Guest guest Posted December 4, 2001 Report Share Posted December 4, 2001 I would be very very grateful if you could find out the hospital for me. Excuse my ignorance but what does GI stand for? I am new to all of this.What kind of doctor is he? How would I go about getting an appt for her? Thanks again > RSS-Support magicrss@...: Wed, 05 Dec 2001 01:24:28 -0000 > Gretchen - DR in MAReply-To: RSS-Support > >Gretchen, irregardless of syndromes, it sounds like your daughter >needs to have her GI issues resolved ASAP - weight gain is the utmost >importance regardless of syndrome or reason. > >I was just talking with Dr. Harbison (pediatric endocrinologist in >NYC who is kind of an expert on RSS) about speakers for our next >MAGIC convention, and she said there is this great GI doctor in >Massachusetts named Dr. . She said he knows so much about >gut motility issues, that she could learn TONS from him (and this >says a lot if you knew Dr. H). I don't know which hospital he is at, >but I could find out for you. We are hoping to have him speak at our >next convention in July in Chicago. > > > > >> Hi >> >> Thank-you so much for all your info and warm welcome. I cant say >you made me un scared as I feel more scared than ever reading all >this info! Where in NH do you live? We have a house in Nashua.I am >really hoping that we can get appts at BCH as soon as possible. My >Dr. is working on it. Sage is very strong in her muscles. My ped said >he cannot believe how strong she is for her small stature. I can >imagine her taking a long time to walk but Im sure she probably will, >as she has been a bit slower than the normal baby with alot of >things. I am still hoping that she is just a small baby and will all >of a sudden catch up. The thing that scares me the most is that she >hates to eat. However she does eat. It seems that she only throws up >when she starts to cough after eating or she isnt properly burped. I >dont beleive it is becasue she cant handle what she is taking cause >normally she does pretty good. The thing is when she was relaly tiny >as a new born she expressed no desire to ea! >> t and would even sleep through the night and not wake up or cry to >eat. We couldnt understand this as she was so small we thought she >would want to eat more than the norm. She threw up alot then when she >would eat to much. She was BF for 5 months.My ped has not mentioned >anything about increasing her calories or getting medication for her. >That really annoys me. i will ask him on Thurs at her 7 month check >up. Well once again thanks for all the wonderful info. >> >> Gretchen Canning >> >> > " Merrithew, () " <kkm@l...>Date: Tue, 4 Dec 2001 >14:03:03 -0500 >> > New and ScaredReply-To: RSS-Support@y... >> > >> >Hi Gretchen, >> > >> >Welcome to the RSS Support list. I am writing you directly because >the >> >support list has been having some technical difficulties and I did >not want >> >you to wait too long for an answer. >> > >> >First, I know you are scared but I think you can relax a little. >As far as >> >anyone knows, RSS is not life threatening. RSS is a genetic >disorder which >> >seems to affect appetite and growth. There are also some >developmental >> >delays in muscle tone and speech. So your daughter maybe slow to >walk and >> >talk but she will. So you might want to contact any Early >Intervention >> >services to see if you can start with physical or occupational >therapy and >> >maybe later speech therapy. >> > >> >Second, my son is 4 1/2. He was diagnosed with RSS when he was >about a year >> >old. He too did not eat a lot. Poor appetite is the one of the >most common >> >characteristics of RSS. I would suggest letting your daughter eat >as much as >> >she can but don't try and force her. As you have observed, she >will just >> >throw up and food on the floor isn't doing her any good. My son >did not walk >> >until he was almost 20 months and he did not talk until he was >about 3 1/2. >> >He is doing great now and he receives speech and O/T weekly. He is >in >> >preschool. He is the smallest in his class but he is a very happy >healthy >> >boy who is dong great ( biased dad's opinion). >> > >> >There are a few things that can be done. First, try and increase >the calorie >> >density of your daughters food ( more calories per ounce). You can >do this >> >by adding small amounts of oil ( canola etc.) or butter to her >formula. You >> >can ask you your doctor to recommend a higher calorie formula. >Also, ask >> >your doctor about seeing nutritionist. Maybe they can recommend >polycose. A >> >tasteless food supplement that boosts calories. >> > >> >At some point