Just a warning, but this post contains way too much information. I'm hoping some of you other moms of boys with Ds can help me. My little guy has a teenie-weenie turtle penis. It is small and constantly hidden by a fat pad in his groin. I'm concerned that when we eventually start potty training, it is going to be a big problem. Plus, it's kind of awkward that it doesn't resemble his brothers. They, at 4 and 3, are totally into all things gross and private and have taken note that Eon's is just not right.
I have repeatedly asked our beloved pediatrician about it and he basically blows me off every time. (I love the man, but he has a stubborn streak.) Does anyone have any experience with this? Which doctor should I address this with? He has an appointment at the Ds clinic in July and an appointment with his endocrinologist in the fall.
Well Bennett's is small but not hidden. His problem is his testicles have retracted (I think that's the correct lingo) and need to come down so he may have to have surgery for this:( His Ped. also thinks his pee hole is too small but we had a pediatric surgeon look at is and he said for now, it's fine. I would get someone else to look at is as I know there's a name for that and sometimes surgery is required to avoid problems in the future. I do think it's a DS thing though-with the smaller penis, but I've always thought everything on him is smaller so it's proportional-LOL
ReplyDeleteWe have a similar issue, and my husband made me bring it up with the paed. There is a fat-pad issue for Luke too (please don't ever tell him I discussed this on the internet!!!-lol!) and muscle tone may also come into it. There is a chart available, you can google it, to check out the range of lengths and size of testes, believe it or not. It's just like a growth chart, only for the nether regions ;) And it isn't that small when you compare it to Luke's small overall size. But you never compare favourably to your older brothers, do you?!
ReplyDeleteI would ask about seeing a urologist. If he isn't having any trouble making urine there is no need to see a nephro (kidney doc). THe Urologist can give you info on if there is anything to worry about. You may only have to see them once & be done.
ReplyDeleteChristopher had undescended testicles/hernias and had to have surgery to repair it. He also has hypospadia - where the opening is on the bottom of the penis, but we aren't going to worry about that unless it gives us trouble later.
Good luck!
Steph and Christopher
I think it's the fat pad that is causing it to be hidden?? I've heard that before, kids with fat pads having penises that retract. Hope you get an answer!
ReplyDeleteSmall over here too but not hidden. I swear it seems like it hasn't grown since he was born! I have talked to my Doc as well but he doesn't think it's a problem. I've heard of hormone injections but not much else.
ReplyDeleteI would also get a consult to a pediatric urologist who is interested in providing quality care to kids w/disabilities (some docs that I have taken my son have shrugged off my concerns because he has Ds, so they didn't recommend treatments for him that they would have recommended for a 'normal' kid (which is what a urologist told me once about my son) we went to a different doctor who was not prejudiced against people with disabilities, and got a very different response.
ReplyDeleteanyway. I have friends whose young sons w/Ds have what is called a 'micropenis'
here is a link for more information:
http://menshealth.about.com/cs/genetics/a/micro_penis.htm
also, for anyone whose son has undescended testicles..from what I have learned, undescended testes are at a higher risk of testiclular cancer in later life. Surgery to bring the testicles down into the scrotum doesn't decrease that risk, but it does put the testicles where they can be more easily checked on a routine basis (males w/Ds have a higher than usual incidence of testicular cancer...undescended testicles are also fairly common in males w/Ds) Testicular cancer is very treatable if it is found early enough, but if surgery is not done to bring the testicle(s) down, and they remain in the abdomen, it would be really hard to detect a testicular tumor before it spread...so just an fyi on that one. When the first urologist diagnosed my son with an undescended testicle, he didn't want to do surgery because he said we wouldn't want D to be fertile anyway (well, duh..D was 4 at the time, and any fertility in that little testicle was long gone...surgery would have had to be performed before 1 yr of age in order to preserve fertility)Besides, I resented the doc making the assumption that D should never have kids...that sure wasn't a decision I was comfortable making for a 4 yr old)
anyway..the next urologist (who treated D like a person) said that the testicle was not undescended, it was'retractile'...sometimes it was in the scrotum, and sometimes it went back up into his abdomen..if it didn't come down and stay by the time D was 10, he could have surgery (it did, so he didn't have to)
My friend Kacey of Ella Grace with the Pretty Face sent me over to your blog and I'm guessing because she knows we have a similar situation with our son Riley. Ri is 3 1/2 and still has a tiny peeny :-) It has been stuck in that pad of fat always but is starting to show its little self more and more. It hasn't caused an ounce of trouble except when it comes to potty training. Hard to aim something so small. Our Dr says all the plumbing and parts are correct and in working order so we haven't worried. It is really just a cosmetic issue and a potty training issue. I have found a potty seat that has a higher than average pee guard so that will be helpful as soon as I order it. Feel free to stop by my blog or email if you have any questions. Take care Mary
ReplyDeleteThanks kathyr for the info! Yes we have a similar problem too. I remember reading a thread on BBC about a similar problem and the child got testosterone injections which worked wonders. I have no idea who posted it. Did you post over there too? I haven't been by for awhile.
ReplyDeleteI believe Heidi from the BBC board knows a great deal about this subject, I think she did shots or something like that with her son.
ReplyDeleteWe saw a uroligist... and he recommended us to a endo. Dr. River has "micro-penis" apparently and I have heard that testosterone shots can help.
ReplyDeleteMy son has a 'buried penis', too. The doc said it would begin to 'emerge' a few months after birth. He's now 2, and finally, it's happening. The fat pad has begun to get smaller as his body is developing from a pudgy baby into in slim little boy.
ReplyDelete