Parents of Children with Type 1 Diabetes in Canada

Hi, I'm new to diabetes and tudiabetes. My 6 year old son was diagnosed at the end of November, 2009. I'm finding all of the information on BG numbers very confusing as most are from the US. Any parents that would like to add me as a friend would be greatly appreciated. I live in a small town in Canada's Arctic where we are the only parents of a child with type 1 diabetes so we don't have any support (meaning people who totally understand our way of life). Thanks. Maureen

I live in Northern Ontario. My daughter was diagnosed when she was 7. She is now 11. I know the feelings of being isolated. In four years we have not connected with any other diabetic children within our community. My own healing journey began when I started writing about my experiences. Seems like It’s turning into a book. If you would like to check out our story… go to www.acureforemma.com.
Would enjoy hearing more of your story… If I can provide support in any way… I’m here. :slight_smile: xx

Hi Julie, I will definitely check out your site. I appreciate any support you can give. I feel pretty isolated here. Everyone has experience with type 2 and they just assume it’s the same when it’s not. Some days I feel ok we can do this, others I want to run away…but of course, I could never do that. We have no family here, so we are alone! Any tips on finding a sitter so my husband and I could go out to dinner for a couple of hours…we’ve had zero alone time since Jacob’s diagnosis and I’m very hesitant about leaving him with someone even for a couple of hours. Thanks and I look forward to reading your story. I’ll send you more information on our story. Have a great rest of the weekend.

Hi Maureen,

Finding time to get away with hubby is the most difficult part of this life by far! After 4 years… we still haven’t had a vacation or even a weekend away together!! We both know that it should be a priority to figure out, and suspect that soon, as Emma takes on more responsibility herself… we might actually pull this off. If I had it all to do over I would put this need first. Find 2 or 3 people that you feel are trustworthy… friends… people that work in health care. Get them trained as to your son’s needs, and allow yourself to do this… make it a priority. The people I know who get through the first year the best, are those who have support. If you don’t have it… find it. There is also government funding to help pay for this “Respite” and “Special Services at Home”.

For me it was just easier to do it all myself, so I thought. I didn’t want to burden other people. I didn’t want anyone to know that I was actually falling apart at the seams. I would definitely do it over again if I could. On my web page, I have a sample chapter which pretty much sums up my first year trying to handle all of my daughters needs alone. If you can avoid that path… please do :slight_smile: I’ve since learned a lot from then and definitely have a much better life now… but there is still some left over issues we are working on.

Wish you were closer… I’d babysit :slight_smile: xx

i know exactly how you feel my son was diagnosed when he was 6 it was also in the month of november. he is now 15 almost 16. we didnt have anyone around us to talk to either. we live in a small town in pennsylvania. we have had alot of ups and downs and it is so much better to be able to talk to people who understand

Maureen,
I recently joined this site several months ago myself. My son, also Jacob, also 6, was diagnosed last July. I’m a single mom of two…him and an 18 yr old daughter who’s still at home going to college. I feel for you, although I have no family here either, my sister’s son was dx at 18mos and he’s now 10, so I had someone to fill me in and I had a little background. She’s not around though so it’s all over the phone or emails or check this site out. I recommend looking at all the sites that are given to you. Most people here know what they’re talking about and have found so many resources online that give tons of info. My son’s been a trooper, was testing himself after 2 weeks. We’re about to take the pump class next week so that will be our next journey and hopefully a positive one for him. I relied heavily on the hospital he was admitted to here, they have an excellent program with 24/7 support. I’m guessing you don’t have that. It’s so overwhelming and you sometimes feel like you have to learn it all NOW…don’t. Just focus on managing the BG…for your son that’s the most important thing he needs right now…along with a reassuring mom.

Children with diabetes is another good site.

You’ll be fine! Susie

Thanks Susie…it’s been pretty hard so far. My son was diagnosed here and hospitalized for one night, then we were medivaced to Yellowknife NT for 3 nights and then medivaced onto Edmonton for a week. We have a hospital but there are no endocrinologists or even pediatricians, mostly gps. After our training in Edmonton, they told us that we would know more about type 1 diabetes and our son than the public health nurses here. As we are the only family with type 1 diabetes in our town, most diabetes education here is on type 2 diabetes especially given the large aboriginal population and the rise of type 2 with aboriginal people. I have been checking out all of the sites, we are finding the food part the most difficult. Trying to get my son to eat all of the carbs he has to eat with each meal and snack because we’ve given insulin for that number. I’ve left a message with the pediatric diabetes education centre in Edmonton asking if we can lower the carbs as he doesn’t have room for anything else after he eats the carbs. We are having highs and lows, sometimes we can’t figure out the reason, sometimes we can.
We haven’t talked about the pump yet but it seems that everyone that has one feels free! Maybe it’s in our future. Good luck with your training and I hope it all works out for your Jacob.
My experience with diabetes was we had a cat for 8 years that required insulin twice a day, and when I was pregnant with our second child, Jesse, I had gestational diabetes and was on insulin 4 times a day. I’d give anything to have this instead of Jacob. I feel like we are still in shock sometimes.
Thanks for your message, you don’t know how much it means to me to know there is someone out there I can contact who understands.
Maureen

