Guest guest Posted August 27, 2001 Report Share Posted August 27, 2001 The DS Clinic that we go to is at Cooks Children's Hospital, Nannie Hogan Boyd DS Clinic, Ft. Worth, Tx The Coordinator for the clinic is Sara Stringer at 1-800-266-5514 and they are great to deal with. We go to the DS workshop clinics where we see all of the specialists that we need to see on the same day and while we are there they provide the local support group members to talk with, show us where to go, watch my little girl while I go to the ladies room. I feel much more confident with their care than with our local Pedi Dept. I just know they have more insight in the Down syndrome world than our Pedi Dept. nearby. Good luck, God Bless, GW Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2001 Report Share Posted August 27, 2001 The DS Clinic that we go to is at Cooks Children's Hospital, Nannie Hogan Boyd DS Clinic, Ft. Worth, Tx The Coordinator for the clinic is Sara Stringer at 1-800-266-5514 and they are great to deal with. We go to the DS workshop clinics where we see all of the specialists that we need to see on the same day and while we are there they provide the local support group members to talk with, show us where to go, watch my little girl while I go to the ladies room. I feel much more confident with their care than with our local Pedi Dept. I just know they have more insight in the Down syndrome world than our Pedi Dept. nearby. Good luck, God Bless, GW Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2001 Report Share Posted August 28, 2001 Hi Mandy I live in central Texas - about 4 hours north of Houston. Our pediatrician is not a DS specialist, but he is amazing. He loves and appreciates all children and when I told him that I was expecting a child that I suspected had DS he was so supportive. HE talked with me at length about the positive things to look forward to and he has reassured me all the way. He stays on top of things and does quite a bit of research and will research anything I ask. If you would like his name or other information, please email me privately. We are in a very rural community and I feel blessed to have my ped. Nina had a complete AV canal repair in Cook's Children's in Ft. Worth where I was told by one of the ped cardioliogists that they had asked him to come up and work, but he chooses to stay here. He also reminded me that our doctor does all he does without the support system they have around them in Ft. Worth or any larger city. Cook's Children's also has a DS clinic once a month, by the way. I think it is actually run by a group of doctors independently, but it is associated with Cook's. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2001 Report Share Posted August 28, 2001 Hi Mandy I live in central Texas - about 4 hours north of Houston. Our pediatrician is not a DS specialist, but he is amazing. He loves and appreciates all children and when I told him that I was expecting a child that I suspected had DS he was so supportive. HE talked with me at length about the positive things to look forward to and he has reassured me all the way. He stays on top of things and does quite a bit of research and will research anything I ask. If you would like his name or other information, please email me privately. We are in a very rural community and I feel blessed to have my ped. Nina had a complete AV canal repair in Cook's Children's in Ft. Worth where I was told by one of the ped cardioliogists that they had asked him to come up and work, but he chooses to stay here. He also reminded me that our doctor does all he does without the support system they have around them in Ft. Worth or any larger city. Cook's Children's also has a DS clinic once a month, by the way. I think it is actually run by a group of doctors independently, but it is associated with Cook's. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2010 Report Share Posted January 14, 2010 3 out of the 4 allergists I have seen were knowledgeable about ASA desensitization. It is tiresome to shop doctors for me. I can't get any information unless I pay for the visit. Good luck, Pam Jim wrote: > Dear stuffy friends, > > After 8 years and 4 surguries, I am ready to try ASA desense. I am having difficulty locating a dr nearby who will perform one. Might anyone here know of an MD in central California (I live in Monterey) that has experience with this procedure. I am SO ready. Any info would be greatly appreciated. > > Thanks > Jim A > > > > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2010 Report Share Posted January 14, 2010 Your