St. Louis Appointment

Yesterday was Sean's appointment in St. Louis with the pediatric endocrinologist. First, I will say a BIG thank you to Elaine for making the trip with us - she was a big help in entertaining Sean. Sean was such a good boy the whole day (especially for being in the car for over six hours)! Fortunately (for those of you who know), the neuropathy which landed us in labor and delivery on Thursday night, is MUCH better and I was able to go to the appointment... feeling much better!!!

For those that called and texted us, we appreciate it very much. I wasn't in much of a talking mood after the appointment, so I apologize for not calling each of you back. Unfortunately, we don't have anything much to report. We have no bad news, but we really didn't get any good news either, and telling multiple times "we don't really know anything" would have been a bit much. I'm just not up for talking about it. So lucky you all, you get to read it on our blog!

The doctor was very, very nice and really spent a good hour with us examining Sean, answering what questions she could, etc. What we did find out is that he really is too young to know anything at this point. She said they normally don't see children until they are three, unless there are clearly hormone deficiencies (i.e., dwarfism, etc.). She also stated that the IGF tests that we have been clinging to for some hope really don't mean much at this point. She did say that it is good that they are going up in numbers, but that they are not really the best indication. So most of the appointment was spent with me asking questions, and her responding, "it's just too soon to tell."

To kind of sum everything up with the visit, here's what we know:

1) She would like us to come back in 2 - 3 months for another bone age scan and IGF testing. I asked if we could do this in Champaign, but she said she really would rather it be done there. We're going to have to make it 3 - 4 months since we'll be a little busy in two months!

2) It is GOOD news that the current bone age scan shows his bones at age 1 1/2, but that he's two. If he was two with two year old bones (and was this little), then that means his bones have stopped growing for this age. But, since he's measuring six months behind, his bones are showing the potential for growth.

3) Only in very rare, severe cases of growth hormone deficiency is it hereditary, and she does not think this is the case, so Baby #2 should be good.

4) He is too young to determine his adult height - they will not be able to tell that until he is 6 - 7 years old.

5) His drop off in height started when his weight started dropping, so the two may be related. Unfortunately, there is nothing we can do but wait to see if this increases. She did say that if his height stopped but weight didn't, he would be this short, fat child - of which he is clearly not. So he is proportionate (of which we knew, but nice to hear again). So, wait we will.

6) If/when we get to the point where we have to "clinically" diagnose him with the growth hormone deficiency, he would have to go for a day of testing. They would inject him with the growth hormone and monitor his blood (to see if he responds). This is a much better way than they used to do it. Before you would have to be in the hospital overnight since you produce the hormone when you sleep - they would have an IV and draw blood several times throughout the night to test the levels.

7) His head is the only thing measuring "normal" as far as a two year old (50th percentile), so according to her, he's has a toddler head on a baby's body. Yeah, that was lovely to hear.

8) The only real health risk associated with growth hormone deficiency left untreated is that Sean would be at risk for osteoporosis. But if he is deficient, we have already decided we would do the injections. Also, it can make recovering from surgery difficult, but we know he's just fine there!

9) The growth hormone in produced in the pituitary gland (which is located at the base of your brain) helps control Growth, blood pressure, sex organ functions in both women and men, thyroid gland function, the conversion of food into energy (metabolism) and water and osmolarity regulation in the body. Fortunately, these areas of the gland seem to be doing there job, so our only concern would be the growth aspect.

Of course she commented on how sweet and kind he was (of which he truly was a doll all day). And of course how handsome. That is ALWAYS nice to hear! :-)

Needless to say, there wasn't much we learned, nor did we get many questions answered that weren't "it's just too soon to tell". After four months of building this up in my head that we would have some kind of answers, I was very let down and quite disappointed. I know things could be SO much worse, and I appreciate people trying to find the silver lining, but right now I'm just frustrated. So now, praying for patience... (and growth).