Friday, June 18

Dr. Endo

It's been a while since I've looked for new articles on congenital hypothyroidism. Cadence has a routine visit with her endocinologist later today. It prompted me to do some digging. I didn't find much new information - one you know the basics, really all there is to read are new research studies. Reading it brought back a lot of memories from when Cady was a baby.

People seem to know a lot about adult onset hypothyroidism, but not much about congenital hypothyroidism. So...here are some fun facts:

In a nutshell, neonatal hypothyroidism is decreased thyroid hormone production in a newborn. In rare cases, no thyroid hormone is produced at all. That’s the case with Cadence. Her thyroid is missing.

In newborns, symptoms usually include a puffy face and a thick, protruding tongue (Cady had this, which made it hard for her to eat - we had a heck of a time finding the right kind of bottle). Other symptoms are brittle hair, a low hairline, jaundice, lack of appetite, choking episodes, lack of muscle tone (floppy infant), constipation, sleepiness, short stature (Cady was tiny - still is), hoarse cry, protruding abdomen with an umbilical hernia, cold mottled skin, large soft pot that closes slowly, posterior softspot (yep - Cady had TWO softspots), and delayed skeletal maturation for gestational age (She was little – barely on the cusp of the growth chart). Cadence has all of these symptoms.

An early diagnosis generally results in a good outcome. Newborns diagnosed and treated in the first few weeks generally develop normal intelligence. Untreated, it can lead to severe mental retardation and growth retardation. The damage to an untreated baby may cause irreversible damage. Luckily, Cady responded well to the meds...the kid is smart as a whip, and the only non-normal developmental aspect she has is speech related. She saw a speech pathologist twice a week last school year, and will continue once a week next school year at the Primary.

One of the new pieces of information I found this time is that hypothyroidism can cause heart problems. This is making me nervous, but her treatment started early enough in life that I doubt any heart damage was done.

The first two weeks of Cady's her life were pretty scary. I lived at the hospital (slept there, ate there, showered there, and recovered from child-birth there after she was born). I nursed her there too – every time she nursed her apnea monitor would go off, resulting in alarms. Coincidentally, the alarms were nearly identical to the sound my car made then the key was left in the ignition, or the lights were left on. As a result, for the first few weeks after we were home, every time the car would ding, I’d let down. (embarassing)

When Cady was at Glennon, I was so focused on her and what she needed, that it didn’t occur to me to worry. Looking back it hurts. She was so little, and had so many wires attached to her, so many needle pricks, and so many hours under photo therapy lights. She was on so much medication, and we had to force feed her because she had no appetite. My hands are shaking just thinking about it. Seeing the other families, and their kids helped a lot. Cady’s issues seemed trivial compared to what they were going through. The chemo, the boy crying because he didn’t want to go through dialysis any more. Heart breaking. Reading “My Sister’s Keeper” helped too. Reiterated to me that things could be so much worse.

Cadence sees her Endo every four months. The trips to Glennon are hard for me. Cadence is thriving, despite being small. Her growth (physical and developmental) has been consistent which - is my main concern. The staff is amazing, I really love it there and consider ourselves blessed to live close enough to take her to see a specialist instead of her regular pedi. The hard part is being in the building. Each time we’re there a helicopter arrives with a new baby/child. I can only imagine what these kids are going through, and what they’re parents are going through. It again, reminds me of how blessed I am to have a child with such an easily treatable disease. Not everyone is so lucky.

I’m not sure how I got on this tangent, but I do (mostly) look forward to the visit this morning. Cadence LOVES it there. Loves it. She always walks away with something nice (stickers, graham crackers, suckers, a book, a toy, lots of things). She even sits like a trooper when they have to take blood. That’s the other hard part for me. She’s so used to the pricks that she doesn’t cry – she just gets annoyed. I usually cry on the way home. I can’t help it.

Wish us luck.

1 comment:

  1. Wow! I've never heard of congenital hypothyroidism before. I'm one of those that knows a lot about adult onset because I had 1/2 mine removed when I was around 39 because of a benign tumor. Unfortunately all tests were unable to determine whether it was malignant so I decided to have it out.
    I've had my periods of time in the last 11 years when my levels were "off" and I'd feel miserable. I can't imagine what it must be like for your daughter or for you wondering if everything's ok.

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