GERD and Surgery

June 2013

Bug has GERD, which seems to be somehow related to the thyroid, or lack thereof. She seems to also choke more on things like water. So when she swims she tends to choke pool water. For most kids this would be normal and insignificant, but the last three years we've noted that Bug begins with pulmonary symptoms within a few days.

She aspirates and within days she's got a phlegmy cough. We attempted to double up the Prevacid dose from 30 mg to 60 mg a day and to feed her lunch at least an hour before swimming. That didn't work so now we're treating with 60 mg prednisone, Xoponex inhaler, and antibiotics.

Last August we had the same scenario but I didn't get on top of it quickly enough. Bug went from moderate coughing to downright scary, "do you know the location of the nearest hospital coughing." And I want to do anything I can to prevent this, but the pediatrician and I have seemed to max out our remedies.

Today he suggested we go back to the pediatric gastroenterologist and discuss Nissen fundoplication or esophageal sphincter surgery. The pediatrician has had other similar patients who often wind up with pulmonary problems with successful surgeries.


It's difficult to think about agreeing to surgery for an 8 year old, but I can't imagine what longterm steroidal use will do to her development. It's certainly a lot to think about.

Development Worries

June 2013

Like every parent with a child with CH, I used to worry about development milestones. We all know how important they are when they are babies. I used to worry about Bug's teeth--they were so late coming in. And she didn't walk until 15 months. But that girl had a love for books long before then.

Bug used to spend hours sitting with those bathtub (plastic) books in her hands looking at the pictures. She loved when we'd read to her and even learned to pull up on the bookcase. She was trying to reach the books we didn't allow her to play with.

Now at 8 she reads above grade-level and we have a hard time finding books that are age appropriate and challenging. Don't get me wrong, we still watch her development closely. But I feel like we have to worry less about it the older she gets.

What I'm saying is that it does get better.

Stable . . . for now

June 2013

My daughter is now 8 and has been stable now for almost a year. Whew! And for the first time we've gone to 6 months blood draws.

She's been even healthier this year than she has her entire life. We had one bad bout of aspirated pneumonia when school started last August but have been healthy since.

I can't state the reason for sure, but we did manage to figure out a great system for the Synthroid. We bought a day-of-the-week pill case for Bug. Since she alters between 75 mcg and 88 mcg we figured that days that start with T would be our 75 days and the 88 days are all non-T days.

Bug wakes up, marches off to the kitchen and takes her levothyroxine with a glass of water. She doesn't eat anything for at least half an hour, but gets dressed, makes her bed, and does other pre-school related stuff.  We make her wait 30 minutes so if she gets up late for school it can be an issue. Overall she's pretty good about it.

Bug did great when the LPCH pedi. endocrinologist quizzed her about her pills: what color was each dose? I never thought to ask her, but it's definitely important. She can tell me if I messed up a dose, which can happen after all.


On another note, I was recently told that I have an enlarged thyroid. I had blood testing earlier this week but no results yet. Most women in my family are diagnosed around menopause.

Dry, dry, dry

October 2012

One thing that is inescapable with CH is the dry skin and hair. Even when Bug is on the proper dose of levothyroxine her skin and hair is so dry. She drinks a lot of water and take omega-3s every day. We treat her skin with Cetaphil because it's so dry and she's so sensitive. And for her hear we use Moroccan Oil treatments, but not matter how much cream/oil it is still so dry and brittle.

We've been dealing with this now for 7 years so I doubt it's going to change any time soon. I just wish everything wasn't such a challenge.

Stabilizing the Curve

September 2012

We had a very productive visit to Lucile Packard a few weeks ago. We had a very nice Fellow sit down and talk with us for about 45 minutes--addressing all of our concerns about Bug. Then we saw the Ped. Endo. Even though we didn't get to see the head honcho, we were able to see a Ped. Endo. that took care of Bug at clinic a few years ago.

The doctors assured us that Bug is growing normally and mapped the growth curve from 2 years to 7 years. Except for one blip when she was 4, she's grown at a remarkably stable rate. The Fellow explained that kids who have a thyroid often don't grow at stable rate, so we should take some comfort in the curve.

We talked about puberty and what to expect: will it be challenging, will it be late, normal, etc. They assured us that as long as she is consistent with her medication then she should develop on a similar path to me. Whew!

I have to say it's funny talking about it in front of Bug when she really has no idea what we're talking about. And she's not super inquisitive, so she doesn't ask. Maybe she internalizes it more than I know . . . we'll see. I'm really not ready to address puberty yet--I want her to stay my little girl.


The Ped. Endo expressed the same theory our pediatrician has about why Bug's blood tests and medication fluctuate so much. They both believe that Bug has some issue with absorption. So it isn't really the thyroid or pituitary, but the gut.

Their thinking goes along with the pattern of questions I get after every blood test: "Is she taking this with iron?", "Is she drinking soy when taking her medication?".

Since the middle of August we've moved the medication taking to the morning. Bug gets up from bed, takes the medication, and then goes about her routine. She cannot eat until half an hour has passed. I'm hoping this stabilizes the blood results and we can get to the bottom of the absorption issue.

Both doctors have encouraged us to stretch out the blood tests to 4-6 months. I told them both that I wasn't comfortable going that long until we know that this morning routine works. Twice Bug has fallen off the range by a whole lot and it took us 6 months or more to get back in normal range. It's too risky yet.

The Big Day

August 2012

Tuesday we have our first appointment at Lucile Packard Children's Hospital. Mind you we've been part of their clinics since Bug was born in 2005, but for some reason this is the "big deal."

I wanted to go double check the name of the doctor we are asking to see (recommend by the pediatrician) and I found a "Kids" page on their website. Then came the tears . . . my tears.

Bug doesn't know this is any different than any other appointment we've ever had, but for me it's pivotal. She's not normal even among the congenital hypothyroid set--and the doctors' are continually baffled by her test results. It doesn't make it any easier that despite my constant monitoring of the CH parents' page on the Magic Foundation FB page, I still feel alone.

Sometimes it makes me sad to think she's so different even among her CH peers. The other kids don't fluctuate so drastically with the medication needs.

And then I read on about how around 11 many kids don't want to take their pill anymore because they don't want to be different. And I cry.

You'd think after 7 years I'd be used to this. But that is not the case and I'm sure it never will be. I worry about what happens with puberty around the corner and when she becomes a pre-teen and thinks that taking a pill is abnormal.

Today Bug had a blood draw before our Tuesday appointment and the phlebotomist had a hard time finding the vein in her left arm because of the scarring due to the past draws. She's 7! What does that mean for the future?