Can someone please explain to me what the honeymoon phase is and why I may want to prolong it for my daughter? We were given SO much info at the hospital that a lot of it is a blur that is slowly coming back. Her pediatric endocrinologist has recommended a clinical trial that she qualifies for called "T1DAL". He says it will hopefully prolong her honeymoon phase. What the heck does that mean? Do I want to do that? I am so overwhelmed with just the T1D diagnosis that I can't even begin to understand if participating in this trial would be good for her or not. He also says that we have to decide quickly if we want her to participate because the study is going to be closing soon. AAAAHHHH!!!
In a nutshell, the honeymoon phase is the time after onset that the body is still producing some insulin. This can last from a couple of months to up to two years. The study you are considering is investigating a drug that has already been approved by the FDA, to see if it can slow or stop the autoimmune process that is killing off the insulin-producing cells in the pancreas. It looks like it would involve weekly and/or monthly injections and some follow-ups. There's more information here: www.t1dal.org/about-t1dal
Whether or not your daughter participates in the study is a very personal decision, and, unfortunately, it has to be made soon after diagnosis while the pancreas is still producing insulin. Does your daughter want to participate? How is she going to handle the additional poking and prodding and shots? How will she respond if there is no help from the drug being administered (there will be a control group receiving a placebo)? How will YOU handle all of this?
When our son was diagnosed, we were also approached about a study. We decided against it for several reasons. First and foremost, our son was terrified of doctors, hospitals, nurses, etc., and was barely coping with the demands being placed on him with pricks and pokes and injections. Also, our family was just plain overwhelmed with the diagnosis and trying to adjust and figure it all out. I would have liked very much for our son to have as many insulin-producing cells as possible survive, but the study offered just did not seem do-able for us.
Take a deep breath. Keep in mind this is not a confirmed treatment, and may or may not benefit your daughter. It is not expected that the drug will reverse Type 1, just that it MAY slow or halt the destruction of pancreatic cells. If you pass on the study, it won't be the end of the world, and you're not denying your daughter the possibility of a cure.
For the record, I'm no medical expert, just a mom who's been through the same decision you're going through now.
My son's honeymoon phase lasted only 2 months and kicked out while on vacation which made things really tough since as it was our schedule was completely off during the vacation.
It is different for everyone and the benefit is that your daughter will require less insulin during the honeymoon stage and will have an easier time controlling her blood sugars.
I am not sure if it is better to prolong the honeymoon phase since eventually when it is over all insulin requirement will be adjusted and then the highs and lows begin :-( as blood sugars will act like a "true" diabetics.
I was not offered this study and I am not sure I would have done it. Since my son's honeymoon was so short I may have said yes in the end. However, I don't know what this study entails so it is hard for me to give my opinion.
There is so much information to take in (and I am a diabetic myself and grew up with 2 diabetics in my immediate family) so do what you feel comfortable with.
Eventually, all your daughter's beta cells in her pancreas which supplies the insulin will die off and she will be out of the honeymoon phase.
Good luck with your decision :-)
I wish we could have been in a study. I was a little too old:(. At least something good could have come from the diagnosis of my daughter.
in retrospect I think we would have prolonged our son's honeymoon if we could have. He was diagnosed when he was 7 about year and a half ago. The one thing we miss most about honeymoon is putting him to bed with little or no insulin and being confident he would wake up at a good number. Now we are adjusting and staying up late trying to make sure he has enough but of course not too much.
I was also somewhat frantic to get into a honeymoon study at the time, thinking that there might be an opportunity for a cure that would vanish once the rest of his insulin production ended. Now that it is known that beta cells do regenerate there is at least the possibility that interventions that stop T cells from attacking beta cells could also help people long out of honeymoon as well as those still in it (although it is still not known how much function would be recovered if the disease process could be stopped).
Sorry, I know that's a lot to weigh. The first days, weeks and months are totally overwhelming, but you will get a lot of your life back and your daughter will have the same chance to thrive and be happy.