Guest guest Posted December 22, 2003 Report Share Posted December 22, 2003 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...
Guest guest Posted December 22, 2003 Report Share Posted December 22, 2003 Thank you Kim for sharing. You brought up some good points and there are always new members showing up ton the list serve and you did a nice job of communicating some things to watch for. J > > Reply-To: RSS-Support > Date: Mon, 22 Dec 2003 14:58:55 -0000 > To: RSS-Support > Subject: Visit to Dr. Harbison > > 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...
Guest guest Posted December 23, 2003 Report Share Posted December 23, 2003 , Dr. Harbison made the diagnosis at the convention over the summer. I realize it is a long way from CA, but in my opinion, going to the convention is worth the trip. I am far too - I live in South Florida. Besides getting Dr. Harbison to evaluate your child for free at the convention, there are a lot of informative seminars you can attend and fun activities for the kids & networking for the parents. Dr. Harbison, by the way, actually practices in New York and we just made the trip there to see her again. I hope you can find a way to make it to the convention - I don't think you'll be disappointed! Kim > Kim, > > Thank you very much for your post. My little girl, Mercedes, was also delivered by c- section for the same reasons. She wasn't growing. She was 30 weeks. For some reason, the placenta was not right. You say you son was diagnosised at the convention. Who made the diagnosis? what specialty? > > I keep wishing we could go to the convention, but Chicago is a long way from Fresno. > I think I will look into what I have to do to get sponsorship. > > Mercedes is 4 y/o 30# and 35 inches. She also had a trouble feeding. She couldn't breast feed and had an N/G tube for 4 months, then needed a " Munchkin " brand nipple. We had looked up and down the San Francisco bay area for a nipple she could use. Now we are in central CA, miles away. > > Thank you again > > Quote Link to comment Share on other sites More sharing options...
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