Tuesday, August 11, 2015

Looking for T1D kids who were older when diagnosed.

Is there any teenagers in Canada who were diagnosed with T1D at age 10 to 12 years old age, and who still remembers what their life was like before they were diagnosed??

Did they go through the same grieving process in having to give up that old life, because now they have to prick and poke and watch what they eat and drink every day?

Are there any D-moms out there whose child was diagnosed at age 10 or older and thus have had to deal with a pre-teen or a tween, who is almost into puberty and still dealing with a T1D diagnosis on top of the hormones?

Almost every T1D child I come across (mostly from blogs by D-moms)  was diagnosed at a young age - often before the child started school - which means that they do NOT remember any thing about their early life that did not include Diabetes.

I have been asking Toronto Sick Kids diabetes clinic staff to be put in touch with a D-mom of a child who was diagnosed at an older age and the child is still around my sons age - 13 right now - and therefore who was diagnosed just 3 years ago. Apparently there are no such children. Those children other than my son, who were being diagnosed 3 years ago, were all younger children.

Every child I meet at the clinic, after talking to the mom, was diagnosed when they were younger than 6 to 8 years of age.

No wonder my son is still avoids talking about his diabetes. He doesnt talk to anyone. He hates being forced to inject when he is away from the house. He does prick his finger but very reluctantly and only if he can do it in private.

He has stopped going to friends birthday parties because the party schedule often does not fit into our diabetes schedule.

He no longer does Halloween. What's the point when he cannot eat the candy? He hates that it has to be doled out. So he doesn't bother.

Monday, August 10, 2015

Long time no read

I haven't posted on this blog now for almost 3 years. My son has just passed his 3 year anniversary since he was diagnosed with Type 1 Diabetes and I thought I would do a catch up post.

My son had just turned 10 years old when he was diagnosed in June 2012.

DS (dear son) is now 13 years old and doing very well. Height wise, my son was slightly shorter than me when he was diagnosed with T1D. He was one inch taller then me, his mother, by the time he turned 11 years old. And now at 13, he is now 6 inches taller than me. He TOWERS over me!!!

I use this fact as my proof that I am doing things right by my sons diabetes treatment and management, since he is clearly growing and thriving!!!!!

My husband is 6 feet 1. DS is getting closer to his dad in height every year. I think my son will be 6 feet tall by the time he turns 14 and is ready to start High school in 2016. The doctors fully expect him to stop growing at around 6 feet 4 or taller.

What else. We are still doing MDI's. (multiple daily injections.). I find these give us better control. As for the diabetic maths, well we don't really do any. I still count carbs for all of his meals. If there is any extra insulin to be added, I just guess and add one or two units.

DS has gone on just ONE overnight camp in the last three years - and that was a 3 day school camp. I did enroll him in a 2 week diabetic camp, but he refused to go so he didn't. His main reason for refusal was 1 he would not know anyone else  (true since he is still the only child at his school who currently has T1D) and 2 - he was not sure that he could trust the doctors and nurses at the camp, to keep his numbers under control. His numbers during the 3 day school camp, were pretty good. He even injected himself. He has been injecting himself most of the time, ever since. I still do the recording and management of insulin.

DS's A1C for the first 2 years of being diabetic were all over the place. They included numbers like - 8.1, 7.8, 7.6. 8.5 (that was during summer and he did a lot of "grazing"), 7.9, 8.1, and 8.2.  The last 2 numbers were before and during the summer of 2014. I was getting depressed and angry for having to do everything on my own all the time, DH (dear husband) has no idea what to do with our sons diabetes treatment, and what is worse, he does not want to learn.

I had a chat with the doctors and the social worker around this time. The SW later told me that the average A1C for the Toronto Sick Kids, at that time, (Summer 2014) was 8.5. The fact that most of my sons A1C numbers are BELOW that average, means we were actually doing very well. She even said that some kids were unable to get or keep their A1C numbers below 10. Those numbers actually helped me a lot!!!!

For the last 12 months, DS's A1C numbers have been much better. 7.7, 7.1, 7.1, 7.3 and last month (July 2015) 6.8!!!  This is the first time since diagnosis, that his A1C has been BELOW 7!!!

Actually my DH was a little jealous. DS's A1C is 6.8. DH's last A1C was 6.9!!  LOL

But the fact is, that my DH has been able to keep his A1C under 7 for the last several years, so he really has nothing to be jealous about.

DS will be going into grade 8 in September. He maintains a strong B average at school - (mostly B's, some As and NO C's on his last report card) without really trying. He has always been a smart kid. He has told me that he is bored at elementary school, and I totally know where he is coming from. I too was bored in school. So I have told DS to hang in there for 1 more year and then when he gets to high school, he will have so many more choices. A good part of grade 8 will be spent learning about and making those choices of new subjects and visiting the high school etc. He has already visited this High School once on a Grade 7 trip, which was good.

We have chosen DS's high school with these choices in mind. He will be attending a high school that specialises in Arts, Media and Technology. Unlike other high schools that are just plain academic. Those are boring. The first Open House for this HS will be in October 2015. This is also a small High school with just 700 students. Most High schools in Toronto have 1000 or more students. DS loves his computer games and technology. He has both a PC and a tablet and uses them both every day.

He wants to be either a youtuber - where you can play games online and video them and then have subscribers who pay to watch you play these games, plus sponsors who pay as well. Or he wants to be a video game designer.  Considering just how much and how often he plays games when he is at home - this career would be perfect for him.

DS has a cousin who attended Ryerson University doing a Computer Science Degree. This cousin has done both a bachelors and a Masters degree. We think he is now doing a PhD - because his facebook page says he is employed as a teachers assistant (TA) - but since we no longer keep in touch with the family, we don't know for sure.

As to why we dropped the family contact, that is pretty much due to DS's diabetes as well. From the time DS was a baby we would go up to DH's brothers home for Xmas, New Years and Thanksgiving day, where there would be lots and LOTS of food. That was fine when DS did not have diabetes. But now that we have to control the carbs that DS eats, and there is just no way to measure or count the carbs with all the food that was piled up on the tables, we decided that it was easier to just stop attending. There were other reasons as well, but the diabetes was one of the major reasons.

I think that's enough for now. If I think of anything more, I will post again.