My last post - April 2012

First post - January 2007 - 4'8"
Last post - April 2012 - 5'9"

Kyle - Age 19, 5'9 and possibly still growing...

 

Kyle (far right) exceeded our expectations!

Kyle's FINAL appointment

April 28, 2011. Going into this appointment, Kyle and I knew this would be the last appointment. Since he had been off the growth hormones for 10 months, there was really no reason for him to remain under his Endocrinologist's care.

"Kyle, take off your shoes, let's get your height.." Standard procedure called for her to measure him 3 times, because it's THAT important to them. The first 2 measurements, he was 170.2 cm, then the 3rd time he grew to 170.4 cm! Right before our eyes!! That's the equivalent 0f 5'7.09". Now his weight. I don't remember the exact grams, or whatever the metric system measurement is, but it equated to 139.2 lbs. Awesome. That'll work!

The doctor showed Kyle's growth on the growth curve and according to the trajectory of his growth pattern, the doctor is fairly confident that Kyle will continue to grow for approximately 2 more years, possibly reaching a final adult height of 5'9", one inch past his target height of 5'8", which was established in 2007 using factors such as parents height, etc. He suggested he didn't really have a need to continue to see Kyle from here on out. We quickly agreed.

April 2007, 14 years old - 4'8", 76 lbs.
April 2011, 18 years old - 5'7.09", 139.2 lbs.

Needless to say, we are happy with the results of the decision we made in 2007 to begin the growth hormone treatment. Would Kyle be as tall as he is if we had chosen not to participate in the growth hormone therapy? We will never know. This is life. There are no alternate endings. And to quote Eminem... "Look, if you had one shot, or one opportunity, to seize everything you ever wanted-One moment...Would you capture it or just let it slip?" We captured it. What will you do?

Senior Prom

Yes, it's finally here. Kyle's senior prom. Third time in a tuxedo. He's a little bigger yet this year, and so was his tux. Though Kyle inherited my dad's long arms and big hands, and his tux sleeves seemed a little short, but he didn't have to wear the jacket very long anyway, and he was able to look good for the pictures, which is really all that matters. Once again, normal kid, proud mom!

Baseball anyone?

When the Cal Ripken League advanced into the Babe Ruth league (around age 12), Kyle was left in the dust as far as growth and opportunity. At this time, many of his teammates had really started hitting their growth spurts. Some pitchers were beginning to approach the 6' mark. Kyle was stuck in the 4' range and was having a hard time competing at this level. Boys were turning into men, and Kyle wasn't. He decided to give up on his baseball dream.

This spring, his senior year of high school, Kyle is back on the field with his former teammates and enjoying every minute of it. He's the starting third baseman for his high school baseball team and is very happy to have the opportunity to once again, be a part of a team.

January 2011 Appointment

Due to inclement weather, the Endocrine team was not able to travel to the Outreach Clinic for today's appointments. Appointment rescheduled for April 2011.

Wrestling - No thank you

After 3 seasons of wrestling, Kyle has decided not to wrestle his senior year. He's gained enough weight that he would be wrestling in the 140 lbs weight class, which is a very competitive weight class.

Freshman year - Kyle weighed 88 lbs, but wrestled in the league minimum 103 lb weight class.
Sophomore year - Kyle was up to the 112 lbs weight class
Junior year - Kyle was in the 119 lb weight class, and he struggled to keep his weight this low, but there was already another wrestler in the 125 lb weight class. How do you tell a kid who has struggled with growth his whole life to drop weight? You don't!

Are you ready for some football??

Kyle is back on the gridiron this season, proudly wearing #35 as he's once again, part of a team and enjoying every minute of his senior season. I'm so happy for him. He always liked playing football, but as his growth stalled and everyone else's didn't, it would have been very difficult for him to play. But not anymore. He's back, baby...and lovin' it! (Dear God, please don't let my baby get hurt!)

Did I mention Kyle was the 2010 Football Homecoming King?

Appointment - June 2010

June 2010 - 5'6", 129 lbs. Kyle and I had discussed him stopping growth hormone treatment and had both agreed it was time. When asked by the doctor, we suggested Kyle was ready to be done with the Growth Hormone daily shots. The doctor said it was up to us, so we reaffirmed our decision. NO MORE DAILY SHOTS!!! Yay! No more "painful" shots for Kyle and no more constant daily reminders by me. He was scheduled for another bone age scan, but I asked if it was necessary, considering the results would have no bearing on anything. They agreed. Next appointment, January 2011.

