Discussion in 'Parents of Children with Type 1' started by Flutterby, Jan 31, 2010.
HI Laura, its nice to see you here.. nice talking with you in chat last night
Thanks. You too.
I am a matter of fact kind of person so I didn't look for a cure, like everyone else I researched how and why. I then went full speed into making his life as safe and "normal" as possible.
The thing I was hung up on for a long time was a comment our Endo made at his first appointment. After looking at all his blood work done while in the hospital, she said, "he has no antibodies so if it wasn't for his a1c I would say he doesn't have diabetes." Now that sent this new Mother to D into a tail spin and started me looking at type 1 without antibodies, obsessively, maybe I was looking for a cure with that. :cwds:
I never believed there would be any miracle cure. I did, however, read voraciously to find the miracle treatment. You know the one--just do A, B, C, and your child will have great blood sugar numbers all the time and will never have any complications.
Turns out there is no miracle treatment either.:cwds:
Ten years ago today when Westin was diagnosed (yes, it is our diaversary too) I didn't even have internet. Now I can't imagine how much googling I would be doing...but never considered a cure so I never looked.
Well... I guess we qualify as "the newly diagnosed family"
Honestly... thinking of a cure hasn't crossed my mind. We've been more focused on getting through each day to worry about that.
Our 6yo is unbelievable and just shrugs the whole thing off as if its nothing.
To say that we feel blessed that is he has so easily taken on this challenge is an understatement. I know its because so many lifted our family up in prayer.
A cure? Not worried about it. If it happens it happens. If it doesn't we'll make the best of it.
We read until I thought our eyes would bleed! Not really looking for a cure, but reading on research being done and just about everything you would want to know. Sigh...
I, too, have worked as an RN in the health care community for a long time. But unfortunately, as a mom, I wanted to believe what I was being told by a nutritionist that some well meaning friend told us about. I wion't go into all the sordid details, but the long and short of it was that she claims the MD she trained under has a type I dd that is not on any insulin but that she is completely controlled by nutrition and nutritional supplements. Of course I would love it if my daughter wasn't relegated to shots for the rest of her life and there was nothing happening that was harmful (I never stopped giving her insulin despite the advice of said nutritionist) so we tried their "program" for about 1 year.
So, she is still in her honeymoon, whether it had anything to do with the nutrition we'll never know, but she is requiring more insulin and I have finally come to accept the fact that she has type I and that there is no cure and it is not my fault and there is nothing I can do to change this. I am not sorry that I tried as I didn't lose anything except a year of acceptance and finding this website.
The biggest thing that bothers me still is something this nutritionist said. She stated that my daughter didn't have diabetes but just the "symptoms of diabetes". That really messed with my head as a parent, you know?
Wow, Lynn, yes, that definitely mess with your head.. is this a nutritionist at your endo's office? or just somenoe you know? she shouldn't be a nutritionist in any case. Sorry you had to deal with that.
Samuel just hit his 2 yr anniversary a few days ago. Funny thing is I knew it was coming but when the day came it went like any other. It wasn't until the next day that I realized I missed it.
No, we never looked for a cure. We looked for WHY. I'm still looking.......
NO, she was NOT at my endo's office. She runs a nutritional healing clinic near me, totally unrelated to medicine. Like I said, some well-meaning friends who go to her for inflammatory type issues asked us to try it out when she was first diagnosed. Although I said in my first post that I don"t regret it, I also wish I had never laid eyes on the place, you know?
No, but as someone mentioned earlier, I did want to know why.
I'm not a skeptical person, I do believe there are conspiracies in this world but I don't believe people are trying to "hide" a cure etc. If there really was a true and safe cure, I think we would know.
Wow, Michelle! 10 years !! Well, that calls for a carb loaded cake!
Congratulations on a decade of learning and management and health!:cwds:
OK, got it.. I was worried there for a second that the nutritionist at the endo's office was saying this.. :cwds:
I remember googling the whys and seeing ads for cures, sometimes I'd click on them and it'd be all about buy this book, or some fat guy that lost weight, etc. I beat myself up a lot in the beginning about things I could have done differently. Sometimes I still read about the cures for a good laugh, cause it is all ridiculous, if a juice or a grain free diet would cure, wow if it were only so simple lol. I once was confronted by a noni juice seller soon after my sons diagnosis, it was not pretty.
I never looked for a cure, however I was also one of the parents that was hoping the dr had given him the wrong diagnoses. As much as I hate to admit this, but when he was honeymooning really strong there was part of me that "almost" knew they were wrong.
Wiser words were never spoken.
We never looked for a cure - we assumed (and I think correctly) that the pediatrician and the endo assigned would have pointed one out. The endo (who I wish I could remember his name but it was in the Baltimore area where we were on temporary assignment) was absolutely amazing as a human being and as a doctor. He explained that it was caused by a genetic predisposition and was triggered by an unknown, possibly, environmental trigger. He burdoned us with as much as we could possibly bear and left a few things unspoken, which came up eventually. I guess the bottom line is that we never felt we were being short-changed by the medical professionals overseeing our situation - and still don't.
Along this discussion, some humor:
My son Jacob was diagnosed at 20 months and is now just about 4 years old. Today our family went to our local JDRF chapter "Walk for a Cure." Jacob asked where we were going and I told him we were walking to find a cure for his diabetes. He thought for a few seconds and then asked me: "What's it look like?" I said, "excuse me?" This time, he didn't miss a beat and said: "If we are walking to find the cure, we need to know what it looks like so we will know if we find it." Out of the mouths of babes....
Initially, upon diagnosis, Sis had me search on the net to find various other things this could be, such as pituitary tumor. Form of denial, I think. Too busy searching for new endo first month, but we did research ways to extend her honeymoon (Kevan Herold). Denied for his study, but I am bummed out that I did not research some of the other trials. We kind of put all our eggs in one basket. She was completely out of honeymoon in three months.. Some of the natural cures out there, Nonni Juice, etc., we knew that would not work.
Great post Kim.
Hmm, I think my husband and I are both matter of fact types. It is what it is-that's his favorite saying.
That being said, we decided to take Abby to Joslin, because our friend goes there and we did research about how important finding a cure is to them. We do a lot to support the work they do there. We also focused on what technology would make her life easier and more comforatble, while all along supporting those who are trying to find a physical cure.
I remember when Abby was diagnosed, the nurse at our office, who is T2 and very knowledgeable about D (seems this doc ends up with all the d diagnosis') was telling me about this great pump that is on the fast track for approval from the FDA. It will monitor the high's and low's so that you can act on how to handle bg's. He was talking about CGMS.
My dream is that Abby will one day be cured. But, I'll take the baby steps of new technology until then.
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