Tag Archives for thyroid

Options

When Norah broke out in hives a few weeks ago, what scared me most was the lack of options that we seemed to have if she couldn’t tolerate the medicine.  There are no other hyperthyroid medicines that are safe for kids, so I assumed that the next step would be either surgery to remove her thyroid or radioactive iodine to ablate it.  I’m not ready to do something so irreversible at this point, particularly because she has a lot of growing and developing left to do.  The thyroid is a small gland (well, most peoples’ thyroid is small – not Norah’s), but it’s very important.

The fear of these two medical options led me to look for complementary treatments.  Norah is going to acupuncture twice per week, and it seems to calm her.  Her blood pressure and pulse have remained in the normal range, even though she is no longer taking the heart medicine.  The acupuncture clinic recommended a woman in Bow, New Hampshire who does electrodermal screening and has had some success with people with Graves Disease.  It sounded very mysterious but that kind of stuff really interests me, so as long as it doesn’t hurt, doesn’t interfere with her medical treatment, and doesn’t break the bank, what the heck?

Last week I called for an appointment with Linda Jordan and her magical mystical machine, and for new patients she was booking into November.  When I told the receptionist that the appointment was for my daughter and that she had Graves, she said, “Oh wait a minute – I’ve heard about you.  Linda told me that if a woman calls about a little girl with Graves Disease – get her in!”  She worked us in for this afternoon.

I did some reading online, and as with any so-called “alternative” treatment, there are a lot of non-believers.  But digging into some of the holistic provider information that’s out there, I found quite a bit of positive feedback about it.  Linda’s office is attached to her home, in a beautiful room full of light, artwork, and dozens of books about health and medicine.  Her dogs Star and Woody tolerated Norah’s attention and were a great ice-breaker.  Linda resembles my mother quite a bit which Norah noticed right away, so that probably made her feel more comfortable too.

After a brief chat we had to get down to business because we knew Norah’s good (pretty good) behavior wouldn’t last forever.  Norah sat in a chair, held onto a brass bar, and Linda used a probe to touch various acupuncture points on Norah’s hand while recording values in the computer.  After she analyzed various points, she balanced some of Norah’s energies using the brass bars.  I don’t really understand how this part works but I’m sure I’ll learn more as time goes on.


Linda sent us home with various vitamins, minerals, enzymes, and probiotics, which Norah will take for 30 days.  Linda also said that Norah has way too much chlorine in her system and needs to drink and bathe in non-chlorinated water.  After 30 days we will go back to find out if anything has changed.  Linda was a critical care nurse and then a medical investigator, and she made it clear that she doesn’t diagnose, treat, or cure anything.  The supplements are basically food/nutrients in pill or liquid form, so I feel very comfortable with her recommendations.

To round out the day, I stopped to see my chiropractor on the way home because I threw my back out last week.  When I told him about Norah’s situation, he was very adamant that there are alternatives that should be considered before we do anything permanent.  I will talk with him about his ideas when we have more time, but Norah and I each had an adjustment and headed home.

Here are some links to information about electrodermal screening:

http://www.alternative-doctor.com/body_stuff/electrodermal.html
http://www.alive.com/5931a15a2.php?subject_bread_cramb=8
http://barbfeick.com/ceds/

[youtube=http://www.youtube.com/watch?v=Q5EozmUiMyg&fs=1&hl=en_US]

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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:

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Testing…1, 2, 3

Norah and I headed to Children’s today at 6:30 a.m., which turned out to be quite early for an 8 o’clock appointment since the traffic wasn’t bad at all.  We were inside the hospital by 7:15, and since Norah couldn’t eat for 2 hours before her test (she got up early and ate breakfast with Ben), we just hung around watching Max & Ruby until it was time for her to drink the iodine cocktail.

It was actually just a tiny oral syringe of iodine, not the kind your mom used to paint your cuts with.  She drank it with no problem, but I was surprised to find out that we had to wait 4 hours before she had the scan, rather than 2 hours.  The technician also told me that she would have to hold still for 15 minutes per scan, and that there were 3 scans.  I obsessed for most of the 4 hours about how I was going to keep Norah still for 45 minutes+.

