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| MAGIC |
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| The MAGIC Foundation is a nonprofit organization created to provide support services for families of children with syndromes/diseases that affect growth. MAGIC offers free information/resources to parents who are concerned about their children’s height. Some of these resources have generously been made available to Way to Grow! and can be found in this section of the Way to Grow! Web site. |
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| You can visit MAGIC at www.magicfoundation.org, or call 800-3-MAGIC-3 (9 AM–4 PM CST, M-F). |
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| MAGIC Foundation’s “Quarterly Newsletter” Article |
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| IGFD Insulin Like Growth Factor 1 Deficiency (IGFD) |
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| Insulin like growth factor 1 is a hormone produced primarily in the liver, which contributes to long bone growth. A deficiency in the production of this hormone may well be responsible for many cases of previously undiagnosed short stature, commonly called ISS ( Idiopathic Short Stature). |
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| IGF Deficiency is usually diagnosed when repeated growth measurements show a child's height that is shorter than 98% of the population of the same age and sex, when the production of growth hormone on a stimulation test is within the normal range and the IGF1 in the blood is low. The classification of this new disease area gives hope to thousands of short children who had previously been denied treatment as they did not meet the criteria for growth hormone
deficiency. IGF1 blood levels can be tested on a one simple blood test taken by your pediatric endocrinologist.
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| IGFD may be treated by administering injections of IGF1. IGF1 blood levels will be monitored during therapy to ensure appropriate dosing fore maximum growth. Treatment with IGF therapy may result in hypoglycemia which can be avoided by careful timing of the injections to coincide with a meal. |
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| To read additional information or watch a webcast (online video) on this topic, go to MAGIC’s home page and click on Insulin Like Growth Factor in the left column. |
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| Carrie’s Story |
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| Our daughter Carrie was born in January 1989 - 5lbs.. 14 oz. and so sweet! At 5 mos. she was still super tiny and on vacation, after about the one hundredth person commented that she was "so cute, so tiny", we started wondering if maybe something was wrong. (Carrie weighed 12 lbs.. at a year, and at 3 and a half was the same height as my sister's 15-month old baby!) |
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| We took Carrie to the Dr. and then to a specialist in Ottawa, Canada. One test led to another and we waited and waited for a diagnosis, which finally came when Carrie was 2 and a half, in Toronto. Although Carrie's body produced IGF, it wasn't able to be used properly to stimulate growth in the bone plates. We joined a study at the Cincinnati Children's Hospital, under the care of Dr. Steven Chernausek, a pediatric endocrinologist, who was a great blessing to us. During the 10 years Carrie was taking IGF, she participated in a double-blinded study for the first 18 months, involving 3 finger pricks a day to test blood sugar results, as well as 2 shots/day in her legs. |
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| Several years into the study, the drug company announced that the medication would no longer be available, once the current drug was used up. My husband spent a day a week for a about a year, negotiating with the drug company, the Institute of Health and the FDA to finally bring about tests, and approvals that would allow future kids needing IGF to get the medication, before it was approved by the FDA. He was a real advocate for Carrie and met some wonderful and dedicated people in the process. |
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| After the onset of puberty, Carrie took Lupron for 2 years, to delay puberty and give her more time to grow. Two years ago, a drug representative from the drug company Tersica came to our house, with a producer from New York, and the camera and audio guys and interviewed our family and Carrie, to produce a news report announcing the FDA approval of the IGF medication. |
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| That was a VERY exciting day for our family. |
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| Carrie is 17 now, stands 5 feet tall, and we are so thankful for her growth. Without the IGF, she probably would have been around counter height! |
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| Along the way, we didn't know about any support groups like MAGIC Foundation, so we felt very much alone. We did learn some great faith
lessons, and patience, trusting God to provide what we needed emotionally and physically, and helping Carrie to be brave.
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| To any parents who are wondering if the effort required to figure out insurance options, hassle with 2 shots a day, doctor's visits, constant measuring etc. is worth it I would say - Go for it! When you see your child growing and able to do all the activities other kids do, it is so worth the effort. Don't give up hope - the opportunity to have IGF available to your child is a true miracle! |
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| Linda |
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| Michelle’s Story |
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| Michelle was born December 18, 2000. She was a healthy 7lbs. 8oz and 19 inches long, the perfect 50th percentile. Immediately though her percentiles started to drop and have never stopped. Her first year was filled with worry about why she was not growing. At 14 months there was no denying there was a real problem. Finding the answer though took us 4 years, countless tests and 2 different endocrinologists! |
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| Michelle was tested for Cystic Fibrosis, Turners Syndrome, Kidney disease, and numerous other disorders which all came up negative. She had been off the growth chart for over a year and a half when her first Endocrinologist suggested we do a growth hormone stimulation test. Everyone was shocked when it came back saying Michelle produced an elevated level of growth hormone. While a negative result is always a good thing in this case it was devastating for us. We wanted to help her grow so badly but we had to know what was wrong first. Our endo. basically said there was nothing more she could do. That is when we found Dr. Brown. He did the stimulation test again and found the same thing, elevated growth hormone levels. He then mentioned a diagnosis that was just becoming recognized as a disorder by itself. It was called IGF-1 deficiency. A light went on immediately. We had known since she was 14 months old that she had extremely low levels of IGF-1 but until now that was not considered a treatable disorder. |
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| Finally a name for the problem we had been dealing with; it was very freeing! We then had to talk about treatments. The FDA had just approved a medicine for IGF-1 deficient children. Like growth hormone it is given through injections. It was very scary to think about putting our daughter on something that we have little long-term information on. We weighed the benefits and risks for months. Our decision came down to quality of life. No one has died from being short but their quality of life can suffer. We do not know what the futures holds. What we do know is that we want to give our daughter every possible advantage we can. That to us is worth the little risk any treatment might involve. Michelle will hopefully be starting on the treatment within the month. We are all a little apprehensive about this but optimistic that this could be the answer to not just Michelle’s difficulty growing but other children everywhere like her. 20 years ago IGF-1 deficient patients would not have the options they have today. We are very fortunate these advances have been made. I believe it will make a difference in many lives! |
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