In an interview with NY Mag brought an exciting testimony of the father of Theo, telling about the struggle to find that the child has hyperinsulinism (which is a state of high amount of the hormone insulin in the blood, caused by an excessive production of insulin in the pancreas), a rare disease that is diagnosed by doctors to hurt the child’s life.
In the story, the father of Theo account that the song “Baby” by Justin, helping small to be distracted during treatment and gave him a little joy during difficult times. The father adds that Theo just ate when I heard the song, and just let the doctors do exams singing the same.
Our son, Theo, had a mysterious illness, and continued to worsen. Three things changed the game: a team of medical tests comparing a lot of blood tests, and a song.
Last September, shortly after his second birthday, my son was taken to the pediatric ICU at Mount Sinai, and my wife, Meredith, and I feel a sense calm falling on us. I know it’s weird for a parent to say that having a child in the intensive care unit is a relief. But almost a year ago, our son, Theo, had been showing a series of increasingly debilitating symptoms, apparently distinct, we suspected they were connected to something bigger, but none of his doctors could diagnose. They were not able to diagnose the individual problems. We were terrified and we were running out of time – we had lost.
But I promise this is a story with a happy ending about a harrowing bout of stomach illness, two teams of doctors at Mount Sinai, and, interestingly, a hit song by Justin Bieber saved my son’s life. Yes I will explain.
Soon after the day after Thanksgiving 2012, our son, then 14 months old, landed in the ER after having a seizure. A 48-hour EEG and an MRI were inconclusive. His neurologist, epilepsy specialist, gave him a drug called Keppra, which left him weak and nauseous. He slept one night for 12 hours and slept for four hours a day and sometimes even more could sleep if no one woke up. Meredith and I decided to go against the orders of our physician and under the supervision of a pediatrician father of my wife, stopped giving the drugs to Theo. But he was still weak, and the seizures were returning.
Our neurologist warned us that it was dangerous: it could erase the memory and cause cognitive delays. What was worse, we had to ask ourselves a zombie child or the risk of brain damage? Both were devastating, we quickly discovered. Because after all, initially Theo was hitting their targets, walk, run, climb, jump, and talk a lot – but he began to stagnate while their friends were saying new words. And then he was forgetting who he knew. We were afraid that our son, as we knew, was disappearing before our eyes. What choice had, but to meet grudgingly neurologist’s advice was to put Theo back on Keppra at least his lethargy would be temporary, right? We had one condition, however: gradually reduce the dose.
It did not help. He was falling on the playground. During the games. In his high chair. He was stoned all the time.
Though his attacks had begun at 14 months, things were not too bad until four months later. Theo was like a dead when he woke up he eats a bottle of whole milk with a spoon of rice cereal mixed battery. Some mornings he used to vomit soon after. He was not crying, he was not feverish, and he continued his day as if it never happened. His room smelled of vomit for months.
Despite their need for fuel to be becoming ever, my wife and I could never get him to eat enough, sometimes he threw away, refusing every bite. We felt incompetent. How is it that we could not feed our son? Why he was rejecting food? Vomiting? We were especially frustrated because when our nanny, Erin, arrived at 9 am, she could get him to eat scrambled eggs with cheese, yogurt, cereal, a proper meal for a child twice his age and size eggs. Why? And why suddenly he was singing “Bee-bee, bay-bee” every five minutes?
Because, we eventually discovered that she bribed playing a video of our iPad: “Baby” by Justin Bieber, is the music that became the raft of life Theo, as well as our measuring stick for how long would be needed to feed it. I had sworn that Bieber would never be allowed in our house, but desperate times call for desperate measures, and the music was playing so often that it has become like white noise: Theo demanded the video several times until his meal – or any task we needed him to do – was taken. It was an easy request to fulfill.
It became obvious to Erin, Meredith, and to me that there was a correlation between what he was eating and our energy levels. His little body craved carbs and especially sugar – protein foods seemed to have almost no effect on him. Meredith and I asked her pediatrician: he could have hypoglycemia? The doctor denied. Something has to be causing hypoglycemia, he said, while Theo snored in cart. Blood sugar would certainly explain the power outages, vomiting and convulsions. But the doctor did not ask glucose tests. Therefore, we dismiss.
We arrived at Mount Sinai, last September, we panic and despair, after a brief stay in our local ER, when a simple outbreak of stomach illness appeared. He could not keep anything down. His blood sugar had dropped to a dangerously low level of 23 (normal range for a boy is between 50 and 140), followed by a seizure of five minutes spent with a dose of Lorazepam given to us by his neurologist in case of such an emergency. Sinai doctors believed that glucose levels Theo revolved around 40-60. There was comfort in finally having a half explanation for every strange thing that had happened to him. At the hospital, two teams of metabolic doctors – pediatricians and endocrinologists – were trying to solve the mystery of the case of Theo. And so they did: running tests, conducting daily meetings together, often consulting with teams in other hospitals. That’s when, together, we were finally getting somewhere who was determined to give us a diagnosis and a treatment we all expected.
Now we were afraid of the diagnosis and the treatment could be. As Theo sat patiently on a hospital cot that resembled a cage for baby, stuck to whey with medication, his movements were limited. Day and night, SWAT teams – (Special Weapons And Tactics – Special Weapons And Tactics) – nurses and doctors, stinging (with needles) his finger to test his blood sugar, were the insertion of IV injections in their delicate veins outside the drip to induce hypoglycemia and then drawing vampiric blood volumes.
One afternoon, the nurses were preparing Theo to insert a new IV injection, he tried to fight them – he had enough. Meredith and I were trying to calm him while holding our iPad on the head, touching the video of “Baby” to distract him, and he yelled “Mama”. But he could not catch his breath. Suddenly, the doctor began to sing the song of Bieber, and soon the nurses joined him. Theo stopped crying, her long lashes flickered through tears while watching the group of women sing in an attempt to calm him. “They know this song?” He was thinking clearly, and I was too. I had forgotten that “Baby” existed outside our crisis.
At the end of each day, the heads of both medical staff spoke to us and told us what they determined it was not the disease. It was easier, it seemed to run things. For six days, they revealed that he had was not a metabolic disease – good news, because it meant that his illness would not require a drastic change in life. Two days later, the head of the pediatric team – endocrinologist, Michelle Klein, said he believed he could have something called hyperinsulinism, a very rare disease, which is essentially the opposite of diabetes: The pancreas produces too much insulin, triggering more drops blood sugar. It can be treated with a drug called diazoxide. But if he did not respond well to it, they would consider removing a large chunk of his pancreas – a surgery that could give him diabetes.
We were closing in a response that was not terrible: Theo would not die. He could possibly have a normal life with a drug that has no dangerous or even unpleasant side effects. That was good, unless, of course, if the drug did not work. We continue with a cautious optimism. Within a day taking diazoxide, the levels of blood sugar stabilized Theo. The hospital continued for two more days to make sure the sustained effects. Soon after we had our son back. He is garrulous. He has boundless energy. There are seizures. No more Keppra. Our apartment no longer smells like vomit. And even if he always has hyperinsulinism, he may even be able to stay drug-free for a day and keep his blood sugar with a careful diet.
With relief came another change. For more than six months since Theo asked “Baby”, and he is in love with a different song, whose video made me cry the first time I saw it, maybe they were tears of joy. ‘Cause every time Theo watches the video, he goes for his springboard So it seems toady’s simply the truth.? Pharrell’s music, “Happy” is our new anthem.