[Minniepott]

My 6 year old son has been forcefully retracted by medical professionals too many times to count. Mostly when he was an infant, and then it started happening regularly again when he was diagnosed with kidney stones at age 3. All his primary care providers have been very unhelpful and not knowledgeable about foreskin at all. In fact the last time we saw his old doctor's NP she actually showed me a picture of a circumcised penis and said "This is what it's supposed to look like. He has a problem and needs a specialist. He needs to be circumcised." and we were there for an ear infection...sigh....

Anyway,

He has been injured a lot, and he always recovered just fine and was back to his old self in no time. BUt the last time he was injured by his urologist it was pretty bad. He ended up cracking and bleeding and swelling, and it took 3 months for the pain and redness to completely go away, but eventually we got things under control again.

But now he's not at all retractable. It used to be retractable and loose, still not wide enough for full retraction, but so close, and so comfortable for him. Now he's having some pain again and the opening is just large enough for urine and when he tries to pull it back it doesn't budge one bit. He says "My penis is broken. Mom. She broke it! It was almost time for me to see all of it in there, but now I can't see it anymore." I told him with time it would get back to normal, but here it is a year later and it still isn't budging, and looks rather sore these days. I think mostly from his dehydrated urine touching the tip, and during erections.

His urologist wanted to do a "procedure" on him the day of the injury and diagnosed him with phimosis even though back then everything was perfectly fine on the foreskin front. I ended up sending a fax to her office complaining of the incident and also sent information about foreskin and how it works and how to properly examine an intact penis and so on, and haven't been back (his Nephrologist handles his kidney stone problem now).

I changed his PCM AGAIN hoping that they would be able to help. Maybe steriod cream or something? I don't think it's infected. He just recently was on a wide spectrum antibiotic followed by an antifungle for his IBD. But she didn't feel comfortable treating him and warned me that he may have to be circumcised. The only specialists available are his current urologist who injured him, and another urologist that diagnosed his painful problems as "Maybe he just likes to pee" even though I could care less about how often he went, and was only there because he hurt. So I'm kinda stuck between a rock and a hard place because I am unable to pay out of pocket. I talked to the PCM about what transpired between his urologist and I and she says "Just tell her there's no way you are circumcising him or doing any other procedure before trying something else to help. If you feel that strongly about it. Don't go in accusatory, and simply state: I don't think this was a problem before we saw you, but it has become a problem. " but then went on to warn me it will most likely end up a circumcision.

So is there a problem? If he was able to almost retract all the way, and now it's like a newborn, or should I drop it and let it be? What procedure besides circumcision can help? Do you think it is necessary? Then there's a part of me that just wants to give up and let the darn docs have their way, so he doesn't have to go through this anymore. Not only do they hurt him, but they make him feel awful and different. My poor kid had to be taught to lie about his painful urination to protect him. I think the pain from urinating isn't his foreskin even though I think there may be a problem there. It's from passing crystals in his urine. Only one of his several doctors says that passing crystals is painful for a child, even when there is blood in his urine. I don't agree. It IS painful for him, but They all blame his foreskin on the "bee sting pain way inside"

So tired of having to tell doctors not to retract, just to have them hurt him anyway. So tired of nudging them out of the way. So tired of promising my boy it won't happen again, and breaking the promise. He has to deal with so much pain and discomfort everyday with his gut and his pee, and I hate to add this to his list, but if there's a problem...I want to help him and do the right thing. PLEASE inform me about the procedures, and give me some advice, so If I do make that appointment with his urologist I'll know what I'm in for and know how to protect him.

 

[MCatLvrMom2A&X]

to both you and your ds you have been through so much

There are things that can be done besides circ. 1) steroid cream along with stretching 2) a simple cut of the foreskin that will allow it to retract called a prenuplasty or dorsil slit 3) removal of the tip of the foreskin only.

Your main problem it sounds to me is actually finding a urologist that you trust if it comes to any sort of surgery because once they have him back there they can pretty much do what they want and once it is done there is nothing you can do about it. And from the sounds of it the urologists you have seen would be more than willing to do a full on circ given the opportunity no matter what you have requested.

Here is some contact information for you Marilyn Milos is an RN and she is always happy to help people in your situation she may even have a Dr. who can see your ds.
NOCIRC(Maralyn Milos)
PO Box 2512
San Anselmo
CA 94979-2512
[email protected]
Phone: 415-488-9883
Fax: 415-488-9660
www.nocirc.org

 

[A&A]

Yes, please call Marilyn. She is so nice and readily answers her phone.

 

[Minniepott]

Thank you so much. I'm going to wait until it a good time in her zone, and give her a call (((hugs))) thank you

 

[Minniepott]

Oh my gosh! She's the most wonderful person in the entire world!!!! I'm in tears right now, and so very relieved. I can't wait to tell my son "it's going to be O.K."

