A children’s book I wrote for my daughter, which explains the daily injections process and medical life change to children with IGF-1 and growth conditions.
It’s amazing how you feel like you become an expert in the cards that life deals you. Well, no expert here, just a concerned mother of two beautiful daughters, Olivia age 8 and Ava age 5.
About 2 years ago it all started – Ava was not on the growth charts. My pregnancy with Ava was very normal, no issues at all until we noticed a delay in her growth. Although, from the age of 1½, Ava’s appetite has been extremely poor. We started the discovery process and visited a pediatric endocrinologist. I learned early on – nothing with growth hormone issues is a quick fix; it’s a long process – the body needs time to grow or time to see if the body is growing. We went through all the various blood tests, which showed low levels of GH and IGF-1. All the genetic testing came back normal. We decided to do the GH stimulation test with Clonidine/Arginine, which we heard was not as trying on little bodies. This was an extremely stressful time for all members of our family. The GH stimulation test showed low but acceptable GH levels. Throughout all the testing Ava showed consistently low IFG-1 levels. Hand x-rays show Ava’s bone age is significantly delayed, by about 2 years. We researched all the associated medical information we could find on the Internet; both the good and bad. A word of advice my doctor gave us … “if it’s too good to be true, it probably is!” Read and learn as much as you can, but realize there is a lot of shady information on the Internet. Trusted research can be found at The Magic Foundation and in medical journals. Trust your doctor and if you don’t – get another opinion. YOU ARE YOUR CHILD’S ADVOCATE, no one else. After discussions with her endocrinologist, researching and countless discussions, we decided to treat her condition with synthetic insulin-like growth factor-1 (IGF-1.) As parents, we have to do what we feel is the best for our child and every situation is different. Ava is a beautiful, feisty, smart, strong-willed little girl, and her body has a deficiency. It is not capable producing sufficient IGF-1 on its own, and we believe she deserves to grow!
Now, we had to explain to Ava about her condition and the daily shots! I spent a lot of time looking for growth hormones books and/or IGF-1 deficiencies and children’s books, that would help me explain to her what was about to happen. I already knew exactly what I would say to her, but I wanted to make it easy for her to understand. I could not find any growth related books for children. So I started researching adolescent diabetes children’s books, I thought I could just fill in with my own words when we read Ava the book. I had no luck locating any books that I liked and that would be appropriate for Ava. I was so frustrated that I decided to write a book for my daughter. It turned out to be the best gift I could have given her. My intent was to create this for my daughter; only after it was printed did I realize it could help other families. Creating the book was a coping process for me; this was reality; my daughter had a growth condition; I felt like I had to do something.
I could not control what was happening, but I could try to make it easier for her. I felt many different emotions, feelings of loss for the difficult road ahead for Ava. It is never easy when parents must make a decision like this for their children. I also knew we had to be strong and confident for Ava. The book evokes a powerful message about bravery. A dear friend and former co-worker, Don Baillargeon, who is such a talented illustrator, agreed to illustrate HELPING AVA GROW! I wrote the book, laid out the order and described to Don the messages I wanted the pictures to evoke. I’m a graphic designer not a professional writer, but it worked. It was a collaboration with Don, who is a father of two daughters. He was very concerned about our family and eager to help us. This book has helped us in so many ways. It have has helped us process our feelings, it’s helped Ava understand on her level what was happening, and it’s helped me cope with our decision.
Ava began her medication the end of October, 2010. We give her Increlex® injections twice daily. She has been on the medication for about 6 months. Ava is coping very well. The beginning was very tough. Ava is very bright and tried many ways to control the situation with her shots – tears, reasoning with us; we were guilt-ridden. We stood firm with her – not hesitant, reiterating this is what her body needs. This worked for us. We use an automatic injector when administering Ava’s shots. We can’t say enough about this product. It’s so easy and hides the needle completely. Ava has many doctors’ kits which are great in helping her cope and role play. About month ago, Ava started practicing, giving “real” shots to her babies and stuffed animals, of course, with no medicine in the syringe and always with our supervision. I know this is a first step in independence and her way of showing acceptance. One of the best days for me was right after Ava’s shot, she said, “It didn’t even hurt Mommy!” I asked her to repeat it a bunch of time for me; I love the sound of those words. She is so brave.
Nothing about this is easy! Dealing with insurance companies can be a full-time job, but we have learned that empowering ourselves with knowledge and determination and not being passive about her condition has allowed us to give Ava what she needs. When we talked about Ava’s issue with our family doctor, I asked her if she could prescribe us hypertonic saline or sodium chloride injections. This is the same product nurses use for training when learning to give injections. That way, my husband and I could practice on each other before our training with Ava. That helped us greatly – by the time we started Ava’s training, we were much more comfortable. The needles are thin and small, so it doesn’t hurt – if you don’t move. Of course, no child likes shots, but I have to say, if a child understands “why they need the shots” it does help. Ava talks about her condition and her shots at school, which is all part of healthy coping skills. Ava is very verbal about correcting people about her age. Because she is small for her age, it seems to be a topic of discussion for both children and adults. I hope her confidence continues throughout her life. We talk about her feelings and about receiving shots; she now knows they’re critical to HELPING AVA GROW!
I feel this book can help others who are going through similar issues. My reviews have been very positive, from Ava’s doctors, nurses, family, teachers and friends. It’s a sweet story, which easily explains to a child a medical life change which includes receiving daily injections, the importance of eating healthy, being brave and the meaning of family unity. The book addresses the many changes that are about to take place for Ava, and the book ends with how our love will never change for Ava. For now, I’m self-publishing HELPING AVA GROW! , it is a labor of love. As a graphic designer I’m working with a local printer – printing the books on-demand. The printing quality is professional – it looks like any other children’s book. Its 8½” square with bright encouraging illustrations.
Please feel free to post comments that may help others. Please feel free to pass www.HelpingAvaGrow.com to anyone it may benefit.
Thanks for visiting and reading, Sandy