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Friday, August 2

We emailed Dr. M. a couple of questions about next week's ACTH Stimulation Test, and he got back to us today.

He said that the test takes about 3-4 hours, and the results will take about 2 weeks to process.

We asked about what we'd do with the results when we get them. If the measured cortisol level is low, Julia would have to be covered during times of medical stress by using hydrocortisone until we retested in about 6 months.

Saturday, August 3

We got an unexpected email from Dr M. today - he got the DHEAS test results back early. He did not explain why. The level was normal, 98.3 ug/dL (15-260 is the normal range). However, he said that the ACTH stimulation test should still be done.

Tuesday, August 6

Julia got her hair cut today! She hasn't had it cut (except for an occasional trim) for over two years. She waited so long because she wanted to do the same thing she did back then - donate her hair to Locks of Love, a charity that collects hair and makes wigs for kids who have lost their hair or cannot grow their own, due to medical conditions or treatment.

Here's Julia before, during, and after the snippage:

As you can see, the results are great! Julia looks about 5 years older with the haircut. Amazing. Julia was a little reluctant about the new look at first, but slowly came around and is looking good.

Wednesday, August 7

We took Julia in to Children's Hospital for her test today. It was a bit weird going back to the CAT/CR. We spent a lot of time there 3 years ago (about 20 Solu-Medrol infusions over 6 months). There were several familiar faces still working there, and the nurse who took us was one of Julia's favorite CAT/CR people from back then! Cool!

We left for Boston early, at around 6:15 AM. You never know about traffic into the city during rush hour, and we did hit a delay. Still, we made it to Children's in just under an hour. As soon as we parked, we put EMLA on Julia's arm, covering the 3 places where they have drawn blood in the past, then went and had breakfast in the restaurant in the hospital.

We arrived as the CAT/CR opened at 8:00AM. They kept us waiting for almost half an hour before they put the port into her arm (8:25), and then another hour before the ordered medicines came in. There was only supposed to be a 30 minute wait after the port is installed.

The next step was to draw a blood sample for testing (baseline), then they injected the first dose of ACTH, a pituitary hormone that regulated the adrenal glands' output of cortisol, the body's natural steroid. After a half an hour, just before 10:00, it ws time to repeat the process - another blood sample to measure the cortisol level, to see how Julia's adrenals responded to the ACTH, then second injection of ACTH. Another half hour wait, and a final blood sample was drawn. That was it! Here are some pictures (maybe not for the squeamish):

The port was removed and we were on our way. We were out of there well before 11:00, so we spent almost 3 hours in CAT/CR. However, the port went in at almost 8:30 and there was an unexpected half-hour delay waiting for meds, so the test should really have taken under 2 hours to complete. Not as bad as we expected.

Wednesday, August 14

Dr. A.W. has been away for the past 2 weeks on vacation, and she just bot Julia's blood work numbers back to us today. She says that Julia's numbers look great! Here are the raw numbers: CK 107, AST 25, ALT 25, LDH 232, vWF 103, Aldolase 4.8, WBC 6.41, Hematocrit 35.2, Platelets 381, and Sed Rate 11. These are all nice and normal, which is exactly our goal. She also said that she'll be interested in the results of the Endocrine test we had done last week.

Monday, August 19

Dr. M. returned from vacation and emailed us the results from Julia's ACTH Stimulation test. The news is good - Julia passed the test "with flying colors"! She made "passing" amounts (passing is 18-20 ug/dL) of cortisol with both the low-dose and high-dose stimulation. He said that her adrenals are working fine, so she does not need steroids for medically stressful situations.

Julia's cortisol (natural steroid) level was 4.7ug/dL at the start of the test, rose to 24.7 after 30 min, and 25.2 after one hour. The ACTH level was 13 pg/mL (normal range is 6-58 pg/mL). Good stuff!

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