you may have to consider growth hormone. It is >probably too >> >early to tell and there is plenty of time for that decision. We >can bury >> >you with info when the time comes for that. >> > >> >You mentioned you live in Bermuda and will be traveling to the US >for a >> >doctor. I can recommend several on both sides of the ocean. >> > >> >We live in NH and we go to Boston for our son. We used to go to >Boston >> >Children's but his doctor moved across the street to the Joslin >Diabetes >> >Clinic. Her name is Dr. Alyne Ricker. She is wonderful but >conservative >> >especially when it comes to using growth hormone. In fact all the >doctors at >> >Boston Children's are conservative about prescribing growth >hormone. Others >> >on this list in the Boston Area see a Dr. Ingrid Holm at Boston >Children's. >> > >> >Dr. Ricker can be reached at . >> > >> >Dr. Holm can be reached at or . She has a >dual >> >specialty of endocrinology and genetics. >> > >> >If you want to go to New York City, the US expert on RSS is there. >Her name >> >is Dr. Harbison. She has a very aggressive approach to treating >RSS. She is >> >an excellent doctor but sometimes her bed side manner needs work. >Dr. >> >Harbison can be reached at . >> > >> >If you want to travel to England, then you can see a Dr. Stanhope >in London >> >at the Great Ormond Street Hospital. Their web page is >> >http://www.ich.bpmf.ac.uk/ Dr. Stanhope is also excellent and has >written >> >some of the very few articles that exist on RSS. >> > >> >Well, I know this is alot of info all at once. >> > >> >I hope it helps and feel free to e-mail me at any time. Please >note I am >> >sometimes slow to answer, especially on weekends. >> > >> >Ken M >> > >> > >> > >> > >> > >> > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2001 Report Share Posted December 5, 2001 Hi Gretchen, GI stands for Gastro Intestinal (I think). They have some pediatirc GI doctors on staff at Boston Children's. I think if you can get an appointment with a geneticist or an endocrinologist then they can can referr you from there. You might want to check the Boston Children's Hospital web site. It is http://www.childrenshospital.org/ I hope this helps. Ken M > >> Hi > >> > >> Thank-you so much for all your info and warm welcome. I cant say > >you made me un scared as I feel more scared than ever reading all > >this info! Where in NH do you live? We have a house in Nashua.I am > >really hoping that we can get appts at BCH as soon as possible. My > >Dr. is working on it. Sage is very strong in her muscles. My ped said > >he cannot believe how strong she is for her small stature. I can > >imagine her taking a long time to walk but Im sure she probably will, > >as she has been a bit slower than the normal baby with alot of > >things. I am still hoping that she is just a small baby and will all > >of a sudden catch up. The thing that scares me the most is that she > >hates to eat. However she does eat. It seems that she only throws up > >when she starts to cough after eating or she isnt properly burped. I > >dont beleive it is becasue she cant handle what she is taking cause > >normally she does pretty good. The thing is when she was relaly tiny > >as a new born she expressed no desire to ea! > >> t and would even sleep through the night and not wake up or cry to > >eat. We couldnt understand this as she was so small we thought she > >would want to eat more than the norm. She threw up alot then when she > >would eat to much. She was BF for 5 months.My ped has not mentioned > >anything about increasing her calories or getting medication for her. > >That really annoys me. i will ask him on Thurs at her 7 month check > >up. Well once again thanks for all the wonderful info. > >> > >> Gretchen Canning > >> > >> > " Merrithew, () " <kkm@l...>Date: Tue, 4 Dec 2001 > >14:03:03 -0500 > >> > New and ScaredReply-To: RSS-Support@y... > >> > > >> >Hi Gretchen, > >> > > >> >Welcome to the RSS Support list. I am writing you directly because > >the > >> >support list has been having some technical difficulties and I did > >not want > >> >you to wait too long for an answer. > >> > > >> >First, I know you are scared but I think you can relax a little. > >As far as > >> >anyone knows, RSS is not life threatening. RSS is a genetic > >disorder which > >> >seems to affect appetite and growth. There are also some > >developmental > >> >delays in muscle tone and speech. So your daughter maybe slow to > >walk and > >> >talk but she will. So you might want to contact any Early > >Intervention > >> >services to see if you can start with physical or occupational > >therapy