# hi - new here - question



## kondonis (Dec 29, 2005)

hi everyone -

I found you guys by referral when I posted a question on another chat board about some issues I am having with my son. he was a 24 week preemie and we had decided before he was born not to have him circumsized. he is now 10 months actual/ 6 months adjusted. we are very happy with this decision and felt it was the right thing to do. here's the problem....

when ds has to pee, sometimes he gets a huge bulge from the base of his groin to the tip of his penis and gets such that sometimes it seems like he can't pee. it's not classical ballooning where it is the tip of the penis, but the whole penis from the base up so that it looks like a pyramid. it gets very red and purple when it is this big and I am worried about it. when he had his hernia surgery, I thought it would correct it, but it didn't. his surgeon said he'd seen it before and might have to circumsize if it didn't get better.

is this familiar to anyone? I am taking him to a pediatric urologist hopefully next week to talk about, but would like to be armed with info.

thanks in advance!








Stella


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## Frankly Speaking (May 24, 2002)

This is a new one on me and that doesn't happen often. As a matter of fact, almost never! Did the doctor give a name to this condition? Did he describe what is happening to cause this? Did he describe the surgery to correct it? Maybe if I can get just a little more information I can help you but right now, I'm at a loss. It does initially sound like foreskin ballooning but with a twist.

Without further information, I can't see how a circumcision could help the problem as the problem doesn't appear to be with the foreskin but with the skin on the shaft of the penis.

Frank


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## kondonis (Dec 29, 2005)

i know, I don't get it. the weird thing is that is it inconsistant - it doesn't happen all the time and when he does pee, it is a consistant stream. We're going to take a photo of it for when we go to the ped. urologist just in case it's not there when he examines it. when I find out, i will post again.

i even did google searches but found nothing!

Stella


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## Dave2GA (Jul 31, 2005)

I believe this has been described in the literature as congenital megaprepuce. I will see if I can find a citation for you. I think I have an article on this that I can share if you will send me your address.


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## Dave2GA (Jul 31, 2005)

The article that seems to describe this condition is Summerton, D.J., et al., "Congenital megaprepuce: an emerging condition - how to recognize and treat it," BJU International (2000), 86, 519-522. However, there may be other ways to treat this condition without surgery, including the use of betamethasone cream.


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## Frankly Speaking (May 24, 2002)

Here's the article that Dave cited:

http://www.blackwell-synergy.com/doi...megaprepuce%29

Read the description and look at the pictures. Does this look or sound like your son?

Frank


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## kondonis (Dec 29, 2005)

thanks for finding this for me - this sounds exactly like my son - but the pictures are a lot scarier than what it looks like on him. like I said, it doesn't happen all the time, but it does happen - and it is only in the last month or so that its presented itself. we do have to help him pee sometimes, but not all the time.

can this really be corrected without surgery? I read the description of the surgery and it sounds absolutely horrible - with drains and shunts and the end result looking like a circumsized penis. it also sounds relatively new - I did a google search and could only find articles from UK medical sources, not american. I don't want my son experimented on and possible have a deformed penis becasue of this.

what I didn't find is what happens if this is not surgically corrected.

this is so horrible, I am so depressed about this.


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## Frankly Speaking (May 24, 2002)

Quote:


Originally Posted by *kondonis*
it also sounds relatively new - I did a google search and could only find articles from UK medical sources, not american. (

That was something that surprised me too. I had heard of megaprepuce before referring to an abnormally long foreskin but not this. They call this congenital megaprepuce while the long foreskin is called secondary megaprepuce. The thing that really surprised me was that the first case ever was reported in 1994 and that this hospital performs all of the surgeries for this all over the country and maybe for many areas of the world. It makes me wonder if the congenital version has a cause rooted in the environment and something that has been recently introduced into the environment.

I think it would be a good idea to contact the authors of this article via e-mail to get ideas. They may be able to suggest non-surgical solutions or if nothing else, a urologist in the US who has some expertise with this condition. Obviously because of the rarity of the condition, you need to become very educated about the condition and the treatment to evaluate any professional advice you recieve. American doctors have a propensity to shoot from the hip without taking the time to do the appropriate research. It will be your job to hold their feet to the fire.

