October Follow-up Appointment

October 2007

It was time for Kyle to go back to see his Pediatric Endocrinologist. They measured him and he had grown 1.5 inches since April. They seemed pleased. He also weighed about 81 lbs. now. 5 pounds more than April.

They increased his growth hormone dose to 2.325 MG/day, 6 days a week.

First Week of High School

August 2007

I can't believe it! I have a kid in high school! I didn't know what to expect. Kyle didn't know what to expect either. He is clearly the shortest kid in the entire school, and if someone didn't know him, they would wonder why he was in the high school. But he boldy walked the halls as if he was supposed to be there. Most people know Kyle. He's the short kid. Oh yeah. Within the first week, the only incident he had was getting put into a trash can. It was done by an upperclassman out of fun and not out of meanness. Kyle's friends helped him out and he continued on his way. I think most kids realize that they'd have to be crazy to actually try to hurt Kyle, because it would be so unfair. And, I think they know that if anyone ever hurt him, they'd have to deal with ME!

The Letter

I got home from work and checked the mailbox. Among the numerous credit card applications and JC Penney's Biggest Sale of the Day coupons, was a letter from our insurance company. On the outside, it looked and felt like the other two letters we had already received denying coverage. I slowly opened the envelope, afraid of what it would say. But as I began to read, I was excited to read that after further review the request was APPROVED! The approval time period was for 7/16/07 - 1/16/08. Every 6 months, the insurance company would review the claim and see if they would choose to continue covering the drug. I called our advocate and she was excited to hear the news. Shortly thereafter, a pharmacy a few states away made contact with me as to when I'd like to receive the first month's shipment. I was informed that they would call me every month and let me know when to expect the shipment.

Meanwhile, Kyle continued his daily shots, still having his dad administer it.

The Treatment Begins

This picture was taken at Kyle's 8th grade graduation, May 2007.

On June 12th, 2007, the 3 month supply (FREE) from the drug company arrived. We were to notify a home-health agency when we were ready to have a nurse come over and explain how to give the shots. A few days later, we were all sitting in our dining room, listening and watching the nurse explain the procedure. The shot is to be given subcutaneously (just under the skin) in the fatty part of the arm, the thigh, or the back. It's also a good idea to switch the places where the injection is given to avoid scar tissue buildup. The nurse explained that some kids give the shots to themselves, but others have their parents do it. Kyle opted for the parents doing it and I opted out quickly, leaving my husband to be the one left standing. I could do it if I HAD to, but the way I saw it, I didn't have to. After we felt comfortable with the procedure and had exhausted all our questions, the nurse left us with her phone number in case we had further questions arise.

That night, it was time. We prepared the area (by we, I don't mean me), we dialed the amount of growth hormone and my husband proceeded to give Kyle the shot. It's a tiny needle, so mainly it just felt like a little sting. The medicine burned a little while being injected, but not too bad. The first treatment was complete. I did not expect an overnight growth spurt. I had read that it can take up to one year before you start seeing results.

Kyle's prescription was for 2.035 MG per day, 6 days a week.

It was time, alright. Time to hurry up and wait...

Overwhelmed

While beginning my research into growth hormone treatment, I found that the treatment was extremly expensive. I had already been warned so I wasn't too shocked to find out it costs over $100,000 per year. I also learned that some insurance companies don't pay for growth hormone treatments. (Please note that upfront, I knew that my regular medical insurance did not cover growth hormone treatments. It was my prescription insurance that we would be submitting the claim to). In the middle of my crisis, I received a call from the drug company. The lady introduced herself and said she would be my advocate that would be working with the insurance company. She explained that she would take care of all the paperwork, including the appeal that usually followed the denial of coverage. She went on to explain that it was typical of the insurance company to deny the claim two or more times before accepting it. That helped. I didn't even know where to begin on how to deal with insurance companies. After the first denial of coverage from my insurance (based on the fact that Kyle did not fail the growth hormone stimulation test), I called my advocate and told her about the denial. She immediately began the appeal process. Which was quickly followed by a second denial. My advocate explained to me there was a 2nd level appeals process and due to privacy issues, I needed to ask my insurance company what that process was. I called my advocate and explained to her the process and she was preparing to proceed. In the meantime, while the paperwork was being filed and refiled, Kyle's window of growth opportunity was beginning to close. To help Kyle, the drug company offered us a 3 month supply of his growth hormone for FREE, while they dealt with the insurance. They also offered us some information on a program that would provide the drug at little or no cost to us if the insurance ultimately denied the claim. WOW!

