Educate me: pediatric endocrinology

[SKL]

My daughter has an appointment tomorrow morning.  This is a completely new world for me.

 

I need to understand what is to be accomplished and what I need to expect / ask for.

 

I took her to the doctor about a month ago to talk about possible physical reasons for certain behavioral and physical things I was seeing.  My research led me to suspect a deficiency in growth hormone or happy hormones.  The symptoms are all over the place but include:

• Extreme mood swings, especially when she's hungry.
  • When she gets this way, she gets irrational, rude, and has self-destructive thoughts and behaviors.
• Craving & hoarding sugar, picky eater, pretty bad diet.
• Small for her age, more than average small bone breaks, skin oddities.
• Shows signs of puberty but no growth spurt.
• Learning difficulties, especially involving memory.
• Doesn't experience pain like normal people.
• Some other things that don't come immediately to mind.

I've been given some forms to fill out.  Mostly they ask about her "family history" and information about her birth.  Most of which I do not know, since she was adopted at 1yo and I do not have that kind of contact with the birth mom.

 

I asked them whether she needs to fast or anything before the appointment, but they said no.

 

So I am wondering how this works - what should I be prepared for, what information do they need, what questions should I ask, what should I expect this appointment to accomplish?  What tests should I expect them to order?

 

Thanks in advance.  :)

[MeaganS]

I would expect some blood tests and possibly a bone growth test (simple x-ray). At least that's what our pediatric endocrinologist did after our first appointment. It sounds like you are as prepared as you can be. Just tell them what you've told us. Good luck figuring it out. Our pediatric endocrinologist is one of my favorite doctors we've ever worked with.

[J-rap]

I would guess a blood test and a bone x-ray (I think it's often the wrist bone that they check?).

[Crimson Wife]

My SN child recently had a bone age scan (took 30 seconds) and based on the results, we are being referred to endocrinology. I'm surprised that endocrinology made the appointment without having your primary care doctor order a bone scan first.

[waa510]

My oldest had a bone age scan done to determine potential growth issues.  The endocrinologist mentioned that kids who have growth hormone deficiencies will often look like "little cherubs." Basically, their arms are shorter, their faces and bodies are a bit pudgy, and they'll be shorter. She said this was due to their bodies gaining weight normally but not growing taller. My daughter doesn't fit that description in any way (bean pole comes to mind for her) so while the endo ordered bloodwork for growth hormone issues if we wanted to do them, we chose not to go there until we exhausted other things. 

 

That said, she also doesn't have the same symptoms that your daughter has so the endo you're seeing might look elsewhere for explanations. We're trying to figure out why Dd isn't growing much in height but also not gaining weight. 

[Monica_in_Switzerland]

Some things to ask about:

 

- bone age scan

- growth hormone stimulation test

- genetic testing (some of the symptoms you are describing sound more like genetic syndromes than a GH "only" problem)

- hypoglycemia

 

If you know she was exposed to any toxins in utero, put that on the forms.  

 

We've had really positive experiences with our ped endo, I hope yours is a good one as well.

[Crimson Wife]

  genetic testing (some of the symptoms you are describing sound more like genetic syndromes than a GH "only" problem)

 

Agreed. The bone age scan was done on my child after we found out about her genetic syndrome. The geneticist is the one recommending she be seen by endocrinology based on the results of the scan (shows a 15 month delay in her "bone age" and osteopenia). Her bone age is technically at the low end of the normal range but she has been taking Clonidine for her ADHD for almost 3 years and that medication stimulates Growth Hormone Releasing Hormone. So it's possible we accidentally treated her for an underlying endocrine issue that no one realized she has.

[kroe1]

That list of her symptoms that you typed above should be in your hand during the appointment. Also, write out your questions in advance. This helps you remember everything during the few minutes you are with the physician.

[PhotoGal]

We have three kids that are followed by the endocrinologist. For the first appointment, the doctor did the bone age xray for two of them and blood tests for two (one kid had both). One tested borderline-low for growth hormone on the blood test, so he went back for a longer test (the stim test). One had a genetic difference that explained her lack of growth. Our third has a form of skeletal dysplasia (that we knew ahead of time) but we thought we should still bring her in since she is the smallest. :) The nice thing is the endo is very good at taking accurate measurements, so they can track growth over time more accurately.

 

Best of luck!

[ktgrok]

I'd also want testing for celiac. 

[shawthorne44]

That sound rough.   We love our daughter's endo. doc.   In my daughter's case the problem was low growth hormones.  The long test for that was horrible, absolutely horrible.  DD's symptoms didn't match your DD's.   Our first sign was when didn't grow between 6-9 months checkups.  For a long time they thought that we just weren't feeding her.  

[Crimson Wife]

  Our first sign was when didn't grow between 6-9 months checkups.  For a long time they thought that we just weren't feeding her.  

 

Isn't that the WORST when you're nursing? I got lectures about making sure the child got enough "hind" milk to the point where I only fed on one side per feeding and spent several months with lopsided b00ks as a result :glare: The R.D. actually wanted me to wean her so that I could feed her preemie formula and track the ounces consumed. :rolleyes: Sorry, lady!

 

[HollyDay]

Have you also seen a geneticist?

[Nart]

Did the pediatrician send over a copy of her growth chart since she was 1? How certain are you of her age? I have a friend who adopted a baby internationally who the agency claimed was 1 but a developmental pediatrician in the US speculated was closer to 3 and delayed due to spending time in an orphanage. I would also research the average height for the region where your daughter was born. If I remember from a previous post, is it Guatemala? I am only 5'3" (or maybe even 5'2") and I felt really tall for the first time in my life in Guatemala.

[SKL]

Hmm, the growth chart question ... if I had more time, I could put one together from various sources, but she hasn't been with any one doctor for an extended time period.

 

Basically IIRC she was about 25th %ile in height when she came home at 1yo, and is now 20%ile, so not much different, though I wonder if she should be having her growth spurt given that she's in puberty.  Weight has gone from below 5%ile to about 35%ile.  (She is not chubby but muscular and has a big chest [rib cage].)  I realize her height / body shape could be simple genetics.  But that does not explain the other issues.

 

Her age could be a little off, but not by much.  I saw a video of her when she was 3mos and visited her for 3 days when she was supposedly 6.5 months old.  It would be hard to believe she was much older than that at the time.  She was in foster care, not an orphanage.  General development has been more or less normal for the past 10 years.  Some odd things that were hard to pin down, but no major milestones missed etc.

[shawthorne44]

Isn't that the WORST when you're nursing? I got lectures about making sure the child got enough "hind" milk to the point where I only fed on one side per feeding and spent several months with lopsided b00ks as a result :glare: The R.D. actually wanted me to wean her so that I could feed her preemie formula and track the ounces consumed. :rolleyes: Sorry, lady!

 

 

 

Fortunately, I never had grief over breastfeeding.  She'd been exclusively breast fed up to 6 months.   Then the 9 month checkup was when they found the problem.   Then at 11 months she got a tooth and self-weaned.  She bit me -  hard and then laughed and wouldn't take the breast she'd only try to bite.  So, there wasn't much time between the problem found and no more breast.  I pumped for a bit and they had me add whipping cream to the bottled breast milk.   That just meant that she had less.  My goal had been no formula, exclusive breastmilk to 6 months and breast milk and real food to one year.   So, we mostly made it, but cow's milk started earlier than I'd planned.  

 

The main problem was all the medical people thinking that I wasn't feeding my child.