We are going to try bacterial therapy, and follow up. She said hopefully with time he'll be more comfortable, and if not she has a urologist for me to see. She said no procedure will have to be done, and she will work with us to ensure it. She also said to stay away from our urologist, her ego was hurt and she obviously isn't open to the idea that she could be wrong.

Thank you so so so so so very much. You have no idea how much you helped me, and how wonderful it was to finally have a conversation with someone who not only agrees with me (family and friends don't get it either) but actually knows what she is talking about and can help without hurting my baby again. (((hugs)))

 

[A&A]

Yea! I'm so happy to hear your update.

 

[MCatLvrMom2A&X]

thank you for the update and I hope that you keep us updated on how your ds is doing along the way. I know it will be helpful to other parents out there.

 

[hakunangovi]

Minniepot, I am very glad that you got in contact with Marilyn. In the mean time rest assured that there are several options that do not require the loss of any foreskin. The first priority, of course is to make your DS comfortable and pain free again. There is no rush to regaining the ability to retract his foreskin. When appropriate, the first course of action would be the use of Betamethasone cream and stretching (note that often doctors do not prescribe a long enough time period the first time). If that fails there are several methods of preputioplasty which basicaly involve a small longitudinal cut that is then closed horizontaly, effectively widening the tight part of the foreskin. Simply removing the tip of the foreskin is NOT a good idea because the frenar band and dartos muscles are lost/destroyed. You can read up on these procedures at www.cirp.org/library/treatment/phimosis/ . There are lots of papers that can be accessed in the appendices at the bottom.

There is another procedure that looks extremely promising: www.biomedcentral.com/1471-2490/8/6 . Check out the before and after pictures - the results are amazing.

Good luck - I feel so sorry for both of you, especialy your poor Ds , thinking that the doctor broke his penis. That is sad.

 

[Minniepott]

hakunangovi,

That's essentially what she said. That right now retractabilty isn't important, and to just leave be. This was HUGE. Ya know you have all this conflicting advice rolling around in there and hear all the doctors say this and that, and since I'm no penis expert (but on my way to becoming one LOL) I was really worried. Just knowing it's something that can be dealt with later if it hasn't resolved, when he's more mature, helps us both a ton. She said the topical probiotic MAY actually help with the tightness as well as make him more comfortable. I think it will help a lot even if it doesn't help loosen his foreskin back up. Especially since he is on courses of atibiotics and antifungal quite regularly for his Inflammitory bowel disease. It most certainly can't hurt, and I am so for that.

I had to special order it though. No health food store around here carried it (crazy huh?), so we won't be able to start for another few days.

And now I just have to try to let go of all the anger and guilt I have....sigh...

 

[hakunangovi]

Minniepot, The anger I understand - I feel the same due to the arrogant and unprofessional treatment that we recieved over my DS many years ago. However, you have nothing to feel guilty about. You should feel proud of yourself that you have stood up for your son against some very ignorant and unethical "professionals" who should know better. Many people would have caved and allowed their son to be circumcised, but you fought to save his foreskin and dignity. Your son is very lucky to have you for his Mom.

 

[Minniepott]

Thank you
I keep telling myself not to feel guilty for trusting her, and continuing to fill out paperwork while the painful exam took place, but after knowing that I can't trust them because of all the experiences prior..... And then, I didn't say anything. I thought "maybe she's right and there is something wrong because of all the past injuries". I'm more than angry at her, but mad at myself for not following my gut reactions and instincts. I know better. I really hope that by the time my son is a father this ignorant craziness is at the very least on it's way out the door, and is considered a rare occurrence. I also hope the informational packets that I have sent out actually get read by someone who can make a difference in a boy's life, instead of filed away in the trash.

 

[PeterJ]

Hi minniepott

I'm so glad to hear that you have found some peace of mind with this issue and some practical solutions that are going to help your son. If you can, it would be wonderful if you could keep us updated on how he is doing. My son was forcibly retracted at 4 months - he's 9 months now, and everything seems to be ok, but it is so useful to have other parents share their stories and knowledge here - especially in your case, as your son has unfortunately faced multiple issues. So if you can, please update us on how he's getting along and which treatments worked etc. I know how I felt after the retraction happened to my son, and it is of enormous comfort to hear from others who have been through the same thing, that everything is going to be ok.

Best wishes

Peter

 

[Minniepott]

I will keep in touch for sure. Nothing more frustrating than searching threads for answers and having no resolution in the end. I still don't have the probiotic liquid grrrrrr...

But I expect it to come in before this week end.

Unfortunately we may not know for sure what kind of damage was done until he's through puberty, but I feel so strongly about this I KNOW mothering.com will pop into my mind even if his issues have resolved by then. How wonderful to be able to give some hope and peace of mind after bad injuries, or even some advice on how to handle it if their son does end up having a problem because of his injury.