Frank


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## baybee (Jan 24, 2005)

Hi Stella, Do you know there is a group called Doctors Opposing Circumcision?
They are about the most helpful people around. I sent your inquiry on to them for an opinion. Of course they recommended that a urologist be seeing your son. The question my contact there would like to know is "Did your son have a catheter when he was going through preemie care?" If there was a puncture that is causing urine to leak at the base, that won't be helped by circumcision. You could write to them directly yourself or, if you reply here, I'll pass it back to them. It is an unusual problem.
Baybee


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## kondonis (Dec 29, 2005)

hi baybee,

william did have a catheter for all 6 of his surgeries. however, he did not have this problem in the NICU. in fact, I've only noticed this in the last two months or so since he's been home. he recently had hernia surgery and was so swollen he could not pee and had to be catheritized to relieve himself. once the swelling from the hernia surgery went away, he was able to pee fine. even now, when he swells, he can still pee, it doesn't seem to affect it too often.

if he really was punctured at some point - how does one fix that? everything I have read on the subject tells me that circ is NOT the answer, and infact will make it worse.

we have an appt with Dr. James Betts at Childrens Hospital Oakland (ped. surgeon in urology) on the 11th and I trust him. While we were in the NICU he operated on a baby boy next to William who had major urological issues and the boy is doing great now. Hopefully, he will know what this is and what to do.

the last thing my dh and I want is to have any kind of surgery on William again, esp. his penis - and hope that this is something we can resolve more conservatively.


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## Frankly Speaking (May 24, 2002)

Just as a suggestion, I would recommend sending Dr. Betts a link to Dr. Summerton's article ahead of time so that he can research it. It's very likely that since this is such a rare thing that he's never heard of it. That is especially so when it has only been known since 1994. Many doctors tend to shoot from the hip when they aren't familiar with something or experienced with it. I think it is probably an expected action to preserve their status of the expert and professional. They just need to realize that they can be an expert in their field and not know everything and to shoot from the hip is very unprofessional.

By bringing this to his attention early, he will be able to get up to speed before you arrive and his ego will remain intact.

Frank


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## baybee (Jan 24, 2005)

I passed your message on to DOC and will post what they reply. One thing to remember is that in Ayurvedic medicine they use urine to treat wounds. Fresh urine can be a very healing substance. some yogis even drink their own.
So, if your son isn't having difficulties and doesn't have this all the time, it may be healing on its own and work out without surgery. I'm praying for that, this child has been through a lot.
Baybee


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## baybee (Jan 24, 2005)

from DOC:

This mother should be
sure to tell the pediatric urologist about his history of catherization.

I don't really know exactly where the injury is or much about it so I don't
know how it is to be repaired, but I don't see how it can be fixed without
some kind of surgical operation. The doctor's examination, tests, and
perhaps a scan will reveal more information. When that is completed, a
treatment can be worked out.

I am sure the pediatric urologist is much better equipped to explain these
things than we are.

I certainly don't want little William to have to undergo surgery, but it may
be necessary if he was injured during his previous operation for hernia and
the last thing I want him to have is a circumcision.

There may also be some medico-legal issues involved here if he was injured.


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## kondonis (Dec 29, 2005)

ok, for the last few days William has not shown any swelling! he did have some about 4 days ago, but promptly peed on me once I opened his diaper to look









anyway, it is in my personality to worry about him, especially after all he's been through, and now I am wondering a few more things if you a could help me out -

william is about 6 months old (adjusted for prematurity). While William was in the NICU, I often saw other baby boys, not all premature, but it always seemed to me that their penis was significantly more pronounced than william's. No one ever said anything to me about it (dr.s or nurses - I asked!) so I stopped thinking about it.

But, having done all this research, I am starting to wonder if William also has a semi burried penis - I know, crazy - but he does have a lot of fat on his groin.

so, rambling on, here's my question - how big or small is normal for a baby? I tried searching to see if there were any medical photos I could compare with, but none were found. quite frankly, I can't tell what is foreskin and what is penis.

sorry if this is weird. I just want to be prepared with all my concerns for our appt on the 11th.

hope you all had a happy new year! Stella


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## baybee (Jan 24, 2005)

Hi Stella, it's normal to be hyper worried about your first child esp if they were premature. My daughter was a big, healthy full term baby and I was such a lunatic worrying about her that the pediatrician said he was going to hospitalize her to give her a "rest" from me!! He didn't mean it but it was good for me to get the feedback that I was nuts.

