“We learned all that we could from the Cook Children’s HI program experts. Please support this HI program that helps our child and others manage this dangerous disease.” – Allen’s Mom
Allen was not diagnosed with hyperinsulinism until he was 4 months old. At four months, while visiting Louisiana, my son came down with a stomach virus. We went to the emergency room where they did an x-ray of his abdomen and we were released. On the drive home, we received a phone call urging us to come back to the ER due to an enlarged organ. Because we were already so far away, they referred us to a hospital in Baton Rouge. Upon arrival, they began tests, one showing his blood sugar at 17.
The next morning, we were seen by an endocrinologist who first mentioned Hyperinsulinism. Allen was admitted to the hospital on April 13, 2014. By April 17, I asked them to move us to Texas Children’s Hospital. This was our home for the next three weeks to try several types of medications. We were told about a facility in Fort Worth where one of the doctors was doing an experimental procedure that may be able to help our child.
On May 7, 2014, we were admitted to Cooks Children’s Medical Center where we met Dr. Paul Thornton. The surgery took place on May 13, 2014, with the goal of removing the part of the pancreas that produced too much insulin. After being under anesthesia for about six hours, they decided that the surgery could cause more harm than good. Due to the location of the diseased portion of the pancreas, our best option would be to manage the Hyperinsulinism. For several days after surgery, Allen had to be on IV nutrition. With his blood sugar still below 70, it was decided that he would need to be on medication to survive. For the next few weeks, we learned all that we could from the Cook Children’s HI program experts.
Allen was released on May 31, 2014. Since then, he has been on two other medications. In order to ensure that he has the medication he needs to survive, we must constantly stay on the insurance company. On several occasions, my son has been hospitalized in order to confirm that we still need the medication due to the high expense. As a mother, the last thing I want to worry about is that my son will not get what he needs to survive. Please support this HI program that helps our child and others manage this dangerous disease.
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