I am a single mother with three girls. Alexis is the youngest. She was born April 24, 2002 a normal size and started out just like any normal baby, but by the time she hit 2 years old she didn't grow as much as normal kids her age. She wore 2T clothing for about 3-4 years, 4T clothing for about 3 years, and is currently in girls size 6. She will be 13 this year and is in 7th Grade. She is 4'1" tall and weighs 50 pounds. My insurance company has an exclusion for growth hormone and therefore all costs will be out of pocket. This can be $15000 or more a year.
I decided last summer to make her an appointment to see if there was anything going on that was causing her to be so much shorter than her peers. She had her first initial appointment on December 12, 2014. Once the results started coming in it was clear there were issues. Her bone growth was at 7 yr 10 mths, her growth hormone was low, her Celiac Disease test was positive, and her Chromosome Analysis Tet came back abnormal.
From there she has had to undergo Growth Hormone Stimulation Testing, which showed that her body is not producing enough growth hormone to help her grow at the normal rate she should be. Then she underwent a Brain MRI which showed her petuitary glands were working correctly, which was the first good news we had gotten. The Endocrinologist advised that without Growth Hormone Injections she would probably not get over 4'6" tall. We started her on growth hormone injections on February 19, 2015. She does prep the needle and the injection site, but really despises getting these injections everyday. She will have to continue on this until her bones fuse, which is usually around bone age of 15 years. This could be another 8 years for her. After that they will test her and see if she needs to be on Growth Hormone injections longer due to the continual need your body has for it in everyday living.
We were advised by the Gastroenterologist that in order to get confirmation on the Celiac Analysis Test she would have to undergo an Endoscopy with biopsy. This was performed and the results came back positive and we are now starting her on a gluten free diet. Due to the possibility of Celiac Disease being genetic, the rest of the family is getting tested on March 23, 2015. This is a lifelong change and we are trying to make it as smooth as possible.
Looking at her Chromosme Analysis Test showed that one of her X chromosomes is partially deleted. There are many physical and health aspects this could affect; heart, kidney, growth, learning, puberty, hearing, and many more. She did undergo an ultrasound of the heart and kidney which showed no problems. Her hearing is also perfect. When she went for a Neuropsych evaluation it was discovered that she has ADD and Depression. We won't know if she will have any puberty issues, but at this point she has no signs of puberty. This will be monitored over the next several years. If she does not go into puberty on her own then Hormone Replacement Therapy will need to be started.
Since we started the Growth Hormone Injections, I discovered that it is an exclusion from my insurance policy. My appeal to my insurance company was denied. This can be very costly, $15,000 or more a year. She has to go in every three months for testing to make sure her Growth Hormone levels are where they need to be for her to grow at the right rate.
We have decided to also make the house gluten free. This is going to be another big expense as well, but it is important to support her through this transition in her young life so she can excede all expectations and be as healthy as possible.
Thank you for taking the time to hear my story and any support that you can provide is so greatly appreciated by me and my family.