Thanks for your message Tiffany, it helps knowing other people understand where you are coming from. I can’t even imagine my son being 15 almost 16, we are getting getting by day by day, sometimes meal by meal. Thanks again.

Maureen,

I remember the battles over finishing Emma’s carbs sooo well!! This is no longer a problem when on the pump, as you can bolus as you eat. If you can begin the process of getting a pump, I would highly recommend it.

One thing that I wound up doing with Emma while still on injections was giving her breakfast and dinner insulin, after she ate. This way if she didn’t eat everything I could reduce the amount. Lunch was covered by the long acting insulin, so I would stick to pretty much the same meal most days (she only really liked veggies and grill cheese sandwiches). My diabetes team would have preferred the insulin be given first, but agreed that it is also effective if given immediately after. You should ask your team what they think?

Now, I may be out of the loop… perhaps there are different ways of doing injections now. But doing our fast acting insulin after breakfast and dinner really worked much better for us! Then the other thing that I eventually learned was that, say at lunch… or a party… if she wanted extra carbs that weren’t planned, we could actually give her an injection of fast acting insulin to accomodate this (usually it might be something yummy like birthday cake… so she wouldn’t mind the extra needle.)

Anyway… I’m really rusty on injections. I would never choose to go back to them since we’ve been on the pump. Emma’s just way to fussy when it comes to eating!.

Keep your chin up… believe it or not, it will get easier. :slight_smile:

Hi Maureen,
You are not alone. We’ve all had a rough time after diagnosis.
But everyone and me included will tell you, it does get easier.
I too would do anything to have it myself instead of my 3 yr old…but God only knows why…
Regarding the problem with your son not eating enough carbs, you might need to tell his endo to give you an insulin to carb ratio in that way you give him insulin based on the carbs he wants to eat. And if you are not sure if he is going to eat all or not what they usually recommend you is to give 50% of the bolus before his meal and the other 50% when he eat the rest or when you see he is going to eat all.
It is much easier with the pump definiltey but it’s always good to learn how all works before you go on the pump, makes the transition easier. My daughters endo agreed oto put her on the pump 8 mos after diagnosed, she did not want us to go on the pump before and I guess she was right.
Let me know if I can be of help,
Gisela

I forgot to tell you I’ve posted some info in things that may help a newly diagnosed…you can check my post (look for Gisela) i this thread …
http://www.tudiabetes.org/group/parentsofkidswithtype1/forum/topics/new-to-this-1?xg_source=activity

Maureen,
Sounds like you both had quite the time at diagnosis. Julie is correct though when talking about learning the ratio. We had to keep with what they gave us in the hospital for a couple of months first then was able to go to the next stage of classes they offered that taught us how to figure that ratio. That way when Jacob wanted more carbs (which for him is usually the case) we could adjust the injection and know how much more to give him each meal. I think they want you to get used to his trends first plus the new dx kids are still or may go into the “honeymoon” phase which mine did and he was all over the place for a while. It was probably Dec when he finally evened out…no more lows like before. Now he’s high all the time which I think is partly he’s out of the honeymoon phase and he may be growing some. Please do use me anytime for questions…I did find that there aren’t too many on here using injections still even my sister had a hard time remembering some things when I would ask her. It’s a big difference between injections and pumping. But we’re still doing it and are as new as you but I’ve had the benefit of alot of classes and diabetes educators at my finger tips.

Susie

We asked about giving him the injections after he eats and they said never and he never will. I think we are on a carb/insulin ratio based on his size, appetite, etc. But when they set that ratio, he had just been diagnosed and was really hungry all the time. Now we are finding he isn’t quite as hungry. Apparently, he is still in the honeymoon stage as he isn’t getting very much insulin yet. We give nr/nph before breakfast and nr/nph before supper. For the birthday party he went to on Saturday, the timing worked out that the cake was his afternoon snack of 35 carbs. I’m hoping that the pump is in the future as it seems easier, am I wrong to assume that? I don’t know how to reply and have this go to each person so I’m going to cut and paste it rather than write thank yous to you all individually. Again, you guys rock and you don’t know what it means to have someone out there who feel/felt how we are. thank you!

