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Raising Special Needs Kids Raising Special Needs Kids

Pituitary Dwarfism - UPDATE

Posted by on Jun. 15, 2013 at 6:51 AM
  • 28 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 - 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 6:51 AM
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SamMom912
by Silver Member on Jun. 15, 2013 at 7:40 AM

I dont.. But i do have experience with a 6 (almost 7 year old)  who is the size of a 4-5 year old... We did have a bone scan last summer.. At almost 6, which revealed 4.5... To which the (the endocrinologist) said if his bone age is small, then it could mean that he was a late bloomer.she assured me that even if there was moderate growth over 6-12 months that it could mean late bloomer and i needed to revist every 6 months. He has grown about 1" in almost 10 months... So not as much as typical kids.. (2-4" and 2-4 lbs i think is average growth).

They did run blood tests 2xs ro make sure his piruatary glad was sending the right signals to his body and to rule out other health issues. We go again in August. 

Have they run any growth tests on Brady? 

darbyakeep45
by Darby on Jun. 15, 2013 at 8:38 AM

He will have growth hormone stimulation testing on June 26.  Typically the general blood test they do on your growth hormone is only a test of the overall G something and it's not 100% accurate as your growth hormone level changes ALL the time throughout the day depending on the time of day, when you have eaten, etc.  This is why the stimulation testing is most accurate as it's 4 hours long, you fast before hand, and they test your blood every 30 minutes.  Brady's initial GH test showed a level of 48 which is below normal (75 is normal for his age according to the doctor), but it wasn't too low.  This stimulation testing on the 26th should give us an accurate reading.  

Quoting SamMom912:

I dont.. But i do have experience with a 6 (almost 7 year old)  who is the size of a 4-5 year old... We did have a bone scan last summer.. At almost 6, which revealed 4.5... To which the (the endocrinologist) said if his bone age is small, then it could mean that he was a late bloomer.she assured me that even if there was moderate growth over 6-12 months that it could mean late bloomer and i needed to revist every 6 months. He has grown about 1" in almost 10 months... So not as much as typical kids.. (2-4" and 2-4 lbs i think is average growth).

They did run blood tests 2xs ro make sure his piruatary glad was sending the right signals to his body and to rule out other health issues. We go again in August. 

Have they run any growth tests on Brady? 


SamMom912
by Silver Member on Jun. 15, 2013 at 9:06 AM
They did a tsh level test which was two blood tests run within week of each other to see if the numbers were ok. First numbers were not. 2nd try was.
MrsBoats08
by Member on Jun. 15, 2013 at 9:14 AM
My dd is 6, 30lbs, and 38in. She has been diagnosed with Russell-Silver Syndrome at 2. She also has a form of dwarfism, although her HGH levels are normal.
bzzybeemomof3
by on Jun. 15, 2013 at 9:35 AM
1 mom liked this

 My dd will be 5 she is 41 inches and 40lbs.

I have a 16 month old who will be going to get testing done for this as well. She was never failure to thrive though, but here they do it differently to consider failure to thrive. she is 16 months 27 inches and 18lbs.  She is growing, but they will test at 2 yrs of age unless they get more concerend. I dont really have any advice since we are not there yet.

Good luck.

darbyakeep45
by Darby on Jun. 15, 2013 at 10:08 AM

Thanks for sharing:)  How was diagnosed with the form of dwarfism?  I'm just curious.  

Quoting MrsBoats08:

My dd is 6, 30lbs, and 38in. She has been diagnosed with Russell-Silver Syndrome at 2. She also has a form of dwarfism, although her HGH levels are normal.


darbyakeep45
by Darby on Jun. 15, 2013 at 10:11 AM

I'm very interested to learn more about your daughter if you don't mind:)  I'm intrigued.  My son will be 5 in October and is 36 inches tall and about 35 pounds.  His weight isn't a huge concern to me...mainly his height.  His endo is concerned that his weight hasn't changed in a long time.

Quoting MrsBoats08:

My dd is 6, 30lbs, and 38in. She has been diagnosed with Russell-Silver Syndrome at 2. She also has a form of dwarfism, although her HGH levels are normal.


mandee1503
by Amanda on Jun. 15, 2013 at 10:27 AM
I hope you get some answers. If he has that will you still do injections?
darbyakeep45
by Darby on Jun. 15, 2013 at 10:29 AM

Yes.  HGH injections are the treatment for Pituitary Dwarfism anyways.

Quoting mandee1503:

I hope you get some answers. If he has that will you still do injections?


Elyssa414
by Elyssa on Jun. 15, 2013 at 11:45 AM
1 mom liked this
I don't have any experience- my children are gigantic.

Galen is 21 months, 28lbs and 34"

I don't remember the other boys heights at that age, but Liam was 40lbs and 40" at 4 years.
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