Aversions down there & re-orchipexy

[Guest guest]

Evan had visits with urology, nephrology, and endocrinology today--so the

questions I'm about to ask have a common theme...

The first has to do with an aversion Evan has developed. It seems like lots

of CHARGE kids have oral aversions, and we've worked really hard to minimize

these for Evan. Unfortunately, it appears that he has developed aversion issues

with the other end. We have been noticing for the past several months that Evan

is VERY sensitive in the diaper area. When we change him, he clamps his thighs

together making it very difficult to clean him with wipes and even wedge the new

diaper up around him. It's to the point that we usually don't use wipes for wet

diapers, only BM ones. It's next to impossible to clean him in the bath too.

Evan pouring water over his diaper area makes him squirm around and put his legs

together. We mentioned this to Evan's urologist today, and he thought it was

due to an aversion he's developed from multiple exams, catheter urine samples,

etc. This makes sense, because he doesn't ever seem like he is uncomfortable or

in pain when his diaper is on.

Unfortunately, aside from giving us a diagnosis, the urologist was not helpful

in suggestions for how to over-come this aversion. Has anyone else delt with

this? Any tips on how to help Evan get over it?

The second question I have is about a second orchipexy. Evan was born with

bilateral undescended testes. He had an orchipexy done September 2006 at 14

months old. At this time, it was discovered that he had only one testis (the

right one) and it was abnormal. The urologist brough it down as far as he could

(without breaking blood vessels). At today's exam, the urologist recommended a

second procedure to bring the testis down further, so it can be palpated more

easily. Here is where the dilemma comes in: if we leave the testis alone,

where it is, there is an increased risk of testicular cancer starting in

puberty; if we opt to have it moved down further, there is a chance that the

blood supply could be disturbed and the testis would become non-functional and

have to be removed. Unfortunately, the urologist can't tell us right now if the

testis would ever produce sperm or testosterone. Evan's endocrinologist is

considering testing the testis' (no pun intended)

ability to produce testosterone with a short course of Leutenizing Hormone

injections (this is the hormone produced by the pituitary gland that tells the

testes to make testosterone). If it can't produce testosterone, the urologist

recommended just removing it entirely. Anyone have any experience with this?

If the testis doesn't make testosterone, the decision is pretty easy to take

it out. But if it does, that's where the dilemma is. I would hate to disturb

it surgically and then have Evan lose his ability to make his own testosterone.

But, if we leave it alone, he will have to have frequent self-exams (or by us,

if he isn't able to). Plus, being closer to the body it will be warmer, and

that would pretty much eliminate sperm production for him. Although, if he has

a 50% chance of passing CHARGE to his children, he might not want to have kids

anyway... Oh, and a final factor to make the decision that much " easier " --if we

are going to do the surgery, it needs to be done before he turns 3 (after this,

he will start growing and it makes the surgery too difficult to do).

Any input on either of these issues would be greatly appreciated.

(mom to Evan, 23 months)

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