My Son's Story Could Help You

[CanadianMom]

Today is my first post and I hope my son's story will help some of you. My son was diagnosed with neonatal diabetes at 10 weeks of age. We brought him to the hospital after two weeks of constant crying when he suddenly presented with what looked like muscle spasms in his arms and legs. We were told these twitches were clonic seizures and he had an MRI and a CT scan done - both of which came back with puzzling results. In fact, no one seems to know, (to this day!) what his imaging means because no one in Toronto or anywhere else in the world (his results were sent to experts as far away as The Netherlands) has ever seen anything like it. Regardless, his blood glucose measured at 29 mmol/L so he was treated with insulin and his seizures abated with medication. The endocrinology team sent my son's DNA to a specialized lab in England to check for a genetic mutation that could explain his symptoms and it came back positive. Now, my son IS COMPLETELY OFF INSULIN and takes a tablet of sulphonylurea once in the morning and once at night and his blood sugar is controlled better than ever. He is seven months old and he has not had a seizure since he left the hospital at two and a half months, (he is still on a low dose of medication for the seizure activity that is still showing up on his EEG). The following website provides information for ANY PARENT WHOSE CHILD WAS DIAGNOSED WITH DIABETES WITHIN THE FIRST SIX MONTHS OF LIFE. The DNA test is covered by research grants and it could change your lives. My husband has the identical genetic mutation and since my son was diagnosed my husband will now, after 25 years of insulin use, have the chance to treat his diabetes with oral medication, too. We are keeping our fingers crossed...he starts the transition on Monday. Here is the website with information on: http://www.projects.ex.ac.uk/diabetesgenes/.

[Flutterby]

From taking alook at the website that you provided really fast (didn't read all the way through it) it looks as though it is thought that your son, and posibly your husband, have MODY, which is DIFFERENT that type 1.. Type 1 your pancreas makes NO insulin.. your body attacks the islet cells in the pancreas and it no longer can produce insulin.. those with type 1 can not take a pill.. insulin does not come in pill form because its digested so it does no good.. I'm glad to hear that your son is doing better.. there is also a form of diabetes in infants where their body is just not developed enough to produce enough insulin and they eventually 'outgrow' it because their body eventually matures enough to produce its own..

again, I'm glad that your son is doing so well.. must have been very scary!

[EmmasMom]

Wow! How amazing and wonderful that your son is one of the few with this rare form of diabetes that has been able to stop taking insulin!!!!

My daughter was dx'd at 9 months, so we had the testing done just to be sure, but she does not have the gene mutation.
Several children on this site were tested and none came back positive, but we were all hopeful that this discovery would help many other children.

Congratulations!

[sam1nat2]

I believe our next door neighbor has this type of diabetes. Her dad also has the mutation. She is now in 5th grade and just recently started taking daily injections of lantus only. I'm not sure the name of the oral medication she took or if she still does.
Glad to hear things are looking good for your little guy!!