Posted in Friends & Family

Sugarbaby: An Update

Sam and his bionic arm. (Okay, it's just an IV.)
Sam and his bionic arm. (Okay, it’s just an IV.)

Sam and I visited the hospital last week so he could have a cortisol test. The doctors are very interested in his cortisol levels because, if you recall, he has an ectopic posterior pituitary gland, and the pituitary produces both cortisol and growth hormone, two very important chemicals in the human body. He’s been diagnosed with a growth hormone deficiency, and now we inject him with HGH every evening (he’s a trooper–he really doesn’t mind his shots), but since his blood glucose hasn’t really improved the way the doctors expect it would, they decided to go looking for other hormonal culprits.

His cortisol levels are fine. His thyroid is fine. They’re even starting to reevaluate the diagnosis of growth hormone deficiency, which means we’ll probably have to go through another grueling hormone test, plus meetings with a metabolic specialist and whatever tests he needs to conduct.

On the upside, we also saw the neurologist this month and he recanted his diagnosis of epilepsy, since the glucose problems are most likely the cause of his seizures and epilepsy means seizures with no discernible cause. On that basis, we’re weaning Sam off his anti-seizure medicine, which is a relief on several levels. We’ve also started putting cornstarch in his evening milk, which helps him keep his sugar levels up through the night without needing a midnight feeding. This little trick has helped him maintain numbers good enough that the doctor has okayed us to quit testing his glucose in the middle of the night. Worrywarts that we are, we still tested him last night. We’ll see when we actually stop waking up at midnight on reflex.

So we still don’t have a solid answer. The answers we thought we might have are sort of crumbling. But Sam seems fine. He is happy and full of energy. He loves dancing and drawing, pushing buttons and flipping switches. He’s climbing more than ever and keeps getting steadier on his feet. He’s the most affectionate baby I’ve ever known; he stops for kisses and hugs on a regular basis, and not just from me–he kisses his stuffed animals, buries his face in their fur, kisses pictures he likes in books, presses his forehead into the people and animals and things he loves.

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2 thoughts on “Sugarbaby: An Update

  1. Laura– Thank you for this lovely post. I love knowing that things are better. Please forgive if I’m overstepping, but I hope you will consider using organic cornstarch for spiking his milk. Most other corn grown in this country is genetically modified and awfully hard on people, if the increase in the number of allergies to corn can be believed. Charge on! Paula Coomer

    “The creative person is both more primitive and more cultivated, more destructive, a lot madder and a lot saner, than the average person.” —Frank Barron “Enough is as good as a feast.” –old proverb Books, writing, and food as medicine: Visit http://www.paulamariecoomer.com

    Date: Sat, 1 Nov 2014 15:13:59 +0000 To: coom1286@hotmail.com

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