Wednesday, June 6, 2012

Muscle Man

My little muscle man, watching a little Pocoyo!

Have you seen a boy watch TV on his tippy toes before?

When I brought Theo home from Ukraine, he spent 10 days in the hospital thanks to refeeding syndrome. After he started to recover, and his blood chemistry stabilized, and he started getting regular feeds once again...he didn't gain ANY weight. Nothing.

After several frustrating days and many painful blood draws and endless testing, Theo was found to be growth hormone deficient. Due to his deprivation and abuse for four years, he was diagnosed with psycho-social dwarfism. Like a goldfish in a bowl too small, he had stopped growing. He was miles below the growth chart for a child his age...13 pounds at 4 years of age.

I call him a little muscle man because he's had well defined muscles and very little body fat since he started growth hormone injections over 18 months ago. Good muscle tone is not exactly a characteristic of a child with Down Syndrome!

About a month ago, Theo stopped getting injections. He has gained an average of one pound per month up until now, but there are some serious risks to GH therapy, especially for a child with Down Syndrome. Like leukemia. (shudder!!)

Since we stopped the injections, he has lost a lot of muscle tone. He is softer, squishier, and looser. Not sure I like it! He is looking thinner in the face, too. More like when I met him. Boo!

Tomorrow Theo has a growth hormone stim test. We'll be getting up at 3:30am to drive to the big city children's hospital for this lengthy procedure. He will receive injections of substances that generally stimulate the secretion of growth hormone. He will have periodic blood draws to see if his body is working better than it did two years ago. He will go back on GH therapy if he has not improved.

I'm not sure what sort of results I'd like to see. Selfishly, I'd like to see him continue to receive injections. I'd also love to see him grow and develop normally without it...but I'm not that optimistic.

I am firmly convinced that there are many other post-institutional children who are growth hormone deficient due to psycho-social dwarfism. It may be very easy to miss this, especially in children with Down Syndrome, who are expected to be somewhat smaller than average. If your child is not making regular gains, is painfully small for their age, it is worth seeing an endocrinologist to explore this condition.

Also, psycho-social dwarfism cannot be detected by typical blood draws. A stim test, much more involved, is required. Don't get brushed off if you have real concerns.  


Anonymous said...

No smash cake pictures? :(

Jill said...

I hope you were able to get some answers today and he survived all the poking ok. That is very interesting that the GH increased/maintained his tone. And you are right about their being more kids out there with this dwarfism. Thanks for educating us!