Seth's health

My sweet Seth had some routine blood work done in January.  His pediatrician called a few days later to tell me that Seth has celiac disease and probably Grave's disease.  He sent the lab orders to have more blood work done to get more details for the endocrinologist.  Today we met with the endocrinologist to get her diagnosis and plan of care.  Science has never been my area of expertise, but here's my best attempt at explaining these two problems.

Having been diagnosed with celiac disease over 25 years ago, I was not overly surprised or concerned with that part of the diagnosis.  Celiac disease is an autoimmune condition involving digestion.  The small intestine is incapable of digesting gluten from wheat, rye, and barley.  It tries to digest those foods anyway and damages itself with the effort.  That damage will heal over the course of up to a year IF it does not keep damaging itself trying to digest more gluten.  Left untreated, though, the damage can become permanent, causing the intestine to be incapable of digesting anything at all.  At that point, the body would starve, regardless of how much food it receives.  The medical community has yet to discover any medication that cures this disease.  That sounds like bad news, but it's actually good news in my opinion.  The only treatment for celiac disease is a strict gluten-free diet.  If the intestine doesn't have to try to digest what it can't handle, it will heal and stay healed.  For Seth and me, "gluten-free" is not a fad.  It's a life-saving choice.  We don't have extra doctor's appointments, medications, or blood work.  Just a gluten-free diet.

Grave's disease is trickier to understand.  The thyroid is a gland in the front of the neck.  It produces hormones that help all of the organs work well and control how the body uses food for energy.  Many people with Down syndrome have a thyroid that doesn't produce enough of these hormones and have to take a man-made version of those hormones (synthroid).  Without a normal level of those hormones, people might be more tired and cold than normal, have a slow heart rate and low metabolism, and not grow at a normal rate.  Seth's thyroid is producing too many of those hormones, though, and this causes the body (if you think of the body as a car) to idle too fast.  Extended "fast idling" could eventually lead to heart failure.  Since Seth is showing no symptoms at all of hyperthyroidism (such as being nervous, having trouble sleeping, or losing weight), the doctor is almost certain that this condition is a recent development and that his heart has not been damaged.  The first treatment for Grave's disease (named after a man whose last name was Graves, not relating to a death rate at all) is to give Seth a drug that lowers the amount of hormone his thyroid makes.  Two possible side effects are a rash that doesn't go away after taking Benedryl and painfully swollen joints.  The longest he'll have to take this medicine is 18 months.  He'll have to have his blood checked every 4-6 weeks to see if the medication is working (the doctor prescribed numbing lotion so that this is less horrible from now on), to see if we can lower the dosage, and to check for other adverse reactions in the body.  If the medicine causes any negative reactions or if the disease hasn't gone into remission by that 18-month mark, he'll have his thyroid removed and take synthroid for the rest of his life.  The doctor said that the medicine works for about 50% of patients.

The bottom line is that Seth will be fine.  We're praying, of course, that Seth has no negative side effects from the medicine and that it works perfectly, putting the disease in remission.  If that's not God's will, we'll be praying for the doctor to safely remove Seth's thyroid without hurting any of the valuable body parts that are close to the thyroid and for the endocrinologist to know the exactly right amount of synthroid to prescribe for Seth.