Infant son T1D

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 :pray:
Thanks everyone.

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Hi @lisa_riera and welcome to the forum. I would like to ask if your son’s doctor is a pediatric endocrinologist who specializes in Type 1? Most doctors know (or “know”) Type2 since it’s much more prevalent; but know relatively little about Type 1. If yours doesn’t specialize in Type1 I encourage you to seek out one who does. It’s not unusual to let a newly diagnosed child run higher than we would like, because they’re in the honeymoon period during which their body will produce insulin unexpectedly and hopefully this will prevent severe drops. I think the honeymoon period is reactionary out of necessity. An endo who discursive in Type 1 should be able to help you navigate that as best you can.
I highly recommend you check out the book Think Like a Pancreas by Gary Scheiner. He has diabetes and works in the field so has a unique personal perspective that is particularly helpful.
I’m afraid I can’t offer anything more but hopefully you will hear from parents soon.

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Yes. He sees a pediatric endocrinologist. Sometimes his blood sugars low and sometimes pretty high. Drinking mostly breastmilk.
Thanks for info and book recommendations.

So sorry Lisa. I agree regarding Integrated Diabetes/Gary Scheiner. I have used them for years and find they provide much better guidance than my endo or at least are more accessible. There is a cost but I find it a bargain in the end.

Also there are some really helpful podcasts - juice box podcast being one.

Sounds like your sons basal setting may be off or your boluses but consult a physician or CDE prior to making changes.

Lastly I ride 100 miles every year and raise money primarily for children like your son and the parents who provide their care. Not easy stuff but it will get better. Hang in there.

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Hi Lisa, and welcome to the club nobody wants to be in. I’m a mom of a T1D son, however mine was diagnosed at age 13. I totally get the rollercoaster of emotions you are riding. First, please know there was nothing you did or didn’t do that may have cause this diagnosis. I say this because I questioned and blamed myself when my son was diagnosed.
Like you, we also have no known type 1 genetic connection in our family. Our pediatric endo said T1D is becoming more common and more often than not, there is no one else in the family with T1D. I also breastfed my son, which is I believe the healthiest for babies.
Our endo told us they were more concerned with preventing lows, rather than the high numbers. I know the highs are scary, especially after DKA. That’s how we found out too, my son spent a couple of days in ICU on an insulin drip. We were diagnosed in April 2021, and use a Tandem tslim X2 pump and Dexcom g6, and it is still a work in process to find the correct basal rates. I do know that as your son grows, the amount of insulin required will also change; and many other factors affect bg such as hormones, sickness, activity level, etc.
It’s good you are working to learn and care for your child. Reaching out to this forum can also be a great help. There are several T1D long timers on here with advise and a listening ear. Hang in there, it does get easier. I will pray for your family, and that you get that miracle.

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Thanks for your kind words. And your prayers.
I really appreciate it. :pray:

Hi Lisa, Glad to know u have a pediatric endocrinologist. As someone w T1D for 49 years, I will pray for u & ur son. Other parents of T1Ds can probably give u better advice, but here is mine- lows are far more dangerous than the highs, so err on the side of higher blood sugar numbers-especially until ur son can tell u how he feels/what he needs. I was 8 at diagnosis, no family history or other apparent cause and in those days there were no CGMs or pumps. I know it’s little comfort, but u & ur son will have an easier time navigating due to advancements in treatments. My blood sugars ran far too high for years as I rebelled and I survived & thrived, but almost didn’t survive several severe lows (before I began wearing a CGM). Hence the advice. Please reach out if we on the forums can help in any way, and God bless.

Thanks for your words. :pray: God bless you too.