Guest guest Posted August 11, 2010 Report Share Posted August 11, 2010 We will be there definetly on August the 23rd and also on September 13th and 14th. During those visits we will arrive on the 12th. I know we will also be back November 8-10 and one group of appointments in October but I am not sure dates on those yet.  We really like Dr Bleesing. He immediately said I think your daughter is aspirating because her infections are limited mainly to respiratory and he also wanted us to reconsider the possibility of Cystic Fibrosis despite the negative sweat tests. Our nurse coordinator in immunology says he likes to take things piece by piece and that is definetly what he is doing with us. He did one set of testing but she said he would actually do further testing. Her immune responses to vaccines were not what he wanted to see so he suggested getting her revaccinated and then retesting in 4-6 weeks. However, Lillian will be on Methotrexate starting on Friday so it would actually not do any good to go that route. When he found this out, he said he was going to have to get with some others and talk and get back with us. I liked that though. I like a doctor willing to say I am not sure what to do but I will figure it out.  We were told that Dr is semi-retired so we were really thrilled that he even accepted Lillian as a patient of his. We are hoping he can piece some things together for us. What kinds of things does he want to know in the appointment though?  Who do you use in Rheumatology? We were told by a doctor locally that if we have to use Pulmonology that Dr Cotten is amazing! My daughter has definite airway issues that has shown up on bronchoscopy. She continues to get frequent respiratory illnesses and just can't get rid of them once she does get them!  We are just starting our journey at Cincinnati Children's and learning quickly how little our doctors here knows and how mismanaged her care has really been from the beginning. We are loving the hospital there!!!  Does anyone have experience with the Mc House there? Hotels are getting EXPENSIVE! ________________________________ From: kristinz4 <kristin-smith@...> Sent: Wed, August 11, 2010 8:26:20 AM Subject: Cincinnati Children's  I thought I'd highjack the posts regarding Cincinnati Children's hospital, I wanted to chime in and say that we are there regularly, so let me know if any of you are heading that way! We will actually be there tomorrow. We also see Dr. Bleesing for immunology and he was our primary transplant doctor. We think he's a genius and don't believe Conner would have been diagnosed with NEMO if not for him. Cincinnati has the ability to do extensive immune testing and I highly recommend going there for parents who are searching for a more precise diagnosis. Bleesing was the one who finally diagnosed the complement deficiency in my husband and children. None of the other immunologists tested for it, either due to lack of testing availability or lack of knowledge. My family also has some other irregularities in immune function, but thankfully nothing too serious and everyone has been quite healthy in recent years thanks to some of the environmental changes Bleesing suggested. We don't see Dr. , but he is a national legend when it comes to bone marrow failure issues. People come from all over to see him. He did Conner's bone marrow biopsy before transplant and is the sweetest guy (although semi-retired now). The other specialty we love there is Pulmonology, I highly recommend Dr. Wood. Thankfully we haven't needed too many other specialties, other than urology, dermatology and rheumatology. I can recommend names in those departments, if needed. Hope to catch up with some of you there! (NEMO carrier) Mom to Hayden (16-unknown PID) Evan (16-unknown PID) Conner (16-NEMO; bone marrow transplant 8/17/07) Kelsey (14-unknown PID and NEMO carrier) Wife to (unknown PID) www.caringbridge.org/visit/smithkids Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2010 Report Share Posted August 11, 2010 Hi , I'll find out tomorrow when we are back there, I'll let you know if our paths are going to cross. We love Bleesing too, I trust him more than any other doctor I've encountered. I've learned over the years that if he's worried about something then I should be really worried, but if he's not, then I don't give it a second thought. Our son Conner had been diagnosed with CVID by two other immunologists in the Midwest. At our first visit with Dr. Bleesing, he told us that although he didn't know what Conner had, it wasn't CVID. He took extra blood that day and froze it. He started methodically testing and it took almost 18 months for him to ultimately diagnose NEMO (Conner had none of the physical traits, Bleesing was just following the trail the labs were leading). It took several months to find a bone marrow donor after that. Next week will be his 3 year anniversary for transplant and he is considered cured of NEMO at this point. It doesn't surprise me that Bleesing is contacting other specialists on your behalf, he contacted doctors/scientists all over the country regarding our family. We saw Dr. in Rheumatology. We liked him, but our daughter isn't needing rheumy any longer. Dr. Bleesing had diagnosed her with a type of periodic fever syndrome. Dr. agreed with the dx and once she started treatment most of her symptoms went away and she hasn't been back. We've never seen in clinic, so I'm not sure what he will be needing. I think we saw Dr. Cotton once, I think he's ENT maybe? Make sure you contact Guest Services about hotels, they have discounted rates (1-888-894-1374). I've never stayed at RMH, so I can't really help you there. During transplant they coordinated an apartment for us. Also, if you talk to Guest Services, ask about complimentary tickets to local places like the zoo or Kings Island, if you're interested in that sort of thing. