Guest guest Posted June 30, 2003 Report Share Posted June 30, 2003 Hi , My son Bradley just had the operation on the undescended testes and also we decided on the circumcision. He is rather old, 12, but we knew that he needed to have the surgery. He had had so many others that when we were done with the necessary surgeries, we put those two off. Well, the urologist said that the testes are not meant to be up there You must either remove them or take them down. And so we did. His surgery went wonderfully. However the following 2 days of post op were horrendous and I don't want to lie about that. He is mentally impaired and deaf so it was hard for Bradley to really tell me other than cry and carry on. Luckily I have a good friend who is a nurse and I called on her for help. Following those 2 days he was fine and is fine now....So, what I am telling you is that the surgery is necessary and it worked out fine for Bradley in the end. It is an outpt surgery and he was home after a 2-3 hour recovery. Ask the urologist the question about the hormone therapy but I don't think your son will need it. We had the surgery done at University Of Mich. MOtt's Children's Hospital and the urologist's name is Dr. Parks. He is wonderful!!! The site of the surgery looks great and really there have been no problems other than those 2 days of recovery. We decided Bradley may not do well with the codeine they had given him in the Tylenol. One idea was that he was reacting to the anesthesia on those bad days....not sure. I hope that was somewhat helpful. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2003 Report Share Posted June 30, 2003 has his undescended testes brought down when he was around 18 mos (forget actually age)...it was great as he was young and oblivious, would be a lot worse now that he's older. Plus they said bringing them down early would give them best chance of being healthy outside of body cavity. One was way up in abd. they are both down and he is now going through puberty, getting " pubes " etc. He did not need testosterone. barbra m -- Undescended Testicles I'm looking for some support/advice about Cameron's undescended testicles. He is about 16 months old and in May we had a surgery scheduled to descend one and probably remove the other because it is way up in the canal and probably too small. That surgery was postponed because Cameron was sick - cold /ear infection. At the time I was upset to have to reschedule but now I'm glad because we are getting a second opinion and it gives me time to investigate what removing one or both testicles may mean. I know there are other parents on this list with far more experience (ie older male children who have dealt with this) so I'm looking to you for some input. Are there any drugs available that may help the testicles to descend without surgery? If they are removed what does that mean to Cameron's growth? Will he have to take synthetic testosterone? What does that entail? If you were Cameron's parent what questions would you ask the urologist? Any input would be appreciated. Our second opinion appointment is in August so I have some time to come up with good questions. Thanks. Mom to (age 3, typical) and Cameron (16 months, bilateral cleft lip/palate (repaired), ASD/VSD, profound hearing loss, hypotonia, feeding tube, posterior coloboma, undescended testicle)...waiting for confirmation of CHARGE at Nov. appointment Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2003 Report Share Posted June 30, 2003 Hi- Our son had his Orchipexy three years ago, at the age of ten (ouch!). Before the surgery, we did try ten (10) intramuscular injections of Gonadotropin. According to the Endocrinologist, she could feel that the tesetes decended somewhat into the canals after the injections, but obviously not enough. It was worth a try though - though IM injections were a challenge for me to administer - was (and always is) a champ at putting up with all this stuff though =). Best of luck to you- I am sorry I could not be of more hlep- Yuka > Are there any drugs available that may help the testicles to descend > without surgery? > Thanks. > > Mom to (age 3, typical) and Cameron (16 months, bilateral cleft > lip/palate (repaired), ASD/VSD, profound hearing loss, hypotonia, > feeding tube, posterior coloboma, undescended testicle)...waiting for > confirmation of CHARGE at Nov. appointment Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2003 Report Share Posted June 30, 2003 Hi , Our son, , is about 11 mo's old and he has micropenis and undescended testes. Recently, they gave him a shot of HCG to see if the body would produce testosterone on it's own. If that had worked, we would go through a series of HCG shots to grow his penis and the hope was that the testes may possibly drop on their own. However, the specialists that we are seeing from UCLA and LA