola bar for a snack. At 22 or 23 g they fit perfectly into the allowance (15 to 25 g).
     
  16. MomofSweetOne

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    To the OP, this may be confusing because of your DH's Type 2. That kills slowly. Type 1 can do either or neither. But, you don't want to mess with a low. Period. It's why my child is CGMed to catch the crazy night time drops that I wouldn't catch even with setting an alarm. They're unpredictable, and they happen all too frequently for my comfort.
     
  17. Serenia

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    We will tell the teachers that if they do have to call 911 - to be sure and tell whoever responds that the child DOES HAVE TYPE 1 DIABETES.

    Like I said in my first post - on the wall in the school office is a wall of photos of kids with medical issues. There are 6 kids on that wall with peanut allergies. My son will be the only one with T1D. The teachers will be told and they will know. Even the casual teachers will be told this when they come in.
     
  18. Helenmomofsporty13yearold

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  19. Serenia

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    No I haven't contacted them, and you're right, I should...
    I will try and do that next week.
    I just have got so much else going on as well.

    Thanks.
     
  20. Christopher

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    Canada sure does things differently.

    Another thing to consider is having your child wear a Medical ID tag that will make it immediately clear to any medical person responding to an emergency that he has Type 1 diabetes.
     

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