Saturday, July 7, 2012

IGF1 results

Jerry's labs for growth hormone showed super low results.  This means that the hormone that is produced in the pituitary gland sent to the growth plates to tell the bones to grow is not being produced or not getting to right place.  I may be a little off as I am still trying to understand this all, but that is the gist of it.  The next step is another test called a stim test.  It is an awful 5 hour procedure with an IV, shots, and blood tests ( I think done through the IV).  They will give him injections of medication to see if they can stimulate his growth hormone.  If they cannot get it to reach a certain level then they will be sure he is not able to produce it.  If they do get it past the designated level then it is a bit of a mystery as to why it is not being stimulated naturally.  In either case, if they cannot find another cause, he will be prescribed growth hormone injections.  As we were going into this I was thinking maybe we don't care if Jerry will be really small and maybe we wouldn't agree to this treatment.  However, I have learned more about all of this and found out that there is a lot more to it.  This hormone is what keeps all of your organs strong and working well, keeps your immune system functioning, and gives you an appetite.  There is even evidence that this hormone can help when given to people with heart disease and failure.  There is still a lot to learn.  Jerry will also need to have an MRI of his brain to check his pituitary gland for tumor or malformation.  I am not sure how that will work out because he may need sedated and that will possibly be a risk for his heart.

Okay...so on top of all that with Jerry...Isaac showed no growth so far this year at his 7 year check up.  His last formal measurement was in September so he still has a few months.  Kids should grow 2 to 2 1/2 inches each year.  I was kind of shocked about Isaac but then when I thought about it...we really haven't changed his shoe size and he hasn't really grown out of any clothes!  I know that at the end of the summer last year he had a growth spurt because it was in Oswego and one week I could barely open the freezer door over his head but two weeks later he got clunked right in the head with the freezer door.  Sometimes the growth hormone disorders are hereditary but not always.  We will be checking on Isaac and probably start the same testing if he does not grow by September.  Also with Isaac, he has on and off complained of being tired and having stomach aches and extreme thirst when he is active.  During soccer in the fall he complained kind of a lot about feeling tired and his stomach hurting.  He told me it hurts every where from under his neck and in his belly when he is running.  I thought maybe from his asthma and also maybe like an acid reflux.  You have to understand with Isaac...it is really hard to tell with him sometimes if it is real discomfort or if he is feeling upset thinking he is not doing well at his sport.  Also, it is inconsistent.  The other night however, we were walking to fireworks and he got pretty upset saying that his chest was hurting and he was really tired of walking.  I felt his heart and it did feel like it was pounding even though he was not seeming out of breath.  I still really think he has got to be fine but will bring all this up with the doctor next week.  Jerry's heart condition does not increase the chance that Isaac will have the same thing but slightly increases the chance of family members having some other type of heart disease.  Isaac had a an EKG that was normal when he first turned 3 and the one chest x ray he had a few years ago for a cough did not show an enlarged heart.  Those are good signs but things can change.  He also has frequent headaches and said his head gets worse and he gets dizzy when he stands up.

Thanks Karen and Sue for your notes and for friends checking in with email.  It helps to know that so many thoughts and prayers are always out there for us!!

More soon....

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