Monthly Archives for August 2010

Lumpdate

We went back to Children’s Hospital today to check in with Norah’s endocrinologist, record Norah’s stats, and introduce Ben to the doctor.  Because Dr. Fleisch is a “fellow” (a doctor who is learning more about endocrinology), we also meet with whichever attending physician is there when we are.

Today the attending was Dr. Spack.  It seems like we learn a little more about Norah’s condition at each visit, so maybe someday we’ll know it all.  Maybe not.  Aliya was with us, so Dr. Spack took one of Norah’s arms and one of Aliya’s and told all of us to feel the difference.  Norah’s skin literally feels like a brand new baby’s skin.  It’s another symptom of hyperthyroidism – her skin is constantly regenerating.  Everyone’s skin cells die off and are replaced with new cells, but like everything else in her body, Norah’s skin is exfoliating at high speed.

Dr. Spack also said that Norah’s thyroid is swollen to at least 4 times it’s normal size or more.  It’s hard to know because typically your thyroid is not visible.  He said that because her thyroid levels are so high and she has a “storehouse” of hormones in her lump, it could be a while before we see her symptoms resolve completely.  I asked him to give me a guesstimate and he said 4-6 months.  He said that when her levels are back to normal we’re not going to believe the difference in her behavior.  He said that the most obvious physical differenc we’d see would be the change in her eyes.

I have to say, it’s validating to hear that Norah is more active than a typical 4-year-old and comforting to know that she might eventually calm down.  I can only imagine what her academic capability will be once her body slows down.  When I heard the 4-6 month timeframe I asked if he’d give ME a prescription, but I guess I can tough it out.  The current plan is to check Norah’s antibodies (Norah thought the doctor said, “Norah has an ant-body.”) in 2 years and see if she can be weaned off the medication.  If she can’t, they may recommend thyroid ablation when she is around 10.  We’ll play it by ear.

I went back through a bunch of old photos to try to pinpoint when the lump arrived, and it looks like it started swelling at the end of December.  Looking at it now, it’s hard to believe I didn’t notice it because it’s so obvious.  There are other photos that don’t show anything – I don’t know if the swelling goes up and down, or if it just wasn’t noticeable in certain positions.  Here’s the progression:

Click here to read the next post about Norah’s thyroid.

Click here to start at the beginning and read the first post about Norah’s thyroid.

West Hartford Children’s Museum

When we went to Florida last summer we bought a membership to a science museum down there because it only cost a little bit more and the museum had reciprocal agreements with other museums.  We have gotten free admission to so many museums with that membership!  Most recently, we visited the Children’s Museum in West Hartford, CT.  The kids really liked it, and there was a planetarium show which they hadn’t been to before.  For a minute, Norah thought we were really going up into space!

It was definitely better than sitting around listening to them bicker all afternoon.

Here’s the slideshow:

[slideshow]

And the same photos in gallery view:

OSV with the Steeds

I’ve got a lot of catching up to do so I’m trying out a new method for posting photos.  We recently spent a day at Old Sturbridge Village with our friends from Texas – the Steeds.  We only see them once a year when they come for their annual vacation in Maine (here’s a post about our 2007 visit), and we missed last year but the kids got reacquainted right away.  It was a great day and the kids are bummed that they won’t be able to see each other again until next year.

Here’s a slideshow of our day at OSV:

[slideshow]

And in case you want to see the description (hover over thumbnail) or a larger image (click on thumbnail), here’s a gallery of the slideshow photos.

Graves Disease

The verdict is in.  Based on the amount of iodine present in Norah’s thyroid during her scans and her blood test results, Norah has been diagnosed with Graves Disease.  Graves is an autoimmune disorder which causes antibodies to stimulate the thyroid gland to produce more thyroid hormone even though the pituitary gland isn’t calling for it.  The uptake scans showed no nodules, which is good because that would have required in-depth investigation into what was causing them.

Graves Disease is not that common in 4-year-olds and Children’s Hospital most often sees it in teenagers (it’s most common in 30-40YO women), but that may be because it goes undiagnosed for years.  The symptoms are not such that you would immediately think something was physically wrong…hyperactivity, excessive emotion, and overeating could all be personality traits or a phase.  Norah’s blood pressure and heart rate are high, but if she hadn’t developed the goiter (swollen thyroid), the heart issues may not have been traced back to her thyroid.

She’ll begin taking medication (Methimazole) tonight, and will have to take it morning and night.  Her thyroid levels and blood counts will be checked every few weeks to see if the dosage is correct and to watch for a rare side-effect of the medication which is low blood counts which can affect clotting and infection.  Hyperthyroidism can be difficult to regulate, so at some point in the future the doctors may recommend ablating or removing her thyroid and putting her on a daily thyroid supplement.  Unless there are problems with the medication I don’t expect this treatment to be suggested until she’s done growing.

There is a chance that the condition will go into remission within the next year or two, but given her age and the severity her doctor said that the chances are less than 30%.  All of her symptoms should be resolved as soon as we get the meds adjusted correctly, so that’s something to look forward to.

Click  here to read the next post about Norah’s thyroid.

Click here to start at the beginning and read the first post about Norah’s thyroid.