Growth Hormone Deficiency

GROWTH HORMONE DEFICIENCY

I knew early on that something was wrong with my son. I could feel it in my heart.

From 2-3 months old he didn’t grow at all in height or weight. I thought it was crazy because that’s when my friend’s children were growing the most. I told doctors about my concerns… but they said that he was fine because he was happy and seemed to be meeting all of his milestones, so they figured he would just be small like me.

He eventually dropped below the 3rd percentile.

Around the age of 11 months he stopped growing less and less. At 1 years old he was 27 inches and 18.5 pounds.

Until the age of 2.5 years old Luke only grew a few cm’s and gained a few pounds. He continued to drop lines on the growth chart, well-below the 3rd percentile.

There were other factors that concerned me other than his growth.
1. He still had such a baby face and looked at least 18 months younger than all of his peers.

2. At the age of 2 he was still wearing 9-12 month clothing.

3. He was well behind his peers in strength and gross motor skills. (Couldn’t run, or jump etc)

4. His immune system was weak. He seemed to be sick with a fever or cold every week or two weeks. He had pneumonia and bronchitis more times than a child ever should.

5. Lethargic, barely any energy.

6. His teeth came in very slowly (He’s almost 4 years old and still doesn’t have his 2 year old molars).

I went to multiple doctors to share my concerns. They often said, “He will just be small like you (I’m 5”2, my husband is 6”0)” OR “He will eventually catch up, he might just be a slow grower.”
Honestly, knowing that something is wrong with your child and feeling unsupported by the medical system is a HORRIFIC feeling.

I think I had less sleep in the first 3 years of Luke’s life than I do now with my newborn. And I think I cried more than I ever thought possible. Seeing my son struggle and hearing him say, “Mommy, why can’t I keep up with my friends? Why am I so small?” while tears are rolling down his cheeks, is honestly the worst feeling in the world. I didn’t care that he was small, I cared about his health. “Poor growth = poor health”.

I knew that time was passing by quickly and that I had to push more for answers, even though most doctors brushed off my concerns…I just kept pushing and pushing and pushing.

I eventually pushed to see another paediatrician and for the first time ever a doctor took my concerns seriously. She AGREED that something was wrong, so she sent us to a paediatric endocrinologist.

It took months to get in my son in to see the endocrinologist. I called nearly everyday to get my son in for an appointment (I’m sure the secretary had me on her “hate list”). By the time he finally got in for an apt, he was 3 years old, it felt like fucking eternity. I just wanted damn answers. Three years is a long time to find answers.

During this apt, his endocrinologist looked at his growth chart (luckily I had several info for his growth chart because I had taken my son to the doctor so many times). Because we had so much information on Luke’s growth they fast tracked him to get some special testing done to determine whether or not he had GROWTH HORMONE DEFICIENCY. It was still a 6 week wait.

We finally got in for the testing and it was about 5 hours long. Luke had to have an IV (which is horrible, especially in a really tiny human). They injected different hormones in him to try to stimulate his growth hormone. These hormones made him feel quite sick and it was really hard to keep a 3 year old still for 5 hours. He had also been fasting since the night before and was not allowed to drink anything either.

We got the results 3 weeks later and it showed that out of 7 tests, Luke FAILED 6 and PASSED 1. Because he passed 1 test, 1 stupid test (and just barely might I add), the government would not accept a GROWTH HORMONE DEFICIENCY diagnosis and refused to fund his medication.
(His medication would start out costing 500$ a month and eventually go up to 2000$ a month).

In order to grow and be a regular healthy child Luke needed this medicine. The medicine he needed was humatrope (growth hormone) and therefore he needed a needle every single day to inject this medicine.

Because the government refused to fund Luke’s medication, I went to CTV & CBC and voiced my concerns. Still the government refused and they actually got really upset that I went to the media. But FUCK them, I had to fight for my child.

Through social media we got connected with an owner of a large pharmaceutical company in Toronto. He fought with my teaching insurance on my behalf to get funding for Luke for the next 3 years. And it was approved.

Receiving that call was a miracle. I remember dropping to the ground and crying. FINALLY, FINALLY my son’s healing journey was going to begin. FINALLY he would have a chance at living a healthy life. FINALLY all of my fighting with doctors and my persistence paid off. FINALLY, fucking FINALLY.

My son has now been on humatrope for 6 months. He has had over 180 needles. He’s grown 3 inches and gained 4 pounds. He is so strong now, he can run, jump, climb and keep up with his peers. He is so much healthier now and is rarely sick. He has so much energy now and isn’t lethargic anymore. He’s so happy and he’s proud of himself and his confidence is at an all time high.

The biggest lesson I learned was that if YOU truly believe something is wrong with your child, fight for it, fight for as long as it takes, do anything and everything. We fought for 3 years (it felt like 20) and we gave our son a chance at a healthy life. It was exhausting and there were times that I felt like giving up, but I followed my heart and pushed.
If YOU or anyone you know has a child with any of the same symptoms as Luke, please direct them to the http://www.magicfoundation.org and tell them to research the various growth diseases that there are. Every child deserves a chance at a healthy life and unfortunately we need to be their voice when the medical system won’t or can’t be.

This is a photo of Luke 6 months ago (before starting treatment):

Luke before GH

This is Luke currently (6 months after starting treatment):

Luke and Odin

 

2 thoughts on “Growth Hormone Deficiency

  1. Just found your blog and it brought tears to my eyes. I’m 4 11 and my husband 5 10 and we have a 4 year old son that was just diagnosed with a growth hormone deficiency. Since he was 10 months old I’ve been trying to address his growth. We went to multiple doctors, appointments, And had many food struggles as the Advice we got was “he needs to gain more weight to help with his height” . After multiple attempts to get to an endocrinologist (I had to literally cry hysterically at my pedriatician’s office) we were accepted at the endocrino and after multiple visits we were able to get a diagnosis for his short stature. I wish the rode for me and you was not this long. It would have spared us of so many stressful and frustrating moments. Thanks for posting about your journey!!!!

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    1. Thank you so much for commenting on my blog! It’s nice to know that I am not alone in this journey! I am so thankful that your son was able to get a diagnosis and that you were able to trust you instinct and push for answers! Are you also in Saskatchewan!? Feel free to email me anytime at kathleengerms@gmail.com! Would be nice to connect with another mom who understands the struggles!

      Like

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