Tuesday, March 22, 2011

Down under - ass about - and way behind the times

Well, we are really slow here, and really freaking expensive.  

Im talking about CGM's.. (continuous glucose monitoring). 
JDRF say that a CGM  will benefit-all-people-with-type-1-diabetes. The system available here is used with the Medtronic insulin pump.    Click here for more info from Medtronic  .   The insulin pump itself is $8,000.   From what I understand the CGM component costs an initial outlay of $1,250 to buy the medtronic MiniLink REAL-Time transmitter and the sensors are extra and ongoing.  

Wait for it - $725 for a pack of 10, or $310 for a pack of 4.

(Wait should I fill a shopping cart with food for my family, oh hang it lets splurge on a box of sensors!)  

Keep in mind that one sensor is recommended for only 3-6 days of use....?

But wow, if only we had the consumables available on the NDSS, subsidised or partially, or accepted by private health insurers as essential to care and management of type 1 diabetes.  Part of my reservations about going onto a pump is that I dont know what his BGL's are doing now.   Most of our tests are essential night time ones sometimes 5+ that I scrimp a little on the day times ones.

I have to be honest.   I wish I knew what was going on in Reubens little body and some days wish I could poke him hourly to check.   Im the sort of person who likes to know.   I want to get better control and see trends, but for the sake of his poor little baby fingers (which are already developing hard black spots scattered around the perimeters of his fingertips and toes) I dont.

All I get is a number. Theres no trend.  A snapshot in time, you dont get the whole motion 'picture.'   Amongst the benefits of continuous glucose monitoring is reassurance, that confidence that it should alert you should your glucose level  get out of 'range'.   Also we could SEE what the patterns are, following particular foods or activities.    Something Im interested in;  having such a young diabetic; is the Low Glucose Suspend function that helps prevent severe hypoglycaemia.   It is equipped with an automatic insulin shut off so that the pump can suspend insulin delivery for 2 hrs when glucose falls to preset levels.

Its frustrating to get his BGL up above 10 for bed. Ive fed him some low GI food like custard or baby formula.   I wake up to alarms at night because I know he hypos virtually every night between 2 and 3 am, now with what seems no hypo-awareness.   I wish wish wish that the technology thats available would make its way through beaureaucracy and red tape and filter its way down here to us and baby Reuben.

For heavens sake we dont even have tubeless insulin pumps yet...   I think I might write to our health minister.


  1. Hi Jules, I'm Julia and my baby boy (Alex) was diagnosed T1 in June last year at the age of 11 months. We are in the UK. This blog could be written by me!! I also have 2 older children (6 and 3). Alex was put on a pump two days after he was diagnosed and they'll have to prize it from my cold, dead fingers in order to take it back. We have the Medtronic VEO and are very happy with it. We have sensors too, though have found they are problematic with Alex. We are looking forward to the new sensors out very shortly which are improved technology. Go for the pump, it's so much better than injections.Alex was on injections for 36 hours about a month ago, it was awful. He found them painful and his BG always ran high because his BG was just under the 0.5u limit. The pump is so precise bec you can give tiny amounts of insulin. If you want more info about babies on pumps feel free to contact me. Alex is on this website here (INPUT): scroll down to see the baby!

  2. Yeah, I did our sums on the sensor with the pump and realised the approx $5000 per year for consumables was outside out reach. I don't think we would have gone for a pump without the CGM. It was really good to use the CGM when we transitioned. The double arrow down (going low quickly) helped to know what was about to happen.

  3. CGM's can be used part-time. We've had so many problems with them, but luckily they've managed to work accurately during the night so I've managed to get almost flat line BG due to the data. Lots of parents in the UK have kids who refuse to have the CGM bec of the big needle, and only use them when the child is unwell. They are worth it when they are ill. So don't feel you have to use them all the time if you have to buy them yourself.

  4. I am a big fan of Dexcom Jules. I am not sure if you have that one there yet. I was unhappy with Medtronic's product for many reasons. Joe tried it when he was four. The calibrating process was very difficult in a young child with labile blood sugar swings (which all young kids have). Also...I don't like that they can only be used for such a short time. We can get like 12 days out of the Dexcom.

    I totally hear you...on just the "snap shot" picture that BG checks provide. Although Joe's CGM graph trend line looks like an Orangutan jumping on a pogo stick during a hurricaine...UGH.

  5. Yes, write your health minister! You should have the option of available technology.

    Like Reyna and Joe, we use the Dexcom and we love it. It really is wonderful to see "the bigger picture."

  6. My "Dexter" rocks! I feel ya, on the price. Even with insurance, its hardly manageable!

  7. Elise has been on the Dexcom and it as been a life-saver for us. I totally hear you on the "snapshot" thing... it is so frustrating to not know if they're going up or down or staying level!

    OUr insurance pays for part of our sensors, but we still had to drop almost $500 for a 3 months supply last month. That hurts.

    Good luck, I hope you can make some noise and bring about some change!

  8. thanks for your comments. im terribly envious that you have choice of pumps and cgms and its covered by insurance in other countries!
    im going to research the dexcom. sounds like something that should go in my letter to the health minister along with the omnipod :)

  9. I know the Dexcom can't be used with paracetamol (makes it go haywire). I think in the UK it's only been researched for adult use, but I know lots of kids who do use it. Regrading the Omnipod - several other pump companies are going to be bringing out patch pumps. I've heard Omnipod users either love it or hate it, and many people find the patch too bulky. But then, Nick Jonas has one....
    The new medtronic sensors are supposed to be tonnes better - and supposedly better than the Dexcom. They are available in the next few weeks, so don't write them off yet.
    Here in the UK, many babies and children get CGMS on the NHS, though not all the time. But it may be worth trying to fight for them where you are.

  10. Hi julia let me knw how the new sensors go! Jules.