UPDATE

Rebekah had her thyroid levels checked on Monday, June 6; she was 16 weeks exactly. She currently weighs 10lbs 13oz. (She weighed 8lbs 10oz at her 13 week appt). So her little body has really been doing good catching up on weight gain this past 3 weeks!

Her thyroid levels were pretty much the same as they were 3 weeks ago at 13 weeks. Her 16 week levels–

TSH 8.28 (it was 8.18 at 13wks, and 38.56 at 4wks old) (high is bad)

fT4 0.89 (it was 1.13 at 13 wks, and 1.21 at 4 weeks) (low is bad)

Her T3 level was never checked at any of these times. T4 converts to T3, so we will be asking the endo if all her levels can be checked. 

At 4 weeks, they wanted her to start synthroid and to get a radioactive thyroid scan. We chose not to at that time. After a series of very aggressive and threatening  phone calls from the nurse, we opted to move to a new pediatrician. And we were subsequently reported to DHS for child neglect. (Read more on that here and here).

Then after the results at 13 weeks, the new pediatrician (after consulting the endocrinologist) just wanted her levels checked again at 16 weeks (which we did Monday), and he set up a consultation with a pediatric endocrinologist in LR. No medication was prescribed at that time. 

Since Rebekah’s numbers at 16 weeks were pretty much the same as they were at 13 weeks, I kind of thought/hoped they would just want us to wait it out til June 30 (the endo appt).

However, the new pediatrician recommended she take synthroid until the endo appt, and then they will recheck levels again (she will be 19 weeks at that appt).

Keith and I talked it over, and we decided to start it. Not that we don’t have reservations, not that we won’t contact the doctor if she has bad side effects (loses weight, stops eating well, won’t sleep etc). I made a chart, and for the next 3 weeks, we are going to continue to track her progress in several areas (ounces consumed, pees, poops, sleep schedule, temperature, weight, and any other changes), and we will note the changes–good or bad. 

We are a team, Keith and I and our children. We disagree at times; we state our reasons; we talk it out; we make a united choice. A team. 

I won’t lie–it is my hope that Rebekah will be weaned off this synthetic hormone and that her natural thyroid will continue to improve on its own.

THE PROCESS

She took her first pill today, 25mcg daily. She weighs only 10lbs, so compared to adult dosing based on adult weights…this dosage sounded high to me for a 10lb baby. But we are going to see how it goes. 

We had to crush the tablet into a powder and mix it with water and use a syringe. It is supposed to be given on an empty stomach, and no foods with calcium or iron for 4 hours after.

So that was certainly hard to work out with a baby who eats only milk which is full of calcium.

She went to bed at 9pm last night; we went to bed around 10:30pm. She woke at 1:20am for a feeding. Then we woke her at 3am to feed her as much milk as possible, then we woke her again at 5am to give medicine only, then she woke at 7am hungry. Who needs sleep?

The pharmacist said to just try to do that…space it in between feedings…where her stomach will be empty from the previous feeding, and can stay empty as long as possible (even if she can’t make it 4 hours).

She eats every 2-3hrs during the day, so I do think this schedule will be the best–taking the med super early in the morning. A midpoint time between big feedings. Not easy though. 

HARD SCIENCE

We still have reservations about this entire diagnosis, treatment recommendations…all of it. 

Most health issues have standardized levels for things–what’s considered high blood pressure, what’s considered high cholesterol, etc. 

For congenital hypothyroidism, there is a different “normal range” for infants at every different lab, every different hospital, every different state. It’s insane. 

Most charts consider age to be a factor, but barely any charts consider weight as a factor. This is “hard science,” how? 

Why so many charts and ranges at all these different hospitals? Is there no consensus?

Also, Rebekah’s low birth weight, the fact that her cord attachment was velamentous (so she was likely IUGR)…none of these factors were taken into consideration when comparing her blood concentration and/or thyroid levels to “normal ranges” of average weight babies. 

Should IUGR, SGA, premature, and/or low birthweight babies be compared to the ranges of average sized newborns? Their blood concentrations are different. As I found in my reading, these exact questions divide the experts’ opinions on treating mild congenital hypothyroidism. (See my other blogs about Rebekah for links to these articles).

MENTAL RETARDATION

From my reading, the babies born with severe congenital hypothyroidism have TSH around 750-1000, and yes, those cases can lead to mental retardation if left untreated. And I read those cases usually lead to mental retardation even when they ARE treated, and even when they are treated early

But I never saw ANYthing suggesting a case of TSH of 8 ever leading to brain issues (or even untreated TSH of 38). Not whatsoever, and I’ve been reading like an obsessive nut. Did anyone find information on mild, untreated CH cases leading to brain damage?

So I reeeeally take issue with the nurse at the first pediatrician basically screaming BRAIN DAMAGE at us on the phone 3 different times, over and over. I really take issue with her/them reporting us to DHS as neglectful parents. 

Maybe this is protocol behavior? Is it? If so, then I take issue with this fear-mongering, bullying protocol. Where do I campaign for it to be changed? 

The doctors use a vague statement “congenital hypothyroidism has been linked to mental retardation.” And that’s true…the severe cases (treated or not). What about the mild cases? 

People can be motivated with fear, or with facts and information, or with concern and compassion. And not all methods are equally effective on all people. 

We don’t respond well to bullying, never have…never will. We were never given specific facts, only vague, unsubstantiated claims/threats of brain damage. We aren’t motivated by bullying, even when bolstered by ignorance. We received no kind guidance, concern, compassion, patience. 

I feel that too many factors are ignored, and that a blanket treatment approach is preferred (forced if possible) instead of monitoring levels a few times. 

REACHING OUR DECISION

I do know so many adult friends who have told me they take synthroid, and have no side effects or issues. Adults who have finished their brain development, don’t weigh 10-11lbs, aren’t 4 months old. Their skeletons are finished growing, they stay pretty much the same weight, they have gone through life’s major hormonal changes, such as puberty (and some even menopause).

It’s just…I know a body can become dependent on a synthetic hormone and then stop making its own natural hormone. 

We felt that her body needed to be given the chance to normalize on its own…and we did give her time, and her TSH did lower  considerably, and is in normal range on many charts. And her fT4 was never out of normal range, and still isn’t on many charts.

But then on the flip side of that, we decided that “abnormal” results on 4 tests in 16 weeks was enough to start the medication and then retest at 19 weeks. 

We observe her daily in “life’s laboratory” at our home. No we don’t chart and record every change, but we notice changes  (and we record many of them).

She isn’t a ball of numbers; she isn’t a stack of lab papers; she isn’t a diagnosis; she isn’t a statistic; she isn’t a blob of data. 

She’s a baby. Our baby. A precious life we value more than our own. 

She’s been gaining so well (finally in the 8th percentile); she’s so happy; she’s hitting milestones. She does have days when her eyes look tired, but less and less lately. 

Is there enough going “wrong” that she needs a daily medication (possibly for 3 years, possibly for life)? We didn’t really think so, but we will try it, record changes, and will not ignore anything. 

Siiiigh, one day at a time. 🙂

I’ll update after the endocrinologist appointment. 

Our little beauty, little miss tiny dancer
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3 thoughts on “Tiny Dancer

  1. No matter what happens with her precious baby brain, she’s still perfect. I’m glad you and Keith communicate and discuss the way that you do.

    Liked by 1 person

  2. I admire your diligence..Reminds me of my momma.. A servants heart.. A fighting spirit. Love you Em… And I can’t WAIT to meet your tiny dancer❤️
    I bet she’s as perfect as all your daughters… ❤️Jess

    Liked by 1 person

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