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Hi my name is Jamie Sorensen. I am very excited about being the IGFD spokesperson! I am looking forward to talking with, emailing and or meeting all of you and helping in anyway that I can! Our family has been dealing with IGFD for almost 6 years now, way before we even knew there was such a disorder! IGFD is a rather new diagnosis and so we are all learning together. I have so much admiration for these children affected by growth disorders. The courage and strength they show is so amazing.
We first found the MAGIC Foundation in 2004 when we were desperate for answers about our daughter Michelle. It has been a great source of support and encouragement for us and for that we are so grateful! We are all looking forward to attending the convention this July for the first time.
Michelle’s Story
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.
We affectionately referred to Michelle as out little magic trick because everywhere we went she would amaze people. Michelle was a very early talker and quite articulate. She looked like she was 6 months old and was talking like she was 3. People would get such a kick out of her.
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!
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.
 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 did not know what the futures holds. However we did know that we wanted to give our daughter every possible advantage we could. That to us is worth the little risk any treatment might involve.
Michelle started on IGF therapy in November of 2006. Unfortunately she had a bad reaction and had to be taken off after just a few weeks. She is now on Increlex. She gets a shot in the morning and a shot in the evening. We have to monitor her blood sugar through out the day. It has made her hypoglycemic once but they altered her dose and she seems to be doing better. We are very hopeful that this will finally help her catch up to the other kids her age.
Michelle is such an amazing kid! She has handled all the testing and treatments better than I could have ever imagined. I am not going to say that she likes it but she is so accepting about everything. She says this is just her special thing (she believes that God gives everyone something special). This experience has made her a very compassionate and caring person and matured her way beyond other kids her age. She is right about one thing God did make her very special!
If you are concerned about your child, or are currently going through this- feel free to Email us: ContactUs@magicfoundation.org
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