and > >> >maybe later speech therapy. > >> > > >> >Second, my son is 4 1/2. He was diagnosed with RSS when he was > >about a year > >> >old. He too did not eat a lot. Poor appetite is the one of the > >most common > >> >characteristics of RSS. I would suggest letting your daughter eat > >as much as > >> >she can but don't try and force her. As you have observed, she > >will just > >> >throw up and food on the floor isn't doing her any good. My son > >did not walk > >> >until he was almost 20 months and he did not talk until he was > >about 3 1/2. > >> >He is doing great now and he receives speech and O/T weekly. He is > >in > >> >preschool. He is the smallest in his class but he is a very happy > >healthy > >> >boy who is dong great ( biased dad's opinion). > >> > > >> >There are a few things that can be done. First, try and increase > >the calorie > >> >density of your daughters food ( more calories per ounce). You can > >do this > >> >by adding small amounts of oil ( canola etc.) or butter to her > >formula. You > >> >can ask you your doctor to recommend a higher calorie formula. > >Also, ask > >> >your doctor about seeing nutritionist. Maybe they can recommend > >polycose. A > >> >tasteless food supplement that boosts calories. > >> > > >> >At some point you may have to consider growth hormone. It is > >probably too > >> >early to tell and there is plenty of time for that decision. We > >can bury > >> >you with info when the time comes for that. > >> > > >> >You mentioned you live in Bermuda and will be traveling to the US > >for a > >> >doctor. I can recommend several on both sides of the ocean. > >> > > >> >We live in NH and we go to Boston for our son. We used to go to > >Boston > >> >Children's but his doctor moved across the street to the Joslin > >Diabetes > >> >Clinic. Her name is Dr. Alyne Ricker. She is wonderful but > >conservative > >> >especially when it comes to using growth hormone. In fact all the > >doctors at > >> >Boston Children's are conservative about prescribing growth > >hormone. Others > >> >on this list in the Boston Area see a Dr. Ingrid Holm at Boston > >Children's. > >> > > >> >Dr. Ricker can be reached at . > >> > > >> >Dr. Holm can be reached at or . She has a > >dual > >> >specialty of endocrinology and genetics. > >> > > >> >If you want to go to New York City, the US expert on RSS is there. > >Her name > >> >is Dr. Harbison. She has a very aggressive approach to treating > >RSS. She is > >> >an excellent doctor but sometimes her bed side manner needs work. > >Dr. > >> >Harbison can be reached at . > >> > > >> >If you want to travel to England, then you can see a Dr. Stanhope > >in London > >> >at the Great Ormond Street Hospital. Their web page is > >> >http://www.ich.bpmf.ac.uk/ Dr. Stanhope is also excellent and has > >written > >> >some of the very few articles that exist on RSS. > >> > > >> >Well, I know this is alot of info all at once. > >> > > >> >I hope it helps and feel free to e-mail me at any time. Please > >note I am > >> >sometimes slow to answer, especially on weekends. > >> > > >> >Ken M > >> > > >> > > >> > > >> > > >> > > >> > > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2001 Report Share Posted December 5, 2001 I will find out Dr. phone number for you. > > >> Hi > > >> > > >> Thank-you so much for all your info and warm welcome. I cant say > > >you made me un scared as I feel more scared than ever reading all > > >this info! Where in NH do you live? We have a house in Nashua.I am > > >really hoping that we can get appts at BCH as soon as possible. My > > >Dr. is working on it. Sage is very strong in her muscles. My ped > said > > >he cannot believe how strong she is for her small stature. I can > > >imagine her taking a long time to walk but Im sure she probably > will, > > >as she has been a bit slower than the normal baby with alot of > > >things. I am still hoping that she is just a small baby and will > all > > >of a sudden catch up. The thing that scares me the most is that she > > >hates to eat. However she does eat. It seems that she only throws > up > > >when she starts to cough after eating or she isnt properly burped. > I > > >dont beleive it is becasue she cant handle what she is taking cause > > >normally she does pretty good. The thing is when she was relaly > tiny > > >as a new born she expressed no desire to ea! > > >> t and would even sleep through the night and not wake up or cry > to > > >eat. We couldnt understand this as she was so small we thought she > > >would want to eat more than the norm. She threw up alot then when > she > > >would eat to much. She was BF for 5 months.My ped has not mentioned > > >anything about increasing her calories or getting medication for > her. > > >That really annoys me. i will ask him on Thurs at her 7 month check > > >up. Well once again thanks for all the wonderful info. > > >> > > >> Gretchen Canning > > >> > > >> > " Merrithew, () " <kkm@l...