Junior Prom

Kyle has grown so much since he went to prom his freshmen year! But he still looks incredible in his tuxedo. This tux is quite a bit larger than the one he wore 2 years ago! Others see Kyle pull up in his Grandpa's Chevy Silverado, then helping his prom date out of the truck and escorting her past the crowd of people who've come out to see the sharp dressed couples on this nice spring evening. People are smiling and camera's are flashing as they walk by, both smiling. This time, I did not hear anybody talking about how short he was and how there's no way he could be in high school (comment I heard from his freshman year promenade). He was just another kid in a tuxedo. And I was just another proud mom!

One year later...

Picture taken April 2010.

Football...FINALLY!

Now that Kyle has grown, he has decided to go out for football. He hasn't played for 5 years, since he was so much smaller than everyone else. But it's nice to see him out there in a uniform and part of a team. He isn't noticeably smaller than everyone else, which is nice. I don't want him to be "that kid"...

Kyle's February 2009 appointment

We just got back from Kyle's Endocrinologist appointment. He is now 5'2 1/2" tall. He's very close to catching me in height, a moment I've been waiting for for a long time. The day he's taller than me, we are having a party! People whose kids don't have growth issues probably don't celebrate this milestone. Or maybe they do... Kyle weighed 115 lbs. which is exactly what he weighed 4 months ago. Since his last appointment, he has been actively involved in Wrestling at his high school and has managed to maintain his weight by staying in shape. Wrestling regionals were last weekend, and the top four wrestlers in each weight class go to state. Kyle finished 5th! We were proud of him for doing his best this year and watched throughout the season as his love for wrestling grew.

Kyle did reach a milestone at this appointment. He is now officially back on the growth charts, baby! He started his life around the 50th percentile and reached as low as just below the 3rd percentile. Since beginning treatment, Kyle's growth has begun to head upward and according to the direction it was going, we had predicted this February appointment would show he had reached the growth curve. We were right, and though he's just now at the 5th percentile, the direction of his growth shows he will be catching some of his friends pretty quickly, as their growth has slowed down.

For now, the doctor did not increase or decrease his amount of growth hormone, and he's still taking the Letrozole, the drug that prevents the growth plates from fusing. At his next appointment in June, he will get another bone age scan and possibly be taken off the Letrozole. It has been almost two years since we were referred to a Pediatric Endocrinologist. And we are making progress!

Kyle holding a big fish!

October 2008

Yesterday, Kyle had another Endocrinologist appointment. At the last appointment in June, a bone scan was done to determine his bone age. The results of the scan showed that Kyle's bones are 12 1/2 years old, despite his actual age of 15. This is a good thing. Since his bones think he is younger than he actually is, this will buy him more time in which to grow. Now if you've been following the blog, you may remember in March of 2007, the bone scan done on Kyle determined his bone age to be 13 years 6 months. I'm not actually sure his bones could have gotten younger, but then again, I'm not a doctor. I mentioned to his doctor the discrepency in the two bone age scans and he chalked it up to two different people determining the results. Either way, his bones think they are younger than they actually are, which is good.

Kyle was 5'1 1/2" and weighed 115 lbs. Two inches and twelve pounds since his June appointment. The nurses fawned over him and suggested he had been eating his Wheaties. The doctor came in and reviewed the chart and pin-pointed where Kyle was on the growth curve. He is still below the 5th percentile on height, but the direction of his progress should have him above the 5th percentile by February 2009. As far as weight, he has moved from below the 5th percentile, to around the 25th percentile. He's not chubby at all, just has more mass to him. In review, in April 2007, Kyle was 4'8" and 76 lbs. He's grown 5 1/2 inches and put on 39 lbs. I call that progress.

His doctor was so pleased with the progress, he did not increase his growth hormone dosage. Next appointment, February 2009.

Picture taken December 2008.

Insurance Coverage Continues

We received another letter from our insurance today. I knew it was time for them to review the growth hormone coverage. Every six months, they review it to see if they will continue the coverage. Luckily, they approved it for another six months!

