Has anyone thought about putting their child in a clinical trial? I am thinking of putting my 10 year old in a trial where they use the TB shot multiple times. The study looked promising on adults.
Kathy @Lilitkathy1, if his endocrinologist and others on his care team do NOT have serious objection, I would [I would myself too] apply for acceptance in the “trial”.
I’ve been in several trials over the years - some developed the tools your son is now “just accepting as routine” taking for granted, and others that never saw the light of day - and credit much of the very productive life I’ve had on them. I’ve lived a very good life, despite diabetes, beyond normal life expectancy - 62 with diabetes.
We put our daughter in the Extend study which focuses on extending the honeymoon of newly diagnosed (within 90 days I think) T1 Diabetics. She was 8 years old at the time she started the study and she is about to complete the trial medication phase. Overall, the experience has been positive. While we do not know if she is in the control group or getting real medication, we can say happily that she is doing pretty well. Each visit gives her a full physical, she is closely monitored for any signs of side effects, and gets regular consults with a top child endo in the field. Her A1c is in the low 5s (5.2, 5.3) and she has not been bolusing since the study began. She only gets a nightly Lantus injection and eats a strict, low glycemic, limited carb diet.
Maybe getting an early diagnosis gave her a better honeymoon, but if this study can extend it, even by a few months, we feel it was worth it.
Yes, we’ve considered this for our son. He was rejected from one trial because he’s already getting allergy shots, but we’re getting ready to apply to the Faustman Labs trial that you mentioned. I don’t see any reason not to, the vaccine is safe, been around for a century.
Faustman Labs will email you the paperwork if you contact them via their website.
When my daughter was first diagnosed she was enrolled in a trial at the age of 11. it lasted two years. With the trial she had regular doctor visits and great control. if at any time she did not want to continue we were advised she could drop out at any time, All in all was a good experience.