ENT should be able to give you a referral. that's how I found my allergist and subsequent desensitizationBianca > Dear stuffy friends, > > After 8 years and 4 surguries, I am ready to try ASA desense. I am having difficulty locating a dr nearby who will perform one. Might anyone here know of an MD in central California (I live in Monterey) that has experience with this procedure. I am SO ready. Any info would be greatly appreciated. > > Thanks > Jim A > > > > > > ------------ --------- --------- ------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2010 Report Share Posted January 14, 2010 Hi Jim, I don't know much about your local options (I'm Canadian) but I know the ASA desense procedure was pioneered at the Scripps Clinic in La Jolla. I found out about desensitization while reading an article on AERD written by their doctors. Here's a link to the Scripps site: http://www.scripps.org/locations/scripps-clinic Good luck!! > > Dear stuffy friends, > > After 8 years and 4 surguries, I am ready to try ASA desense. I am having difficulty locating a dr nearby who will perform one. Might anyone here know of an MD in central California (I live in Monterey) that has experience with this procedure. I am SO ready. Any info would be greatly appreciated. > > Thanks > Jim A > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2010 Report Share Posted May 9, 2010 I'm looking for a doctor for my son. I can not wait any longer to get him checked out. I live in Chicago so any doctor will do all long as it is not like 2 hours away. Lol. I went to my RA doctor friday and he gave me a name of one at the U of C. Her name is Dr Wagner-Weiner. Does anyone know or go to her? Any info will help. On Sat I took my daughter to the doctor because Fri night she woke up not breathing right. We called 911 and the hospital told us it was croup. It didn't seem like she had a breathing problem from croup. Long story short…On Sat the resident doctor said it was from a peanut allergy. When talking to this doctor (3rd year resident) he said he just told a family on Fri that their child has JIR. I felt so bad. When I left I thought maybe I should take Josh (10 yrs old) to this guy to just get the ball rolling until I can get into the specialist. What do you all think about this? Oh by the way I was trying to get Josh to hurry in the shower so I decided to just help him and I grabbed his wrist to wash under his arm and he yelled that I was hurting him. I said oh please I didn't grab you hard and he said it was when you pushed down right here. He was showing me his joint. So I pushed again and he yelled again. Lol. I asked if that hurt to in the mornings he said no. I asked if it hurt to move he said no. I said jokingly how do you know if it hurts if you never push on it. Lol. Every morning he wakes up telling me his ankles hurt him. He says he can't run yet cause they hurt. My son has ADHD and the H part is a very big part of that. Lol. Thanks for reading, Cheli Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2010 Report Share Posted May 10, 2010 My son saw the rheumy's from University of Chicago. They were really good. His first one left and went to Duke, and she sent us to Dr Spencer, who has since moved on to a children's hospital in Ohio. Dr Wagner-Weiner was also part of the group. She is obviously still there. saw the rheumy's at the offices they had at Hope Children's Hospital, which was nice so that we did not have to go down to U of C itself. He received excellent care and the drs were very aggressive at that time with treatment. I would definitely recommend them. Being that it is a university, and thus a teaching hospital, the drs are up to the minute with how to treat the disease, in my opinion. My son's first noticable symptoms were in his ankles. He seemed to lose the ability to run just all of a sudden. It took over two years of treatment to get that back. Good luck, Michele ( 23, spondy) Looking for a doctor I'm looking for a doctor for my son. I can not wait any longer to get him checked out. I live in Chicago so any doctor will do all long as it is not like 2 hours away. Lol. I went to my RA doctor friday and he gave me a name of one at the U of C. Her name is Dr Wagner-Weiner. Does anyone know or go to her? Any info will help. On Sat I took my daughter to the doctor because Fri night she woke up not breathing right. We called 911 and the hospital told us it was croup. It didn't seem like she had a breathing problem from croup. Long story short...On Sat the resident doctor said it was from a peanut allergy. When talking to this