If your child was diagnosed at less than one year...

[Nancy in VA]

Have you wondered if they might have monogenic diabetes?

I mentioned a few weeks back that I met a mother of a child that "thought" he had Type 1 and instead he has "monogenic" diabetes - and now he can take pills to stimulate his pancreatic insulin production instead of insulin injections.

I had read about it because my endo wrote an article about it.

She actually has TWO patients now - one is an 18-year-old who had been on injections his whole life and is now on pills.

I'm just curious since I have seen so many that had little ones diagnosed so young - and I thought 24 months was young!

[deafmack]

Thanks for posting this. Monogenic Diabetes is very rare and comes in two forms. Transient and permanent. I think it is a good idea if a person was diagnosed before 1 year of age to be tested like you suggested.

[kiwikid]

I have looked into it and I have the paperwork here to have Rachel tested next time we have a blood draw. I think it unlikely for us though,as Rachel had such high antibody levels at diagnosis. There is more info here http://www.diabetesgenes.org/ :cwds:

[KeltonsMom]

I have told my Endo this over and over again that neither Kelton or I were diagnosed at less than one year old..But he insists on having both of us tested for MODY..More so me than Kelton..I do understand his reasons for wanting to test me based only on the amount or lack of insulin I now need..It is crazy how my insulin needs have dropped over the past few weeks..

[Andy'sMom]

anyone in this category may also want to have testing done for neonatal diabetes, although that's more likely if diagnosis was before 6 months - Andy was tested anyway since he was dx at 10 months and we wanted to be sure. It wasn't that for us, but you never know!!

BTW - are you with Children's Hospital in DC? Our endo there also has an 18 year old who has MODY but was on shots for most of his life - now on pills - amazing!

[frizzyrazzy]

I have told my Endo this over and over again that neither Kelton or I were diagnosed at less than one year old..But he insists on having both of us tested for MODY..More so me than Kelton..I do understand his reasons for wanting to test me based only on the amount or lack of insulin I now need..It is crazy how my insulin needs have dropped over the past few weeks..

correct me if I'm wrong, but I think MODY that your dr is talking about is different than the diabetes that occurs in infants that the OP was talking about.

[KeltonsMom]

correct me if I'm wrong, but I think MODY that your dr is talking about is different than the diabetes that occurs in infants that the OP was talking about.

Whoops I thought that monogenic diabetes was MODY :o

[Nancy in VA]

anyone in this category may also want to have testing done for neonatal diabetes, although that's more likely if diagnosis was before 6 months - Andy was tested anyway since he was dx at 10 months and we wanted to be sure. It wasn't that for us, but you never know!!

BTW - are you with Children's Hospital in DC? Our endo there also has an 18 year old who has MODY but was on shots for most of his life - now on pills - amazing!

Yep, same Endo - Dr. C. She told me about the 18 year old. I had met a 6 year old whose older brother is on my son's soccer team and she was moving to the Children's practice because Dr. C is there

[frizzyrazzy]

Whoops I thought that monogenic diabetes was MODY :o
MODY is A form of monogenetic diabetes and the neonatal one is also A form of monogenetic diabetes but they're different genes. Usually right now when people talk monogenetic they are talking about the neonatal one. MODY can be diagnosed later in life .:)

[T1Spouse&Proud]

Andy was tested anyway since he was dx at 10 months and we wanted to be sure.

A question for you or other parents with kids Dx before 12 months, what are the signs and symptoms that you noticed in your infants? I think we all know the signs later in adolescents, but for infants who urinate frequently and are cranky and cry alot anyway, is there anything to look out for? Or just wait for ped visits and labs? Thanks.

[Nancy in VA]

The woman that I know said that her son didn't thrive from the start. Had trouble putting on weight, etc. The found it at about 10 weeks

[momtojess]

Have you wondered if they might have monogenic diabetes?

I mentioned a few weeks back that I met a mother of a child that "thought" he had Type 1 and instead he has "monogenic" diabetes - and now he can take pills to stimulate his pancreatic insulin production instead of insulin injections.

I had read about it because my endo wrote an article about it.

She actually has TWO patients now - one is an 18-year-old who had been on injections his whole life and is now on pills.

I'm just curious since I have seen so many that had little ones diagnosed so young - and I thought 24 months was young!

we sent dna samples to the dr in chicago that is doing a study, and then Jessi's endo actually ran the antibodies bloodwork last summer. She is definately type 1.

A question for you or other parents with kids Dx before 12 months, what are the signs and symptoms that you noticed in your infants? I think we all know the signs later in adolescents, but for infants who urinate frequently and are cranky and cry alot anyway, is there anything to look out for? Or just wait for ped visits and labs? Thanks.

Jess soaked through diapers about an hour after I changed her. She wasnt being her self, so we went to the dr on friday. They tested for strep, and said it was just a virus.. by saturday night we were in the ICU at childrens. She was 11 months

[BrendaK]

Carson had the study done at the University of Chicago for the neonatal form and he was negative. We are currently waiting for 6 more MODY tests to come back.

I seriously doubt he has MODY, though. Since autoimmune disease runs rampant in my family, that's probably what it is, straight up type 1. Just a very young, unfortunate diagnosis.

[EmmasMom]

Emma was tested for Kir6.2 which is the genetic mutation that normally causes neonatal monogenic diabetes. The tests were negative.

When we started seeing endo's at the Barbara Davis Center they did labs that showed very high auto-antibody levels which prove that she's type 1. Disappointing. I don't understand why they don't test all kids for the AI's at dx's.

Emma's symptoms could've been easily been missed for a while by someone w/o D knowledge. As soon as she started wanting more and more milk I knew something was wrong. Babies should never be really thirsty and she was. But she looked fine in the pedi's office and we were actually sent home, but only after I'd insisted on labs. They called us almost immediately to take her to the hospital. Her labs were "critical" even though she looked OK to everyone else. She would've been very, very sick if I hadn't pushed for those labs.
In hindsight she probably had blood sugar problems from birth. She was a miserable baby and had horrible "colic", so we thought. There were very vague signs that something was wrong, but nothing pointed to D until the final days before her dx's. I assume her little beta cells never functioned properly and that she had constant bg swings that made her feel awful. Who knows...