Uncharacteristically nervous for upcoming appt

[2boyzmama]

Connor sees Endocrinology next week, his first visit there. I am very...uneasy?...unprepared? for this appointment. He was referred for human growth hormone testing because his small size is a bit unusual even taking into account his syndrome and associated health issues. We have done tons of testing related to GI, nutrition, and metabolics, and have found nothing. So next step is endocrinology.

I think one of the reasons I'm uneasy about this is because I'm working on overcoming a paradigm. Initially, when I heard that growth hormone deficiencies are somewhat common in his syndrome, I brushed it off, saying that I would never supplement "just so he could be taller". But I have since learned that it's a lot more than just vertical growth, it effects bone density, internal organ development, etc. But even knowing this, I am stuck with my preconceived notion that supplementing growth hormone is not a medical necessity. I have been extremely stoic in my stance his whole life of not doing anything that wasn't absolutely medically necessary, and have butted heads with a few drs because of that.

Well now I'm finding myself in the position of realizing that there may be medical reasons to do this, yet I'm having trouble resetting my brain to that.

Gosh, I'm not pregnant anymore, yet my brain is all mush

[Linda on the move]

Originally Posted by 2boyzmama

But I have since learned that it's a lot more than just vertical growth, it effects bone density, internal organ development, etc. But even knowing this, I am stuck with my preconceived notion that supplementing growth hormone is not a medical necessity.

It's a lot to wrap your head around. You make your peace with one set of issues, and then you have to deal with a whole new set of issues and decisions. From reading your posts, it doesn't seem like there is much downtime between issues so you never really get a chance to recover.

I can see why your brain feels like mush!

Hopefully, you'll feel a lot more clear after the visit.

[anj_rn]

Deep breath.....just remember you don't have to make any decisions at that appointment, you can always ask for info to research and make a decision later. You are an awesome mommy who just wants what is best for your son. I know you can do this.

[2boyzmama]

I know...I'm getting way ahead of myself anyway. The testing for human growth hormone is kind of involved (my understanding is that it requires an overnight at the hospiital because the hormone is only excreted at night during sleep) so it could be weeks or months before we know if he is even deficient.

But it helps me to sort out the jumbled thoughts in my crazy brain if I write them out like this

So, thanks for lertting me spew my craziness here!

[anj_rn]

Heck, if I did not spew my craziness here, the little men in white coats would be coming to take me away...haahaa.....heeheee...hoho...to the funny farm....

[chiefmir]

I hope its OK to add my .02....

If there are growth hormone issues, and you decide to consider using it, I just wanted to let you know that my husband used growth hormone for about 12 (I think, I may have that wrong) years as a child (starting at about 4.5 years of age). He then started it again in his mid 20's, when more information became available about its protective effects (like the ones you mentioned) even for adults. He has had no negative issues from it at all.

Hope the appointment goes well!

[kittynurse]

Originally Posted by anj_rn

Heck, if I did not spew my craziness here, the little men in white coats would be coming to take me away...haahaa.....heeheee...hoho...to the funny farm....

Where life is beautiful all the time!

I think my pattern of spewing here is about every 2 months! LOL

I totally get what you mean about having to change your mind on something you had stood so firm on. I've had to do that a few times and it's never easy.

Martha