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2010 Report Share Posted August 11, 2010 They froze extra blood for Lillian too. I had never heard of that being done before. That is SO wonderful that he is now cured!  We see Dr Brunner in rheumatology along with the OT, PT there. My daughter has juvenile idiopathic polyarticular arthritis. Lillian starts methotrexate on Friday for the autoimmune thing and we are all very nervous about it. I have heard that med can be hard.  Dr Cotton is an ENT who specializes in the airway. You are absolutely right!  We have stayed at the Candlewood Suites which we loved for 52 per night at the hospital rate. This last visit we stayed at the Hannaford Suites and I really did not care much for the area and such. There were only expensive restaurants on the exit, no Walmart, no Walgreens, not much of anything we needed. I will def ask about complimentary tickets again. We went to the museum center this last time. The kids LOVED the Natural History and Science Museum. This next trip will only be a day trip so thankfully not spending the night but it is a LONG trip without spending the night having to leave home at like 5am and a rush to get there. We see the neuro in the Northern KY office and then going to the hospital to see and rheumatology. LONG day with having to get up so early but I guess you do what you have to do! Maybe they will have tickets to Kings Island sometime. That would be fun! The zoo was just too HOT this last visit.    ________________________________ From: kristinz4 <kristin-smith@...> Sent: Wed, August 11, 2010 1:41:57 PM Subject: Re: Cincinnati Children's  Hi , I'll find out tomorrow when we are back there, I'll let you know if our paths are going to cross. We love Bleesing too, I trust him more than any other doctor I've encountered. I've learned over the years that if he's worried about something then I should be really worried, but if he's not, then I don't give it a second thought. Our son Conner had been diagnosed with CVID by two other immunologists in the Midwest. At our first visit with Dr. Bleesing, he told us that although he didn't know what Conner had, it wasn't CVID. He took extra blood that day and froze it. He started methodically testing and it took almost 18 months for him to ultimately diagnose NEMO (Conner had none of the physical traits, Bleesing was just following the trail the labs were leading). It took several months to find a bone marrow donor after that. Next week will be his 3 year anniversary for transplant and he is considered cured of NEMO at this point. It doesn't surprise me that Bleesing is contacting other specialists on your behalf, he contacted doctors/scientists all over the country regarding our family. We saw Dr. in Rheumatology. We liked him, but our daughter isn't needing rheumy any longer. Dr. Bleesing had diagnosed her with a type of periodic fever syndrome. Dr. agreed with the dx and once she started treatment most of her symptoms went away and she hasn't been back. We've never seen in clinic, so I'm not sure what he will be needing. I think we saw Dr. Cotton once, I think he's ENT maybe? Make sure you contact Guest Services about hotels, they have discounted rates (1-888-894-1374). I've never stayed at RMH, so I can't really help you there. During transplant they coordinated an apartment for us. Also, if you talk to Guest Services, ask about complimentary tickets to local places like the zoo or Kings Island, if you're interested in that sort of thing. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2010 Report Share Posted August 11, 2010 are you doing shots or pills? Ursula Mom to (17) and Macey (15) Macey's Caringbridge site Macey's Blog ________________________________ From: Murrell <murrell.courtney@...> Sent: Wed, August 11, 2010 1:58:29 PM Subject: Re: Re: Cincinnati Children's They froze extra blood for Lillian too. I had never heard of that being done before. That is SO wonderful that he is now cured! We see Dr Brunner in rheumatology along with the OT, PT there. My daughter has juvenile idiopathic polyarticular arthritis. Lillian starts methotrexate on Friday for the autoimmune thing and we are all very nervous about it. I have heard that med can be hard. Dr Cotton is an ENT who specializes in the airway. You are absolutely right! We have stayed at the Candlewood Suites which we loved for 52 per night at the hospital rate. This last visit we stayed at the Hannaford Suites and I really did not care much for the area and such. There were only expensive restaurants on the exit, no Walmart, no Walgreens, not much of anything we needed. I will def ask about complimentary tickets again. We went to the museum center this last time. The kids LOVED the Natural History and Science Museum. This next trip will only be a day trip so thankfully not spending the night but it is a LONG trip without spending the night having to leave home at like 5am and a rush to get there. We see the neuro in the Northern KY office and then going to the hospital to see and rheumatology. LONG day with having to get up so early but I guess you do what you have to do! Maybe they will have tickets to Kings Island sometime. That would be fun! The zoo was just too HOT this last visit. ________________________________ From: kristinz4 <kristin-smith@...