What you may need or want to know about growth hormone therapy.

Did you ever think I'd say these words?  "We started Lydia's Growth Hormone Therapy."  

It took many more tears, conversations, research and test results to get us there but we are.  We have learned a lot, spoken to many people and have been convinced daily of the benefits this will bring to Lydia. I've consulted with each of Lydia's specialists for their expertise on how this may impact the part of Lydia that they care about. I've consulted with Boston Children's Hospital and Children's Hospital of Philadelphia websites to absorb as much information and knowledge as I could. I've joined Facebook groups for parents. I've connected with the Magic Foundation and had long conversations with one of their members. I've talked to our insurance company, our prescription insurance company, many endocrine nurses, and more.

But most of all, we learned, we listened and we watched Lydia.  

Without growth hormone therapy:

• How long will she need to remain in a car seat?
• How long will she stumble to school because her book bag is too heavy for her?
• How long will parents on the playground ask if she's 3 years old?
• How long will she not have the muscle strength to balance and hop on one leg in PE?
• How long will she struggle to pedal her bike?
• How long will she not have the stamina for long walks?
• And when she's an adolescent...
• And when she's an adult...
• And...

Dan and I have chosen this for Lydia and we believe it will give her a better life now, in 5 years, when she's 15, 25 and into adulthood. Her deficiency is not going to change unless we help it. We want to explain our decision to those who want to listen. It's based in science. We don't want to defend our decision to those who don't want to listen.  We are living in the polarizing, trying, challenging, hybrid, masked Covid times with each of you.  I have a heavy weight knowing that some people may judge this decision and I'm asking for grace and understanding. I'm not sure I've asked for that so directly before. 

A couple weeks ago I went to pick Lydia up from school one day.  Here my darling girl came with a huge smile and a wave when she saw me.  She had on her backpack filled with not much but an ipad, still, too much for her to balance easily.  She was carrying her Johnny Appleseed hat she had made at school, so proud to show me.  A little boy and girl walked past us and made comments that I know were not intended to hurt.  They mentioned how small she is, that she looked like a 2 year old, like a baby and that they couldn't believe she is in kindergarten.  I answered them simply by saying she is 5 years old and in kindergarten.  I'm not sure Lydia was even paying attention to any of this.  As we walked home and I fought back tears I prayed it only hurt my heart and not hers.  This won't be the last time people comment on her size, but now we're doing something about it.

Be brave sweet girl.

Day One: October 15, 2020, 5 years & 4 months old, 38" tall

 

MAGIC's Motto:

Children have a short time to grow and a lifetime to live with those results ®

MAGIC Foundation is the global leader in endocrine health, advocacy, education, and support. Children fail to grow for a variety of reasons. Hormones, genetics, sleep, nutrition, general health and exercise are all factors for normal growth. If you suspect that your child is not growing normally, you are in the right place!  https://www.magicfoundation.org/

How GH Affects the Body Other Than Growth

In addition to growth, growth hormone regulates the metabolism.  As calories are consumed, growth hormone controls whether those calories are used to build bone, muscle and cartilage or stored as fat.  Between meals, growth hormone regulates mobilization of fat for use as energy.  Growth hormone deficiency is a condition that involves impaired linear growth and significant metabolic differences including changes in body composition (decreased bone mass, decreased lean mass and increased visceral adiposity) and lipid profile (elevated LDL cholesterol and triglycerides).  In children with growth hormone deficiency, growth hormone replacement therapy is important to normalize the metabolism and maximize these metabolic benefits.  If a child stops growth hormone prematurely, he/she will not be able to gain the benefits of maximal bone mineral accrual and lean body mass during his pubertal growth spurt and will have increased visceral adiposity and abnormal lipid profile; this can have a negative long-term impact on his/her bone and cardiovascular health.

Boston's Children Hospital Resources:

Overview

http://www.childrenshospital.org/conditions-and-treatments/conditions/g/growth-hormone-deficiency

Symptoms and Causes

http://www.childrenshospital.org/conditions-and-treatments/conditions/g/growth-hormone-deficiency/symptoms-and-causes

Testing and Diagnosis

http://www.childrenshospital.org/conditions-and-treatments/conditions/g/growth-hormone-deficiency/testing-and-diagnosis

Treatments 

http://www.childrenshospital.org/conditions-and-treatments/conditions/g/growth-hormone-deficiency/treatments