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Hi! My name is Jen. I am blessed to have two beautiful daughters. Daphne is six and Calliope (Calli) is four. When Calli was 6 months old, she started getting sick. She had months of ear infections that led to getting PE tubes. Then sinus infections, bronchitis, pneumonia, and other health problems began.
At nine months she began to drop on the growth charts. At 11 months she had surgery to remove her adenoids. Despite the surgery, which was expected to help with her illnesses, she continued to drop on the charts. At six months old, she was at 55 percent for her age; at 12 months old, she was 20 percent. When I questioned our pediatrician about Calli’s growth, she said, “you’re small,” and “she has been sick a lot.” At her 15 month well appointment, Calli was four percent for height and less than three percent for weight. Again I was concerned, and the pediatrician wasn’t. At this point I felt I needed to find a pediatrician that would take my concerns seriously.
When Calli was 17 months old, I switched pediatricians and requested a full blood work up (in part because Calli started getting fevers of an unknown origin around 12 months old). The CBC, Metabolic panel, Immunoglobulin and Thyroid blood work all came back within normal ranges. The pediatrician wanted to see her monthly to weigh and measure her. She said if Calli still wasn’t growing at two years old she would refer us to an Endocrinologist.
I still felt like something was wrong. I honestly feel like it was “mother's instinct.” I decided there was no reason to wait until she was two to try to determine what was wrong. I had already researched Endocrinologists and decided on one. In November 2006, I called the office to set up an appointment. They told me the next appointment with the doctor was in April, but we may qualify for a study. I had all of Calli’s medical records and immediately faxed the records to the office. The next morning I got a call saying Calli did not qualify for the study, but that this doctor had a cancellation and if I could be there in two hours I could have the appointment. What a miracle - Thank you God! I still get chills telling the story today - over two years later. That day, my husband and I met with a truly amazing doctor. During the visit, she commented on Calli’s teeth – she only had 5. She also noticed the soft spot on her head was still open. She assured me that there was something wrong with Calli and that she was going to help us.
The doctor initially thought Calli’s issue could be GI or Immunology related so she started some blood work, stool samples, and a bone age x-ray. Over the next six months we had visits with GI and Immunology doctors. The GI appointments were horrible. The doctor basically accused me of starving my daughter. She was also tested to rule out Cystic Fibrosis. We found another GI doctor that reviewed everything and determined her lack of growth was not related to any GI issues. Immunology also ran tests – they found no issues (but they like to draw blood!).
In May, we went back to the Endocrinologist. At this point, Calli’s growth had stopped. The doctor said Calli had a Growth Hormone Deficiency and bone delay, and would need to have the stim test and an MRI. We went to the hospital for the stim test in June 2007. The stim test was very hard for Calli (and her parents!) to go through. Calli was miserable. She started to get irritable, fell asleep, and woke up throwing up on me. It was a really long day. Three weeks later we met with the doctor and received the results. Calli is growth hormone deficient and would need to begin treatment. She provided us with a brochure about growth hormone therapy and MAGIC support services. We understood that treatment meant we would have to give Calli shots everyday and for a lot of years, but the trade off was worth it. We finally had a diagnosis and a way to help our daughter. We were fortunate to be approved by the insurance company on our first request. The nurse came out to train us to do the shots. On July 12, 2007 Calli received her 1st injection.
Of course we feel overwhelmed that Calli will have to receive shots for several years, but God has blessed our family with a great doctor, the love and support of our family and friends, and the opportunity to become involved with the wonderful people in the MAGIC community. Most of all, we thank God for our amazing daughter who endured this journey with grace and determination. Calli handles the shots like a pro and will tell anyone who asks why she gets them, "my pituitary gland doesn't work; they help me grow."
Calli has been on growth hormone therapy for just over two years. She has grown 7 ¾ inches and gained 10 pounds.
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