I think there's also something about the miracle of having a baby that you can't really get it that you deserve to have them live. Anyway, I think the important thing is to ask yourself "What action will I take if there IS a problem?" If his penis IS buried (which I'm sure it isn't), there's nothing to do about it anyway. I notice that there's a really big difference in sizes of newborn penises and, as long as the baby pees, they all seem to work out.
Start comparing the size of your baby's nose to other babies of the same age and you'll see how many varieties there are.

Cut yourself some slack---you're a great Mom.


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## kondonis (Dec 29, 2005)

thanks baybee









you know, I guess I am just worried because he's had such a hard begining, that I don;t want him to have any issues from here on out. I am terrified of something so important for him functionally and sexually having a problem. he is such a sweet funny little boy - my heart just breaks thinking about it.

but I guess my question still stands though - how do you tell the difference between the foreskin and the actual penis?


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## zaftigmama (Feb 13, 2004)

Do you mean at the base of his penis, or at the tip of his penis? My son has a short foreskin and my family (who are so freaked out at the thought that he even has a foreskin) always ask questions about it - Is that the end of his penis or just extra skin? How can I tell? Etc.,. The foreskin covers his whole penis, and at the base it's all connected where his penis meets his body. But there's a pretty, I don't know the word, obvious, or marked point where the penis shaft meets his groin. I'm guessing with your son there isn't - which is why you may be wondering if it's buried? Or semi-buried?

One of my nephews was a huge, roly-poly kid and my sister used to call him the boy with the diappearing penis. It was very hard to see it, and almost impossible to determine where the base of it was. But her ped. told her it was just because he was so fat, and sure enough it got more and more pronounced when he started walking around and losing all that gorgeous babyfat. If your dr. hasn't said William's penis is buried, it's most likely not.

Of course you're worried about your son, and I'm sure the thought of surgery is sending you over the edge. My daughter was in the NICU for 8 days and had a very scary beginning. I was completely traumatized by those 8 days, I didn't really realize it. I met two other moms whose kids were also in the NICU, and we used to talk and talk and talk about those days. It was like the best kind of therapy - I finally got over it. People who didn't have kids in the NICU used to say, "Oh she's fine now, get over it." and I just couldn't. There is always that feeling of, "After all she went through in her first week, she should never have to go through anything scary again." Which of course means me, as well my daughter.

Good luck with the appointment on the 11th. Definitely keep us updated. I'm glad someone here found an article that is relevant and may help you out. This board is a wonderful place!!

Take care!


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## daekini (Jun 17, 2004)

I just wanted to send good thoughts your way. I know how crazy I was about my babies and I'm sure you're under a lot of stress. It's wonderful that you're doing this research and that you are taking the responsibility of being an advocate for your son, who can't do this for himself. It may seem like a heavy burden but it will pay off!

Best of luck,
Alison


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## Frankly Speaking (May 24, 2002)

Buried penis is a complication of circumcision so it's something you don't need to worry about. Some boys will have a penis that is held closely to the body and others will have a penis that hangs loosely away from the body. Both are within the range of normal and it sounds like your son has one of those that are held closely. As he gets older, this will become less noticeable as the penis grows and the fat on the pubic mound becomes less. When he has an erection, he will reach his full erectile potential regardless of the size when flaccid.

Frank


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## baybee (Jan 24, 2005)

Hey Stella, My sister always used to say to me when I was obsessing about my baby "The baby always survives, but sometimes the mother doesn't". Look after and love yourself and the baby issues will work out fine.
Baybee


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## kondonis (Dec 29, 2005)

Quote:


Originally Posted by *Frankly Speaking*
Buried penis is a complication of circumcision so it's something you don't need to worry about. Some boys will have a penis that is held closely to the body and others will have a penis that hangs loosely away from the body. Both are within the range of normal and it sounds like your son has one of those that are held closely. As he gets older, this will become less noticeable as the penis grows and the fat on the pubic mound becomes less. When he has an erection, he will reach his full erectile potential regardless of the size when flaccid.

