Every Centimeter Counts

Alora had her quarterly Endocrinology appointment today.  Not much has changed.  She's still measuring super small and her bone age is still about a year behind.  Her current measurements are: 

• Weight: 46.4 lbs  (she has gained 1 oz. since last measurement, now 4th percentile)
• Height:  46" (she has gained 2 cm since last measurement, now 1% percentile)

So obviously not a lot of growth, but at least she's now somewhat on the charts.  The doctor mentioned starting the paperwork with the insurance company for growth hormone.  Jeremy doesn't want her to be on any, but I personally think that any little chance at an extra inch or two would be beneficial later on down the road. 

Endo Update: Alora's Stim Test

The four-hour long growth hormone test is officially done and the results are in.  Last Friday Alora had to be at the Phoenix Children's Avondale location bright and early at 7:15 am.  She was hooked up to an IV line and had her first sample of blood drawn (several vials of it).  Her vitals were taken and by 8 am the test started.
 

The first two hours or so she had the medicine arginine pumped into her IV.  This medicine causes the body to release growth hormone.  After almost 100 mg was administered and because this was a time sensitive test, the nurse had to come in every 30 minutes to check her blood pressure and draw several more vials of blood.

At about the halfway point, she was then given an oral medicine, clonidine, that would cause her blood pressure to lower and make her brain think she needed to make more growth hormone.  This was probably the worst part of the test because she could actually taste this bitter liquid.  She was crying and fighting us so bad, we had to take her into another room where the nurse and another nurse had to hold her down and squeeze her mouth open to administer it.  I felt so bad.  The medicine made her groggy so at least she kind of got to sleep a little for the remainder of the test.  Even though this test is supposed to be virtually pain-free, Alora acted like she could feel every single little drop of blood leaving her body and that the blood pressure cuff was chopping off her arm.  I felt bad for her and the other people around us. 

Results:  Alora's endocrinologist called about 2 days ago.  She said the tests showed that she is making growth hormone, which is good.  I guess the normal levels are supposed to be around 23 and she is at a 10.  The doctor said what to do next is kind of up to us.  As she put it, we are kind of on the fencepost.  We can try the steroid injections, but Alora would have to take these daily injections for about 4 years, until the age of 12.  We could forgo the treatment and just let nature take its course. I asked the doctor what she would do if this were her child, and she wasn't really sure either.  She said she would consult some of her colleagues and see what they would recommend.  So now we have to wait to see what the general consensus is from everyone.  Alora has said she doesn't want to be so little when she's an adult.  Noah is already taller than what her expected height is to be; he's 4'11".  When I told her that, she had a meltdown.  I guess we'll just have to wait and do some more research in the meantime.  What to do, what to do...

She Made 1%

This past week Alora had another endocrinology appointment.  I was hopeful that she had grown enough these past few months, but apparently she has only grown about an inch these past 15 months. (In comparison, her 4-year old brother, Max, has grown 4 inches these past 9 months!)  Another bone x-ray revealed she was still quite behind, which means she will now have to have a 4-5 hour long "stim" test.  The growth hormone (GH) stimulation test measures the level of growth hormone (GH) in the blood after you receive medication that triggers the release of GH, such as arginine or GH-releasing hormone.  The test measures the ability of the gland to release GH.

 

 

Basically, she will have an IV inserted and have her blood drawn.  She will then be given some stimulant through the IV that will encourage her GH to do it's job.  Every hour or so her blood will be drawn to see if the GH is working properly.  The entire process takes about 4-5 hours.  She is NOT going to be a happy camper before or after.  Thankfully, it's just the one initial poke and not every hour. 

 

It takes about 2 weeks to review the results.  Depending on what they show, she might have to have a MRI of her brain to check her pituitary gland.  Once all of that is analyzed, we will know if she has to have daily hormone injections until she is about 12.  Her doctor predicts her current full height to be 4'9", way below where it was predicted at age 2.  Because of this, our insurance should cover most of the cost of injections.  If not, we are looking at spending $800-$1000/month for the shots. 

 

We have just barely started researching short stature and the whole hormone therapy deal.  We would rather not have to subject her to daily shots, or all of these tests, but if we can give her a couple of additional inches, we know it would be easier around her classmates and friends.  We'll just have to wait and see what this upcoming test reveals about her.

Endo Update

This morning had her 3rd endocrinology check-up.  Her current doctor, Dr. Constantine Djedos, recently transferred to Los Angeles, so now she will see his replacement, Dr. Dorothee Newbern.  She too is younger, but seems nice and pretty thorough.

Because it has only been 3 months since her last appointment, there wasn't much change in her growth.  She weighed in at 40.2 lbs (5th percentile) and was 109.6 cm (4th percentile).  She has grown about 1.5 cm since August.  Nothing outstanding, but it is all still on her growth curve.  Dr. Newbern wants to check her diet, making sure she's eating enough (which I know she doesn't because she is super picky and has a tiny appetite).  We have to complete a 3-day food diary and then fax it back in to the nutritionist so they can analyze her caloric intake.  Depending on that too, Dr. Newbern might conduct a celiac test just to rule out celiac disease.  Lastly, at her next appointment in 6 months, Dr. Newbern wants to repeat her bone scan test to see is she is still a year or so behind her actual age. 

Overall, the appointment went well and everything still just points to Alora being a bit smaller. 

Brave

Today was Alora's first visit with the Endocrinologist.  She met with Dr. Constantine S. Djedjos at Phoenix Children's Hospital.  Surprisingly, she wasn't really nervous, even with Max teasing her that she was going to get a flu shot. 

Based on the charts and records that he had received on Alora, he too classified her as "short stature."  He ordered an x-ray of her left hand/wrist and then several blood tests.  Some of the things he wanted to check was her thyroid levels, pituitary gland, liver and kidney enzymes, among other things.  He also wanted to make sure she wasn't missing a certain chromosome (aka Turner's Syndrome in girls).

After meeting with the doctor, we got her x-ray taken and then headed back up to the lab.  I purposely DID NOT tell her about this part because I knew she would freak out.  When it came our turn to go back in the lab, she didn't even ask any questions about what we were doing.  Thank goodness!  The technician made her sit in my lap and then the freak out began.  The tech started laying out vials and needles with tubes and Alora about lost it.  The tech was super good and got the line in and then Alora stopped freaking out.  I was shocked!  She just sat there, watching him fill up 5 1/2 vials with her blood.  She didn't scream, kick, or hit.  She did AWESOME!  This was not typical at all of her.  She was so brave! 

Waiting to be called back to the lab.

The doctor will get the results back in about 2 weeks and then we will go from there.  If he notices some issues, then the next step is a more extensive blood draw that takes about 5 hours or so in the hospital.  I hope she doesn't have to do that... maybe she's just a "late bloomer."

After all the blood draws.  HARDLY ANY TEARS!

UPDATE:  Her bone age came back as 5 year old.  She's 6 1/2 and I guess that's nothing to be concerned about because it is sort of subjective.  All of her blood work was pretty normal.  We will go back in about 2-3 months and the doctor will remeasure her to see how she's ranking and then we'll go from there.