Our 11-month-old son was diagnosed with type 1 diabetes three weeks ago when he was 10 months, 1 week old. He went into DKA with a blood sugar of 583 mg/dl [32.4 mmol/L]. His HbA1c was 9.0 at the time of diagnosis. I would be more than happy if you could advise on my following questions.
My son’s ICA and GAD autoantibodies are positive. On Children with Diabetes, it is recommended to do genetical testing for Kir6.2 mutations for diagnosis below 1 year of age, in order to determine if it’s neonatal diabetes. However, if the autoantibodies are positive as in our case, is there still a chance that diabetes might be caused by genetical mutation? Do you recommend that we do the genetical testing? I am giving my son insulin injections twice a day, one at 6 a.m. and one at 6 p.m. The type of the insulin prescribed to us is Humalog Mix 25. If the blood sugar rises above 300 mg/dl [16.7 mmol/L] in between the two injections, then we give him an extra shot of 0.5 units of Humalog. On the prospectus of these two insulins, it is written that for under 12 years of age Regular insulin must be used first of all. What type of insulin is generally recommended for use on small babies? I am still breastfeeding my baby. He is not eating enough solid food so his main nutrition comes from breast milk. We co-sleep and he wants to nurse at night several times. This makes his blood sugar increase up to 400 mg/dl [22.2 mmol/L] around 3 a.m. My diabetes nurse told me to stop breastfeeding, since we cannot know the calories in breast milk and amount of breast milk my baby drinks. I do not want to wean right now. Is there any way that one can continue breastfeeding a type 1 diabetic baby? Should we put the nursing sessions on a schedule like every 2 to 3 hours? (Until now I was nursing on my baby’s demand.) For babies of this age, do you recommend insulin injections or insulin pumps? Could an insulin pump be a solution to our breastfeeding sessions? I would like to learn what the approach of the doctors in the U.S. is, using injections or pump for small, nursing babies.

You are asking some difficult-to-answer questions and there are no clear-cut answers.

With positive antibodies, it is likely that this is not neonatal diabetes that would respond to different medications rather than insulin but the only real way to know is to have the genes tested. This can be done free-of-charge if you contact Dr. Andrew Hattersley in the UK. In coordination with ISPAD, Dr. Hattersley will do the expensive testing and provide the answers in a few week, let you know what samples are needed, how to ship them, etc. You can go to the ISPAD website and get the exact contact information from the site quite easily.

Most pediatric diabetologists would prefer breastfeeding but with some schedule so that you would then have some consistency of timing. Actually, the amount that your infant will feed is probably rather consistent so I would disagree with what your nursing advisors have said. Instead of random “on-demand” times that would then allow you to deliver insulin. Most of us would use an insulin pump to allow small amounts to be delivered in a basal fashion and then a burst of bolus analog insulin (Humalog, NovoLog/NovoRapid or Apidra) to cover the feedings. Almost none of us would use premixed insulins since they allow much less variability and adaptability. Basal insulin without a pump would be either Levemir or Lantus, usually twice-a-day in an attempt to avoid overnight NPH peaks and overnight hypoglycemia. All of these decisions would be based on actual frequent blood glucose monitoring to look for patterns. In parts of the world where the newer more reliable analogs are not available or too expensive, then we would consider smaller overlapping doses of NPH, usually at breakfast and bedtime but sometimes also mid-day also based on blood sugar readings and with regular insulin before meals and adapted according to actual blood sugar reading before and after feedings.

I attach a chapter I wrote on this topic several years ago that is still valid, although with more and more insulin pumps being used nowadays and virtually everyone in Europe, Canada, U..S., Israel, Australia and Japan using analogs and a basal-bolus approach, if not the insulin pumps: Brink S. Type 1 diabetes mellitus in the very young child. This is part of Evidence Based Paediatric and Adolescent Diabetes.

You may also want to consider getting a second opinion from the pediatric diabetes teams in Istanbul or Izmir who may have more experience with such very young children. The ISPAD website will have names, addresses and other contact information for pediatric diabetologists in Turkey who also are members of ISPAD.

Lastly, the ISPAD Guidelines has a treatment section on preschoolers with diabetes that also is evidence based and also would be available free-of-charge on the ISPAD website under the guidelines toolbar. Type 1 Diabetes in Children, Adolescents and Young Adults, 4th US edition by Ragnar Hanas and Understanding Diabetes by Dr. Peter Chase are also excellent as further resources as is Jean Betschart’s excellent (although somewhat older) guide: Diabetes Care for Babies, Toddlers and Preschoolers: A Reassuring Guide.

SB