...confused, newly diagnosed...what Type ?...ughhhh

Hi,

I am the mom to an amazing 6yr little girl...We were originally diagnosed with Type 1 after a well child check....AIC was 6.5...glucose in urine...and 253 finger stick.

Glucose Tolerance was 330-350....started on Lantus at night.....BUT, two weeks later....antibody test was negative.  Sooooo.....had genetic test for MODY done....guess what....it was negative also...

next endo appt is at the end of the month....not sure what to expect.   They said that it was likely that they would do a new antibody test, and it is possible that she is very early Type 1....wow, could this get more confusing.

Her bg ranges from perfect days to days that are in the 200-350 range...have seen a couple of 400s....never any keytones..... dr says this is likely honeymooning....any advice?

 

 

 


I have a  6 y.o boy with T1 - dx in May 2010.  Very early case.  For a short time they didn't quite know what to make of it all.  Glucose in urine, no ketones. By the time we got to the hospital - sugar was normal.  Lunch was his glucose test -- positive for elevated sugars after meal -- started on Lantus and Humalog.

Still honeymooning - slight changes - there is a diabetes center in Chicago (NW affiliated) that I spoke to re: trials for "reversal" no go as son so young - but they were very informative re: antibody testings.

JR

Most medical tests are not perfect. You can get both false negatives and false positives. Many times they are 99% accurate, but that still means that there is that 1% of patients who will get an inaccurate result. I think the other symptoms are very much like my son after he started on insulin. Somedays would be really good, other days kinda high and others lots of lows. His body was still making some of its own insulin. It can be hard also with young kids because the amount of 'extra' insulin they need can be very low. For instance as of 18 mos after dx, our endo still thinks my son is honeymooning because of the amounts of insulin. I would not be surprised if they re-run the test at your next endo appt and it comes back with a different result.

Hang in there, I'm sorry for your daughter's diagnosis, but I'm glad you've found Juvenation!

 

The only advice I can give you is to be strong for your little one.

My son was diagnosed 5 months ago when he was only 14 months old. 

We thought he had a really bad virus and took him to hospital.  Within an hour we were told he was Type 1 Diabetic and then spent the next week in the ICU.

The best thing we did was start him on the pump.  It helps us keep tight control his blood glucose and allows us to give him the small doses of insulin he needs. 

Good luck at your next Endo appt :)

...thank you for your post...

Spoke with Diabetic team this past week...we did raise her lantus at night....which has helped numbers a bit...but now a few days later, it seems that she has leveled out...may call them again next week to see if they want to up the dosage again...

Hoping that we don't have to start mealtime insulin....yet.  

Appx how much insulin does your little one have a day?   So very sorry for your diagnosis at such a young age...but also thankful that it was caught....going from a doctors appt or emergency room to a hospital stay is so scary...and then all the information that is thrown at you....overwhelming for a bit.

My son is only 24lbs so he requires very small amounts.  For snacks sometimes it is under .500 unit and meals is under 1 unit.

When he was on syringes we gave lantus once a day and novolog with meals.  The problem we had with syringes is that the smallest amount we could give was .500 which sometimes was too much.  The pump allows us to give very precise amounts.  We do, however, upload his pump weekly to his endocrinologist who adjust his settings accordingly. 

His settings change with weight gain, when he grows, gets a tooth, etc....