Good evening.
Here a mom of a 9 month old baby. Diagnosed at 7 months. Day after 6 months shot son went into DKA. Exclusively breastfed. At that time never ever sick before. Not even a runny nose. Nothing. Antibodies-all negative. Neonatal panel to see if it is genetic - negative. Dr still wants to treat as T1D due to his presentation. Currently has a pump. What works some days doesn’t work other. Diet mostly breastmilk. Still trying to figure out what to feed. Sometimes high and hard to get down. And others working hard to prevent dropping. So confused. Recommendations? What other test should I ask for? What else could it be?
Hoping to get all this figured out. And a miracle
Thanks everyone.
I am so sorry to here that, I think it might be T1D but maybe you should do insulin injections later on if you can, pumps can have problems like that, I know how terrifying that is on account of me leaving the hospital recently, if you can get your babies A1C that’d go a long way in identifying how long there’s been a problem, and see if it’s instant or what happened
Hi @lisa_riera and welcome to the forum. I’m sorry your child was diagnosed at such a very young age. I think there are some parents of infants with Type1 on the forum so hopefully they will chime in.
It may take some time to find the right insulin regimen for your little one. Our bodies often need different amounts of background - or basal insulin during the day and if there are patterns of ups or downs during particular times, those rates may need to be adjusted. Does your son have a continuous glucose monitor (CGM)? If so the graphs can be helpful in adjusting the rates, but you must do this under your doctor’s guidance until you have the experience to do it on your own.
Insulin is also given when we eat - called a bolus, and the amount is based on the number of carbs we take in, which in turn is based on how much we eat. I’ve never had to measure the carbs in breast milk but your nutritionist might be able to help you determine the quantity and carbs based on how long he nurses, so you will know how much insulin to give. If he goes high after eating he’s not getting enough, and if his numbers drop he’s getting too much, so that can be adjusted.
The key is to look for patterns - if you use a CGM the graphs will be very helpful. Your doctor should review them and determine what adjustments to make, and it can take time to see what works best.
This is not medical advice, just some suggestions of what to look for and discuss with your doctor.
Keeping records of how long he nurses and whatever else he is getting besides breast milk, will help your doctor adjust his insulin.
I highly recommend you check out the book Think Like a Pancreas by Gary Scheiner. He has Type1 diabetes and works in the field so has a unique personal perspective that is particularly helpful.
Hi, an infant is a huge challenge because communication is impossible. You cannot reasonably understand the babies chemistry without a constant monitoring system. You will begin to understand what food intake assimilation times are and shot assimilation times are. Please use Libre or Dexcom, whichever you choose. That’s the only way you will understand how your baby feels without, verbal communication. Three things affect everything food shot and exercise/activity. All contribute to a healthy and predictable life but only with constant monitoring. You have my support. Love JF
You deserve to have an endocrinologist and endocrinologist office that has experience in dealing with infants with diabetes. I hope you have one. My niece has a daughter diagnosed at age 5, which is certainly not the same. But she kept looking until she found an endocrinologist with whom she could work for managing her daughter’s diabetes.