Guest guest Posted December 24, 2003 Report Share Posted December 24, 2003 --- KIM Our son also has a VERY small penis and it is not something mentioned often, however it worries my husband sick. I was just curious if she said anything else about it and if she was certain it would grow with puberty? will it grow to an average size? Talk about a surprise for these boys LOL In RSS-Support , " Kacey171 " wrote: > Hi everyone, > > We made the trip to New York to see Dr. Harbison on 12/11, and I thought I'd share > what our visit was like. First of all, I have to say it was worth the trip. Even my > skeptical husband thought so. We waited a long time, of course, before we were > called in to see her, but she spent about 2 hrs. & 15 minutes with us. > > We learned some things that were quite interesting as well as some things that local > doctors missed years ago. is 10, and although I didn't get a " formal > diagnosis " of RSS until this past summer at the MAGIC convention, I suspected he had > RSS since he was about 4 years old. After attending the convention, I couldn't believe > the resemblance of all the babies & toddlers to when he was younger. > > was delivered at 28 weeks gestation via c-section. Doctors took him from > me, because he was not growing, and thought he would do better outside of me than > inside. He was just 15 oz. at birth. He has had a g-tube his whole life, and he > remains small (currently 50.25 " & 48 lbs.). He has been on growth hormone for > almost 2.5 years & Lupron for almost 2 years. > > Though he has had an LH/RH test twice which doctors thought was clearly pubertal. > Dr. H looked at the results and called them peripubertal. I was told by local doctors > that the LH level only had to be twice the amount of the FSH level to be considered > pubertal. Dr. H. said in true puberty, the LH is actually 3 times the FSH level. So, she > still believes that has been in adrenarche for many years. She is > recommending some more baseline tests before starting him on an aromatase > inhibitor to stop the advancement of the bone age. > > I know most of you who are on this listserve are pretty knowledgeable about > adrenarche, but for those of you who aren't, I urge you to keep close tabs on the > following indicators: body odor, development of axillary and/or pubic hair, acne, and > an increase in bone age (especially when the bone age was delayed previously). When > I look back at 's records (he has had about 10 bone ages done since 1/95), > he started advancing right at the time all the other signs of adrenarche appeared. > Although wasn't diagnosed with RSS at this point, I feel that his > endocrinologist at that time should have seen the signs of adrenarche, as this > condition is not limited to RSS. However, she did not, and proceeded to give him > testosterone injections to increase the size of his penis. All this did was advance the > development of adrenarche, according to Dr. H. I saw a post recently inquiring about > what to do about a small penis. Dr. H is not concerned with this. She doesn't feel > that we should do anything about it, except wait for puberty to actually occur. She > said it would definitely grow when puberty happens. > > I also asked Dr. H if fertility would be an issue for my son later in life, and she said > probably. She said that it is in many RSS patients. I have never seen this topic come > up on the listserve, but I know there are several adults who post occasionally. For > those RSS adults (both male & female), I am curious if you have children & if so, did > you have trouble conceiving? > > Dr. H gave us insight on many aspects of RSS, but the last thing I wanted to mention > was something else I haven't heard before. My son has scoliosis & kyphosis. He does > not wear a brace, but in my opinion & in Dr. H's, it looks pretty bad. He goes back to > the orthopedic doctor tomorrow, so we'll see what happens. has always had > a compromised respiratory system due to being a preemie and being on a ventilator > and oxygen so long. He hasn't seen a pulmonologist in many years, and we only give > him nebulizer treatments when he is ill. He does cough daily, especially in the > morning, but doesn't wheeze on a regular basis. Dr. H thought that the kyphosis/ > scoliosis could be restricting his thorax, so it doesn't expand, causing him to cough & > not be able to breathe as functionally as a normal person would. She recommended > he go back to a pulmonologist and said that this doctor should work carefully with his > orthopedic doctor. Again, I am mentioning this, because it is not something I have > seen in this listserve and may be beneficial to some of you. > > If anyone would like to e-mail me privately to ask questions about our visit with Dr. > H, I'd be happy to respond. > > Sincerely, > > Kim C. (mom to , 10 RSS, , 3, and baby-girl-to-be due in February) Quote Link to comment Share on other sites More sharing options...
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