doctor (3rd year resident) he said he just told a family on Fri that their child has JIR. I felt so bad. When I left I thought maybe I should take Josh (10 yrs old) to this guy to just get the ball rolling until I can get into the specialist. What do you all think about this? Oh by the way I was trying to get Josh to hurry in the shower so I decided to just help him and I grabbed his wrist to wash under his arm and he yelled that I was hurting him. I said oh please I didn't grab you hard and he said it was when you pushed down right here. He was showing me his joint. So I pushed again and he yelled again. Lol. I asked if that hurt to in the mornings he said no. I asked if it hurt to move he said no. I said jokingly how do you know if it hurts if you never push on it. Lol. Every morning he wakes up telling me his ankles hurt him. He says he can't run yet cause they hurt. My son has ADHD and the H part is a very big part of that. Lol. Thanks for reading, Cheli ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2010 Report Share Posted May 10, 2010 Thank you . I'm going to call the University and see what they say and if they will see my son. Thanks, Cheli Looking for a doctor I'm looking for a doctor for my son. I can not wait any longer to get him checked out. I live in Chicago so any doctor will do all long as it is not like 2 hours away. Lol. I went to my RA doctor friday and he gave me a name of one at the U of C. Her name is Dr Wagner-Weiner. Does anyone know or go to her? Any info will help. On Sat I took my daughter to the doctor because Fri night she woke up not breathing right. We called 911 and the hospital told us it was croup. It didn't seem like she had a breathing problem from croup. Long story short...On Sat the resident doctor said it was from a peanut allergy. When talking to this doctor (3rd year resident) he said he just told a family on Fri that their child has JIR. I felt so bad. When I left I thought maybe I should take Josh (10 yrs old) to this guy to just get the ball rolling until I can get into the specialist. What do you all think about this? Oh by the way I was trying to get Josh to hurry in the shower so I decided to just help him and I grabbed his wrist to wash under his arm and he yelled that I was hurting him. I said oh please I didn't grab you hard and he said it was when you pushed down right here. He was showing me his joint. So I pushed again and he yelled again. Lol. I asked if that hurt to in the mornings he said no. I asked if it hurt to move he said no. I said jokingly how do you know if it hurts if you never push on it. Lol. Every morning he wakes up telling me his ankles hurt him. He says he can't run yet cause they hurt. My son has ADHD and the H part is a very big part of that. Lol. Thanks for reading, Cheli ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2010 Report Share Posted May 11, 2010 Have you tried the Shriners Hospital in Chicago? THey should have Pediatric Rhem. and there is no charge at all. Maureen ________________________________ From: " hlhsinfo@... " <hlhsinfo@...> JRA < > Sent: Sun, May 9, 2010 11:00:06 AM Subject: Looking for a doctor I'm looking for a doctor for my son. I can not wait any longer to get him checked out. I live in Chicago so any doctor will do all long as it is not like 2 hours away. Lol. I went to my RA doctor friday and he gave me a name of one at the U of C. Her name is Dr Wagner-Weiner. Does anyone know or go to her? Any info will help. On Sat I took my daughter to the doctor because Fri night she woke up not breathing right. We called 911 and the hospital told us it was croup. It didn't seem like she had a breathing problem from croup. Long story short…On Sat the resident doctor said it was from a peanut allergy. When talking to this doctor (3rd year resident) he said he just told a family on Fri that their child has JIR. I felt so bad. When I left I thought maybe I should take Josh (10 yrs old) to this guy to just get the ball rolling until I can get into the specialist. What do you all think about this? Oh by the way I was trying to get Josh to hurry in the shower so I decided to just help him and I grabbed his wrist to wash under his arm and he yelled that I was hurting him. I said oh please I didn't grab you hard and he said it was when you pushed down right here. He was showing me his joint. So I pushed again and he yelled again. Lol. I asked if that hurt to in the mornings he said no. I asked if it hurt to move he said no. I said jokingly how do you know if it hurts if you never push on it. Lol. Every morning he wakes up