> Sent: Wed, August 11, 2010 1:41:57 PM Subject: Re: Cincinnati Children's Hi , I'll find out tomorrow when we are back there, I'll let you know if our paths are going to cross. We love Bleesing too, I trust him more than any other doctor I've encountered. I've learned over the years that if he's worried about something then I should be really worried, but if he's not, then I don't give it a second thought. Our son Conner had been diagnosed with CVID by two other immunologists in the Midwest. At our first visit with Dr. Bleesing, he told us that although he didn't know what Conner had, it wasn't CVID. He took extra blood that day and froze it. He started methodically testing and it took almost 18 months for him to ultimately diagnose NEMO (Conner had none of the physical traits, Bleesing was just following the trail the labs were leading). It took several months to find a bone marrow donor after that. Next week will be his 3 year anniversary for transplant and he is considered cured of NEMO at this point. It doesn't surprise me that Bleesing is contacting other specialists on your behalf, he contacted doctors/scientists all over the country regarding our family. We saw Dr. in Rheumatology. We liked him, but our daughter isn't needing rheumy any longer. Dr. Bleesing had diagnosed her with a type of periodic fever syndrome. Dr. agreed with the dx and once she started treatment most of her symptoms went away and she hasn't been back. We've never seen in clinic, so I'm not sure what he will be needing. I think we saw Dr. Cotton once, I think he's ENT maybe? Make sure you contact Guest Services about hotels, they have discounted rates (1-888-894-1374). I've never stayed at RMH, so I can't really help you there. During transplant they coordinated an apartment for us. Also, if you talk to Guest Services, ask about complimentary tickets to local places like the zoo or Kings Island, if you're interested in that sort of thing. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2010 Report Share Posted August 11, 2010 Shots. We were told it would be less likely to make her GI issues worse with the shots. I haven't heard great things about either though. ________________________________ From: Ursula Holleman <uahollem@...> Sent: Wed, August 11, 2010 2:06:29 PM Subject: Re: Re: Cincinnati Children's  are you doing shots or pills? Ursula Mom to (17) and Macey (15) Macey's Caringbridge site Macey's Blog ________________________________ From: Murrell <murrell.courtney@...> Sent: Wed, August 11, 2010 1:58:29 PM Subject: Re: Re: Cincinnati Children's They froze extra blood for Lillian too. I had never heard of that being done before. That is SO wonderful that he is now cured! We see Dr Brunner in rheumatology along with the OT, PT there. My daughter has juvenile idiopathic polyarticular arthritis. Lillian starts methotrexate on Friday for the autoimmune thing and we are all very nervous about it. I have heard that med can be hard. Dr Cotton is an ENT who specializes in the airway. You are absolutely right! We have stayed at the Candlewood Suites which we loved for 52 per night at the hospital rate. This last visit we stayed at the Hannaford Suites and I really did not care much for the area and such. There were only expensive restaurants on the exit, no Walmart, no Walgreens, not much of anything we needed. I will def ask about complimentary tickets again. We went to the museum center this last time. The kids LOVED the Natural History and Science Museum. This next trip will only be a day trip so thankfully not spending the night but it is a LONG trip without spending the night having to leave home at like 5am and a rush to get there. We see the neuro in the Northern KY office and then going to the hospital to see and rheumatology. LONG day with having to get up so early but I guess you do what you have to do! Maybe they will have tickets to Kings Island sometime. That would be fun! The zoo was just too HOT this last visit. ________________________________ From: kristinz4 <kristin-smith@...> Sent: Wed, August 11, 2010 1:41:57 PM Subject: Re: Cincinnati Children's Hi , I'll find out tomorrow when we are back there, I'll let you know if our paths are going to cross. We love Bleesing too, I trust him more than any other doctor I've encountered. I've learned over the years that if he's worried about something then I should be really worried, but if he's not, then I don't give it a second thought. Our son Conner had been diagnosed with CVID by two other immunologists in the Midwest. At our first visit with Dr. Bleesing, he told us that although he didn't know what Conner had, it wasn't CVID. He took extra blood that day and froze it. He started methodically testing and it took almost 18 months for him to ultimately diagnose NEMO (Conner had none of the physical traits, Bleesing was just following the trail the labs were leading). It took several months to find a bone marrow donor after that. Next week will be his 3 year anniversary for transplant and he is considered cured of NEMO at this point. It doesn't surprise me that Bleesing is contacting other specialists on your behalf, he contacted doctors/scientists all over the country regarding our family. We saw Dr. in Rheumatology. We liked him, but our daughter isn't needing rheumy any longer. Dr. Bleesing had diagnosed her with a type of periodic fever syndrome. Dr. agreed with the dx and once she started treatment most of her symptoms went away and she hasn't been back. We've never seen in clinic, so I'm not sure what he will be needing. I think we saw Dr. Cotton once, I think he's ENT maybe? Make sure you contact Guest Services about hotels, they have discounted rates (1-888-894-1374). I've never stayed at RMH, so I can't really help you there. During transplant they coordinated an apartment for us. Also, if you talk to Guest Services, ask about complimentary tickets to local places like the zoo or Kings Island, if you're interested in that sort of thing. