Thursday, August 26, 2010

The Artificial Pancreas

Im very excited.

I had a meeting with Sarah's Endocronologist. Her nice, friendly supportive endo, (not her origional Dr McMoron ph34r.gif )

We planned this meeting a month ago after I was contacted by a Dr in the US claiming to have made a breakthrough in Pancreatic Agenesis research.

Firstly we discussed the events of last week and the condition in that Sarah was in. She agreed that it was unacceptable and can understand my feelings in why I feel they failed in there Duty of Care to Sarah and what we can do to ensure it wont happen again in the future.

We then moved on to this US research group. They have come across a new gene mutation called RFX6 Gene.

They found this gene mutation in 6 of 7 patients with Neonatal Diabetes. The patients all had a pancreas but the pancreas was either Annular or Hypoplastic which means that only a tiny portion was developed in fetal life.

All patients had Neonatal Diabetes but more interestingly they all had Malroation of the bowels, Severe IUGR at birth and Bilary Atreasia's.

Sarah was IUGR, Hypoglycemia within hours, had Malrotation of the bowel and had a micro colon which is a Bilary Atreasia.

The research this far and this part of the research is only at the mice stage, but that Islets Call Trasplants have transitioned the mice of insulin and this is a major breakthrough. It appears the RFX6 gene mutation causes all patients to be born without the Islets of Langerhams which are the insulin producing cells of the pancreas. Of course Sarah being completly Pancreatic Agenic means that she has no insulin producing cells, but this research indictes that an Islet cell transplant would be succesful.

We are quite a few years away from ICT therapy being approved for humans, but it is a major breakthrough for the few kids with this conidtion.

Something else that is quite exciting for us is the first stage of the Artificial Pancreas.

The first stage is now available in Australia. However upgrading Sarah's current Insulin pump to the new one is complicated. As hers is still under warranty under "Governemt Guidelines" we are unable to for another 2.5 years.

Well we found out in the last few days that there is a loophole in the system. If a newer technology becomes available that is better able to manage the condition then your health fund at there discretion may pay the benefit.

The new System is in 2 parts. 1 is the insulin pump itself. The second is an additional cannula that reads the blood sugar every 5 mins and uses blue tooth technology to send the reading to the insulin pump. the insulin pump then alerts the user ie me to rapid changes in blood glucose. So if Sarah's blood sugar was rapidly falling it would sound an alarm to alert us. If we were unable to take action ie we are asleep and the blood sugar falls below 2 it Automatically suspends insulin delivery for 2 hours.

So a few calls later and we find out the criteria for applying for "special consideration"

The claimant needs to have

* Used glucagon in the last 3 months
* Frequent Hypoglycemia
* Had an episode of Unresponsivness/Diabetic Coma
* Hypo Unawareness

Sarah meets all of these which is bad she does but good for this purpose

Now there is the pump side of it that health funds cover, but the optional CGMS system is not covered and comes at a cost of about $1500 with the cannulas priced at $75.00 each and they last for only 6 days. So the ongoing monthly cost is about $300.00

So we placed a call to our health fund who advised that if it was explained by the endo on how the integrated CGMS would benifit sarah and assist us to manage her condition that they could use "special consideration" to also pay for the CGMS.

So its really been good news. Our Endo is writing us a letter of support but things are looking positive for it to be approved ddance.gif

1 comment:

Jonah said...

Are the CGMS and pump integrated in some special way or is this just the minimed revel?
A lot of folks have been using CGMSes for a while and finding them very useful. Go to the CGMS section of the forums on children with diabetes and you can read lots about 'em: