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A life with Ketotic Hypoglycemia

Issues with multitasking, excessive activity and restlessness, poor planning and disorganization, lack of focus, issues with memory loss, issues with on-going depression and years of issues with the eating disorder bulimia. At some point I was a mental wreck.

The psychiatrist had no doubt; I suffered from ADHD. I was doped with such high levels of Ritalin (methylphenidate), I was admitted to the hospital. They suspected cancer, but it turned out my condition was a reaction to an overdose of the medicine my psychiatrist gave me.

I then made the decision to stop my ADHD medical treatment, and three months later I became pregnant with our son Noah.

Early beginnings: Low blood sugar

Noah was born with HI. He was 2 days old, when we were admitted with a blood sugar at 0,8 mmol. After 4 weeks with 50% glucose, he became strong enough to nurse, and the doctors told us he had outgrown his transient HI. We came home, and tried to start a normal life, with a baby who screamed whenever he wasn’t eating. He screamed so much that the hospital got us an appointment for him at the infant psychiatrist. In his first year he was seen by the neuro team, to ensure Noah was not brain damaged from his transient HI at birth. He developed perfectly according to their scale, and they calmly told us not to worry at all. Even though he did scream, whenever he didn’t eat… Little did we know; something was so very wrong.

Our first seizure

When Noah was 17 months old, and big brother to 6-week-old-Savannah, he had a seizure one morning. The paramedics measured his blood sugar to 1,2 mmol. Sadly, for Noah, and us, Noah was admitted in the weekend, where there is a lack of hospital staff. We were told to come in a few months later to do a safety fast. We took Noah and a glucose monitor home, terrified that our child might die in our care, before the fasting test.

A specialist doctor and a diagnose

A week later, Noah got admitted with a blood sugar at 2,6 mmol. The hospital decide to do an emergency fasting test. Finally, Noah gets transferred to the HI specialist Henrik Thybo Christesen at Odense University Hospital, Denmark. After a long time with genetic testing, Noah gets the diagnose: Idiopathic Ketotic Hypoglycemia. Translated into human language; Low blood sugar with ketones, with no known genetic cause. When Noah was diagnosed, I was finally able to focus on baby Savannah, who had nursed every 30 min all 17 month she had lived. One night, she was admitted with high ketones and a bloodsugar at 3,7 mmol. The pediatric endocrinologist told us to just give her some more food.

Glucose monitors and ambulances

Yeah… Right… My 17-month-old girl with thighs as big as her tummy, was starving. No, I did not buy in to that. Not by a long shot… I reached out to Henrik Thybo Christesen, Noah’s doctor. He gave Savannah a Dexcom (continuous glucose monitor), and asked me to cut down on her nursing at night time, to see how her body would react. Savannah reacted the very first night, and was admitted with an ambulance…. Savannah is now diagnosed with idiopathic ketotic hypoglycemia, just like her brother. And me. I am not an ADHD patient – even though many of my symptoms are similar. I am a ketotic hypoglycemia survivor, and at mother of two warriors, fighting a disease most doctors know nothing about.

Magic buttons and new-found enthusiasm

With their tubie (g-tube) and their magic button (Dexcom, CGM) they take on life with an enthusiasm and passion I can only admire. Our hope of a cure, a treatment and a patient society quickly crashed, when we discovered how little knowledge there was about ketotic hypoglycemia. Luckily, we heard about Congenital Hyperinsulinism International and this became our safety zone of likeminded families and specialists from all over the world. Even though we don’t produce too much insulin like the HI patient, our symptoms are very much alike. Low blood sugar, caused by too much insulin, or low blood sugar caused by an unknown metabolic disease, is still the same life-threatening hypoglycemia.

What’s next?

I will make an effort to unite the forces of the great team of patients, families and specialists behind Congenital Hyperinsulinism International, and all the families living with ketotic hypoglycemia around the world.

To all of you parents who cried like me when you realized that the doctors believed you didn’t feed your child.

To all of you parents who cried when genetics testing came back without an answer, and to all of you parents who everyday are fighting to normalize the Daily Life, of a rare disease child: You are not alone!