When E turned 1, we moved from Pennsylvania to Florida. He was still receiving occupational therapy for his swallowing issues, and we were, thankfully, able to transfer those services over to Florida’s early intervention program. He wasn’t able to eat actual solid food until he was about 15 months old. Any time I tried giving him even stage 3 meals (with chunks in it), he would gag and seemingly choke. It was frustrating and scary.
He continued to have issues with illnesses, ear infections, etc. He had his 2nd set of ear tubes sometime within his second year. We visited a new gastroenterologist as he was still having symptoms of GERD. And still on 2 medicines for it. So, when he was about 18 months old (or so), he had an upper GI (endoscopy) and a PH probe. He had a tube running from his nose and down his throat all attached to a monitor that he had to carry around for 24 hours to measure the acid. Bottom line, testing showed that he still had irritation in his esophagus from GERD and he still had pretty high levels of acid. At almost two. Again, this was not normal.
New state meant new doctors, and I continued to argue with them that he was not well. He also continued to fall down on the growth charts. I continued to be put off.
Until, finally, good or bad, he literally stopped growing. “Normal” growth is 2-2 1/2″ per year. Between his 2nd and 3rd birthdays, he grew maybe 1/4″. And fell off the growth chart completely. This was huge, because it finally got a doctor to take notice and send us to the right specialist – the endocrinologist. In my head, I was thinking “ok, that’s one problem solved, what about everything else?” But then I started researching growth issues. And it blew my mind.
Every single issue he had – not just the growth, but the swallowing issues, the ENT problems, the infections, the reflux, the gross motor delays – every single one could be traced back to a lack of growth hormone. All of it. I sat there looking at the computer wondering how it could be so simple, yet every other doctor missed it! My mouth hung open, I turned around to my husband and told him what I found. He was also floored.
I started poring over information on growth hormone deficiency. One site was recommended by the endocrinologist, www.magicfoundation.org. In the simplest of terms, the pituitary gland secretes growth hormone throughout the body. It’s necessary for muscle growth, bone health, basically the growth of every single organ in your body. So, gross motor delays were because of weak muscles. Reflux and ear problems because those areas did not grow as they should.
We were so fortunate to get referred to one of the best pediatric endocrinologists in the area, Dr. Paul Desrosiers. Or Dr. D, as everyone calls him. He took one look at E and his charts, declared that he strongly suspected growth hormone deficiency (GHD), and said we just have to prove it. The first step in the process (and it’s a looooonnnnngggg process) is a hand x-ray. They take a simple x-ray of the left hand to determine bone age. His was definitely behind. The second step is a growth hormone stimulation test. They basically use an agent to “stimulate” the growth hormone, as normally it is sporadic and occurs during sleep. Throughout, they take blood samples at certain times to test the level of growth hormone. They use two different agents in one test. We had to have this done twice. The first test, he failed one but passed the other (barely). Passing in this case was bad. Insurance companies need two failed “stim” tests in order to approve growth hormone therapy (GHT).
Next step in the diagnosis is an MRI of the brain. Given that E was not quite 3 at the time, this required sedation. He’s had quite the repertoire of operations. The MRI is necessary to check on the pituitary gland. Growth hormone deficiency can be caused by a tumor or other abnormalities of the pituitary. In most cases, it’s idiopathic, meaning there’s no known cause. Thankfully, there were no issues on his MRI.
Now that we had a diagnosis (which, for the record, is officially “pituitary dwarfism”), the real fun began. Treatment. There is no magic pill filled with growth hormone. The only way to administer it is injection. Every day. But I would do anything to make my kid healthy again. Whatever I needed to do. The other issues with GHT are that it requires preauthorization from the insurance companies, and is really, really expensive. When we first started it, we were lucky with only a $25 copay per month. Now, I have a 30% coinsurance on a medication that costs over $4000 per month. And no, that’s not a typo.
Once E started injections, he rapidly became healthier. The first differences we saw were an increase in energy and stamina. Before starting treatment, he could barely make it on a walk around the block without pooping out. After treatment, he was able to go multiple times. Then the growth really started. Most kids have a period of “catch-up” growth – the growth that should have happened if he was “normal.” I looked at his measurements, and figured out that he grew a whole foot in the first 2 years of treatment. That’s an average of 6″ per year! He’s on track on the growth chart to be about 6′, which is far taller than he could have ever expected without treatment.
Next post, I’ll get into the lessons learned from this experience, and how he’s been doing since. This post is getting long!
Thanks for reading!