Adventures in KAndylaND

August: Our Family's Diaversary Month

August: Our Family's Diaversary Month
For every parent, the birth of their child is a significant month. But for the parent of a child with a rare disease, or a significant diagnosis, the month of diagnosis is also a time that is forever remembered. For some, especially in the diabetes world, we call this our "Diaversary". August is always a hard month for us because both of our children were diagnosed with a rare form of diabetes that month. Neonatal Diabetes

11 Years With a Life Changing Diagnosis

Andy is a 12 year old with Neonatal Diabetes and DEND Syndrome.
Eleven years ago we were entering Brenner’s Children’s Hospital in North Carolina to become pioneers for a rare disease. While Andy was not the first patient in the United States to come off of insulin, he was definitely in the inaugural class (we think one of the first 5 at least). For 17 months, we kept him alive by… Continue reading

Closing the Gap: The First Two Weeks on Carbamazepine

We are now at the end of the second week on Andy’s new medicine, Carbamazepine (Tegratol), and so far, we have had no adverse side effects.  We started him on a small dose of 2.5 ml (50 mg) twice per … Continue reading

Update

I know it’s been a while since I’ve done a major update.  Life has happened.  I have been back at work full time since August of 2014 and had a part time job that felt like a full time job … Continue reading

Spreading Awareness

One of the problems of having a rare disease is that awareness does not spread very quickly. It surprises and saddens me that we are coming up on 10 years into a new treatment for about 90% of patients with … Continue reading

New Tests, New Diagnoses, New Pills

It’s been an absolutely crazy busy month which is why I haven’t posted anything in so long.  Andy graduated from Kindergarten on Friday and the last day of school was Monday.  We are trying to find a house to buy … Continue reading

Going Up and New Families

Finally after nearly 3 months of dealing with lows, both kids are trending up in their blood sugars.  Noses are not visibly running any more on a daily basis and all stomach bug issues are gone.  Yesterday Andy had a … Continue reading

Highs and Lows with New Medicine

Katie had bruised heels as a baby due to checking her blood sugar on her heels since baby fingers are too small to stick for blood sugar checks.
Katie was diagnosed with Neonatal Diabetes at 10 days old and started on glyburide that very day. While we had a lot of experience with this rare disease with Andy, dealing with a newborn with diabetes was a different skill set altogether. . . Continue reading