Neonatal diabetes

[Hymergirl]

Hi all,

Many thanks for so many replies!

Emmachapman86- wonderful news to hear that your girl who was diagnosed at several weeks old has now turned 3 years old! Do you know whether she has the permanent or transient type?

BrownsThe- if you child was diagnosed at 3 years old then they don't have neonatal diabetes. I think it can only be diagnosed if children under 6 months old, so he has a different type of diabetes I believe, but please correct me if I am wrong?

Catapillar- we are indeed awaiting results of genetic testing at Exeter

Azure- thanks for so many helpful comments!

Kuku babie- sorry I'm a little confused by all your messages! You have a son with transient neonatal diabetes? How long did it last for before it went away? Did you have genetic testing done?

Our story (briefly) - we rushed into a&e with breathing difficulties, lethargy and dehydration. She was diagnosed with diabetes after a blood sugar test. The strange breathing/dehydration were due to extreme ketone acidosis. Her blood sugar was 49mmol/l and blood ph6.9. For those worried about indicators in babies- lethargy to start with, then dehydration and a grey skin colour, then laboured breathing when in acidosis as the child tries to rid themselves of the acid. Our daughter also had extreme weight loss (born at 5lbs 13, was only 4lbs 13 when rushed to a&e), although this weight loss happened very quickly. It almost seems that she was coping for a long time, then all if a sudden she reached a crisis point, because all the symptoms appeared over just a 12hr period. We are awaiting results of genetic testing now. It seems she has the transient subtype, as she is no longer on insulin and is regulating her own sugars. We are monitoring via heel prick twice a day.

If anyone needs/wants any further clarification, please just ask. Anything I can do to stop this from happening to anyone else, I'll be extremely happy!!!

Best wishes all

 

[Tabbie17]

Hi I know this was a while back or if it will help/reassure you at all but I was born with this and it was identified shortly after birth, was just wondering if it was confirmed as Transient Neonatal Diabetes as it is a very rare condition, and if so have you had your children’s genes tested as it tends to be caused by a genetic fault on chromosome 6. I’ve recently been re-diagnosed after growing out of it at around 6 months, and have lived nearly 19 years without it, if you have any questions about it feel free to ask I’m no expert but I could tell you a lot abou t. Just for a note I was born 3lbs 2 so if your baby was similar to this it might well be this form of it

 

[Hymergirl]

Hi Tabbie17! Sorry for my slow response, but I had stopped checking this forum so often as no-one had replied on my topic for a while. It's great to hear from you, and to hear your story.
My little girl definitely has transient neonatal diabetes, and has undergone the genetic tests, but she is within the 18% of cases where they cannot identify a genetic cause. She was diagnosed at 3 weeks, but off insulin by 5 weeks, so seems to be different from yourself. Also she was 5lbs 13 at birth, dropping to 4lbs 13 at her most ill, so a bit larger than you as well.
If you don't mind, would you share a bit more information with us? Do you know whether diabetes runs in your family? Were you injected with insulin as a baby? Have you had to monitor your blood sugars continually whilst growing up? Feel free to ignore any questions you think are too nosy, I won't be at all offended!!
Again, great to hear from you and thanks for replying. It's such a rare condition as you say, so it's really great to make contact!!

 

[Hymergirl]

Hi all, An update in case anyone is watching this thread and/or in a similar situation - my daughter's diabetes returned at ~8 months old, so she was in remission for only 6 months which surprised everyone including the doctors! They still haven't identified which genetic mutation(s) she has, but they have ruled out all of the known mutations. They think she has something unique, as it reoccurred so unexpectedly. She is back on insulin injections, three a day, and many finger/heel pricks to keep an eye on sugar levels. If this sounds familiar to anyone, please get in touch!