telling me his ankles hurt him. He says he can't run yet cause they hurt. My son has ADHD and the H part is a very big part of that. Lol. Thanks for reading, Cheli ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2010 Report Share Posted May 11, 2010 We go there for Josh's Scoliosis. We have to go there June 1st for it. I'm going to bring it up again. I told them when we first went 2 years ago when we went there the first time for him when they asked for medical history of the parents. I told them I had JRA and they asked him if he hurt and Josh said no. Josh sees an Ortho there. I'm going to see what his doctor says when I tell him we are looking into JRA for Josh and find out of they have a peds one there. I have read on here that Ortho's don't always catch JRA. We will see. Thanks for the thought. Cheli Looking for a doctor I'm looking for a doctor for my son. I can not wait any longer to get him checked out. I live in Chicago so any doctor will do all long as it is not like 2 hours away. Lol. I went to my RA doctor friday and he gave me a name of one at the U of C. Her name is Dr Wagner-Weiner. Does anyone know or go to her? Any info will help. On Sat I took my daughter to the doctor because Fri night she woke up not breathing right. We called 911 and the hospital told us it was croup. It didn't seem like she had a breathing problem from croup. Long story short…On Sat the resident doctor said it was from a peanut allergy. When talking to this doctor (3rd year resident) he said he just told a family on Fri that their child has JIR. I felt so bad. When I left I thought maybe I should take Josh (10 yrs old) to this guy to just get the ball rolling until I can get into the specialist. What do you all think about this? Oh by the way I was trying to get Josh to hurry in the shower so I decided to just help him and I grabbed his wrist to wash under his arm and he yelled that I was hurting him. I said oh please I didn't grab you hard and he said it was when you pushed down right here. He was showing me his joint. So I pushed again and he yelled again. Lol. I asked if that hurt to in the mornings he said no. I asked if it hurt to move he said no. I said jokingly how do you know if it hurts if you never push on it. Lol. Every morning he wakes up telling me his ankles hurt him. He says he can't run yet cause they hurt. My son has ADHD and the H part is a very big part of that. Lol. Thanks for reading, Cheli ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2010 Report Share Posted May 11, 2010 On the ortho issue, my son saw two ortho's - one of them a specialist at Northwestern - and neither one diagnosed the jra, after seven months of visits. Going to the rheumy is where he was given relief. My son's second rheumy, Dr Spencer, also worked at the Shriner's hospital and at LaRabida. I suppose we could have seen him there as well. We have good insurance which covered all of Chris' care, with only $20 co-pays for visits, so seeing him at our local hospital was much better than going downtown. Good luck, Michele ( 23, spondy) ________________________________ From: [mailto: ] On Behalf Of hlhsinfo@... Sent: Tuesday, May 11, 2010 7:17 AM JRA Subject: Re: Looking for a doctor We go there for Josh's Scoliosis. We have to go there June 1st for it. I'm going to bring it up again. I told them when we first went 2 years ago when we went there the first time for him when they asked for medical history of the parents. I told them I had JRA and they asked him if he hurt and Josh said no. Josh sees an Ortho there. I'm going to see what his doctor says when I tell him we are looking into JRA for Josh and find out of they have a peds one there. I have read on here that Ortho's don't always catch JRA. We will see. Thanks for the thought. Cheli Looking for a doctor I'm looking for a doctor for my son. I can not wait any longer to get him checked out. I live in Chicago so any doctor will do all long as it is not like 2 hours away. Lol. I went to my RA doctor friday and he gave me a name of one at the U of C. Her name is Dr Wagner-Weiner. Does anyone know or go to her? Any info will help. On Sat I took my daughter to the doctor because Fri night she woke up not breathing right. We called 911 and the hospital told us it was croup. It didn't seem like she had a breathing problem from croup. Long story short...On Sat the resident doctor said it was from a peanut allergy. When talking to this doctor (3rd year resident) he said he just told a family on Fri that their child has JIR. I felt so bad. When I left I thought maybe I should take Josh (10 