Wow, it has been a long time since my last post! We all made it through the holidays and then sickness struck our household and a birthday among a few other things, but I'm finally back with the story of our son's diagnosis of type 1 diabetes.
As I had mentioned before, our son, Trevor, was two months old when our daughter, Madison, was diagnosed in 2004 so he has grown up with watching the family live with this on a daily basis, especially his sister. I want to take a minute to explain what I mean by our "family" living with this disease. We made a decision from the very moment we found out about Madison's diagnosis in 2004 that this was going to be a "family thing". We didn't want her to feel alone, different or like an outcast so we committed to making this a lifestyle we would all have which I believe has made a huge difference in our daughter's responsibility with her disease as she has grown up. Of course we had no way of knowing that this would "literally" become our lifestyle with future diagnoses of diabetes to come, but we still didn't want her to feel like she was "special" for lack of a better word. We all ate the same, measured our portions, didn't eat things that she couldn't have at the time because of her blood sugar being too high, etc. and in hindsight this made things easier for us when I was diagnosed as well as Trevor.
So back to how we found out Trevor was diabetic too. It was the day after Easter 2010 and it had been about six months since my diagnosis and a little over five years of Madison's diagnosis. It was bedtime and Trevor just wouldn't/couldn't go to sleep. He was 5 1/2 years old at that time and he was acting just like a 5 year old might. "I'm thirsty, I'm not tired, I have to go to the bathroom, can you read me another book" etc. so we thought he was just procrastinating and not wanting to go to sleep. We usually check Madison's BG at about 10:00 pm before turning in to bed but we had eaten a pretty early dinner and so we thought we would check her a little bit early, about 9:15 or so. Trevor started saying "I don't feel good can you check my blood sugar too?" We had checked his from time to time because he was curious because his sister got to know what hers was and because we were aware of his test results confirming auto-antibodies so we tried to keep an eye on his BG every so often. We finally decided to just check his BG so then maybe he would go to sleep. My husband came in and told me it was 500! I said that can't be right, have him wash his hands and check it again....it was 495! I said maybe her meter isn't right so use mine and it was 503! (Yes I was in denial, shocked really). We then checked his ketones which were negative (thank God) so we took Madison over to my mom's house and took Trevor to the ER. He was okay, again, thank God, and we were able to take him home after a few hours of IV fluids. We were told he would be okay through the night but to go to our diabetes education center for insulin as soon as he woke up. We checked him through the night and he was fine (high-100's to low-200's) but better than 500.
The next day he said he just felt weird and thought he might be "high" as we would say about Madison or myself at times. From the first day he would check his blood sugar himself and on occasion would give himself a shot. We put Madison on a pump after 8 months so he never saw us give her a shot, just change her injection site, but he was not scared since he had been "living" with this disease since 2 months of age.
He is already a whiz about carbs and he isn't even 6 1/2 yet! Madison is very good with helping him make good choices too. She had said since she was about 6 or 7 that "I hope you get diabetes too and get a pump like me" and then after I was diagnosed she said "What if Trevor gets it too, that would be weird." Of course she didn't mean this in a bad way, I think she just wanted us to be like her and thought that would be cool to have that in common. Right now we are in the process of getting our son on a pump within the next few weeks and he has pointed out that he has had to take shots longer than his sister did....much too smart for his own good...and too cute too!
I hope to hear from anyone else who would like to share their "diabetes story" with me. It seems that that is the first thing people talk about when they first find out someone else has diabetes---How did you know, what did the doctors do, how did you handle it or how did your child handle it, etc.