The Results Are In

April 21, 2007

Per doctor: ESR, tTGA and growth hormone stimulation test are all within the normal range, however, the growth hormone was producing at a very low normal. Normal growth hormone production falls between 183-850. Kyle's barely topped 200. The tests ruled out chronic illnesses, celiac disease or a growth hormone deficiency as a cause of Kyle's poor growth development. Since Kyle's linear height is -2.53 SD (standard deviations) as compared to his genetic potential of 5'8", we highly recommend to start growth hormone treatment. In addition, he may also need Letrozole to slow down the skeletal maturation for optimal time for treatment. A growth hormone application has been turned in.

Kyle has been diagnosed with Idiopathic Short Stature (ISS). That means there's no clinical reason why he is short. But the doctors strongly feel that since he is less than 3% below the size of other boys his age, the growth hormones could benefit him.

Test Day

Once again, we found ourselves getting up early and heading towards the big city. Yeah, it was early, but to finally be able to know for sure why Kyle wasn't growing was worth every early minute. At this point, I was looking for peace of mind. Either he had something wrong and they could fix it or he didn't have anything wrong and would start to grow eventually. I wanted to see my son grow to be the same size as all his friends. I wanted his friends to be able to remember a time when Kyle was just a little guy. We were very lucky, though. Kyle didn't get picked on too much because of his size. He is a genuinely good guy, very quiet, very non-confrontational, very friendly. Mostly, his friends would surround him in an effort to protect him. After all, Kyle was preparing to enter high school (9th grade). You've heard stories about what upper classmen do to freshmen. So have I, which worried me. But, Kyle's dad had spent a couple years coaching some of these upperclassmen, which probably helped Kyle gain some respect among them.

Shortly after we arrived and checked in, Kyle's name was called and we followed the nurse once again. This time, we were taken to one of several small rooms, which had a comfortable recliner, a TV and a curtain used as a door. To begin with, the nurse explained the testing process to us. Medicine is given to stimulate the pituitary gland to release the growth hormone. The two medications that will be used are Clonidine and Arginine. Once the IV is started, a baseline blood sample will be obtained. Clonidine is then given orally. Common side effects to this medication include drowsiness and decreased blood pressure (Kyle's blood pressure will be monitored during the test). Blood specimens will be obtained from the IV every 30 minutes for 3 hours. Arginine will be started at 90 minutes and will be given through the IV over 30 minutes.

The nurse then brought Kyle a pillow, a blanket and a notebook containing movie titles of all the movies they had available. He chose Remember the Titans, an excellent choice I might add. When the test had begun, I put in the DVD and sat in a chair that was not nearly as comfortable as Kyle's and watched as Kyle's eyes began to droop. Just as he would doze off, the nurse would come in to take another blood sample. He eventually was so tired he didn't even wake up while they took the blood sample. Good thing I liked the movie he chose. Once the movie was over, I began to read a book to pass the time. Finally, the testing was complete. The IV was removed. Kyle was starting to wake up. They checked his blood pressure, which was very low, so they gave him something to eat and drink while he waited for his blood pressure to become normal again. After his BP was back to normal, we were finished with this appointment. The results would be available in a couple days...

Big City Hospital - Big Hopes

April 12, 2007

It broke my heart to step into the children's hospital and see so many sick children. I had to stop and thank God that the reason we were here with Kyle was not a life-threatening situation. On our way to the Endocrinology unit, we passed kids being wheeled around in wagons; some without hair, some crying, some content at looking at the bright colors a children's hospital displays. We saw parents with tears in their eyes as they sat comforting their sick little one. My heart truely goes out to parents who have a child with a life-threatening disease.

We got comfortable in the waiting room and I began to fill out the necessary paperwork. After just a short time, Kyle's name was called, so he, his father and I went to join the nurse as she led us into the unknown. "First things first." she said. "Take off your shoes and jump on the scale." Kyle weighed in at 76 pounds. "Okay, sweetie, let's get your height". Kyle was 4'8". Kyle was within one week of turning 14 years old.

We sat in our room waiting for the doctor, who eventually joined us and began by asking a ton of questions about family history, what types of diseases run in the family, etc. Mother's height is 5'3". Father's height is 5'8". Child's pulse is good, blood pressure is good, pupils are good, ears are a little dirty, but good. Neck is supple, Oropharynx is clear, Tympanic membranes are clear, Respiratory: Clear. Cardiavascular: Regular rate and rhythm without murmurs. Abdomen is soft and nontender and nondistended. Neurological: Nonfocal. No scholiosis. Very early signs of puberty. His bone age was concurrent with his actual age, thus ruling out a constitutional delay of growth.

