Discussion in 'Continuous Glucose Sensing' started by MoiraMcC, Jun 24, 2009.
Thanks Mel and my apologies if my earlier reply came accross as harsh.
No problem Darryl :cwds: I will bow out gracefully (I hope) about now
No Sarah, I never said that. But I am sure you could go find something I said in a some other thread and twist it around to make it seem that way.
Mel, before you go - just curious, what is the CGM situation in New Zealand as far as how the doctors view it, etc. Are they supportive? Are CGM's available? If so are they covered by any kind of insurance?
Hahahaha, this one is priceless!!!
As far as I know Darryl, (and Jane (Kiwikid) is more knowledgeable about this than I am - chime in Jane! they're not really very commonly used here yet. Our pump trainer hires out a Dexcom (?) at $500 a month I think, which we can't afford at this point
I asked our Dr recently if they would consider funding it for us for a week or two, but got a flat out 'no'. I think Dr's would be supportive, but the costs are prohibitive to most. (No insurance coverage here)
We're really quite behind the times here.
(We started pumping 2 yrs ago, and were the first in our region to do it, to give you some idea It was quite a battle. The Dr told me at our last clinic, that he has put a 2nd patient on a pump..so that's progress I guess!)
"Twisting"? There has been no twisting. Nor has there been any attempt to "find something". No need to.
I guess it's because the companies that make the CGMs are based in the US, that there is delay before they are available in other countries. Someone could probably make a lot of money starting a CGM company in just about any other country outside the US where there is no competition!
Is this another argument thread, but this time it is version 2.0?
When will we learn to put our personal differences aside, and at absolute disagreement in the worst case scenario, debate things objectively instead of making it personal?
I'm just saying, maybe it's time to let things that bug you from a personal perspective go.
In abandoning this behavior, we can debate things more effectively, actually get constructive advice, and cover ground without things getting nasty.
Instead of "he says" "she says" we talk about the treatments and the techniques.....
I'm just saying...
I hope we haven't scared you off with the response to this thread because I KNOW you have a lot to offer the boards. (We met at a conference last year in Orlando). I wanted to say how much your post has really made me think. Emma has been dealing with this since she was 2 (only 4 now), but that's a lot of years of D ahead of us. I don't want to see her reach burn-out and I can see how playing the numbers game all the time could easily send her down that path. We currently have her wearing 2 CGMs because we are trying to figure out why we can't get accurate data from the one. Your post has made me realize that this is simply ridiculous. Pick one and go with it. She has enough to deal with in her little 4 year-old world. She doesn't need me sticking multiple devices on her and still pricking her finger 10 times a day. Uggh. I feel my shame now, but thankfully not in an emergency situation down the road. I hope there's a chance that you have spared me that.
Thank you for your post. It allowed me to see the forest for the trees. I'm not one to post A1C scores, because they don't mean very much to me. I know that you can have a perfect A1C with crappy numbers if they average out just right. I do tend to get into spells where I'm very conscious of every reading. I was in one of those spells lately...until I read this thread.
On another note...it's more than just being obsessed with numbers that I could see as being a potential problem down the road. I know you are very active with fundraising for a cure (as we are too). Often times, this means that Emma's identity becomes very heavily tied to her diabetes. It's a fine line that we all walk with D. It's a part of all of our lives, but to place heavy emphasis on any one aspect of someone's life can make it into something they want to run from. Your thoughts really helped remind me of this today.
Thanks Mel! We can buy a MM Guardian for $2500 (+GST) with each sensor costing $87 (+GST) thereafter .
We can buy a box of sensors (4) for $600 (inc GST) which includes the use of the Dexcom 7 system (transmitter/reciever/software) for the time of use of the sensors. The system isn't available to buy.
With no Private Health Insurance in NZ it is all out of pocket cost for the user. We bought a box of Dexcom sensors which lasted us 6 weeks but Rachel found it hard to tolerate the transmitter, so we haven't tried again. I did get some useful info which I have tried to utilise to the best of my ability.
Most District Health Boards own a MM Guardian system now that they will fund for patients to use for the 3 day sensor life. Starship Childrens Hospital actually use the system at every pump start to help with pump settings but I don't know how they are used in different areas around NZ.
Of course I remember you. That was a great conference. And yes, you are right. I have to be VERY Careful with Luaren and all we do . . fundraising and advocacy. She says NO to a LOT Of things she is asked and that's fine . . . sometimes when people ask me to ask her to do things I just say no myself. She's really learned a lot from all that (I mean how many kids have spoken before Congress twice) . . and she's thinking her career will blend media and politics much from her experience. That said, it's about her first. In the early years I did NOT have sight of that so good for you for realizing it young! (But I do think she is her school student council president much becuase she learned how to lobby at a young age ha ha ha)
This forum certainly is . . ummm... interesting. I guess all passion is good -- so long as some of it focuses on goals like A CURE!
Jesse learned how to trick the meter at D camp. If they were too high, they couldnt get a snack.. a little spit on the finger does the job... and he was 12 when he learned this one... but he did tell me about it when he got home...
Perhaps the take away from this conversation is we are damned if we do and damned if we don't. Perhaps there is just a time when we can have the tight control (maybe when they are little and the parents do it all) and times when we have to let them get out there and mess it up while they learn to find their own way of doing it. I don't think there is a right or wrong answer - depends on the person and where they are in life at that point.
Probably as parents we don't all take the same approach the entire time our child has had diabetes - I know I haven't and it has only been 5 years.
Very well said Sneakermom!! :cwds: Also, this makes me think of the other siblings in the house - "what about my asthma, mom? how come we don't do an asthma Walk?" Placing the emphasis on one family member that is needed and that we want (like I want to advocate for - find a cure for type 1), I can't lose sight of my other teenager who sees my passion for this. This parenting job works at us from all angles a constant reassessment for balance.
I value the input I receive from the members here tremendously. Whether it is Darryl and Karla (or other CGMS buddies) or Wilf for his ability to master NPH (Which I never could do) or the numerous others who can give comfort and support. I am in awe of the knowledge and generosity that abounds on this board.
IMO comparing A1Cs is helpful, because it allows me to see what is attainable and to focus my energies. But if I didn't feel so, I wouldn't post.
I tend to focus on the people whose children are in a similar situation to mine, but I always am open to trying what works.
I hope that my input is helpful sometimes too. (Although no one should ever use the amount of bandaides we use !)
But I try to give what I can here, and take what I need.
I really appreciate your post, and hope you will post more in the future.
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