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Need immediate assistance

post #1 of 13
Thread Starter 
My son , who is eight, is having a really hard time peeing. It has progressed from ballooning and discomfort to extreme ballooning which distorts his penis and screaming, with only a fine mist coming out. Last night he "misted" for an hour, screaming horribly. I have taken him to emergency, thinking it was an infection, but everything came back clear. It is simply a small opening. The doctor said he's never seen such a small opening, and recommended a small incision if my son were suddenly unable to pee at all. Luckily, they tend to recommend circumcision as a last resort here in BC, but right now the steroid cream they've given me isnt showing any difference.

The great big factor that complicates things is that my son has autism. He is absolutely refusing to go, causing a huge amount of retention and horrible pain. I am at a loss, and I am begging for help before I take him to emerg again for a cut. Any information would be greatly appreciated.


UPDATE: James went in to the clinic shortly after this and was sent to emergency and had a procedure to open up the end of the foreskin. He was still unable to urinate three hours after the surgery, so they cathed him and pulled out 400 cc's. Because of this, and due to his urine culture coming back showing an infection and a high white blood cell count through his blood work, they decided to admit him. We spent seven days in hospital, with the infection spreading upward to his kidneys. He was constantly holding in his urine, and needed major assistance to urinate, but luckily his stream looked better, albeit far from perfect. It got very scary for a while, and I am so thankful he is out now. However, two urologists have now seen his penis, one in the hospital and one just last week, and both say he absolutely needs a circumcision. He still is just so tight, already is having troubles peeing again, and has a lot of scar tissue. It looks to me like he will never be able to retract.

I will say that I immediately contacted my old midwives to ask about this, and they recommended those two urologist. Both very anti-circ in general, and the second one we saw last week has two intact sons. We are still vigorously applying the steroid cream, but he has been booked for surgery on the 19th. I feel like I need to just accept that this is medically necessary. Still feeling a little sad, and so thankful that my younger son is fully retractable at four.
Edited by Intuition - 5/9/11 at 4:06pm
post #2 of 13
I am so sorry your ds is hurting greensad.gif I am glad they are willing to do a cut rather than circing him. How long has he been using the cream? Has he been doing stretching along with the cream? Has your ds been retracted in the past by anyone at all or any reason he would have scaring to the sphincter?

If it where me and if he has been using the cream and doing stretching for a while and nothing is happening ( I have read it can take a month or more for it to work) then I would go with the cut making sure to get all the details of how much they plan to cut and making sure they wouldnt be circing for any reason. I dont say that lightly at all but with his issues and him holding his urine to the point he is in so much pain he obviously needs help.

Odds are though it he could handle it long enough the tip would loosen on its own to the point it wouldnt cause distress to him any more but that may not be an option you would be willing to try since he is hurting now.
post #3 of 13
Thread Starter 
Thank you so much for responding so quickly!

He has been using it for three days now, and I ask him to retract as far as he can as I am putting the cream on. I'm also encouraging him to play with it as much as possible, as he's never taken any interest in it before. At this point, I cant even see a glimpse of his glans, and he has never retracted at all. Nobody has ever tried to retract him either; his doctor is very much anti-circ.

I have been told it would be a 2 mm cut, so they're essentially just doing the minimum just so he can pee. It is a very hard decision for me, obviously, but yes he is in immense pain, and his penis is swelling to double its size and bending sideways when he is retaining so much. I don't know if he can manage even another night. greensad.gif

I may call the urologist to get him in immediately.
post #4 of 13
Yeah from your description something definitely isnt right. I would take him to the urologist and see if maybe he/she cant figure out what is going on.

You took him to the ER right, did a urologist see him there? It could be that if it wasnt that someone who is familiar with the intact penis like a urologist should be he may see something/find something they missed in the ER and he may not need to cut. But if he does need one then I wouldnt hesitate to do it. No point in letting him suffer if it can be fixed. I dont say this lightly either I couldnt be more anti cutting on the foreskin but there is a point in time where you have to do something and in this case a small cut isnt going to affect the function of the foreskin and may very well save it.

Good luck to you and your ds mama hug.gif

I wanted to mention that last night I was doing some reading on phimosis and ran across them talking about using a balloon, I guess like is on the end of a cathiter to widen tight foreskin openings so maybe mention that to the urologist and see if it is an option in your ds case to get him urinating freely until the steroid cream can do its job.