Until next time, and sooner than the last :)
Anitra
Wednesday, February 9, 2011
Thursday, December 9, 2010
Part 2~My Personal Story
Today I'm going to share my personal story with diabetes and how I came to find out I was developing it. We were at the Juvenile Diabetes Research Foundation Walk to Cure Diabetes in support of our daughter and they had a booth set up for TrialNet. This is a study in which certain family members of type 1 individuals can be screened to see if they are at risk for developing the disease as well. I signed up right away and participated at our local diabetes education center. I went through the screening process and a simple blood test to see if I had autoantibodies or other markers that put me at a higher risk or not. I did have autoantibodies and so a I entered the next phase of the screen which was to do a glucose tolerance test to study how my pancreas was working (insulin secretion, A1C, etc.) This was done every six months and each time they could see an increase in my A1C and a decrease in insulin production, and this is when I was diagnosed with early adult onset type 1 diabetes. We also had our son's blood tested at about 4-years-old and his first blood test came back positive for the same autoantibodies that I had. We decided we didn't want him to participate in the second phase (the glucose tolerance test) as this requires a 3 hour IV and we didn't think he would be able to handle that at his young age so we decided to keep and eye on him with an extra glucose meter and randomly checked him.
In mid 2009 my physician advised me to begin taking Lantus (long-acting insulin), but I will admit that it took me a few months to start the injections as I was partly afraid of giving myself injections and partly in denial. I couldn't believe this was happening. I finally started the injections when my fasting BG reached 200 (that scared me) but I felt so much better after just a few days. At first I didn't need to take NovoLog (short acting insulin) for my meals as long as I kept my carbohydrate count in a certain range. This ended after about a month though, as my blood sugars began to creep up. It was still quite a few months later before I had to start taking insulin for pretty much anything I ate but that is one of the differences my doctor told me about with adult onset versus childhood onset. With children it goes quite fast (within weeks) and with adults it can take much, much longer to progress, sometimes even a year or longer.
If you are interested in finding out more about the TrialNet Study please visit http://www.diabetestrialnet.org/ as this is a wonderful way to help find a cure as it gives them more information to find out how this all begins in our bodies and how to go about hopefully one day being able to stop it.
Since my diagnosis I have entered another study for Diabetes Prevention. Although I had already been diagnosed and for now there is no cure, there are ongoing studies for medications, etc. to see if there is a way to slow down the progression and/or stop it where it is and hopefully maintain what insulin your body is still producing on its own. To find out more about the current study I'm in please visit http://www.benaroyaresearch.org/, as this one is much more detailed and would be better understood from visiting their website.
Next time I'll tell you about how our son came to be diagnosed, as it's different from my daughter and I.
If you have any comments, questions or would like to share your story, I would LOVE to hear from you and I know others would too!
With support for you,
Anitra
In mid 2009 my physician advised me to begin taking Lantus (long-acting insulin), but I will admit that it took me a few months to start the injections as I was partly afraid of giving myself injections and partly in denial. I couldn't believe this was happening. I finally started the injections when my fasting BG reached 200 (that scared me) but I felt so much better after just a few days. At first I didn't need to take NovoLog (short acting insulin) for my meals as long as I kept my carbohydrate count in a certain range. This ended after about a month though, as my blood sugars began to creep up. It was still quite a few months later before I had to start taking insulin for pretty much anything I ate but that is one of the differences my doctor told me about with adult onset versus childhood onset. With children it goes quite fast (within weeks) and with adults it can take much, much longer to progress, sometimes even a year or longer.
If you are interested in finding out more about the TrialNet Study please visit http://www.diabetestrialnet.org/ as this is a wonderful way to help find a cure as it gives them more information to find out how this all begins in our bodies and how to go about hopefully one day being able to stop it.
Since my diagnosis I have entered another study for Diabetes Prevention. Although I had already been diagnosed and for now there is no cure, there are ongoing studies for medications, etc. to see if there is a way to slow down the progression and/or stop it where it is and hopefully maintain what insulin your body is still producing on its own. To find out more about the current study I'm in please visit http://www.benaroyaresearch.org/, as this one is much more detailed and would be better understood from visiting their website.
Next time I'll tell you about how our son came to be diagnosed, as it's different from my daughter and I.
If you have any comments, questions or would like to share your story, I would LOVE to hear from you and I know others would too!