Frank

whew. thanks frank. that is such a relief to hear.

you'd think after figuring out how to have a baby i'd know something about penises. nope!

i will keep you all updated once we have our appt.

thank you again for the support! it is so incredible to have a resource like this!
Stella


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## kondonis (Dec 29, 2005)

Hi everyone,

I just got back from our visit with Dr. Betts at Children's hospital Oakland. He is great! The first thing he told me is "I know that William is uncircumsized and I want you to know that I am against circumcision". How great is that???? Then, he looked at the photos I took (to ensure that he would see what we saw even if it didn't present itself right then) and then looked at William. He took off his diaper, examined his penis WITHOUT RETRACTION, and said - William has phimosis. he does NOT have congenital megaprepuce. Congential megaprepuce is when the skin does not move at all, his does. What is causing the swelling is trapped urine in the foreskin. Here is a prescription for betamethazone cream. Lets use that for a month and see if it will losen his foreskin at all. If it doesn't I am concerned about balantitis (sp?) and that is much worse if his penis or glans gets infected. if this doesn't resolve, we should talk about a dorsal slit which should losen up the foreskin without circumsision.

I asked him if this was more common since William was a preemie and he said no, its because William is William. I also asked if William's penis was normal size and he said yes, his penis is normal size, you don't have to worry about that.

I am very happy with this visit. I am going to cancel the other urologist appt I have and stay with Dr. Betts.


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## calngavinsmom (Feb 19, 2003)

Hmmmmmmmmm, I don't know. Based on what this doc is telling you now, it sounds like normal ballooning to me. Unfortunately, the doc is not altogether right in his diagnosis either. It is impossible to diagnose phimosis in a baby as young as yours. It is perfectly normal for a baby to have a small foreskin opening and to balloon when he pees. Mine does(my ds2 anyway) and we were assured by a couple of docs that he is perfectly normal. Our first ds didn't start to balloon until he was around three so we were concerned when we saw it in our baby almost from birth. Neither of them has ever had an infection or "balanitis" and noone has ever suggested a surgery or even a cream to correct this condition, because it really isn't a condition, it is normal development.

Here is some info on this for you:
http://www.cirp.org/library/normal/
http://www.cirp.org/library/normal/aap/
http://www.mothering.com/articles/ne...uncircson.html

I hope this is helpful to you.
Take care,
Tara


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## MCatLvrMom2A&X (Nov 18, 2004)

the phimosis ? again







I have read here many times that it is impossible to diagnose phimosis in a infant because almost all have a non retractible forskin and that is what the term phemosis means. I guess in this case the dr is saying that the opening is super tiny?? Have you ever seen him pee what does the urine stream look like. Kinda thick or is it just a tiny jet like pin size? Maybe frank will come back in and shed some light on what I am missing here.


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## kondonis (Dec 29, 2005)

Hi Tara,

What William has is not normal ballooning. the dr said everything you did too - about what is "normal" in boys and it being normal not to retract. Unfortunatly, William is not presenting as ballooning. if you read my original post, you will see that he has major swelling to the point he cannot pee sometimes. is this what your boys experienced as well?


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## calngavinsmom (Feb 19, 2003)

No I guess I forgot the detail about not being able to pee. My younger ds has had urine trapped under his foreskin for a while, like from one diaper change to the next, but we have never had to force it to come out. It just went away between diaper changes(maybe 2 hrs). I guess what I am not understanding is what is abnormal about William. What is the doc saying will cause these infections? Urine is sterile until it is exposed to the air, so is he concerned that something is getting into the foreskin to contaminate the space between the foreskin and the glans? If that is the case, how would making his foreskin opening larger remedy that? I guess I am just concerned because it has been seen quite often here that docs suggest manipulating a babys foreskin without real need which leads to more problems than solutions.

I am glad that you are happy about what this doc had to say though







At least he is not one of those who brought out the scalple on the first visit.

