About our blogger: Haveyroo
My name is Misty Fowler. I am a wife of 9 years and a mother to a 6 year old with Ganglioneuroblastoma Cancer and ROHHAD Syndrome. I work for a sport clothing apparel company. I currently work to learn more about my daughter's rare diseases and take pride in nurturing my family.
Growth Hormone Deficiency (GHD) is generally due to the pituitary gland being unable to produce sufficient GH to generate the growth process. GHD does not affect intrauterine growth, at least to an extent measurable by birth weight or length, but from the second year of life growth is slower than normal, and occasionally growth failure commences from birth. Most cases of growth hormone deficiency are idiopathic, meaning of unknown origin. Idiopathic growth hormone deficiency occurs, it seems, in about 1 in 3800 births.
We met with Haven’s Endocrine doctor on June 20th and discussed Haven’s need for growth hormone. She has stayed in the 5th percentile since Hi CY. We decided we would check the levels and see where she is. We received an email that Haven is at a level 71. A normal IGF-1 level would be around 250 or so – with a very low at an 88. Normally, a child grows about 2 inches per year. A child with growth hormone deficiency usually has a growth pattern of less than 2 inches per year. In many cases, the child grows normally until he or she is about 2 or 3 years old; then, signs of growth delay begin to show. We were told that Haven will need to grow 2 inches by December in order to not be put on the GH treatment.
Haven may have to do a stimulation test before treatment. What is this?
- GH stimulation tests help to diagnose GH deficiency and hypopituitarism. For a stimulation test, a sample of blood is drawn after 10-12 hours of fasting. Then, under close medical supervision, a person is given an intravenous solution of insulin or arginine. Blood samples are then drawn at timed intervals, and GH levels are tested in each to see if the pituitary gland was stimulated by the insulin (or arginine) to produce expected levels of GH. Other GH stimulants include clonidine and glucagon.
Treatment? Read the rest of this entry »
On June 2nd, we spent the day with a NeuroPsychologist at Kennedy Krieger Institute. KKI is an internationally recognized institution which helps children with developmental disabilities. They have a high focus on brain, spinal cord, and musculoskeletal related disorders. We have been there a couple times before but have not met with this department. This time, we were sent over to have Haven evaluated for Asperger’s Syndrome – an autism spectrum syndrome. When we first started to try to diagnose Haven in 2006, we started with this syndrome (along with Prader-Willi Syndrome), but we were told this was not her problem – it was a problem with the parents.
Asperger’s Syndrome is an autism spectrum disorder. Asperger’s Syndrome is known for significant difficulties in social interaction, along with restricted and repetitive patterns of behavior and interests. Although not required for diagnosis, physical clumsiness and atypical use of language are usually part of the disorder.
Haven worked with the doctor for over 6 hours. Read the rest of this entry »
On June 20th, we took Haven in to meet with her Endocrine doctor – he was the doctor that saved her life by finding her cancer and diagnosing her with ROHHAD Syndrome. My main concerns have been Haven’s weight to height ratio and the fact that I knew she hadn’t grown much over the past year. I had a few emails back and forth with him over the six months we hadn’t seen him.
Haven has maintained her 80 lbs since January 2009. Her Hi CY treatment for ROHHAD stopped her weight gain and her stealing of food. Immediately following Hi CY, Haven jumped up about 3 inches in height – this was a make up from the year on steroids (which stop growth) – but since that initial jump, Haven hasn’t done much.
So our main discussion with him was regarding her growth and if she is deficient. Growth Hormone Deficiency is a disorder that involves the pituitary gland, which produces growth hormone and other hormones. Growth hormone is necessary for normal growth and development in children. Haven’s last IGF-1 test was done in May while in Oncology. This came back low. Read the rest of this entry »
Haven has done an AMAZING job at her physical therapy. She goes every Monday and Wednesday for one hour. Her therapist is great with her, and Haven has grown really attached to her. Every visit, they decide what color they are going to wear next so they can match. Read the rest of this entry »
Memorial weekend we went to Gettysburg. On the way there, we stopped at Cunningham Falls State Park. We only planned to stop here for a few minutes, and we spent about 2 hours. Outside, we could see the owls and other birds.
Inside, we were able to read about the origins of the park. Read the rest of this entry »
Haven LOVES to garden! So after numerous times asking us if she can have her own garden of peppers and tomatoes, we said yes. So we built the garden and she planted the peppers, beans, onions, and tomatoes. She really wanted to plant an avocado tree, but they just don’t work in MD.
The two tee-pees in the back are the bean poles. These are growing their green beans, and the boxes contain the onions and peppers. Then she has a topsy turvy for tomatoes. Since this, she has also planted Read the rest of this entry »
After Grandma and Grandpa left, we had a day of chemo.
Haven has started to not want to see the needle to go in to her chest. She uses a 1 inch needle and her numbing cream. Since doing her Hi CY, she has begun to feel a little bit of pain. Not much, but a slight amount….so she prefers to not see it now.
However, she is still able to do her own blood work and to flush her port. Read the rest of this entry »
In May, Grandma and Grandpa came to visit from Virginia. Of course, there is always lots and lots of reading to do. Haven will read for hours non-stop.
Grandma and Grandpa set up a date for them and Haven over the weekend. They got dressed up in their best outfits… Read the rest of this entry »
Haven was so excited to get to go to her friend’s birthday party. Mia is her best friend at school. She absolutely loves Mia. This was a cool birthday though, because it celebrated Mia’s birthday and her sister Natalia’s birthday.
One of our other good friends Rachel – her birthday is next!!!
The birthday party was at a mini golf place with go-karts. Haven had so much fun running around with the girls playing mini golf.
This is Haven and Mia! Two cuties……
Miss Haven driving her first go-kart!!! She did awesome after she figured out pushing the pedal and braking! Not saying I’d let her drive my car yet, but she did well!
In January, I told the world about Heather, who after 18 years of searching, was finally diagnosed with ROHHAD after seeing Haven’s special on Mystery Diagnosis. On Friday, May 27th, Heather passed away, leaving us with a void in our hearts but strength knowing another angel is watching over all of our babies.
We are deeply saddened by the sudden passing of Heather, and I will hopefully be able to talk to her mother tomorrow via phone. I have wanted to give them grieving time.
We love you dearly, Heather, and thank you for letting us know and learn about you.