With support for you,
Anitra
Tuesday, December 7, 2010
Our Diabetes Stories
I have decided to start this blog as a way of reaching out to others who are living with diabetes. I wish I would've found a blog when the BIG news hit us on November 22, 2004~what an overwhelming day! Our daughter, Madison, was five-and-a-half years old and we had a two-month-old son, Trevor, at that time. Madison had been sick for a few weeks with a head cold which then turned into nausea and vomiting, and she just wasn't getting better so we took her to the pediatricians office. He asked us what her symptoms were; she had excessive thirst and urination, fatigue and weight loss (tall tale signs of diabetes). He immediately did a urine ketone test and within seconds knew that she had an extremely large amount of glucose in her urine. We were then sent to the closest hospital for a blood test which showed her blood glucose level to be 567, and then we were off to our local diabetes education center. There they briefly discussed what this meant and showed us how to give her insulin shots and then sent us on our way to eat dinner at a fast food restaurant. We were told "she can eat anything she wants, she will just need insulin to cover it" which we found out is not exactly the case (and I'll get to that in another post).
Our heads were spinning with this new diagnosis. We didn't realize right away that we weren't educated enough that day or in the days, weeks, or months to follow, so we decided to EDUCATE OURSELVES. We read everything we could on the internet and checked out every book that we thought would help us, and this is how we our "journey" began. Over the last six years I've also been diagnosed with type 1 and so has our son (who was also five-and-a-half at his diagnosis).
We still get overhelmed at times but feel better about our health now that we count on ourselves to learn as much as we can and not the "educators". My vision for this blog is to have the support and encouragement for each other since, lets face it, only the ones who walk in our shoes really know how the other feels, and to give tips and on what has worked for us. I also know that in the process I will learn a lot from YOU as well which is so exciting to me!!!
I have many, many, many things I can't wait to discuss with you and look forward to sharing this experience with all of you. I wish I would have talked to more people as we were going through this but we felt alone, like no one could truly understand, although many had advice some good and some bad. I hope that by doing this blog I can reach out to as many families and individuals as I can so that they don't feel alone and have someone to chat with about concerns, worries, stories, tips, etc.
My plan is to post three times a week and to have great interaction with you about anything that is on your mind. I would also like to start a section with tips, recipes, and nutritional ideas that have worked in our lives as well as yours, as I believe this is one of the single best things that has worked for our blood sugar control. I am not a dietician nor do I have a formal education in nutrition though this is my an area in which I'm passionate about and I do have a goal of someday getting a degree in this area.
Next time I'll share my story and then my son's as well so you have a good picture of our family's experience with diabetes. I look forward to the next post and I hope you do too!
With love from our family to yours,
Anitra
Our heads were spinning with this new diagnosis. We didn't realize right away that we weren't educated enough that day or in the days, weeks, or months to follow, so we decided to EDUCATE OURSELVES. We read everything we could on the internet and checked out every book that we thought would help us, and this is how we our "journey" began. Over the last six years I've also been diagnosed with type 1 and so has our son (who was also five-and-a-half at his diagnosis).
We still get overhelmed at times but feel better about our health now that we count on ourselves to learn as much as we can and not the "educators". My vision for this blog is to have the support and encouragement for each other since, lets face it, only the ones who walk in our shoes really know how the other feels, and to give tips and on what has worked for us. I also know that in the process I will learn a lot from YOU as well which is so exciting to me!!!
I have many, many, many things I can't wait to discuss with you and look forward to sharing this experience with all of you. I wish I would have talked to more people as we were going through this but we felt alone, like no one could truly understand, although many had advice some good and some bad. I hope that by doing this blog I can reach out to as many families and individuals as I can so that they don't feel alone and have someone to chat with about concerns, worries, stories, tips, etc.
My plan is to post three times a week and to have great interaction with you about anything that is on your mind. I would also like to start a section with tips, recipes, and nutritional ideas that have worked in our lives as well as yours, as I believe this is one of the single best things that has worked for our blood sugar control. I am not a dietician nor do I have a formal education in nutrition though this is my an area in which I'm passionate about and I do have a goal of someday getting a degree in this area.
Next time I'll share my story and then my son's as well so you have a good picture of our family's experience with diabetes. I look forward to the next post and I hope you do too!
With love from our family to yours,
Anitra
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