Is permanent neonatal diabetes basically considered should be treated the same as T1DM?as

[enzo233]

My daughter MAY was diagnosed with T1DM October last year, but considering she was only 10 months old at that time, the Doctor suggested a DNA test, in case that was actually a late triggered PNDM.
May was pretty weak then, has been transfered out from PICU for only a few days, still recovering from that severe DKA, So I decided to take her home and rest for a while before the DNA test.
Then there comes the Covid-19, Labs were shut down, I waited more than 4 months to get May's DNA report. It turns out that she is actually having PNDM, caused by ABCC8 mutation.
I was pretty happy then, because the doc told me that May could use Glibenclamide (INN）instead of insulin injection if she was PNDM.
We take about a week to do the trial in hospital. The dose of Glibenclamide raises from 2mg/day from 8mg/day but the glucose level shows no sign of getting controlled.
I'm wondering if there is other PNDM patient here, do you have other medicine instead of Glibenclamide in your area? IIf there is other option, I'd like to give it a try.
I see no forum of neonatal diabetes here, Is it because PDNM is commonly considered the same as T1DM?

 

[Dark Horse]

Neonatal diabetes is very rare (less than 100 people diagnosed with neonatal diabetes in the UK) which might explain why there's no dedicated forum. https://www.diabetes.org.uk/diabetes-the-basics/other-types-of-diabetes/neonatal-diabetes

If glibenclamide is not controlling the blood glucose when used at recommended levels, you need to talk to your doctor.

 

[enzo233]

Thanky you for posting the link above. I found some good information at diabetesgenes.org which is showed at the end of the article.

Doctor suggests insulin treatment, and we are using insulin pump as many T1DM patients are.
Even type1 is very rare disease in China, not to mention the neonatal diabetes, endocrinologists here are very used to dealing with type2 diabetes, but kinda lack of the experience in the T1DM and PNDM field. So I often come here hoping find some infos.
My daughter's doctor can't explain why May's teeth development is so delayed, but the articles mentioned that, I'm gonna share it with my doctor, to see if it's neccesary to keep on using glibenclamide evan it can't controll her glucose level, in order to treat the development delay.