Latest Updates

On June 5, Kyle went to his Pediatrician for his 4th testosterone shot. He was 4'11 1/2 (finally added that 1/2 inch) and weighed 99 lbs. On June 19th, Kyle had a doctors appointment with his Endocrinologist and measured in at 4'11 1/2 and 103 lbs. The doctor decided to take Kyle off the testosterone since his body was now producing the correct amount. Since Kyle's February appointment, he had only grown 1/2 inch, but had put on 13 lbs. His doctor seemed pleased with Kyle's progress and he showed me the growth curve and how Kyle was making progress towards the curve, instead of parallel with it. He was not surprised at the weight gain, due to puberty kicking in and chalked it up to muscle mass. The doctor also had a bone age x-ray done to see how old his bones are. A year ago when he had a bone age scan done, his bone age was concurrent with his real age. They would like for his bone age to be younger than his real age, which would mean his body would have additional time to grow. Since he's on the medicine to prevent the growth plates from fusing, I would assume his bone age will slow down some, buying him more growth time. We'll find all this out at his next appointment, which is not until October.

Within the last month, Kyle's voice has really gotten deeper. He's definitely turning into a man. By the time school starts in August, there will be a noticable difference in Kyle's size compared to what he was when school was out in May. He's beginning to catch up to some of his friends. He's still shorter than all of them, but at least it's not such a huge difference anymore. It won't be long now when Kyle will be as tall as me. He's getting pretty close.

On a different note, Kyle is now driving. He can see over the steering wheel now, so we felt it was time for him to take Driver's Ed. He's enjoying the whole driving experience.

Kyle driving the family home from church.

Prom Update

It was time for Kyle to go pick up his prom date. They were going to go eat dinner with some other couples. Kyle was so nervous. He had never done anything like this before, and wasn't even sure what to do. He had her flower in a box in his nervous hands. We arrived a little early so we could get some pictures of the cute couple. His date wasn't quite ready, so he had to wait outside while she finished getting her makeup on. He paced back and forth outside, trying not to sweat too much in his cute little "chocolate" colored tuxedo. She was finally ready so Kyle was allowed to come inside. He handed her the wrist corsage and with a little help from her aunts, she pinned Kyle's boutineer onto his tux. After a few pictures, they left to go eat. About 2 hours later, people began to gather at the school anxiously awaiting the promenade. Two by two, couples would pull up in their vehicle of choice and the guy would walk around and help the girl out and escort her past the crowd. Kyle and his date were riding with one of his friends, another freshman, and his date. After they pulled up and Kyle's friend had escorted his date past the crowd, Kyle got out of the vehicle and walked around to open the door for his date. She stepped out and he offered his arm and she accepted, and they walked past the crowd, occasionally pausing for pictures from various cameras. That was the outward appearance of what happened. From a mother's standpoint, I saw my son get out of the vehicle and as he began to walk around to get his date, I heard a comment from someone behind me... "He can't be a freshman! He's so little!" That was disheartening from a mother's viewpoint. Here was my son, on a very special night, learning how to act like a man, and I was caught up in it also, until I overheard the comment. Back to reality. Yes, my son is different. But he deserves a chance too, just like everyone else. Immediately, though, my eyes focused on a group of girls that are in Kyle's class and they were all squealing at how cute Kyle was. That helped. I was quickly able to get past the negative comment made by the person standing close to me, who didn't realize I was the mother. I can't blame her, though. People are automatically programmed to recognize differences. I just have to remember not to take it too personally. That's something I have to constantly remind myself. It's okay to be different.

Kyle had a doctor's appointment on May 5th for his 3rd testosterone shot. He had gained one pound since his last appointment one month ago. But he had still not grown any taller since his end of February endocrinologist appointment. Still 4'll". I know I'm supposed to be patient because this is a very slow process, but COME ON!!! We live in a society of instant gratification, yet not everything has immediate results. So as I watch my son give himself a daily growth hormone injection, swallow a daily pill which prevents his growth plates from fusing, and go to the doctor to get a monthly testosterone shot, I have to constantly remind myself, and him, that this is out of our control and we just have to be patient.

On another note, Kyle likes the outdoors. And, the outdoors likes Kyle. Especially poison ivy. Kyle is very susceptible to poison ivy. Poor guy. Takes after his mother. So after a weekend of turkey hunting, he ended up with poison ivy. Normally, this would be no big deal. Just get a prescription for some oral steroids and that'll keep the PI from spreading. Simple enough. We've done it a million times. However, if you read the fine print for growth hormone usage, oral corticosteroid use can affect growth hormone secretion and should be avoided. So, Kyle's doctor prescribed a topical cream along with some Benadryl. It's now 3 days later and thankfully, the poison ivy didn't get into his system and spread.

So for now, 3 testosterone shots down, 3 to go. I think his body is being tricked into puberty.