>Date: Tue, 4 Dec 2001 > > >14:03:03 -0500 > > >> > New and ScaredReply-To: RSS-Support@y... > > >> > > > >> >Hi Gretchen, > > >> > > > >> >Welcome to the RSS Support list. I am writing you directly > because > > >the > > >> >support list has been having some technical difficulties and I > did > > >not want > > >> >you to wait too long for an answer. > > >> > > > >> >First, I know you are scared but I think you can relax a little. > > >As far as > > >> >anyone knows, RSS is not life threatening. RSS is a genetic > > >disorder which > > >> >seems to affect appetite and growth. There are also some > > >developmental > > >> >delays in muscle tone and speech. So your daughter maybe slow to > > >walk and > > >> >talk but she will. So you might want to contact any Early > > >Intervention > > >> >services to see if you can start with physical or occupational > > >therapy and > > >> >maybe later speech therapy. > > >> > > > >> >Second, my son is 4 1/2. He was diagnosed with RSS when he was > > >about a year > > >> >old. He too did not eat a lot. Poor appetite is the one of the > > >most common > > >> >characteristics of RSS. I would suggest letting your daughter > eat > > >as much as > > >> >she can but don't try and force her. As you have observed, she > > >will just > > >> >throw up and food on the floor isn't doing her any good. My son > > >did not walk > > >> >until he was almost 20 months and he did not talk until he was > > >about 3 1/2. > > >> >He is doing great now and he receives speech and O/T weekly. He > is > > >in > > >> >preschool. He is the smallest in his class but he is a very > happy > > >healthy > > >> >boy who is dong great ( biased dad's opinion). > > >> > > > >> >There are a few things that can be done. First, try and increase > > >the calorie > > >> >density of your daughters food ( more calories per ounce). You > can > > >do this > > >> >by adding small amounts of oil ( canola etc.) or butter to her > > >formula. You > > >> >can ask you your doctor to recommend a higher calorie formula. > > >Also, ask > > >> >your doctor about seeing nutritionist. Maybe they can recommend > > >polycose. A > > >> >tasteless food supplement that boosts calories. > > >> > > > >> >At some point you may have to consider growth hormone. It is > > >probably too > > >> >early to tell and there is plenty of time for that decision. We > > >can bury > > >> >you with info when the time comes for that. > > >> > > > >> >You mentioned you live in Bermuda and will be traveling to the > US > > >for a > > >> >doctor. I can recommend several on both sides of the ocean. > > >> > > > >> >We live in NH and we go to Boston for our son. We used to go to > > >Boston > > >> >Children's but his doctor moved across the street to the Joslin > > >Diabetes > > >> >Clinic. Her name is Dr. Alyne Ricker. She is wonderful but > > >conservative > > >> >especially when it comes to using growth hormone. In fact all > the > > >doctors at > > >> >Boston Children's are conservative about prescribing growth > > >hormone. Others > > >> >on this list in the Boston Area see a Dr. Ingrid Holm at Boston > > >Children's. > > >> > > > >> >Dr. Ricker can be reached at . > > >> > > > >> >Dr. Holm can be reached at or . She has > a > > >dual > > >> >specialty of endocrinology and genetics. > > >> > > > >> >If you want to go to New York City, the US expert on RSS is > there. > > >Her name > > >> >is Dr. Harbison. She has a very aggressive approach to treating > > >RSS. She is > > >> >an excellent doctor but sometimes her bed side manner needs > work. > > >Dr. > > >> >Harbison can be reached at . > > >> > > > >> >If you want to travel to England, then you can see a Dr. > Stanhope > > >in London > > >> >at the Great Ormond Street Hospital. Their web page is > > >> >http://www.ich.bpmf.ac.uk/ Dr. Stanhope is also excellent and > has > > >written > > >> >some of the very few articles that exist on RSS. > > >> > > > >> >Well, I know this is alot of info all at once. > > >> > > > >> >I hope it helps and feel free to e-mail me at any time. Please > > >note I am > > >> >sometimes slow to answer, especially on weekends. > > >> > > > >> >Ken M > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > Quote Link to comment Share on other sites More sharing options...
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