We asked about giving him the injections after he eats and they said never and he never will. I think we are on a carb/insulin ratio based on his size, appetite, etc. But when they set that ratio, he had just been diagnosed and was really hungry all the time. Now we are finding he isn’t quite as hungry. Apparently, he is still in the honeymoon stage as he isn’t getting very much insulin yet. We give nr/nph before breakfast and nr/nph before supper. For the birthday party he went to on Saturday, the timing worked out that the cake was his afternoon snack of 35 carbs. I’m hoping that the pump is in the future as it seems easier, am I wrong to assume that? I don’t know how to reply and have this go to each person so I’m going to cut and paste it rather than write thank yous to you all individually. Again, you guys rock and you don’t know what it means to have someone out there who feel/felt how we are. thank you!

We asked about giving him the injections after he eats and they said never and he never will. I think we are on a carb/insulin ratio based on his size, appetite, etc. But when they set that ratio, he had just been diagnosed and was really hungry all the time. Now we are finding he isn’t quite as hungry. Apparently, he is still in the honeymoon stage as he isn’t getting very much insulin yet. We give nr/nph before breakfast and nr/nph before supper. For the birthday party he went to on Saturday, the timing worked out that the cake was his afternoon snack of 35 carbs. I’m hoping that the pump is in the future as it seems easier, am I wrong to assume that? I don’t know how to reply and have this go to each person so I’m going to cut and paste it rather than write thank yous to you all individually. Again, you guys rock and you don’t know what it means to have someone out there who feel/felt how we are. thank you!

we were told by our team that it is okay to give the aspart (novorapid) after eating (though ideally you do want it before, sometimes it hard for younger children to predict what they want to eat. what we usually do is if his BG is really good we will wait until after he eats (or after supper but before dessert at suppertime- there will never be a problem finishing dessert:). Our ratios are based on what he is eating 1:40 at breakfast, 1:30 at lunch and 1:50 at supper. when we were on NPH we were limited to 45 carbs at snack, though on days when he did want more (say if we were at a birthday party or out for lunch or something) we could give extra insulin for extra carbs. in october we started on lantus in preparation for going on the pump (we were all set to start by christmas but insurance turned us down and now we are trying to appeal or find the money some other way) and we found that in itself made a big difference. he gets 8 units of lantus before bed then his breakfast lunch and supper are insulin to carb ratios (our team said they also call this the poor man’s pump since there is more freedom though you are still dealing with all the needles). since the lantus is 24 hrs and doesn’t peak, there is more flexiblity for say sleeping in or if a meal is late. he also doesn’t need a morning or afternoon snack (though we kept a small afternoon snack in which is why our lunch ratio is lower- to try to cover that snack because his class eats a snack together at school)k but can have one if he wants extra insulin to cover it. he still gets the same 30 carb snack at bedtime. our problem is rarely that he doesn’t want to finish though- it is usually the opposite, that he wants seconds or more to eat after he has had dessert. sometimes when we give insulin first we end up giving a second shot after he eats cause he is still hungry and wants more.
last summer we went to a diabetes family camp in saskatchewan, which we found really helpful and we are going back this year. i am not sure if alberta has one, but manitoba is starting one this year, so it is starting to catch on.
we have a lot of type 2 diabetes here too, so there is a lot of ‘preventing diabetes’ education that fails to mention the type 2 part (a little pet peeve of mine).
anyway, it would be a far drive for coffee (even if we met in the middle-lol), but message me anytime:)
Tracy

Be careful to take the word “never”, too much to heart. I found that my remote area team also said the same thing. They even told us that Emma would not be able to go on a pump until she was 18. Having worked at the Hospital for Sick Children in Toronto for 2 years, I knew better, and quickly got a referral to Toronto. HSC will do pumps upon diagnosis there, as it is so much easier to provide the smaller doses of insulin for smaller children, as well as the problems with predicting what a child will and won’t eat.
It’s unfortunate, but there are still many diabetic teams out there that still think the world is flat. Don’t dispare however… just do your research, and keep asking questions until you get someone who can answer them. I would even print out these emails as back up.
I’m not exactly sure where you are, but there is a government grant program which will pay for pumps in Ontario. It was passed 3 years ago - 3 months after Emma got her pump. (Lucky for us our insurance covered most of Emma’s pump however.)