Junior/Senior Prom

Since my last post, Kyle has been asked to his high school's junior/senior prom. That's coming up this weekend. I took him to get fitted for a tux. We did get a double take from the lady behind the counter when I informed her we were here for a tux fitting for prom. I'm sure she was wondering why someone would be taking their little brother to prom. But, as we do with everything else, we take the looks with a grain of salt and move forward. I asked his date if she would be wearing heels that night, and she said she would not be. In that case, she will be about 4 inches taller than him. They should make a pretty cute couple and I can't wait to see Kyle in a tuxedo!

On April 3rd, Kyle had his second testosterone injection. This time, the nurse gave it to him in the arm and he wasn't sore at all. I guess nurses are better at giving shots than doctors. Since his March appointment, Kyle had not grown any taller, but had put on 5 lbs. Yes, 5 lbs. So, is Kyle growing? Why yes, he is. I am guessing he will begin to grow upward very soon. Hopefully, he will still fit into his tux!

Kyle recently turned 15 years old. Where has the time gone? They say to make sure you enjoy your kids while they are little because they grow up so fast. I guess God is just giving me a little more time to enjoy Kyle while he is little.

A Day in the Life of a Short Kid

March 2008

It's a day Kyle's been waiting for for over 2 years. He finally gets his braces off!

While we were wasting time between his two orthodontist appointments, I took Kyle to lunch with me and a bunch of my co-workers. We went around the table and each of us ordered our meal. When Kyle ordered his, the waitress asked him if he wanted the kids portion or the adult portion. Kyle said, "adult" and she scribbled it on her pad and off she went to retrieve our drinks. He and his sister usually get handed the kids menus with the crayons. This stuff doesn't seem to bother Kyle. He's so used to it.

I see Kyle as my almost 15 year old son. Others see Kyle as someone who is not even close to 15. But, such is life. Some day, Kyle, some day...

His 3rd appointment of the day was with his regular doctor for the testosterone shot. The doctor said, "Drop your drawers son, this is going in your buttocks and it's gonna hurt." Well, maybe not in those words. The day after, Kyle is limping around the house praying that no one will accidentally bump him. He's pretty sore.

Well, it's time to go remind Kyle to take his daily pill and his daily shot and his daily hug...

Kyle's spring turkey, 2008.

February Follow-up Appointment

February 2008

Kyle was measured and was now 4'11" and weighed 90 lbs. He had grown 3 inches and put on 14 pounds since April 2007. The doctor was very pleased with the fact he was growing. But at age 14 years, 10 months yet still only showing very early signs of puberty, the doctor wanted to give him a jump-start. He prescribed a monthly injection of Testosterone, to be given by Kyle's regular doctor for 6 months. Once his body recognizes the testosterone in his system, it will be tricked into producing its own. In addition, the doctor also prescribed Letrozole, a tablet to be taken once a day. (Letrozole has been shown to delay the fusing of the growth plates in adolescents. This may boost the effectiveness of growth hormone, and thus Letrozole is used to treat adolescents and children with short stature.) The doctor also increased Kyle's growth hormone dosage to 2.7 MG/day, 6 days a week.

Another Letter

We received a letter from our insurance today. I knew it was time for them to review the growth hormone coverage. Initially, it had been approved for 6 months. Luckily, they approved it for another six months!

Getting Involved in High School Sports

Kyle has always loved football. He had played for the last 6 years. But this year was different. He would be going up against men. I was sad that he wasn't going to play high school football, but was also relieved. Not only the fact that he could get crushed, but I didn't want him to be the kid that other towns made fun of for being so short.

He played baseball for several years, but decided not to pursue it once his age group joined the Babe Ruth league. He would be facing pitchers that were approaching 6 feet tall. So he chose to end his baseball career. And it had nothing to do with his HGH use!

Basketball has never been much of an interest to Kyle, unlike his little sister who lives and breaths basketball. By the way, he does have a little sister who is 2 1/2 years younger than him, and she's in the 25th percentile in height, so no worries there. She is trying very hard to catch up with Kyle in height, but I don't think she's going to get there in time.

Kyle's dad was a good wrestler. Maybe that's a sport that Kyle will want to try. True, he's never wrestled before, but at least it's a sport that he can compete against kids his own size.

Wrestling it is. Kyle started wrestling practice with the big boys and was able to find his place in the 103 weight class. True, he didn't even weigh 90 lbs, so most kids he wrestled against had 10 pounds and 10 years experience on him. But, he was part of a team and that was BIG for Kyle. And for that effort he put forth, he gained a Varsity letter as a freshman, one of only 2 boys in his class to earn that honor. Soon, we will be shopping for a letterman's jacket. Good for Kyle!

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...