Does anyone on here have a child diagnosed with severe primary IGFD? or know of anyone or yourself? Not sure if you can be diagnosed with this at a later age, because it isn't treatable after the growth plates have closed... apparently this is rare, and given the fact google turns up little info says that... would really like to hear from someone who has any experience with this...
Just to clarify your abbreviation-is this an immune growth factor deficiency? If so, I believe treatment can be given to people regardless of age to treat the other factors that GHD causes besides general height attainment. If the bones are closed, obviously the person wouldn't get taller with treatment, but mental functioning, appetite and overall sense of wellness might improve. I would check into your local medical resources for rare hormonal deficiencies, perhaps through your local university health system, or look for this topic in the rare disorders organization that connects patients with resources for rare disorders.
Sorry, its Severe Primary Insulin-like Growth Factor Deficiency, this is different than growth hormone deficiency (GHD). This is the hormone IGF-1. Its tested via a blood sample and would be part of the testing for growth hormone. However, my daughter has sufficent growth hormone but has failed this hormone test everytime. So her diagnosis may be this. We are testing one more time... although we have gone to this endo every 6 months for about 3 years and she only barely passed this hormone level one time. So I will know for sure within 2 weeks. The treatment is like the GHB, its a daily injection.
Thank you for the rare disorder information. I will look into that when I hear from her Endo Dr. Apparently, if in fact she fails this one hormone again, he will diagnose and she will be one of only 5-10 children that the Birmingham Children's Hospital treats with this disorder. So I am trying to get a personal perspective.
I just wanted you to know that a girlfriend of mine has a daughter who has the same condition. She has been taking the injections for over 3 years now and is doing very well. She utilizes the childrens hospital in Philadelphia for this.
I believe that will be your best bet- continue to dialogue with Children's Hospital, and let them work their magic...they really do incredible things for kids.
Im sorry you are going through this with your own health issues...Ill say a prayer that your daughter will be okay...and that you have the strength to deal with all this! Dont let it start affecting your own health, ok?
We are here for you.
RRMS- dx 05
Last edited by Administrator; 01-30-2013 at 07:14 PM.
The Following User Says Thank You to MSNik For This Useful Post: raden (01-31-2013)