yrs old) to this guy to just get the ball rolling until I can get into the specialist. What do you all think about this? Oh by the way I was trying to get Josh to hurry in the shower so I decided to just help him and I grabbed his wrist to wash under his arm and he yelled that I was hurting him. I said oh please I didn't grab you hard and he said it was when you pushed down right here. He was showing me his joint. So I pushed again and he yelled again. Lol. I asked if that hurt to in the mornings he said no. I asked if it hurt to move he said no. I said jokingly how do you know if it hurts if you never push on it. Lol. Every morning he wakes up telling me his ankles hurt him. He says he can't run yet cause they hurt. My son has ADHD and the H part is a very big part of that. Lol. Thanks for reading, Cheli ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2010 Report Share Posted May 11, 2010 I just left a message with Shriner's to see if they have anyone there that will see my son. I'm still waiting to for a call back from LaRabida for Dr. Wagner-Weiner. I think that's her name. I have been calling everywhere the last 2 days I'm starting to get the names mixed up. LOL As soon as I know something about anything I will post it on here. I am just stressing trying to find someone for Josh and now for Bella. It all hits here at once. LOL Thanks, Cheli ________________________________ From: " Tepper, Michele " <MTepper@...> " " < > Sent: Tue, May 11, 2010 9:50:38 AM Subject: RE: Looking for a doctor  On the ortho issue, my son saw two ortho's - one of them a specialist at Northwestern - and neither one diagnosed the jra, after seven months of visits. Going to the rheumy is where he was given relief. My son's second rheumy, Dr Spencer, also worked at the Shriner's hospital and at LaRabida. I suppose we could have seen him there as well. We have good insurance which covered all of Chris' care, with only $20 co-pays for visits, so seeing him at our local hospital was much better than going downtown. Good luck, Michele ( 23, spondy) ____________ _________ _________ __ From: @group s.com [mailto: @group s.com] On Behalf Of hlhsinfo (DOT) com Sent: Tuesday, May 11, 2010 7:17 AM JRA Subject: Re: Looking for a doctor We go there for Josh's Scoliosis. We have to go there June 1st for it. I'm going to bring it up again. I told them when we first went 2 years ago when we went there the first time for him when they asked for medical history of the parents. I told them I had JRA and they asked him if he hurt and Josh said no. Josh sees an Ortho there. I'm going to see what his doctor says when I tell him we are looking into JRA for Josh and find out of they have a peds one there. I have read on here that Ortho's don't always catch JRA. We will see. Thanks for the thought. Cheli Looking for a doctor I'm looking for a doctor for my son. I can not wait any longer to get him checked out. I live in Chicago so any doctor will do all long as it is not like 2 hours away. Lol. I went to my RA doctor friday and he gave me a name of one at the U of C. Her name is Dr Wagner-Weiner. Does anyone know or go to her? Any info will help. On Sat I took my daughter to the doctor because Fri night she woke up not breathing right. We called 911 and the hospital told us it was croup. It didn't seem like she had a breathing problem from croup. Long story short...On Sat the resident doctor said it was from a peanut allergy. When talking to this doctor (3rd year resident) he said he just told a family on Fri that their child has JIR. I felt so bad. When I left I thought maybe I should take Josh (10 yrs old) to this guy to just get the ball rolling until I can get into the specialist. What do you all think about this? Oh by the way I was trying to get Josh to hurry in the shower so I decided to just help him and I grabbed his wrist to wash under his arm and he yelled that I was hurting him. I said oh please I didn't grab you hard and he said it was when you pushed down right here. He was showing me his joint. So I pushed again and he yelled again. Lol. I asked if that hurt to in the mornings he said no. I asked if it hurt to move he said no. I said jokingly how do you know if it hurts if you never push on it. Lol. Every morning he wakes up telling me his ankles hurt him. He says he can't run yet cause they hurt. My son has ADHD and the H part is a very big part of that. Lol. Thanks for reading, Cheli ------------ --------- --------- ------ Quote Link to comment Share on other sites More sharing options...
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