Re: Aversions down there & re-orchipexy

June 12, 2007

,

Don't know what to say about the adversion, but can tell you our story on the

orchipexy..

had bi-lat undecended testes. They did the op when he was three.. After

three trials of HCG to try to bring them down. When they went in they found

both to be atrophied. They were able to bring one down and they had to remove

the other do to a shortened blood supply and spermatic cord. He does not

produce any testosterone and therefor is on shots monthly, and will be on them

for the rest of his life, along with Growth Hormone. He's been on GHT since he

was 10, he's now 15 and a half, started the testosterone about a year ago. He

has known his entire life that he will not be able to biologically father

children. He says he plans on finding a nice girl and adopt at least 4 LOL..

The shots are no biggy around here, he gives himself the GH nightly, I do the

testosterone as it's IM.

I can't advise you what to do, that's up to you and yours but if it has to be

done I can tell you that it is just like everything else in CHARGE, you get used

to it and it becomes routine.

Casey

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June 12, 2007

Makenna has aversions down there also. She hates for me to wash that

area. We are working on it, sometimes I let her clean it in the bath

tub and I do a really good cleaning once per week. she does exactly

the same thing, legs clamped shut and yells ow, ow, ow. It makes me

feel horrible but with a little girl you need to make sure things are

clean. I have tried a number of things, however, unsuccessful. I am

not sure where the aversion comes from, she hasn't had too many

experiences with catheters or procedures in that area.

, mom to Makenna 6

>

> 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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June 12, 2007