Micah and Jasmine's Story
"Cook Children’s has helped us tremendously to manage this very difficult disease. Cook Children’s Hyperinsulinism Center is the only team I want to care for Micah and Jasmine." - Micah and Jasmine's Mom
My second child and fourth child were born with diffuse hyperinsulinism. On August 5th, 2010 Micah was born at 9lbs 9 oz. His blood sugars were monitored due to my gestational diabetes and since they were all over 40 they sent us home and were told to feed him frequently. He refused one feed and right after had a seizure. I called 911 and when the responders arrived his blood sugar was 11!
We spent a week in the hospital on an IV form of sugar and they said his blood sugar would normalize and discharged us again. At his 2 month appointment for immunizations he seized twice. We were readmitted for 2 weeks on the IV sugar again and the genetic tests came back positive for hyperinsulinism. Finally we were able to transfer to the experts at Cook Children’s.
After Micah did not respond to the medication Diazoxide, he had 95-98% of his pancreas removed during surgery. His blood sugar still dropped and he was started on Octreotide, frequent feeding and night tube feeds through his g-button that was placed. Eventually he transitioned to a long acting medication that is 1 injection per month, Somatuline, with frequent feedings. The injection is expensive and eventually the insurance would not pay and he switched to night tube feeds again. Later, he came off of medication and tube feeds. When he was 6 years old he had the feeding tube removed. Right now he is in the clear, though eventually will become a Type 1 diabetic.
Five years after Micah was born, Jasmine was born. Jasmine had long hospitalizations where the local hospital would continue to wait to see if her low blood sugar would resolve. Despite my best efforts, insurance continued to not approve the transfer to Cook Children’s. She also underwent pancreas surgery, her blood sugar continued to drop and was dependent on 24/7 feedings through her g-button. After much insistence her transfer to Cook Children’s was finally approved. At Cook Children’s Dr. Thornton put her on a regimen that made more sense. She is now on night tube feeds, four tube feedings during the day and Somatuline 1x/month. Jasmine had speech therapy to learn to eat and will eat a bit.
Cook Children’s has helped us tremendously to manage this very difficult disease. Cook Children’s Hyperinsulinism Center is the only team I want to care for Micah and Jasmine.
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