Good luck to you guys!
Tara


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## pdx.mothernurture (May 27, 2004)

I found this,

http://www.ncbi.nlm.nih.gov/entrez/q...&dopt=Abstract

"Two infant boys presented with a tight congenital phimosis resulting in an excessively baggy, urine-filled prepuce and a swollen scrotum. Compression of the scrotum resulted in drainage of urine."

http://www.ncbi.nlm.nih.gov/entrez/q...&dopt=Abstract

"CM is a striking condition which cannot be easily missed or hidden; we propose that it is a newly emerging and distinct condition which should not be confused with a buried, concealed, webbed, trapped or micropenis. Early surgical correction is recommended and circumcision should be avoided."

Also:

http://www.blackwell-synergy.com/doi...x.2001.0003c.x (Contains some pictures.)

HTHs,

Jen

Edited:

Sorry, I didn't see the update when I posted this. Regarding phimosis-is there any chance he was forcibly retracted in the NICU or during catheterizations? It sounds like he had a lot going on. If he had a lot of trauma to his penis during that time, it's *possible* he could have true phimosis. But if he wasn't forcibly retracted and hasn't had any infections I would take the doctor's 'diagnosis' with a grain of salt. It's totally normal for an infant to have a tight foreskin, and retraction doesn't 'need' to happen anytime before puberty. I'd suggest a second opinion, perhaps D.O.C. or NOCIRC could provide a referral to a truly foreskin friendly and knowledgable physician. I wouldn't use the cream unless you are confident he really has phimosis. There's no reason a 10 month old *needs* to be retractable.

Jen


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## Frankly Speaking (May 24, 2002)

I think I'm begining to get a better picture of what the situation is now.

Quote:


Originally Posted by *kondonis*
He took off his diaper, examined his penis WITHOUT RETRACTION, and said - William has phimosis.

Of course he does! That's the normal condition for a baby this young. But, that is not a reason for concern, just an indication that William is normal.

Quote:

he does NOT have congenital megaprepuce. Congential megaprepuce is when the skin does not move at all, his does.
That's good! At least that is ruled out and that gives me a little bit more information.

Quote:

What is causing the swelling is trapped urine in the foreskin. Here is a prescription for betamethazone cream. Lets use that for a month and see if it will losen his foreskin at all.
Now, this is where we begin to disagree. Yes, I imagine he is right that it is urine trapped in the foreskin but that is not a cause for concern. The lay term for this is "Ballooning" and it is common for boys as they near the time for the foreskin to retract. Since the process has already begun, let's let it progress as William's body dictates instead of forceing Williams body to do what we think it should do.

The thing that initially threw David and me was when you described William's penis as "pyramidal" in your first post. What I imagine is really happening is that William's penis is held closely to his body when flaccid with most of the shaft held in the pubic mound. It also seems that William's foreskin is completely or mostly released from his glans so that when his foreskin fills with urine, it is filled all of the way down to the base of his glans and with the closely held penis, it looks pyramidal because the base of the glans is at the pubic mound.

Quote:

If it doesn't I am concerned about balantitis (sp?) and that is much worse if his penis or glans gets infected.
We've had many, many Moms here describe ballooning and never an infection. Urine is sterile except when there is a UTI, so I see no need to worry.

Quote:

if this doesn't resolve, we should talk about a dorsal slit which should losen up the foreskin without circumsision.
I also disagree with this. First, it is highly unlikely and if on the remote chance it does happen, you cure it with antibiotics, not surgery. What the doctor is talking about is cutting the foreskin opening. If a daughter had a vaginal infection, would you allow a doctor to cut her vaginal opening? Certainly not! This would leave her with a vaginal opening that just hung open and would have no tightness at all. It will do the same thing for a boy. He will end up with a foreskin that just hangs open instead of tightly hugging the glans. This is simply the incompetence of the doctor showing.

Quote:

I asked him if this was more common since William was a preemie and he said no, its because William is William. I also asked if William's penis was normal size and he said yes, his penis is normal size, you don't have to worry about that.

I am very happy with this visit. I am going to cancel the other urologist appt I have and stay with Dr. Betts.
Actually, in contrast to what I wrote above, I agree with that. It appears that Dr. Betts is on board with you and I can imagine you can provide him with the information he needs and he will accept it and trust your instinct. I think he might be a diamond in the rough but a diamond never the less and diamonds can be polished.

