Sunday, May 18, 2014

Fighting back

March 2014

A few weeks ago Samantha and I went to Lucille Packard for her annual endocrine checkup. We already knew her levels were off--TSH was too high. Instead of working out medicine changes ahead of time, we thought we'd wait until we got there to talk it over with her doctor. She's a year or so from puberty so things could begin to change a lot. Knowing her history that is a worrisome prospect for us.

Our visit, however, didn't go as planned. We met a new doctor (which could have been my fault if I didn't specify when I called). He was unfamiliar to us, but marched in with her blood results. He listened to my concerns but dismissed every one. He didn't believe me when I said she wasn't normal (TSH resistant). He simply said that the labs were wrong and that he wouldn't change her dose. He knew nothing of her, her thyroid history, her medical history, none of it.

Samantha didn't say a whole lot. She was probably sensing my disbelief. I was so dumbfounded that I didn't speak up, which was the worst thing I could have done. He examined her said "Thanks for coming" and just walked out the door, addressing none of my concerns.

We left and I didn't know whether to be angry or cry.

When Samantha's levels are off it takes very little time before she becomes ill and she spirals out of control. Our regular endocrinologist would have never dismissed us and Samantha loves/trusts her.

So I called our pediatrician and got us in the next day. I explained what happened at LPCH and he was dumbfounded. I told him that I needed him to help me. We both know my child well and he knows that she can't go without a dose change if she's off. For crying out loud she went from normal to a TSH of 33 in two months when she was younger. It was serious and scary.

The pediatrician asked Samantha how she'd been feeling. She opened up to him and said that she's been sad and very angry. Even she knows what her body feels! My poor girl.

Our pediatrician agreed that it was dangerous to wait and so he changed her meds slightly. We started that day, tested this week, and guess what?! Samantha is now "normal."

Folks, fight for your child and don't let the doctor walk out the door like I did. Demand they address your concerns and make them read the damn chart. Samantha has been a patient there for 8.5 years. There is a decent-sized file on her!

Lungs and reflux

July 2013

Bug had a follow up with her pediatrician today to see how clear her lungs were. After a week on prednisone, doubled-up inhalers, and antibiotics she is still producing a lot of phlegm. Her nose lining was red too, which is indicative of either sinus problems or reflux. Since she's not had a runny or stuffy one, we can conclude reflux. It's difficult, however, because typically she'll tell me when she's refluxing. She'll said that it burns or tastes bad, but this time it's less noticeable. The doctor called it "non-acid reflux." I've yet to research it.

But since Bug has not improved with the prednisone dosage, we're scheduling an appointment with her pediatric gastroenterologist. Bug last saw him in 2009, when we thought the adult dose of the Prevacid would keep the reflux under control.

I did find in my medical log (I keep very detailed notes for Bug) that she's had a lung infection every year the week after she has swim lessons. It doesn't matter the pool, it's the same cycle every year.

She's over it as was indicated by the rolling her eyes at the doctor. And I'd like to get her off all these meds.

Unfortunately we've done this enough to know when to give her which medicine so it doesn't interact or interfere with her synthroid or reflux medicine.

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?