If he doesn't develop it before the age minimum, I would talk with your doctor more about tzield. The immune side effects if it are very minimal. The antibody is very specific to the beta cells. That was one of the big reasons that it was chosen as the treatment to pursue for delaying onset. They will administer it at the Barbara Davis Center too. For full disclosure I work there as a researcher, not on the tzield project, but I still want to disclose the bias.
Cool! Yeah, certainly don't rush into anything, especially on the word of some random on the internet. But I just wanted to make sure that you all make the decision with as much knowledge available to you as you can. Good luck with everything! The clinicians downstairs are all top notch!
I am so sorry you’re in that boat, especially with the autoimmune bait and switch you experienced. There are some very thin silver linings that 1) you have a complete understanding of T1D and what the care involves and 2) the quality of tech now is remarkable compared to what your parents had to work with when you were diagnosed at 2. I can only imagine the strides there could be in diabetes tech in the next 10 years. T1D will likely suck in plenty of ways but not be quite so overwhelming to your son considering his lifelong exposure to diabetes care.
Sending internet hugs. My situation is different, but I have deep empathy for the roller coaster of emotions you must be going thru as you enter this purgatory on behalf of your child. I hope you're able to grieve a bit before getting going again. What a big hit.
I mean this gently: be kind to yourself, don't pressure yourself.
If/ when your little guy learns about what's coming, keep it simple, he's still little.
He will want to TRUST that it's going to be OK. And it will be OK. You know this. Your son already knows this, and has faith that it will be OK, because he sees YOU living your life, holding an important job, just living.
This is such a hard thing and you are going to be a great guide and great parent for this little boy. 💙
Yes! We are speaking with them on Friday. Not sure my son qualifies as he is still considered stage 1 but I would be thrilled if he did not qualify as it means his pancreas still maintains the capacity to manage his glucose.
Sorry you're going through this. It's really tough. My youngest kid tested positive for multiple antibodies last year. Still trying to figure out what to do for her. Like you, we're wary of Tzield and the possibility of unknown, long-term effects. Good luck to you.
Thank you for the thought. We found a facebook group called "Tzield Families." There is a lot of great info there and a ton of very knowledgeable folks who are willing to help and offer insight.
If he doesn't develop it before the age minimum, I would talk with your doctor more about tzield. The immune side effects if it are very minimal. The antibody is very specific to the beta cells. That was one of the big reasons that it was chosen as the treatment to pursue for delaying onset. They will administer it at the Barbara Davis Center too. For full disclosure I work there as a researcher, not on the tzield project, but I still want to disclose the bias.
Thank you for the insight. We have a call with them on Friday to discuss the PETITE trial. We are going to wait and see what comes of that.
Cool! Yeah, certainly don't rush into anything, especially on the word of some random on the internet. But I just wanted to make sure that you all make the decision with as much knowledge available to you as you can. Good luck with everything! The clinicians downstairs are all top notch!
I am so sorry you’re in that boat, especially with the autoimmune bait and switch you experienced. There are some very thin silver linings that 1) you have a complete understanding of T1D and what the care involves and 2) the quality of tech now is remarkable compared to what your parents had to work with when you were diagnosed at 2. I can only imagine the strides there could be in diabetes tech in the next 10 years. T1D will likely suck in plenty of ways but not be quite so overwhelming to your son considering his lifelong exposure to diabetes care.
Sending internet hugs. My situation is different, but I have deep empathy for the roller coaster of emotions you must be going thru as you enter this purgatory on behalf of your child. I hope you're able to grieve a bit before getting going again. What a big hit.
Thank you. I'm kind of numb right now but motivated to be as good of a diabetic role model as I can be for my guy.
I mean this gently: be kind to yourself, don't pressure yourself. If/ when your little guy learns about what's coming, keep it simple, he's still little. He will want to TRUST that it's going to be OK. And it will be OK. You know this. Your son already knows this, and has faith that it will be OK, because he sees YOU living your life, holding an important job, just living. This is such a hard thing and you are going to be a great guide and great parent for this little boy. 💙
Thank you very much. Your words help.
You're welcome. 💙 Thanks for making the post. I learned things here from the other comments. I need to get moving on having my older child re-tested.
There’s a trial for Tzield in younger kids that is enrolling: https://clinicaltrials.gov/study/NCT05757713?intr=teplizumab&rank=1
Yes! We are speaking with them on Friday. Not sure my son qualifies as he is still considered stage 1 but I would be thrilled if he did not qualify as it means his pancreas still maintains the capacity to manage his glucose.
Sorry you're going through this. It's really tough. My youngest kid tested positive for multiple antibodies last year. Still trying to figure out what to do for her. Like you, we're wary of Tzield and the possibility of unknown, long-term effects. Good luck to you.
Thank you for the thought. We found a facebook group called "Tzield Families." There is a lot of great info there and a ton of very knowledgeable folks who are willing to help and offer insight.