Frank


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## pdx.mothernurture (May 27, 2004)

Frank, didn't someone (maybe it was you?) post a link here awhile back that showed pictures of the dorsal slit surgery on a child? I had no idea how it was done, and it was really eye opening. I think most of us think of a dorsal slit as a little snip with a scissors, but this link explained it as a triangular piece of foreskin being removed. I wish I'd saved the link.

Jen


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## Frankly Speaking (May 24, 2002)

It wasn't me but I do remember it. There are differing degrees of this though from just a slight cut through the ridged band/frenar band/preputial sphincter to what is termed a "dorsal slit circumcision" where the foreskin is split to the base of the glans. This produces a very unsightly mess. While it does not remove any of the foreskin and preserves the frenulum, it leaves the entire foreskin hanging from the underside of the penis. It looks like some kind of baggy growth hanging from the penis. Fortunately, it is rarely performed.

Frank


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## kondonis (Dec 29, 2005)

Quote:


Originally Posted by *Frankly Speaking*

Now, this is where we begin to disagree. Yes, I imagine he is right that it is urine trapped in the foreskin but that is not a cause for concern. The lay term for this is "Ballooning" and it is common for boys as they near the time for the foreskin to retract. Since the process has already begun, let's let it progress as William's body dictates instead of forceing Williams body to do what we think it should do.

The thing that initially threw David and me was when you described William's penis as "pyramidal" in your first post. What I imagine is really happening is that William's penis is held closely to his body when flaccid with most of the shaft held in the pubic mound. It also seems that William's foreskin is completely or mostly released from his glans so that when his foreskin fills with urine, it is filled all of the way down to the base of his glans and with the closely held penis, it looks pyramidal because the base of the glans is at the pubic mound.

Frank


Frank - what you say above sounds more like William - but won't the cream help resolve the ballooning? what could it hurt?


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## Kathryn (Oct 19, 2004)

If there is nothing wrong (which sounds like there's not), why would you WANT to do anything? Steriods are not something to be casually messing around with, they can cause issues if not needed (and even when needed).

ETA: Also, why would you want to use a steriod cream to speed up a natural process that takes as long as it does on purpose? If you get your son to be retractable now, he will be getting the inside of his foreskin, his glans, and urethra all exposed to feces and urine on a daily basis. The foreskin is adhered to the glans to protect it from that stuff. Don't mess with nature.


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## Frankly Speaking (May 24, 2002)

Quote:


Originally Posted by *kondonis*
Frank - what you say above sounds more like William - but won't the cream help resolve the ballooning? what could it hurt?

Well, yes, maybe, but would you think it a good idea to help a newborn puppy or kitten get their eyes open or should you just let nature take it's course?

Ballooning is a natural condition that happens according to the boy's preprogrammed instructions. For retraction to happen, two things must happen. The foreskin has to separate from the glans and the non-elastic tissue around the foreskin opening has to be replaced with elastic tissue by the boy's body. Those two things can happen in either order. If you force either one, you can cause damage. If you force the opening, you can cause tears in the structure and in the skin surface. The tears in the surface can make openings for infection. Tearing the structure can cause acquired or pathological phimosis that will make retraction later difficult or impossible. Just like the puppy's or kitten's eyes the foreskin is tight for a reason and just like the eyes, the foreskin will open according to nature's instructions and on it's own schedule. Just be patient.

Frank


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## baybee (Jan 24, 2005)

Listening to the NOCIRC tape of John Taylor, M.D. the other night was very interesting. He said that there are cells that are like spirals that whirl to create the preputial space. So, it's not really that the foreskin separates from the glans, it's that the body forms a space between the foreskin and the glans and that can take up to 17 years to complete forming. The human body is sure amazing. We think it's amazing that women can grow and give birth to a baby---men can form spaces! Wow.
Baybee


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## kondonis (Dec 29, 2005)

just a quick update....

I weighed all the information I was given and I decided that I would go ahead with the betamethasone cream. I have given it to him every other night or so (to prevent irratation) and i have noticed in all that time that not once has he had the painful swelling that I wrote about in the OP.

It was important for me to be able to take away the pain and obvious discomfort that this swelling was causing him. Whether or not this condition is normal, it doesn't happen to most kids like it was happening to William and I HAD to do something about it - I could not just sit there while he cried because he couldnt pee and his skin was turning purple.

that being said, the betamethasone has loosened him up so he now can pee like a normal intact boy - which was my goal. I only wanted it loosened to be able to pee normally, so I am using the betamethasone cream very sparingly, so it only opens JUST enough, not all the way.