Hope this is helping and not making things more confusing. :slight_smile: xx

Hi,
I’m in Inuvik, NWT. I’m sure we’ll get more information as we go, as it is we’ve only had the initial appointments at the time of diagnosis, so maybe in March we’ll learn more. I can only hope. Thankfully, if we have a question with him being high or low, they are a phone call away. They don’t want us dealing with the local hospital only in the case of emergency. Tonight I was telling my son about the pump and he wasn’t very enthused about it. But he’s six and has already had his life turned upside down and is dealing with that. We just moved here in May 2009 so it’s been a crazy year for us.
Your responses are really helpful…we need to know what questions to ask! Thanks and I wish all of you lived next door as I could do with a hug and someone telling me he is going to be ok and so are we. I find myself thinking about the stupidest things and wondering if he will be able to do it now!! Just trying to take it day by day. Today was a good day where he only needed to be tested once at school, after gym and no lows or highs!!
I’m not sure about what insurance covers for us, although they did say in Edmonton that the territories covers everything. I guess we’ll cross that bridge if we get to it. Thanks again.

Hi Tracy,
OK, are these ratios 1 unit of nr per grams of carbs? I just bought a second scale and The Calorie King book for eating out. Luckily for us, we do not have any real fast food restaurants, so Jacob isn’t used to eating junk! We are very lucky in that he is a really good eater, eats everything, one of his favorite foods is chicken tikka masala. I’m hoping our next appointment in Edmonton gives us more answers, I don’t think they want to overload us as it’s only been 2 months. The nurse said that we are more confidant that most parents at this point in the game, meaning we are making adjustments to insulin without calling them. I do send the numbers into them after I notice trends and note what we’ve done and if it works, but we haven’t played around with changing his meal plans. Maybe that will be covered in our next appointment. I have noticed that Jacob has gained weight over the last two months, all of his pants are too tight in the waist.
Alberta does have diabetes camps but they are for the kids only and they have to be eight to go. I’d love to go as a family. The NWT doesn’t have anything as far as I can tell, another question for the JDRF.
Yes, Inuvik would be a far drive for a coffee especially at this time of year. Although today it’s been warm, only -20 and a very sunny day, on top of that Jacob had a good day, only tested once at school after gym, no highs and no lows so far. I’m trying to stay awake to do the midnight check as he played outside in the snow for almost 2 hours after supper.
Hey does Canada have Continuous Glucose Monitoring systems? I keep reading about them but haven’t seen anyone from Canada mention it. Right now Jacob gets 55 carbs/breakfast, 15 carbs/morning snack, 60 carbs/lunch, 35 carbs/afternoon snack, 70 carbs/supper and 15 carbs/bedtime snack. He eats so many carbs he doesn’t have room for the freebies like cucumber and celery sticks which he loves. Feel like he is on the anti-Atkins diet.
thanks for your support. Can everyone read these messages like the public or do you have to be a member? Thanks Tracy, have a good night.

Hi Maureen,

It sounds to me that you are doing really well for just 2 months. There’s a real learning curve to be sure! Yes… there are Continuous glucose monitors. We have a Medtronic Pump with the CGM. Only used the sensor twice however. Main reasons were 1.) Emma didn’t like having 2 sites on her tiny little body. 2.) They cost $50. per sensor and only last 3 days 3.) There was no insurance coverage anywhere I could find to cover the cost of the sensor.

Now saying all that… things may be different with insurance companies now… they may actually see the incredible benefit that a sensor can give. If we had more financial help with the sensor, we likely would have used them at least occasionally, maybe once a month… to establish her pattern.

It’s interesting how much they push the carbs right after diagnosis. When in fact a low carb diet is much more stabalizing. If you feel brave at some point… check out the following books from my website (I’m now a Wellness Facilitator… obsessed with good health since Emma’s diagnosis).
http://www.wellnessvillagedepot.com/library.html

  • follow the link for ‘the pH Miracle for Diabetes’ and ‘There is a cure for diabetes’. I only personally know one teenage girl from England, also named Emma… who has managed her T1 through a carb free diet and vitamins. She’s a year and a half now with no insulin and a perfect A1C. We tried her approach for about a week, we saw great results, but it was way to difficult for us to maintain the strict diet. But we did get some other great tips that have helped alot. Like B2, Vit C, and a few others. If this is too much, which it likely is, just stick the info on a back shelf for when your ready.

Julie xx