We went to my office and I got a bit of work done while we waited, although Norah’s hyperactivity makes it hard to get much accomplished.  The high metabolism doesn’t help either because every car ride involves a stop to poop.  Any behavioral progress or boundries that may have existed before have been wiped clean by hyperthyroidism.  My old boss Reyn, now one of our vice presidents, came into the office and she immediately started feeling around in his pockets!

I shouldn’t have worried about how to keep Norah still during the scans because everyone at Children’s is a pro.  Diane and Joanne laid her out on the machine, took the initial scan which was just a few seconds, and then 3 scans at 60-90 seconds each.  Diane had her hands on Norah’s head just to remind her not to move, and Joanne moved the machine to take scans from the front and each side.  The were very impressed with Norah’s ability to stay still and quiet, and so was I.  A dozen stickers later (and a balloon), we left Children’s for the second time today.

Norah is headed back with Ben tomorrow morning for a 24-hour scan.  The scans measure how much iodine is in her thyroid gland, which will help the doctors decide whether Norah has Graves Disease or Thyroiditis.  If it’s Thyroiditis, her thyroid won’t absorb much iodine.  Once the diagnosis is made, they will work on the treatment plan.  We have an appointment next Monday but Dr. Fleisch just emailed me to say we should have some test results by Thursday at the latest.  I hope so.

P.S.  When I told Norah that we were going to the hospital she said, “I want to go see Dr. Fleisch.  She’s so nice.  And her husband is nice too.  Ben’s really cool.”  Ben’s either a med student or intern or some sort of doctor-ish guy.  I’m pretty sure they’re not married.  🙂

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

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Lumpy

Norah and I left for Children’s Hospital at 11:30 this morning and arrived home at 6:30 tonight.  It was a long, tiring day, but the doctors and the rest of the staff were great.  Norah’s ultrasound showed that her thyroid is indeed enlarged, but it didn’t show a separate nodule or anything unusual beyond the fact that her whole thyroid is BIG.

After the ultrasound we met with a fellow and a resident in the endocrinology department.  I wasn’t sure what a “fellow” was (Dr. Abby Fleisch is definitely NOT a fellow in the gender-related sense of the word), so she explained that she had gone to college, gone to med school, completed her 3-year residency in pediatrics, and is now doing a fellowship in endocrinology.  She works with an attending physician who we also met with.

During our time in endo, there were at least 10 people who came in to check out the lump because it’s so unusual to see on a 4-year-old or really any kid younger than an adolescent.  Norah was so cute, lifting her head to show off her lump.  We had talked a lot about what she should expect at the hospital, and that she would be seeing new doctors there, so when we were sitting at Au Bon Pain surrounded by medical staff on their lunch breaks, Norah threw her arms open and said, “Are THESE my new doctors??”

There are basically two possibilities since the ultrasound didn’t show anything definitive.  One possibility is Thyroiditis, which would go away on its own.  If that’s what she has, she’ll take medicine for her high blood pressure until the thyroid issue resolves itself, at which point the rest of the symptoms would resolve themselves too.  The other possibility is Graves Disease, which is an autoimmune disorder.  Graves Disease would be treated with medicine to reduce the amount of thyroid hormone, which would resolve the other symptoms.

The trick is figuring out which of these is the cause.  More blood work was done today to look for specific antibodies.  On Monday Norah will have to drink some iodine and 2 hours later will have a scan to see how much iodine has been absorbed by her thyroid.  The next day she’ll have another scan to check the iodine in her thyroid again.  These test results should confirm one cause or the other, which will determine the treatment.  Meanwhile, she will be on a low dose of high blood pressure meds.  Her blood pressure is not high enough to be an emergency, but it’s pretty high.

I probably won’t have more to report until the middle of next week.  Thank you to everyone who called, emailed, and texted to ask for news.  Everything’s fine.

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