He will NOT be circumsized for this - no dorsal slit either. I have yet to make a follow up appt with Dr. Betts since this seems to have resolved the issue -

thank you for your advice here - I would not know anything about this were it not for you. he still has a bit of urine trapped but it is so small I am not worrying about it per the info I received here.

thanks again - Stella


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## zaftigmama (Feb 13, 2004)

That's great news! Thanks for the update. I hope everything continues to go well!


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## Frankly Speaking (May 24, 2002)

Stella, it sounds like you have carefully and fully thought this out and I support you in your decision.

I do want to give one additional piece of advise. When the betamethesone cream is used and then discontinued, often the prepuce will close slightly and it may appear that the opening is closing again and to many, that appears to be a failure of the treatment to work properly to resolve the condition. I suggest you go a little beyond the minimum to resolve the condition so as to give a little room to contract.

Please let us know how he's doing.

Frank


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## newmum13 (Oct 14, 2013)

Hi all. I am new to this site. I know it has been a while since the last post on this topic... however I really need some help. Has anyone ever had to deal with Congenital Megaprepuce? My son (4 months old) has just been diagnosed. Each time he pees, the base of his penis swells up into a ball and I have to manually compress it for the urine to be released.

I am interested to hear if anyone has had a similar experience and how they dealt with it? Did it resolve itself? Is it possible to treat without surgery? The surgery itself looks extremely disturbing... The original poster of this message seems to have had some luck with applying a steroid cream (I tried to PM her but I'm having technical issues....) I am currently trying the cream, but so far no results (it's only been 1.5 weeks since beginning the cream).

Hoping someone can help. Thank you.


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## MCatLvrMom2A&X (Nov 18, 2004)

It dosnt appear that there is a lot of information out there on this condition as it seems to be pretty rare. I would contact NOCirc and Marilyn Milos I am sure that they will be able to point you in the right direction so as to preserve as much foreskin as possible for your ds.


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## mama24-7 (Aug 11, 2004)

I agree there's not a lot of info out there. I read through this whole thread & I agree w/ contacting either Marilyn or the doctors at www.doctorsopposingcircumcision.org . There's been quite a bit of time since this thread was originally started so I imagine there've been more cases of this for them to know about.

I would say too, that if you are not practicing elimination communication, it could help the two of you to deal with this. If you are unfamiliar, here's more about it www.diaperfreebaby.org & there was, at one time, an EC board here, under diapers I believe it was, that may be helpful. Little babies pee a lot - I'd be shocked if you were getting every pee of his if you are using diapers in the conventional sense - changing every couple to few hours. Babies often pee right after waking, & then a couple or more times w/ in 30-60 minutes & then w/ nursing, so it ends up being a lot. If you know when he's got to go, you can help to make sure he is able to get the pee out. Feel free to ask me questions about it. I EC'd two children, one from age one until he was a grad & the other from 3 days old. It really ended up being a lot of fun - it's awesome to have your kid do their business where you want them too w/ almost no clean up!

Best wishes,

Sus


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## chamomile1981 (Oct 28, 2013)

Quote:


> Originally Posted by *newmum13*
> 
> Hi all. I am new to this site. I know it has been a while since the last post on this topic... however I really need some help. Has anyone ever had to deal with Congenital Megaprepuce? My son (4 months old) has just been diagnosed. Each time he pees, the base of his penis swells up into a ball and I have to manually compress it for the urine to be released.
> 
> ...


Hi, Im in exactly the same position. Im new to this forum as I found this original thread on google searches. How are you getting on?! Would love to Private message you and the original poster, but cant seem to send private messages?


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## mama24-7 (Aug 11, 2004)

Quote:


> Originally Posted by *chamomile1981*
> 
> Hi, Im in exactly the same position. Im new to this forum as I found this original thread on google searches. How are you getting on?! Would love to Private message you and the original poster, but cant seem to send private messages?


I think you have to have a certain number of posts before you can PM someone. There's a questions subforum that you can ask questions about how the forums work. There may be this question there or you could ask.

Best wishes,
Sus


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