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Autism - Support Across the Spectrum Autism - Support Across the Spectrum

Pituitary Dwarfism - UPDATE

Posted by on Jun. 15, 2013 at 6:52 AM
  • 21 Replies


Do any of you ladies have experience or know anyone who does know about Pituitary Dwarfism?  I've done some research and Brady fits this diagnosis to a tee...most kids aren't formerly diagnosed until later in childhood though.  Kids with this diagnosis have slow to no growth at all over a course of 1 or more years.  They are smaller than children 2+ years younger than them.  Biggest symptom is a bone age scan revealing bones of a child more than 2 years younger.  Another symptom is growth hormone deficiency.  Although pituitary dwarfism children have proportionate limbs so they typically "look" normal but are extremely short and have a full adult height much shorter than others.

Brady's height and weight haven't changed in almost 2 years even though he intakes about 1800-2000 calories per day.  His height is "failure to thrive" and not even on the chart for a 4.5 year old.  His bone age scan revealed he has the bones of an 18-24 month old child which is a big difference based on his chronological age.  He is physically the size of a 2-2.5 year old on average.  Most 3 year olds are taller than him.  He wears a size 24 months/2T bottoms and 4T tops...he has a long waist/torso with a distended belly due to his GI problems.  

Any thoughts or experience would be greatly appreciated:)  How tall are your children around this age?  What is their weight? 

UPDATE - UPDATE - Brady's growth hormone stimulation testing is tomorrow...he'll be in the PICU under anesthesia for almost 5 hours.  I received an email from Brady's endocrinologist today in regards to the pituitary dwarfism.  He does think this is highly possible for Brady as it would explain a lot.  He wants to hold off on any diagnoses until after his testing though...totally understandable.  

by on Jun. 15, 2013 at 6:52 AM
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Replies (1-10):
lucasmadre
by Kari on Jun. 15, 2013 at 7:58 AM

Wow, you may have something there Darby. Seems like half the time we are one step in front of the doctors but I guess that is because we care so much about our little ones. I don't know anything about Dwarfism other than what I have learned through watching the tv show little people once or twice but it does make sense for Brady...keep us posted. XO

darbyakeep45
by Darby on Jun. 15, 2013 at 8:34 AM

I might email his endocrinologist about this...just to see what he thinks.  Although his stimulation testing for GH isn't until June 26...I'd like to just let him know I researched it and put some thought into it.  Another symptom that I read about was underdeveloped genitals...Brady has a hidden penis...he was born that way...he's very small overall in that area.  Brady's hands and feet are pretty small as well...just a lot of things I'm thinking about...no idea why though!  LOL!

Quoting lucasmadre:

Wow, you may have something there Darby. Seems like half the time we are one step in front of the doctors but I guess that is because we care so much about our little ones. I don't know anything about Dwarfism other than what I have learned through watching the tv show little people once or twice but it does make sense for Brady...keep us posted. XO


mypbandj
by Jen on Jun. 15, 2013 at 10:06 AM
I'd definitely email the doctor to see what he thinks. It does appear that he fits that definition to a tee. Are their doctors that specialize in that area? I'd want to visit with one. But maybe that's an endocrinologist anyway??

Let us know what they say? We're they talking about giving him growth shots or something like that before?
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darbyakeep45
by Darby on Jun. 15, 2013 at 10:10 AM

Yes, his endocrinologist is the one that wanted to give him growth hormone injections to help get his growth going.  We wanted to do the stimulation testing first though...to get an accurate reading of exactly how much HGH his pituitary gland is producing.  I will keep you posted:)  Thanks!

Quoting mypbandj:

I'd definitely email the doctor to see what he thinks. It does appear that he fits that definition to a tee. Are their doctors that specialize in that area? I'd want to visit with one. But maybe that's an endocrinologist anyway??

Let us know what they say? We're they talking about giving him growth shots or something like that before?


Momof4AEMW
by Gold Member on Jun. 15, 2013 at 10:25 AM

No, but I'm googling it right after this!!!  Now you have me thinking of one of mine I want to check out that as you know is very similar size and age to Brady.  And everything on her is like a 2 year old.  Where do you get bone scans? 

My other two who are only 1 month older than Brady are 36 lbs and 41 inches (Girl about 50th percentile) and 35 lbs, 40 inches (boy about 25th percentile).

Sounds interesting.

darbyakeep45
by Darby on Jun. 15, 2013 at 10:28 AM

I figured you would be interested in this:)  Do your kids see a pediatric endocrinologist?  He's the one who ordered the original blood tests for thyroid, growth hormone, and bone age scan. Those are the 3 main ones to check when you find a child that isn't growing.   Brady is 36 inches tall and about 35 pounds...weight is fine but height is "failure to thrive"...not even on the chart for a 4.5 year old.  Googling it was what got me thinking about it to be honest.  Unlike typical dwarfs, Pituitary Dwarfs have proportionate arms and legs.  Brady's are proportionate.  

Quoting Momof4AEMW:

No, but I'm googling it right after this!!!  Now you have me thinking of one of mine I want to check out that as you know is very similar size and age to Brady.  And everything on her is like a 2 year old.  Where do you get bone scans? 

My other two who are only 1 month older than Brady are 36 lbs and 41 inches (Girl about 50th percentile) and 35 lbs, 40 inches (boy about 25th percentile).

Sounds interesting.


Momof4AEMW
by Gold Member on Jun. 15, 2013 at 10:40 AM
1 mom liked this

 No, we dont' see an endocrinologist (might be now though!)  My daughter's tinyness has always been attributed to the downs, and she is finally staying between 2-5% on the downs growth chart.  But she is just so small/petite, some 1 year olds have bigger hands than her, and she still is in like size 4-5 shoe.  GI never mentioned we see an endocrinologist about it, but I may look into it or talk to her doc the next time we are in. 

How interesting!!


Quoting darbyakeep45:

I figured you would be interested in this:)  Do your kids see a pediatric endocrinologist?  He's the one who ordered the original blood tests for thyroid, growth hormone, and bone age scan. Those are the 3 main ones to check when you find a child that isn't growing.   Brady is 36 inches tall and about 35 pounds...weight is fine but height is "failure to thrive"...not even on the chart for a 4.5 year old.  Googling it was what got me thinking about it to be honest.  Unlike typical dwarfs, Pituitary Dwarfs have proportionate arms and legs.  Brady's are proportionate.  

Quoting Momof4AEMW:

No, but I'm googling it right after this!!!  Now you have me thinking of one of mine I want to check out that as you know is very similar size and age to Brady.  And everything on her is like a 2 year old.  Where do you get bone scans? 

My other two who are only 1 month older than Brady are 36 lbs and 41 inches (Girl about 50th percentile) and 35 lbs, 40 inches (boy about 25th percentile).

Sounds interesting.



 

darbyakeep45
by Darby on Jun. 25, 2013 at 4:57 PM

Update

Jenniy
by Member on Jun. 25, 2013 at 5:04 PM
My youngest has bone growth xrays every year or two. Last year his bone growth was that of a 2 1/2 yro and he was 4 1/2. His Endo said he's going to be tall bc his hormone counts are fine.
darbyakeep45
by Darby on Jun. 25, 2013 at 5:08 PM

Interesting...he has the bones of a 2.5 year old but he's 4.5?  How will he be tall based on that information?  I guess I'm just confused...that's all.

Quoting Jenniy:

My youngest has bone growth xrays every year or two. Last year his bone growth was that of a 2 1/2 yro and he was 4 1/2. His Endo said he's going to be tall bc his hormone counts are fine.


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