A blog post in which I share lots of new puppy photos and a new health challenge about Thomas
Puppy's First Week With Us
After much negotiation, campaigning, and reducing the list from 22 possible puppy names to two, we finally flipped a coin and introduce to you Nicky!
Nicky was already crate trained when we bought him and now his potty training is going fabulously. He has had accidents in the house maybe four times in more than the week we've had him. He is going longer stretches at night without waking to be taken outside and I look forward to when I'm not taking him out up to four times per night. On the bright side, the children do all his daytime care and do an excellent job of it.
Thomas's Cancer Scans Rescheduled
Thomas's one-year MIBG scans to check were cancer were scheduled for this past week, but ended up having to be rescheduled because the colds going through the house for the last month finally caught up with Thomas. He developed a 104-fever one day this week, which earned him a ticket to the Emergency Room and antibiotics shot straight into his muscles instead of waiting for IV placement . . . which burns badly for five minutes! Blood labs showed he did not have sepsis, so he and I got to head home late at night and sleep in our own beds.
His scans got moved to the upcoming week.
A poignant note . . . I was absent from the home, which almost never occurs, having taken the puppy to his first well-puppy visit with the veterinarian. Chris called me to report Thomas's fever having risen to 104, I had him hand the phone to Mary, I gave Mary (13) instructions to pack me a hospital bag, I texted Thomas's surgeon, then I was home within ten minutes, where I exchanged the puppy for Thomas and the backpack and drove off to the ER. It is wonderful that our family has a smooth operating system now, but sad that this is normal for us.
Reactive Hypoglycemia: A New Diagnosis
For a month . . . or frankly, many months . . . symptoms have been leading to a new diagnosis for Thomas, but I was waiting to update our prayer warriors until we really knew what was going on. I will try to be succinct, which is difficult.
It seems to be that many of Thomas's GI symptoms all these seven months were probably a result of Reactive Hypoglycemia having developed after his gastrectomy. Reactive Hypoglycemia (also known by its less scientifically descriptive name as Late Dumping Syndrome) is a known complication of a subset of adult patients of gastrectomies. Since there are only a few children in the country with gastrectomies, pediatric doctors are not attuned to watch out for this complication. As I watched for months and was highly suspicious that I was seeing external symptoms of dangerously variable blood glucose levels, I began pondering starting to check blood sugar with finger pricks. I so loathed putting Thomas through one more suffering that I delayed this . . . now much to my bitter regret.
Finally a few weeks ago, I began checking Thomas's blood sugar, ultimately poking him more than a dozen times daily for a week, and discovered that he spikes to about 300 within 15 minutes of eating any carbohydrates, before he then crashes low, often well below 40.
After reading many medical journal articles, I discovered that Reactive Hypoglycemia is very commonly developed in children after any surgery involving the esophagus or stomach . . . up to 80% of children after certain procedures (e.g., Nissen fundoplication). One group of scientists wrote an article advising that it become protocol that all children who have esophageal or gastric surgeries be put on a continuous glucose monitor immediately because Reactive Hypoglycemia develops in so many of them within one week.
I got Thomas in front of his endocrinologist within a week and he was sent home with a continuous glucose monitor (which he wears in his arm) that very Friday. By Monday morning, with one weekend of data to share with the endocrinologist, she prescribed him Acarbose, which is a medication taken by Type 2 diabetics.
What Is Reactive Hypoglycemia?
Reactive Hypoglycemia has various causes, one of which is surgery. Will it ever go away? The literature I am reading seems to indicate that it will not resolve on its own, but we need more doctors' to weigh in on this, as Thomas's situation is so rare as to be almost unique.
Why does Reactive Hypoglycemia start after surgery of the esophagus or stomach? One article I read suggested the hypothesis that when nutrients are absorbed lower down the gut after such surgeries, this stimulates more of the Glucagon-Like Peptide 1-secreting cells, which are found in higher numbers in the lower gut.
Eat carbs -->
Nutrients absorbed lower in the gut where more Glucagon-Like Peptide 1-secreting cells exist -->
an overexaggerating amount of GLPs are released -->
which results in an overexaggerated amount of insulin being released -->
then the insulin processes all the glucose too rapidly -->
causing a dumping episode (immediate diarrhea, vomiting, flushing and heat, pain in limbs and headache as water is extracted rapidly, hypotension) -->
resulting in hypoglycemia (crashing well below 70, even into 30s and 40s, which is a crisis)
Thomas is not diabetic (thankfully), but there are many similarities, mainly a dangerously uncontrolled level of blood glucose. The high and severely low glucose can lead to nerve damage, brain damage, kidney damage, seizures, and death if not caught in time to intervene.
How Does One Manage Reactive Hypoglycemia?
I do not wish Thomas had diabetes, but I do wish he could easily be dosed with insulin at whatever dose he needed and as many times a day as needed.
The appropriate medication seems to be Acarbose (and its class of meds), which inhibits GLPs from being overly secreted, thus breaking the first link in the chain of too much insulin being released.
1. Reduce carbs and increase protein. We were already doing this for Thomas, but now we must do this to an even stricter degree. Unfortunately, a child who needs carbohydrates to grow up and gain weight cannot go as low carb as an adult. Also, children do not want to eat what I've read described as "obscene amounts of protein" in order to get calories where they can. If Thomas had his gallbladder, he could increase his good fats, but he doesn't.
2. Space out meals. Adults with reactive hypoglycemia are advised to eat only every three to four hours, but this is a child and one with a total gastrectomy. My goal is to stretch him to eating every two hours, which he may be able to do now that he has a Hunt-Lawrence pouch which can hold more food in one sitting.
3. Take Acarbose up to six times daily with the first bite of carbohydrates. So far, this medication is helping him very well. The downside is that Thomas is accustomed to grazing on food all day, but he cannot take Acarbose all day long. One day a few weeks ago, he ate 13 small meals all day (which is extremely disruptive to running the home and homeschool, but typical in our home nowadays). We are working behaviorally on him limiting his meals to how often he can take his medication. Another work-around is eating a snack that is only protein . . . but you can imagine how well that idea goes over with a six-year-old.
Another complication is that Thomas is also tube-fed overnight to make up his remaining calories, but he can't take Acarbose all night long, so he is still cycling high and low all night. I now have to set alarms and wake four times nightly to manage tapering his tube feed so he will not have the hypotensive crises (going below 40 and staying there for an hour) that he was experiencing. We will have to brainstorm with doctors how we might fix this.
We appreciate any prayers. This is yet one more serious complication, one more thing that takes up even more parental caretaking time when I feel there is absolutely none left, one more condition that keeps Thomas and I more home-bound . . . and, most of all, one more suffering Thomas will have to learn to live with. He is a very docile and sweet boy who rolls with the punches--at this age anyway.
No comments:
Post a Comment