Thanks again everyone

 

[Unconventional1]

Hey Minniepott- just read through some of your posts and had a few thoughts. You are saying that your son has kidney stones and IBD and that is a big reason why he was injured. It sounds like your son has some major intolerances to certain undigestible proteins in his diet. My family and I did a fantastic cleanse which eliminated as many of these as possible and it cleared up all of our inflammation while doing the cleanse as well as made it so I/we have less food issues in general. There are certain things that make people form kidney and gall stones more quickly as well and this diet eliminates those as well. If you would like to talk about it I would be happy to share info. It's horrible to see our little ones in so much pain and dealing with so many issues! Just let me know if I can help at all!

 

[Minniepott]

Currently we are going through allergy testing again (always negative. Strong strong negatives). I think maybe, he might have celiac though. His villi are completely flattened, but his blood always comes back negative. (I think it was done incorrectly, and I'm working on getting him retested)

But Crohn's runs in our family, and that's the direction his GI is leaning.

I would be interested in what you are talking about, but currently we are in the middle of very important treatment they may end up giving us a piece to the puzzle, and I don't want anything at all interfering, or confusing things. When you have a chronicly ill child, you learn quick that you have to take it slow and do one thing at a time. But if I ever find us in stuck mode again treatment wise I'll pop back on and get more info from you. Thank you so much for offering.

And yes, it's because of his GI issues from birth that we had to put him in harms way over and over again. So if there are any worried Mom's out there with an otherwise healthy baby boy, I want to assure you our case is an extreme one. As an infant we were visiting the doctors at least once a week, sometimes more. Then add urinary/renal problems on top, and just try to keep them away from his penis. Protect your son at each and every well check, even after you have discussed retraction with your medical professional and feel you have an understanding with them. I cannot stress that enough.

What's really sad is I taught myself to ignore his painful urination and other renal symptoms because I knew if I took him in they would hurt him again, even if I begged them not to. (I have had to physicaly nudge them away before, even after being told not to touch his penis) So I ignored his pain to help protect him from more pain. By the time he was 3 it couldn't be ignored anymore and was having a huge impact on his life, and then the foreskin injuries began again..sigh...

 

[Unconventional1]

I totally understand not wanting to go too fast. I felt the same way when my hubby wanted to start all this. Food is a funny thing. If you look at the evolution of the human digestive tract it is very similar to any other frugivorous primate (primarily fruit and also vegetable and nut eating). In the course of human history we have figured out how to manipulate plants, animals and the land in order to create society and eliminate the high mortality rates of our young that plagues every species including ours until recently. These changes on our diets happened very rapidly evolutionarily speaking, in the last 45,000 years we started using fire, grain, milk, etc... which is just a small fraction of a percentage of the time we have spent eating here on Earth.

These new foods and the new way of treating these foods (fire) challenged our digestive tracts with something that was foreign and is still largely undigestible and causes allergies and inflammation in most people- these are indigestible proteins in foods (milk has casein, wheat and the like have gluten, beans have others). I think humans did fine with these changes and most people have been able to consume these things with little to no recourse. In fact society was created around the agriculture of grain among other things. I am not challenging the importance of this in human diet or history. But I think that we need to start looking at how these items impact our health and the health of our children now that everything in the agricultural industry is so different.

The one major change in the last 60 years is from that new four letter word Monsanto and its competitors. The rise in intolerances to grain, milk, beans and rice is astounding. But these are all foods heavily GMOed by these corporations. My family is plagued with intolerances and allergies, and no, we have NEVER been tested. BUT eliminate them from our diet and miracles happen. Health vastly improves- no more colic in baby, no more UTIs, teeth are no longer rotting, don't get the flu- ever. The whole purpose of us changing our diet was due to my first two children's teeth being malformed at birth (the have no enamel on the top front 4 and are rotting out of their heads by 1 year old. It was due to grain consumption (Not wheat either- ancient whole grain milled in my kitchen). No more grain and my newest 1 year old has no teeth problems whatsoever.

So based on your poor boys gut issues it sounds like he needs major help with getting rid of that layer of mucus caused by inflammation. The flattened villi is a sure sign of food intolerances. Cut out grains and dairy and you will likely see massive improvement in his gut and kidney issues. There are plenty of alternatives out there. We replaced grain with buckwheat, sorghum and millet as staple fillers when we want baked goods, something like stir fry (use millet instead of rice) etc.

Milk is another big issue if your little guy consumes it. The calcium to phosphorous ratio is completely wrong for humans. And it sounds like calcification is a huge issue for your son if he is getting kidney stones already.

So something easy in this time of year to help your guy out is to encourage him to eat as much fruit and veggies as he wants and limit grain, dairy and meat products as much as possible. Don't do a radical diet shift right now, but move in that direction and see what happens.