Here is the link about that it is from the UK http://www.norm-uk.org/circumcision_alternative_treatments.html
Quote:
"True" phimosis --- better termed "preputial stenosis," because "phimosis" has so many different definitions it now is devoid of any useful meaning --- occurs in less than 2% of intact males.

Of these 2%, 85-95% will respond to topical steroids. Of those who fail this, at least 75% will respond to stretching under local anesthesia, either manually or with a balloon. The arithmetic is simple: At the very most 7 boys in 10,000 may need surgery for preputial stenosis. No wonder the Canadian Paediatric Society calls circumcision an "obsolete" procedure!

Edited by MCatLvrMom2A&X - 4/20/11 at 1:11pm
post #5 of 13

Intuition, you will find a lot of information on conservative measures at www.cirp.org/library/treatment/phimosis/  .  There was a abstract from an article written by chinese doctors who used baloon catheters, similar to those used in constricted arteries, to widen a tight preputial orifice. There are also many versions of preputioplasty.

post #6 of 13
Thread Starter 
Updated. smile.gif
post #7 of 13
It sounds like you and your ds has been through a lot. hug.gif

I hope that you will insist that they leave as much foreskin as possible when they do the surgery. After all they dont need to take it all off to allow for full retraction just the sphincter needs to be removed.
post #8 of 13

I'm not a doctor, but how did it become medically necessary after 8 years? He has had no problems until the ballooning episode. He was peeing fine, small hole or not, wasn't he? And he has an infection. Why not wait until the infection clears up, then if he pees fine, let him be? Personally, I wouldn't consider circ.. JMO

post #9 of 13
Thread Starter 
I do know that he has balanitis. If anyone has any other ideas, please let me know. We're still using the steroid cream twice a day and I am giving him baths daily with no soap and telling him to play. It is definitely progressive, the balanitis looks worse than even a few months ago.
post #10 of 13

So sorry your son is the very rare case where surgery may be needed as a last option. However. a circumcision is NOT needed since that requires amputation of all or most of his nerve enriched prepuce (foreskin). As you stated, only very little tissue 2mm needs to be removed (the scarred tissue at the small opening). So please make certain and have in writing with the urologist that only the scarred tissue needs to be removed so your son will still be intact with a functioning prepuce.

 

However, with tight foreskins with small openings there is a procedure that can be done that doesn't involve amputating any tissue, just cutting and stitches. The link below is a published article describing the surgery referred to as prepuceplasty. The article's title is  "Sutureless prepuceplasty with wound healing by second intention: An alternative surgical approach in children's phimosis treatment".  It was a study done in Greece which is not a circumcising country. Perhaps you could find a urologist familiar with this simple procedure. The only critisism I have of the surgery studied in the article is that the surgery was done on children with a diagnosis of phimosis.  It is a Fact that some boys don't have full retraction until they complete puperty so employing surgery before puperty is completed is unnecessary. However, your son seems to be an exception due to the pain and infections that seem to persist. Best regards to your son.

http://www.biomedcentral.com/1471-2490/8/6 

 

post #11 of 13

Have you contacted Marilyn Milos of NOCIRC?  I think you should speak to her and see what resources she has.  I can also try to contact her and direct her to this discussion thread.

 

NOCIRC
PO Box 2512
San Anselmo
CA 94979-2512

info@nocirc.org
Phone: 415-488-9883
Fax: 415-488-9660

 

post #12 of 13

Does your son have yeast issues? I have heard of yeast problems causing phimosis. Balanitis just means inflammation and that can happen to circed and intact boys alike, so that's pretty meaningless as a diagnosis.

 

I would definitely see what your less-invasive options are short of full circumcision. I would contact Doctors Opposing Circumcision too for their take on less radical procedures that would relieve the phimosis (which I agree sounds like a big problem -- but not necessarily one that needs a full amputation of the whole foreskin!)

 

Hang in there, mama, sounds terribly traumatic all around!

post #13 of 13
Thread Starter 
Thank you all so very much for all of the help and information you've given me. I haven't got time for typing today, but I will be sure to keep this thread updated.
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