I have a six-year-old son with type 1 diabetes who also has Down Syndrome and has communication issues. We use American Sign Language to communicate with him. We are checking glucose levels on him between 12 to 18 times in a 24 hour period because his blood sugar levels fluctuate so significantly. We take three glucose readings through the night because he cannot alert us when he becomes hypoglycemic.

My wife and I are both medical professionals and we are interested in participating in any study that may offer a real time glucose monitoring device. Our son is very set in his diet (typical with Down Syndrome traits), and his diet, carbohydrate and activity levels are very constant.

If you are aware of any corporation that is interested in using us for study purposes, please put them in touch with us or suggest them to us. Our insurance will not cover constant monitoring devices for a pediatric patient and we believe our son represents a very stable candidate for special needs patients.

Regardless of the research outlook, I think your family has an excellent case for trying CGMS clinically. I would make sure every appeal has been made to your insurance companies (and to the companies who might be willing to provide a monitor gratis). Of note, a CGMS is generally not accurate enough to be relied on for hypoglycemia (in part because of the lag time to low glucose in the interstitial fluid as opposed to the circulation), but it can be helpful for trends.

LAD
Additional comments from Dr. Stuart Brink:

I would suggest that you appeal the rejection of a CGMS or DexCom, which should be done in coordination with your usual pediatric diabetes health care team to produce a statement of medical necessity. We have had increasing success with insurance carries after initial (and virtually automatic) rejections. It is sad that the American health care system is so corrupt and backward with insurance carrier rejection based upon stating that this is experimental and of no proven medical value when the FDA has already accepted CGMS, therefore, this is no longer an experimental device. And, there are now about a dozen research articles documenting improved glucose control with appropriate selection and use of CGMS.

SB
Additional comments from Jane Seley, diabetes nurse specialist:

Under these circumstances, I would think a DexCom would be covered. It often takes three letters to get it covered, so I recommend you contact your insurance company again.

JS

[Editor’s comment: Abbott’s Navigator was just approved by the FDA last week. Although it was approved for those over 18, you should contact Abbott anyway to see if it would be available for your use.

BH]