Hello. My 10 month old, Francis/Frank, was diagnosed almost a month ago and although he’s doing better every day, we’re still feeling a little stranded.
We live in the smallest state and although the JDRF sent a local family to visit us, it’s tough finding anyone locally with a child near Francis’ diagnosis age.
I have a dozen life questions and our wonderful endocrinology team doesn’t have answers.
My son is still primarily breastfed which our team as never dealt with and I’d love some input on how the weaning process could go from mom’s who have been through it.
I’d like to know if there are any pitfalls or bad habits I might he establishing that will make things harder on him as he gets older.
I just want to reach out and ask if you’ve been through this and how did it go? So much of how they’re treating him seems unique to his age and I feel isolated with my uncertainty.
Any thoughts or guidance is greatly appreciated.
My daughter was diagnosed at 11 months old, she is now 4 1/2. I nursed her until she was almost 2 1/2 and her endo had no idea how to answer my questions either. She was only on shots for about two weeks then started the pump. I do not remember ever giving a bolus while breastfeeding, because there was no way to know how much she was getting and it really did not seem to affect her bs, her basals were enough.
She is a snacker. It is hard because it leads us to stack her insulin, but that is how kids eat. I still get up at least twice a night to test her. Even now she still can’t communicate her lows/highs. It is hard. We are in NY and there are progressive endo’s around but there are not a lot of kids that are this young with T1D. It is very isolating and daycares and pre-k’s are ‘scared’ and don’t know a lot about it. I have been at home with her the whole time and she starts Kindergarten in the fall and I am scared to leave her.
I understand your isolation completely. There are some of us that have gone or are going through this. It is very difficult, but you can make it, I will help how I can. Don’t be afraid to ask anything, it can get very frustrating.
But my daughter is happy. This is the only life she remembers and she had just started helping us check her blood sugar and she is happy to do it.
He will be ok.
We’re still on injections and sometimes I wish he were on a pump. What kind of pump is your daughter on and was it difficult to keep it out of her way with how the little ones play?
He has maybe 1 in range number a day and the team is constantly trying to adjust him. He’s on lantus and a 1/10th diluted humulog and it seems like his insulin needs vary drastically from day to day. The only consistent thing is that he spikes after his first nursing. Thankfully they’ve agreed to let us dose prior to that nursing to avoid the 400 spike each morning. The lack of stability and how often he’s out of range has be obsessed and paranoid about how it’s going to impact long term development.
The whole thing still scares me a little. I put on my mom jeans and power through everything that needs to get done but those jeans are the only thing keeping me from falling apart. There just isn’t time for a pity party yet, I’ll have a good cry when he’s older.
I understand it hard to get a breath or even some time for yourself without thinking about their numbers. Abbi has a minimed pump and she wears a Velcro strap that has her zippered pump case on it. It slides around to each side but it never bothered her and now she just moves it when she needs to.
Abbi also has that “dawn phenomenon” where she rises after about 230a making her morning high. It is tough when they are this young. I have a fear of a low, so she is usually on the higher side, which is bad. I have been emailing and uploading her numbers every week to her endo to get her more level so she is ready for Kindergarten.
It is very difficult when they are this young. I would imagine it being much harder with injections and having to correct all the time. The pump can calculate and give to the 0.025 unit, which is great.
It just sucks. I can’t sugar coat it. Just when you think you have it right, they grow and everything has to be readjusted. It is hard to find people to train and to trust with this responsibility so you end up sacrificing a lot of yourself. But you will get through it, and you will find a rhythm, that is a bit bumpy. Even through all my stress, Abbi is so happy and so cute and just amazing. It doesn’t really effect her at all, she just lives. And I too am waiting for that one day when she is older, and can actually start to understand and take care of this herself to actually take a breath and try to remember what just happened.
Keep going, keep reading everything and asking questions.
My son was diagnosed at a year old 12 years ago. It was so difficult in the beginning. Pumps were very new for babies and toddlers, but he started on a pump at 2.5 years old and it was life altering. I HIGHLY recommend it if your endo will go for it. I also found a health system that let me work directly with a nurse practitioner regularly who understood (or was willing to listen) to the pitfalls of treating diabetes in someone so small. He wasn’t your typical diabetic and was low ALL the time in the beginning. She worked with me in a very dedicated way to figure out what he needed. He was no longer breast feeding at diagnosis, so I can’t weigh in on that part. I will say he slept near my husband and I until he was about three years old, because he wouldn’t wake up when he was low. We still go through phases where we check him every night in the middle of the night once or twice if things aren’t stable. But he just got a continuous glucose monitor which has been fantastic to have real time readings for BS. When he was a toddler I got a small pump back that he wore in a harness on his back so he couldn’t mess with the pump itself. He wore it that way for about six months, and then we moved it to a waist belt. When I couldn’t find packs online to fit his little body, I’d have it made by someone I knew who could sew. I’t did fine that way. Before the pump he was low so frequently because we were trying to draw up such tiny amounts of insulin. It will be okay. I too was terrified of sending my son to preschool, elementary school, etc. Every step is hard, but I will say I always tried to really connect with the caregivers at each school. Now there are so many ways to connect with teachers and nurses at school (and now directly with my son since he’s older) that I was able to stay very connected with what was going on with him. For the most part I have found that as long as you communicate frequently and educate the people in the school systems, they are very responsive and have wanted my son to have a fantastic experience at school. It’s not always easy, but they are very supportive. My son is very, very active. Plays all kinds of sports. It will be okay. It will take some time to adjust, but it will be okay. I wish you all the best. Please don’t hesitate to ask other questions. I’m happy to help if I can.
I’m always encouraged when I hear of other kids who were diagnosed young and are doing well.
We’re actually just a few days away from the CGM training and a couple weeks away from pump training and starting him on that. We’re hoping that we can be more aggressive with corrections once he’s on the pump because his basal line can be lowered/suspended during the sleeping hours unlike Lantus. It’s been a really intense couple of months and I’m not sure we’re out of crisis mode yet; maybe we never will be. I am hopeful that we can keep him in range.
My husband said something the other day and it really embodied the insane thinking that has come along with this "if sleep weren’t something that people have to do, we could totally keep him in range and just give him a snack any time he started slipping."
I’m fairly certain we’ve unlocked a new parenting achievement now that we’re looking for ways to cut sleep out of our lives completely.