|
Introduction to Insulin-like Growth Factor Deficiency (IGF-1)
The process of growth is complicated. Insulin-like Growth Factor Deficiency also called IGFD or IGF-1 is a relatively new discovery. There are many links in the chain (so to speak) which must all work correctly and work together before healthy growth can happen. If there is a kink in the process anywhere at all the growth process may be halted or disrupted so that growth is occuring but at a less than normal rate. This new discovery about Insulin-like Growth Factors is extremely helpful to families who have been previously told that their child's growth hormone levels were normal because children with low IGF-1 usually do not respond well to growth hormone therapy-they need IGFD therapy. Information on this incredible discovery of the Insulin-like Growth Factor is expanding to non-specializing physicians. We encourage you to learn as much as you can. (To view our online video/ webcast explaining this topic-click here). You are your child's best advocate!
 Hi! My name is Jamie S.
Welcome to the
Insulin-like Growth Factor / Growth Hormone Division for The MAGIC Foundation
On this page you will find-
- A description of Insulin-like Growth Factor Deficiency more commonly referred to as (IGF-1 or IGFD) written for parents by medical professionals
- A link to a personal story about my child with Insulin-like Growth Factor Deficiency - you are not alone!
- Links to medical information/additional articles which are helpful to parents of Insulin-like Growth Factor Deficiency children
- More resources can be found below the medical article and via the links on the sides of this page
- A Glossary of Terms (to your left) helps you understand difficult medical terms
If you need help, or want to speak to a parent of a child with Insulin-like Growth Factor Deficiency contact us at (708) 383-0808 or here online.
Insulin-like Growth Factor Deciciency
A child’s growth is one of the best indications of good health. Physicians frequently track a child’s growth to see that he or she is developing with a normal growth pattern. The normal growth curve falls between the 3rd and the 97th percentile of all children. However, children who are shorter than 97.5 percent of their peers of the same age and sex can be described as having short stature.
There are many reasons that can lead to a child having short stature, including poor nutrition, family history and constitutional growth delay, where growth is experienced later than his or her peers. Underlying medical conditions such as chromosomal defects, kidney, lung, heart or gastrointestinal disease can also cause growth failure. These short stature children may also have low levels of hormones that are associated with normal growth. For example, having low levels of pituitary growth hormone causes growth failure. This hormonal deficiency in growth hormone can lead to low levels of insulin-like growth factor-1, or IGF-1, a hormone made primarily in the liver that determines much of the growth-promoting effects of growth hormone.
Some children, however, experience poor growth despite possessing normal or even higher amounts of growth hormone. Because the underlying cause of this short stature is not understood, such children are sometimes given a diagnosis of idiopathic short stature or ISS. However, some ISS children have been found to have low levels of IGF-1 despite having normal to high growth hormone. These children are now described as having a newly identified endocrine condition called Primary Insulin-like Growth Factor Deficiency, or Primary IGFD, a term that describes lower levels of IGF-1, that directly explains the poor growth.
The diagnosis of Primary Insulin-like Growth Factor Deficiency (IGFD) is made by identifying a growth or short stature problem by ruling out other underlying diseases or causes of poor growth and eliminating the possibility of growth hormone deficiency while measuring low levels of IGF-1 in the blood. When all of these conditions are met, a doctor may diagnose the condition as Primary Insulin-like Growth Factor Deficiency. Primary IGFD may be divided into moderate and severe forms based on how low the IGF-1 levels are relative to other children of the same age as well as the degree of short stature.
Primary IGFD/ Insulin-like Growth Factor Deficiency can now be treated with hormone products recently approved by the Food and Drug Administration that have proven effective in this new diagnosis, safely leading to improvements in children’s growth and in adult stature. Doctors can perform additional tests including treatment trials to determine which treatment is best for any particular child.
Contributed By:
Dr. Pinchas Cohen
Professor & Chief, Division of Endocrinology
Department of Pediatrics, Mattell Children's Hospital
UCLA, Los Angeles, California
Medical News: "IGF-1 has proven to be the most critical factor in the growth of children," states Dr. Ron Rosenfeld. Our online video webcast features Dr.Kurt Midyett who states, "Growth hormone stimulates the production of IGF-1. It is IGF-1 that directly causes tissues, such as bone, to grow...to view this video click here.
To view the Questions and Answers submitted via the webcast on this topic, click here.
Questions & Answers from MAGIC
Families have been calling our Foundation regarding this because it affects their children. Therefore, we have put together a list of the more commonly asked questions and answers to help you understand this issue. If you have additional questions, please call our office at (708) 383-0808.
Question 1: Should i keep using my current supply of IPLEX™?
Answer:Yes, you should continue to take IPLEX™ until you are able to talk with your Pediatric Endocrinologist about switching to an alternative product.
Question 2: Was there a problem with the IPLEX™ drug?
Answer: We are not aware of any problems reported with IPLEX™, this product withdrawal is due solely to a patent issue (see statement from Tercica)
Question 3: Is there another IGF treatment available?
Answer: Yes, there is an alternative therapy available in the
USA
called Increlex™
Question 4: Is Increlex™ identical to IPLEX™?
Answer: No, the products are not identical but are essentially similar, your Dr will advise you about the change in product and provide information about the risks and benefits of treatment.
Question 5: Is Increlex™ administered in the same way as IPLEX™?
Answer: No there are differences in the dosing and administration; your Dr’s office will help you with the change in administration.
Question 6: Will I need to get new insurance coverage for the change in product?
Answer: It is very likely that you will need a new prior authorization in order to get the INCRELEX™. Your Doctors office will work with the drug company to get you transferred to the new therapy as soon as possible.
For information on IGF testing we found this site very helpful and easy to understand-Labtests Online.
|
ADDITIONAL Pages commonly requested by parents:
|
LEGAL NOTE: This Insulin-like Growth Factor Deficiency article was prepared specifically for The MAGIC Foundation. Any type of reproduction is strictly prohibited pending the foundation and author's written authorization. Privacy and enforcement of our authors, families and materials is taken very seriously. Failure to comply with the legal posting of this notice, will be met with legal action.
Remember, MAGIC is made up of parents of affected children. If you need to speak to someone about Insulin-like Growth Factor Deficiency or related issues, feel free to call us (9-4 Central time) or email us anytime!
|
