I don't know why but I think I will work semi-backwards with these post...after all that is the way my brain works.
We are home from our weekend in Toronto from the Children With Diabetes Friends For Life 2011 International Conference and all I can saw is WOW!! There is just so much to process and share I thought that summing up my weekend would be the best way to start. LOL
This was my very first time attending any event this size and with this many knowledgeable people about type 1 diabetes. These are the people that I have heard others quote when talking about type 1 and I got to meet and see and hear them speak about their life with type 1 diabetes and I learned a lot. I learned something about me about me, I learned a lot about type 1 and I learned a lot about differences in our knowledge of type 1 diabetes and the importance of having events like this.
What I learned about me:
I HATE BIG CITIES. I kinda knew this already BUT OMG... anxiety attack!!
What I learned about type 1 diabetes:
What I and many, many other families with children who have type 1 diabetes do at night is really what you should be doing...NIGHT TIME BLOOD SUGAR CHECKS are a great thing, DO THEM...PLEASE!!
PUMPS are a good thing, they have stats and numbers and evidence that I would love to throw in front of my old Endo and say SEE I WAS RIGHT!! Pumps are better!! and not just for blood sugar control but for the happiness of the child or person with type 1 diabetes.
PUMPS & CGM'S are a great thing...the information that it can give you is invaluable.
We learned that testing your child's blood sugar 7 or more times a day is a GOOD THING!! It is not being a "crazy" or "obsessive" parent it is documented 7 (or more) is really the luck number when talking about BG testing.
We learned that we are overly aggressive on correcting Cara's lows and I think we now have a much better understanding on how to bring a low up fast but not too high.
We learned the importance of not having a huge spike after meals because of long term health implications that can occur do to that spike and I hope that my husband was listening very closely to Strike the Spike with Gary Scheiner because WE NEED HELP!!
We have a much better understanding about the ways different foods are digested in the body and how these foods will affect Cara's blood sugars.
But one of the most refreshing things that I learned and truly now believe is that there are a lot of dedicated people working and researching to find
better technologies and more effective ways to manage type 1 diabetes on
a daily basis and I really can't wait to see what the future holds in
terms of treatments and a cure.
What I learned about diabetes knowledge...of course this is my opinion, I hope it does not sound a rude and I hate to generalize because this does not apply to everyone BUUUUT....
I think that many parents are a little behind the 8 ball. And this is NOT their fault!! I was shocked to see the wide range of type 1 knowledge that many parents had and I don't mean to say that they don't understand type 1 diabetes! NOT AT ALL...I know that WE ALL have a grasp on that. But many people due to what they have "learned" from their doctors/endo's are "stuck" for lack of a better word in their child's treatment. I was shocked that many people in one group discussion did not know that you can test ketones with a blood ketone meter? They had no idea there was such a thing. There were many more examples through out this weekend that I felt peoples diabetes team had let them down.
To see and hear the disbelieve from speaker after speaker that soooo many Canadian children are on NPH which was many, many, times referred to as "Not Particularity Helpful" in many discussions was shocking. I knew it was a nuisance and not a fun insulin to be on but I had NO IDEA that there was so much hatred for this one type of insulin. One nurse and a type 1 since the age of 2 (I believe) told us that children should not even be on NPH, it is just not for kids and in Ontario it seems to be the very first insulin that our endo's prescribe until the parents beg to try another one...and I know this because that is what happened to us!
I know the reasoning behind the push for NPH to be given to our children:
1. You need less shots, and to a newly diagnosed family that makes perfect sense...It did for us!
2. In some Ontario school system's and many schools across Canada we do not have nurses. Therefore without NPH a parent would have to leave their job to give a shot at lunch time and leaving ones job to do an injection does not work for everyone and therefore NPH.
It is just unsettling that people/parents are at the mercy of what others know and if your "other" is not in the loop of current treatments or technology or they have taken the opposite stance in the treatments or technology you will never even have the chance to see what is out there. I just kept on thinking about these parents that don't have you, The DOC or have parents that have no connections to T1 people or other parents around them or parents that do not have amazing nurses and now a wonderful Endo like I have.
The whole weekend I just kept telling myself that they will never know what they are missing...and this is why we need events like the Friends For Life! So people don't miss out on this very important information, So we get different perspectives and maybe learn a new way of diabetes care we did not know about before, so we start to question and look into ways to better understand and treat type 1 diabetes, so we can see what works for other people, sometimes it is not just the speakers that you learn from, sometimes parents help parents.
While my husband was attending Strike the Spike a parent commented on how they like Vector cereal. They commented that for their child they have seen less spikes then other cereal. And guess what? My husband walked into the kitchen after grocery shopping today and he had a box of Vector to try. As we all know every child is different but it does not hurt to try :) and it was on sale.
In the next few days I will talk about the absolute amazing time we had, the people that we met and the inspiration I felt during our time at the FFL 2011 Toronto conference... and of course I have pictures :)