“Cook Children's HI center saved our daughter's life.” – Hannah’s Mom
Hannah was born in Owensboro, Kentucky at 10 lbs, 5 weeks early. Her blood sugar was 31, but doctors believed it was due to my Type 1 Diabetes. We spent the next 16 days in the NICU fighting low blood sugar. We found a formula that was able to maintain her blood sugar levels, or so we thought, and they sent us home. When it was time to eat she would let everyone know. We had no clue her blood sugar was low.
At 4 months old she had to get tubes placed in her ears. The night before surgery she woke up at 2am crying for food, however she couldn't eat, by 3amshe started acting odd and I checked her blood sugar. It was 54. I decided not to over react and waited until 4am to check again... 41. I called her doctor and rushed her to the pre-op floor so they could monitor her. By the time we got there Hannah's blood sugar was 14. She started to seize soon after we got there. Her blood sugar was brought up with dextrose and she was sent home. I didn't feel comfortable with that so we took her to the nearest children's hospital. By the time we got there she was at 31 and crashing. Finally, a doctor suspected that Hannah had hyperinsulinism and ran labs, but for the next 3 weeks medication was not working.
I found a HI family Facebook group and was directed to Cook Children's Medical Center and Dr. Thornton. I reached out to Dr. Thornton and he called me within 24 hours. We were able to get life flighted to Texas and spent 2 weeks there. Cook Children's HI center saved our daughter's life. Hannah was found to have diffuse hyperinsulinism, had a g-tube placed for continuous night feeds and was started on diazoxide. She was semi-responsive to diazoxide and was receiving the max dose though her sugar would still drop and it was affecting her heart so she had to be taken off of it. She is also allergic to octreotide and lanreotide.
Hannah is now a year old, receives tube feedings 24/7 that requires her to wear a backpack to maintain her sugar and her blood sugar is monitored. She has come a long way but still has a long way to go. More research is desperately needed for this disease.
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