My beautiful 2.5 yr old son was just diagnosed last Friday with Type I. We are still in shock and have to keep forcing back the fear, negativity and emotional outbursts.
In addition to all the basic education we are undergoing, I have been scouring the web for data on cures. It appears that transplant and MGH work is the most promising. However, over at CWD research forum, some of the folks with a lot more experience than me are quite skeptical of any of this, as promises and PR have been going on for decades. So I oscillate between hopefulness and resignation. Where do you/others stand?
First, I am so sorry to hear of your son's diagnosis. I breaks my heart every time I hear of another kid having to deal with this stupid disease.
Secondly, you have asked a question that is very hard to answer.
Where do I stand? I hope and pray for a cure with all my might, but I'm not sure there will ever be one. I raise money and try to raise awareness, but sometimes I feel like it's futile.
I hope because I have to. I feel that I would be doing my son a disservice if I gave up. Yet, I'm very cautious about getting too excited about news articles. If you research enough you'll see that most articles that come out were printed several years ago too. And, still, no cure.
My biggest hope is in Dr. Faustman's research. But, maybe that's all just a pipe dream too.
A few months ago I resigned myself to hope for a cure, but not to expect one.
Penny, I've always said if Brendon were Stewart Little.....
MDG, Experts are skeptical, but time and time again other independent researchers have taken Dr. Faustman's techniques and replicated her results. So her own results weren't a fluke.
More importantly, I'm sooo sorry about your son. My son was diagnosed at age 2.5 as well and is now a strong, thriving 7 yr old. When he was first diagnosed, I experienced everything you are now.
Penny is wonderful support as are many parents here in the Diabetes OC. I hope we can all be a comfort to you.
We are starting to have a few moments during the day when things feel "normal" again, although they are fleeting. And the sick feeling in the pit of my stomach isn't going away. Not eating, not sleeping, even though we know we need to take care of ourselves or we're no good to him or his older sister. It's just not easy...yet. How can I care about hockey or stock market or novels or house projects, it all seems so trivial now.
It doesn't help that his numbers are all over the place. He was 23 last night at bedtime snack, and our instructions for bedtime snack (for now) are to always give snack, correct for delta from his target (8) but not correct for snack carbs. That's the highest he's been since we took him in. And he was really thirsty. I suspect we learn not to get so caught up with every reading...
Thanks again both. Will be hanging around here and a few other sites from now on.
I don't mind you using my comments at all. I'm sure mdg needs all the support she can get right now. My heart really does ache for her and her son. Those first few months after diagnosis are just horrible.
mdg,
I agree with what Shannon said about Dr. Faustman. If there is going to be a cure, I really believe it is most likely to come from her research, whether it be a couple of years from now or 10 years from now.
That's one of the main reasons that I have a walk in October to support The Iacocca Foundation.
Just a couple of things: I think you are on the right track by checking out CWD. I stayed on their chat room a lot during those first couple of months after Riley's diagnosis.
About 6 weeks into Riley's diagnosis I started blogging and it is the best thing I could have ever done.
Also, have you checked out tudiabetes? (www.tudiabetes.com) That may be helpful to you as well.
Take care and feel free to email me any time. My email address is in my profile.
6 comments:
My beautiful 2.5 yr old son was just diagnosed last Friday with Type I. We are still in shock and have to keep forcing back the fear, negativity and emotional outbursts.
In addition to all the basic education we are undergoing, I have been scouring the web for data on cures. It appears that transplant and MGH work is the most promising. However, over at CWD research forum, some of the folks with a lot more experience than me are quite skeptical of any of this, as promises and PR have been going on for decades. So I oscillate between hopefulness and resignation. Where do you/others stand?
mdg,
First, I am so sorry to hear of your son's diagnosis. I breaks my heart every time I hear of another kid having to deal with this stupid disease.
Secondly, you have asked a question that is very hard to answer.
Where do I stand? I hope and pray for a cure with all my might, but I'm not sure there will ever be one. I raise money and try to raise awareness, but sometimes I feel like it's futile.
I hope because I have to. I feel that I would be doing my son a disservice if I gave up. Yet, I'm very cautious about getting too excited about news articles. If you research enough you'll see that most articles that come out were printed several years ago too. And, still, no cure.
My biggest hope is in Dr. Faustman's research. But, maybe that's all just a pipe dream too.
A few months ago I resigned myself to hope for a cure, but not to expect one.
Penny,
I've always said if Brendon were Stewart Little.....
MDG,
Experts are skeptical, but time and time again other independent researchers have taken Dr. Faustman's techniques and replicated her results. So her own results weren't a fluke.
More importantly, I'm sooo sorry about your son. My son was diagnosed at age 2.5 as well and is now a strong, thriving 7 yr old. When he was first diagnosed, I experienced everything you are now.
Penny is wonderful support as are many parents here in the Diabetes OC. I hope we can all be a comfort to you.
Penny, I hope you didn't mind me hijacking your comments to reply to MDG :)
Thanks penny and shannon.
We are starting to have a few moments during the day when things feel "normal" again, although they are fleeting. And the sick feeling in the pit of my stomach isn't going away. Not eating, not sleeping, even though we know we need to take care of ourselves or we're no good to him or his older sister. It's just not easy...yet. How can I care about hockey or stock market or novels or house projects, it all seems so trivial now.
It doesn't help that his numbers are all over the place. He was 23 last night at bedtime snack, and our instructions for bedtime snack (for now) are to always give snack, correct for delta from his target (8) but not correct for snack carbs. That's the highest he's been since we took him in. And he was really thirsty. I suspect we learn not to get so caught up with every reading...
Thanks again both. Will be hanging around here and a few other sites from now on.
Shannon,
I don't mind you using my comments at all. I'm sure mdg needs all the support she can get right now. My heart really does ache for her and her son. Those first few months after diagnosis are just horrible.
mdg,
I agree with what Shannon said about Dr. Faustman. If there is going to be a cure, I really believe it is most likely to come from her research, whether it be a couple of years from now or 10 years from now.
That's one of the main reasons that I have a walk in October to support The Iacocca Foundation.
Just a couple of things: I think you are on the right track by checking out CWD. I stayed on their chat room a lot during those first couple of months after Riley's diagnosis.
About 6 weeks into Riley's diagnosis I started blogging and it is the best thing I could have ever done.
Also, have you checked out tudiabetes? (www.tudiabetes.com) That may be helpful to you as well.
Take care and feel free to email me any time. My email address is in my profile.
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