The doctor spent some time reading over the test results and reviewing the growth records. She was extremely grateful that Kyle's doctor had done all those preliminary tests and was glad we brought the results and the growth charts with us. According to the test results, Kyle's IGF-1 revealed a low-normal which is suspicious for growth hormone deficiency. She wanted to schedule him for a growth hormone stimulation test to rule out a growth hormone deficiency. She explained how the window of growth opportunity would soon begin to close, so treatment, if necessary needed to begin immediately. She also mentioned that she would have liked to have seen Kyle 5 years earlier, but it's a little late to worry about that.

In addition to the growth hormone stimulation test, she ordered a tTGA and ESR to rule out celiac disease and chronic illnesses that would impede his growth.

Preliminary diagnosis: His height is -2.53 standard deviations which would actually qualify him for idiopathic short stature if his growth hormone stimulation test is normal.

We were given a pamphlet which included the instructions on how to prepare for the Growth Hormone Stimulation Test, as in do not eat or drink (except water) after midnight the night before the test. We scheduled the appointment for April 17th...

I Was Afraid of That

March 28, 2007

It was immunization time. I scheduled a doctor's appointment for Kyle so he could stay up-to-date on his immunizations. At the doctor's visit, the doctor began to look into Kyle's growth progress, or lack therof. I knew immediately what was going through the doctor's mind. The time had come. I could ignore the problem no longer. This one wasn't going away. The doctor explained to me his concerns and showed me Kyle's growth chart and pin-pointed where Kyle was on the chart, which indeed was around the 2nd percentile. He explained to me possible reasons why a child could be short: chronic disease (for example, malnutrition), familial short stature, or constitutional delay of growth and development ("late bloomers").

Worldwide, malnutrition is the most common cause of growth failure and is usually related to poverty or anarchy. Nutritional deficiencies in developed countries are more often the result of self-restricted diets. Poor weight gain is often more noticeable than short stature.

Children with familial short stature have short parents. These normal children display normal growth velocity (speed of growth over time), and their bone development is normal (as indicated by the bone age corresponding to the calendar age). Children with familial short stature enter puberty at a normal time and typically complete growth with a height consistent with that of their parents.

Constitutional growth delay is a term used to describe normal children who are small for their age but who have a normal growth rate. Constitutional growth delay is characterized by delayed bone age, normal growth velocity, and a predicted adult height appropriate to the family pattern. Children with constitutional growth delay, often called "late bloomers," typically have a close relative who displayed constitutional growth delay. For example, the relative with late blooming may have had her first menstrual period when she was older than 15 years. A male relative with late blooming may have reached his final adult height after age 18 years.

Although rare, endocrine disorders, such as hypothyroidism (thyroid hormone deficiency) or growth hormone deficiency also cause growth failure. Short stature is commonly associated with genetic diseases, such as a SHOX gene mutation, Down syndrome, or Turner syndrome.

The doctor went on to explain that if there was a problem, we needed to begin treatment immediately because once the window of growth opportunity closes, there's nothing else that can be done. He wanted to refer us to a Pediatric Endocrinologist at a large children's hospital a couple hours from our home.

Before we left his office, he ordered some lab work which included a UA, CBC with differential, Thyroid function tests, IGF-1, IGF Binding Protein 3 and a Bone Age test

Next step, make an appointment with the Pediatric Endocrinologist and provide him with Kyle's test results and growth charts...

Watching Your Child Not Grow

My son, Kyle, was born in April of 1993. He bounced into the world at a whopping 8 lbs. 1 oz., 20 1/2 inches long. His height growth pattern fell between the 10th to the 25th percentile from the age of 3 1/2 to 5. By the time Kyle was 7 years old, he had decelerated to slightly above the 5th percentile. When Kyle turned 9, he was below the 5th percentile. At age 13, when most boys in Kyle's class were a foot taller than him he had now fallen below the 3rd percentile. During these years, his doctor always showed concern for his growth pattern and had suggested we have Kyle eat more food and drink more milk. What the doctor didn't seem to understand was that Kyle was a very healthy eater. As the doctor showed her concern, I had my concerns as well. But, kids grow eventually, right? He's just a late bloomer. I took into consideration that at the age of 14, Kyle's father was 4'9" and he managed to reach a respectable adult height of 5'8". Kyle was surely following in his father's footsteps, right? Time will tell...