[Previous Months][Date Index][Thread Index][Join - Register][Login]
[Message Prev][Message Next][Thread Prev][Thread Next]
re: [IP] Diabetes Prevention Trial -Type I
My daughter tested negative for Islet Cell Antibodies (ICA) in the DPT trials
2 or 3 times. She then had the Hep B series of injected vaccine and
subsequently tests ICA+. (correlation?) Upon further testing she was
thankfully found to be negative for AntiGAD, ICA512 and IAA. She does not
show presence of the protective gene unfortunately. At the time of the
testing, they were unable to draw the blood for the IVGTT (intravenous
glucose tolerance test) to determine the FPIR (first phase insulin response).
She had a stubborn valve and the RN was very compassionate and didn't want
to continue trying. We were going to go back at a later date to complete
that portion of the testing. After scouring the internet I decided not to
pursue further testing at this time.
Frankly, I was ill prepared to find that she tested ICA+. It came as a great
shock to me. One would think because my son has had diabetes for so many
years, it would have been an easier thing to accept, but it was not. I urge
you to read some dated material at http://www.ispad.org/articles.html - many
excellent prevention articles, but the one I direct you to is the one about
psychological impact of the testing. I feel strenuously resentful that I was
not counseled PRIOR to having her tested.
If a child is found to be at moderate risk, they would put your child in the
oral insulin trials. This is a double blind trial, so know that it's
possible that your child would be involved in invasive procedures, extensive
testing, and may be receiving placebo.
The children at high risk are given insulin via sub-q injection. That
portion is NOT double blinded, the kids are NEVER given placebo in the
This is a very personal decision. You have to decide how much you are
willing to let your little one be subjected to with blood tests,
psychological testing ..... Look into all aspects before diving headfirst
into this study. I wish they would release some data from the study already,
so we would know if it's worth subjecting our children to all of this. They
would not even reveal the titre of the ICA result to the parents. What kind
of informed consent is this?
I do know of some people who have their children involved in the injection
portion of the trial, and they are very pleased with the results. They do
feel it has delayed onset. Others who have children who were in the
monitored closely portion of the trial without any intervention, were less
than pleased as the parents themselves determined when their child onset
before the researchers in the trial were willing to acknoweledge the same!
Insulin Pumpers website http://www.insulin-pumpers.org/
for HELP or to subscribe/unsubscribe, contact: HELP@insulin-pumpers.org