I’ve been reading posts here and so many of you know so much! I thought I should ask this question here.
My 9 month old baby diagnosed as a T1D, 2 months ago.
1 day after his 6 months shots we ended up in the hospital with DKA. Very weird. Never sick before. Anyways drs say “nothing” to do w/ shots.
Here is my big question: my son is negative for all antibodies. He had GAD, Islet cell and insulin Ab test-
Also he had a neonatal panel done as well for different genetic mutations- all negative as well.
He is breastfeed and I take levothyroxine for hypothyroidism for more than 20+ years.
I feel there is something not adding up. He is on the pump right now.
Any ideas??
Thanks in advance.
Hello @lisa_riera welcome to Type One Nation. I know it’s hard for a number of reasons. I’m a Dad to a really cool kid (he doesn’t have T1) and I’d go to the end of the Earth for him. Type 1 is an autoimmune disease. For whatever reason your baby’s body attacked its own insulin cells. Antibody tests aren’t always conclusive. This isn’t going to go away and he will need insulin the rest of his life. We have members here taking insulin for 70+ years starting at a time when insulin was practically first available. All I’m trying to say is that it isn’t something you did or something you should have done, and there’s no going back. The pump is a great tool and so is CGM I am glad you have them available.
I’m so sorry… here’s some info. It’s all I could find but I really hope for both of your sakes that it goes away. Good luck on your journey either way.
Neonatal Diabetes
Diabetes diagnosed in babies is quite rare. Diabetes diagnosed within the first 6 months of life is called neonatal diabetes mellitus. Neonatal diabetes may be permanent or temporary
Babies diagnosed with diabetes often have a single gene cause (monogenic). Those diagnosed before 6 months of age have an 80% chance of that being linked to a DNA issue. For those diagnosed from 6 months to 1 year, that percentage decreases to about 5%.
The most common genes associated with neonatal diabetes are listed below - Click on each link to learn more
I’m in a similar situation- negative for antibodies and MODY.
I use a normal amount of insulin for my age and BMI (I’m 16 years old). I haven’t had a honeymoon period, wasn’t in DKA when I was diagnosed even though my BG was 800 and my A1c was so high they couldn’t read it. It’s fairly easy for me to maintain tight control (maybe it’s just me, maybe my diabetes)
I just had an endo appointment today and the diabetes nurse also has T1D and no antibodies or MODY. She said that when she was first diagnosed she was on very little insulin for a few years, like an extended honeymoon period, and then later started needing more insulin and now she uses a ‘normal’ amount. I asked her if she notices anything different from people with T1D and she said no.
I’m probably going to get enrolled in the RADIANT study, you can find out more about it online. It’s basically a study that’s trying to figure out who gets diabetes and why and they’re trying to get people without antibodies to enroll.
My heart goes out to you and your family and I wish all the best for your child’s health. I could only imagine what you are going through and hope you are blessed with strength and courage!!!
My Endo ran the following antibody tests on me: GAD-65 Ab, ICA-512 Auto Ab, Insulin Autoantibody and Zinc Transporter 8 (ZNT8) Antibody. He ran all 4 tests (which he says they normally don’t do) as I went through DKA at Stanford hospital (ER/ICU for three days) and had every Dr stumped on my case given I’ve had no sign of ever being pre-diabetic, no diabetes in family, and am fit/active/eat healthy. Endo will be running more tests over the coming months to see if my pancreas begins to produce insulin again given all 4 tests were negative for antibodies. It’s his belief that there is a good chance I may end up being T2. I hope for the same for your child.