Children's hospital all say that there is a very low probability that the testes will come down because of the testosterone produced. Unfortunately, the HCG shots only boosted his testosterone production a very tiny amount and we will do testosterone shots to grow his penis. I believe it's 4 shots done at 3 week intervals. We are then scheduling his surgery to bring the testes down in the next year. Our surgeon is talking about doing two surgeries because one of the testes is further up and needs two stretches. I'm a bit wary now, though, from the other posts on this subject. The other alternative is to bring one down and take the other one out. We also go back and forth about reproducing, but we really want it to be his choice, if possible. If doesn't go through puberty on his own, we will then give testosterone once again. Hopefull, like Missouris, will get puberty on his own. Please keep posting your findings and experiences about this. We are in the same boat. Thanks, Bo > I'm looking for some support/advice about Cameron's undescended > testicles. He is about 16 months old and in May we had a surgery > scheduled to descend one and probably remove the other because it is way > up in the canal and probably too small. > > That surgery was postponed because Cameron was sick - cold /ear > infection. At the time I was upset to have to reschedule but now I'm > glad because we are getting a second opinion and it gives me time to > investigate what removing one or both testicles may mean. I know there > are other parents on this list with far more experience (ie older male > children who have dealt with this) so I'm looking to you for some input. > > Are there any drugs available that may help the testicles to descend > without surgery? If they are removed what does that mean to Cameron's > growth? Will he have to take synthetic testosterone? What does that > entail? If you were Cameron's parent what questions would you ask the > urologist? > > Any input would be appreciated. Our second opinion appointment is in > August so I have some time to come up with good questions. > > Thanks. > > Mom to (age 3, typical) and Cameron (16 months, bilateral cleft > lip/palate (repaired), ASD/VSD, profound hearing loss, hypotonia, > feeding tube, posterior coloboma, undescended testicle)...waiting for > confirmation of CHARGE at Nov. appointment Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2003 Report Share Posted June 30, 2003 My son is almost 12 years old now. The doctors have been looking for his undescended testes since his birth but haven't been able to find it. His other testicle is quite small and he may not go into puberty on his own. He will be receiving testosterone if he needs it. We are in a dilemma about searching for his undescended testes because Dalton was born with a giant oemphalocele meaning his insides (liver, intestines, bowel) were on the outside when he was born. In order to find his undescended testes, they will have to dig around in all of the organs above and may create further damage. There are risks on both sides, searching for it or just leaving things alone. It's not an easy decision to make but Dalton is a happy, content young man although very small for his age. Hopefully he will go into puberty on his own and grow taller (that is his wish more than anything)! Good luck with the surgeries. We have to remember how wonderful these children are and all that they've been through. Lori Burns (a new CHARGE mom) > >Reply-To: CHARGE >To: CHARGE >Subject: Re: Undescended Testicles >Date: Mon, 30 Jun 2003 16:06:55 -0000 > >Hi , > >Our son, , is about 11 mo's old and he has micropenis and >undescended testes. Recently, they gave him a shot of HCG to see if >the body would produce testosterone on it's own. If that had worked, >we would go through a series of HCG shots to grow his penis and the >hope was that the testes may possibly drop on their own. However, the >specialists that we are seeing from UCLA and LA Children's hospital >all say that there is a very low probability that the testes will >come down because of the testosterone produced. > >Unfortunately, the HCG shots only boosted his testosterone production >a very tiny amount and we will do testosterone shots to grow his >penis. I believe it's 4 shots done at 3 week intervals. We are then >scheduling his surgery to bring the testes down in the next year. Our >surgeon is talking about doing two surgeries because one of the >testes is further up and needs two stretches. I'm a bit wary now, >though, from the other posts on this subject. The other alternative >is to bring one down and take the other one out. > >We also go back and forth about reproducing, but we really want >it to be his choice, if possible. If doesn't go through puberty >on his own, we will then give testosterone once again. Hopefull, like > Missouris, will get