Really sorry you are going through all that. Doubly sorry for your son. I hope everything resolve as quickly and painlessly as possible.

PS. I have a great resource for the most incredible probiotic I have ever found. It's pricey, but my family has been on it for 1 year and we feel absolutely great. If you want the info, just let me know!

 

[Unconventional1]

Ahhh... I forgot to add there are a couple super easy and cheap remedies to help clear already formed calcifications in the body- my husband and I have used them and my husband did a gall bladder cleanse (I haven't yet due to nursing), but he lost a large quantity of stones (think medium apple size all together). There are NO side effects from these other than better health my kids will drink them, but it takes a little getting used to. Anyway the recipes are as follows:

1-2 TBS apple cider vinegar

equal part raw honey

water to taste

This softens kidney and gall stones. Drink as often daily as desired.

1 tsp baking soda

1 tsp epsom salt

1-2 TBS fresh lemon juice

Water to taste

mix salt and soda in water and add lemon juice. A bit like alka-seltzer. This is most effective first thing in the morning then let digest for 20-60 minutes before breakfast- but it can be used at any point during the day. This neutralizes body pH helping to prevent calcium leaching from bones and teeth due to diet. This also softens and prevents stone formation. And I always take this whenever I have a headache- it goes away immediately (but sometimes only temporarily depending on the cause).

 

[Minniepott]

Unconventional,

Your recipe is a VERY smart one! This is essentially what he takes in pill form everyday only not in citric acid form, and could easily be replaced by this recipe and prevent his type of stones from forming, but his esophagus, stomach, duodenum, we assume his entire small intestine (no way to see that directly) and begining of his large intestine are all inflammed and sore from his disease, so he can't handle the citric acid without severe pain. In fact his pill could most likely be replaced just by drinking lemonade everyday, but it would be like giving him lye and he won't touch the stuff. He screams NO if anyone offers lemonade or orange juice.

Anyway,

Fabulous update!!!! It's only been a few days using the probiotic and there's no more pain or discomfort for him down there. It looks as happy as happy can be

He's still tighter than he was before and it doesn't retract at all like it used to, but Marilyn assures me this is O.K. just like it was all along. You hear it's O.K. when your son gets injured as an infant, but later on and after being able to retract some?.... well I wasn't sure, and since all the doctors in this country think every boy should fully retract by age five, and insist something was/is wrong because it doesn't, There was no way of knowing for sure what I was supposed to do, but the old "leave it alone, and let it do it's thing" rule still applies ladies WHEW!

I'm going to quote one of your many helpful articles that essentially repeats what Marilyn explained to me, in hopes that if any other parent in a similar situation is searching this thread/forum for help will read it.

"-Your son's foreskin is getting tighter. It no longer retracts. Something is wrong. He will have to be circumcised.

Sometimes, in childhood, a previously retractable foreskin will become resistant to retraction for reasons that are unrelated to impending puberty. In these cases, the opening of the foreskin may look chapped and sting when your son urinates. This is not an indication for surgery any more than chapped lips. This is just the foreskin doing its job. If the foreskin were not there, the glans and urinary opening would be chapped instead. Chapping is most often caused by overly chlorinated swimming pools, harsh soap, bubble baths, or a diet that is too high in sugar, all of which destroy the natural balance of skin bacteria and should be avoided if chapping occurs. The foreskin becomes resistant to retraction until a natural and healthy bacterial balance is reestablished.

You can aid healing by having your son apply a little barrier cream or some ointment to the opening of the foreskin. Acidophilus culture (which can be purchased from a health food store) can be taken internally and also applied to the foreskin several times a day to assist healing, and should be given any time a child is taking antibiotics."

Your boy will be fine, and if any problems DO arise during or after puberty because of his injuries, there are ways to safely treat these problems, until then...continue to leave it alone, just as you have been. Give it time, and let nature take it's course.

 

[Minniepott]

After re reading my post, I feel the need to make it clearer, that while he still isn't as loose and as retractable as before his injury, he is much looser and comfortable now just with applying the probiotic several times a day. It's almost as though the foreskin was swollen, and that's why it was so resistant and tight and sore. I'm thinking by the end of this course he will be back to his old self.

This makes so much more sense than cutting and prying does. Thank you all, and thank you Marilyn. You saved my boy from more pain and harm over something so simple and normal (((hugs)))

 

[Dan Bollinger]

Sounds like you are on the right track with Marilyn's advice. The persistent swelling suggests it was still inflammed, but that is resolving itself. Good. Average age of full retraction is 10 years, so don't hurry the normal process. At the very worst case, should he still be having problems or discomfort after puberty, he can have those adhesions dealt with surgically, but, see a plastic surgeon not a urologist. Chances are normal sex play and the surge of hormones at puberty will take care if it.