puberty on his own. > >Please keep posting your findings and experiences about this. We are >in the same boat. > >Thanks, >Bo > > > > > > > I'm looking for some support/advice about Cameron's undescended > > testicles. He is about 16 months old and in May we had a surgery > > scheduled to descend one and probably remove the other because it >is way > > up in the canal and probably too small. > > > > That surgery was postponed because Cameron was sick - cold /ear > > infection. At the time I was upset to have to reschedule but now >I'm > > glad because we are getting a second opinion and it gives me time >to > > investigate what removing one or both testicles may mean. I know >there > > are other parents on this list with far more experience (ie older >male > > children who have dealt with this) so I'm looking to you for some >input. > > > > Are there any drugs available that may help the testicles to >descend > > without surgery? If they are removed what does that mean to >Cameron's > > growth? Will he have to take synthetic testosterone? What does >that > > entail? If you were Cameron's parent what questions would you ask >the > > urologist? > > > > Any input would be appreciated. Our second opinion appointment is >in > > August so I have some time to come up with good questions. > > > > Thanks. > > > > Mom to (age 3, typical) and Cameron (16 months, bilateral >cleft > > lip/palate (repaired), ASD/VSD, profound hearing loss, hypotonia, > > feeding tube, posterior coloboma, undescended testicle)...waiting >for > > confirmation of CHARGE at Nov. appointment > _________________________________________________________________ MSN 8 helps eliminate e-mail viruses. Get 2 months FREE*. http://join.msn.com/?page=features/virus Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2003 Report Share Posted June 30, 2003 In a message dated 6/30/03 7:33:20 AM Central Daylight Time, ckrencicki@... writes: > We had the surgery done at University Of Mich. MOtt's Children's Hospital > and > the urologist's name is Dr. Parks. He is wonderful!!! > , My son Mark had the surgery by Dr Park also. He was 17 at the time. It was the second time he had it done. He had it as a baby and they somehow crept back up where they didn't belong. He is also very small in that area. We go there Wed again for a follow up Mark has incontinence issues that started when he was 15 UGH! It is always something. Mark is also deaf and developmentally impaired. Where do you live in Mich? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2003 Report Share Posted July 1, 2003 Hi! We too are in Michigan - dale (15 minutes from Lake Michigan by Grand Rapids). Just thought I'd add our input. Our who turned 2 last week is supposed to have his undescended testicles brought down this summer too. It was discussed last year but tabled until after cold and flu season. He also has micropenis and is uncircumcised with apparent possible potential tethering. We've been encouraged to " correct " it. It seems to be more cosmetic of an issue at this point. So we are opting to not do it. If it's a problem later we'll cross that bridge then. I say " he's been through so much... let's leave that area alone for now " . is small. He looks good proportionally though. He's got nice fat thighs, etc. He weighs 23 pounds and is 30 inches (falling off his curve). He looks more like a one year old (acts like it too for that matter). Theresa Re: Undescended Testicles In a message dated 6/30/03 7:33:20 AM Central Daylight Time, ckrencicki@... writes: > We had the surgery done at University Of Mich. MOtt's Children's Hospital > and > the urologist's name is Dr. Parks. He is wonderful!!! > , My son Mark had the surgery by Dr Park also. He was 17 at the time. It was the second time he had it done. He had it as a baby and they somehow crept back up where they didn't belong. He is also very small in that area. We go there Wed again for a follow up Mark has incontinence issues that started when he was 15 UGH! It is always something. Mark is also deaf and developmentally impaired. Where do you live in Mich? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2003 Report Share Posted July 1, 2003 Theresa, Mark has micropenis too, He has never been circumcised either. Mark is now about 5'4 " and sturdier that Mom I just wish we could solve the incontenince thing it is an added problem we just don't need and are VERY tired of dealing with. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2003 Report Share Posted July 1, 2003 HI , I live in Livonia. We have all of Brad's specialties at U of M. Do you go there besides going with Dr. Park? I like it there. We used to be at Children's until Brad was one and then switched over. Write back. cindy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2003 Report Share Posted July 1, 2003 , Brad has the micropenis but we did do the circ on his withthe testes. He is fine, by the way. He had a horrible time the first 2 days last week but he is great now...cki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2003 Report Share Posted July 1, 2003 , We actually see Dr Park tomorrow. He at this point is the only one we see there. Mark was taken to U of M after birth and was there for some very long stays when he was small. He had TEF repair, Duodenal stenosis, G tube placement and a Nissen by Dr Arnold Coran in the Pediatric surgery dept. He also had open heart surgery there, hand surgery, and plastic surgery. So at one time we had many many specialists there. They are very good but the visits are a bit taxing. I hope he doesn't get booted out of there soon because he is 19 now (though behaviorally that is not the case). Please keep in touch. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2003 Report Share Posted July 1, 2003 , WE had DR. Coran, too. But just a consultation because we had DR. Philippart at Childrens for all of his big surgeries and his heart over at Childrens with Dr. ARsenagus. They are both retired now. Brad is 12. I know, those are long appts. I wonder if I have ever seen you there???? lol Well, have fun at DR. Park's. WE go in 2 weeks for a recheck on the surgery and to Dr for a behavioral consultation in Aug. Have you ever been there? ck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2003 Report Share Posted July 1, 2003 , No Mark has never been seen there for his behaviors though he has PLENTY of them. Right now he is on Wellbutrin and Topomax. He is doing very well with these so far the Topomax is new. We thought his meds might be contributing to his incontinence issues so we changed them (grasping at straws, I guess) Marks heart, and all his GI and his ortho, and his plastic surgery were in Ann Arbor. We have spent a lot of time there. His G tube came out when he was 11. He still can only eat ground meat and soft foods. He never developed good chewing skills and still has trouble on occasion swallowing. He is deaf and visually impaired and a FULL TIME job LOL. He attends some summer school 1.2 days which is great for him. I sure don't know what we will do when he no longer can attend school it is all he has Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2003 Report Share Posted July 2, 2003 , Where did you say you lived in Michigan? What program is your son in now? Brad is in NOrthville at a center program in a school called Old Village. HOw long can our kids attend school? Is it still 23 or older? I know what you mean about school, Brad loves it. He has been ill so much in his life that he has missed quite a bit. ck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2003 Report Share Posted July 4, 2003 Dear , I am currently looking to switch urologists because of my son's undescended testes. HcG can be used to stimulate the testes to secrete testosterone which also causes them to grow. The added weight can help them drop into the scrotom depending on how close they are and if they are not hampered by something else. If his testes are not palpable they may not exist or may have atrophied. A test can be done...pretestosterone level...hcg (over about a week).....posttestosterone level. Removing his testes will effect his fertility...no testes, no sperm. I've been doing research and am not sure how it effects sexuality as my focus thus far has been how to enlarge testes. He can get testoserone supplementation to aide in puberty and rest of his life. That's the extent of my info at this time. Good luck and keep us posted! Kim M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2003 Report Share Posted July 7, 2003 Hi there, We live in Flushing Mi which is north of Flint. Mark attends a special needs school for (TMI trainably mentally impaired). I don't like the labels but they only use it for placement and the school is GREAT! He feels very comfortable there and has an interpreter. He can attend school until age 26 I believe. We got no new answers to his bladder problems They just can't say for sure what could be causing it. I enjoy the e mails, e mail me anytime. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2003 Report Share Posted July 7, 2003 , I live in Livonia, not all that far from you. HOw old is your son? I think you already said it, I cant remember... you know how it goes...My son, Bradley, is in a center program in NOrthville. He loves it there. But he will have to go to the High School version of the school after next year, which I am not happy about. I will cross that bridge when we come to it. C. Krencicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2003 Report Share Posted July 7, 2003 , Mark is 19 he will be 20 in Sept. OH MY GOSH!!!! Quote Link to comment Share on other sites More sharing options...
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