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2010 Report Share Posted August 11, 2010 Shots. We were told it would be less likely to make her GI issues worse with the shots. I haven't heard great things about either though. ________________________________ From: Ursula Holleman <uahollem@...> Sent: Wed, August 11, 2010 2:06:29 PM Subject: Re: Re: Cincinnati Children's  are you doing shots or pills? Ursula Mom to (17) and Macey (15) Macey's Caringbridge site Macey's Blog ________________________________ From: Murrell <murrell.courtney@...> Sent: Wed, August 11, 2010 1:58:29 PM Subject: Re: Re: Cincinnati Children's They froze extra blood for Lillian too. I had never heard of that being done before. That is SO wonderful that he is now cured! We see Dr Brunner in rheumatology along with the OT, PT there. My daughter has juvenile idiopathic polyarticular arthritis. Lillian starts methotrexate on Friday for the autoimmune thing and we are all very nervous about it. I have heard that med can be hard. Dr Cotton is an ENT who specializes in the airway. You are absolutely right! We have stayed at the Candlewood Suites which we loved for 52 per night at the hospital rate. This last visit we stayed at the Hannaford Suites and I really did not care much for the area and such. There were only expensive restaurants on the exit, no Walmart, no Walgreens, not much of anything we needed. I will def ask about complimentary tickets again. We went to the museum center this last time. The kids LOVED the Natural History and Science Museum. This next trip will only be a day trip so thankfully not spending the night but it is a LONG trip without spending the night having to leave home at like 5am and a rush to get there. We see the neuro in the Northern KY office and then going to the hospital to see and rheumatology. LONG day with having to get up so early but I guess you do what you have to do! Maybe they will have tickets to Kings Island sometime. That would be fun! The zoo was just too HOT this last visit. ________________________________ From: kristinz4 <kristin-smith@...> Sent: Wed, August 11, 2010 1:41:57 PM Subject: Re: Cincinnati Children's Hi , I'll find out tomorrow when we are back there, I'll let you know if our paths are going to cross. We love Bleesing too, I trust him more than any other doctor I've encountered. I've learned over the years that if he's worried about something then I should be really worried, but if he's not, then I don't give it a second thought. Our son Conner had been diagnosed with CVID by two other immunologists in the Midwest. At our first visit with Dr. Bleesing, he told us that although he didn't know what Conner had, it wasn't CVID. He took extra blood that day and froze it. He started methodically testing and it took almost 18 months for him to ultimately diagnose NEMO (Conner had none of the physical traits, Bleesing was just following the trail the labs were leading). It took several months to find a bone marrow donor after that. Next week will be his 3 year anniversary for transplant and he is considered cured of NEMO at this point. It doesn't surprise me that Bleesing is contacting other specialists on your behalf, he contacted doctors/scientists all over the country regarding our family. We saw Dr. in Rheumatology. We liked him, but our daughter isn't needing rheumy any longer. Dr. Bleesing had diagnosed her with a type of periodic fever syndrome. Dr. agreed with the dx and once she started treatment most of her symptoms went away and she hasn't been back. We've never seen in clinic, so I'm not sure what he will be needing. I think we saw Dr. Cotton once, I think he's ENT maybe? Make sure you contact Guest Services about hotels, they have discounted rates (1-888-894-1374). I've never stayed at RMH, so I can't really help you there. During transplant they coordinated an apartment for us. Also, if you talk to Guest Services, ask about complimentary tickets to local places like the zoo or Kings Island, if you're interested in that sort of thing. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2010 Report Share Posted August 11, 2010 We've done methotrexate. My son couldn't tolerate it due to severe nausea, even with zofran around the clock. But he had lots of nausea from his GI disease even before the MTX, so our experience might not be typical. I gave Ben his shots. I wouldn't recommend giving ones first injection to ones child! We see GI and immuno in Cinci. Cindi Sent from my iPhone On Aug 11, 2010, at 2:52 PM, Murrell <murrell.courtney@... > wrote: > Shots. We were told it would be less likely to make her GI issues > worse with > the shots. I haven't heard great things about either though. > > > > ________________________________ > From: Ursula Holleman <uahollem@...> > > Sent: Wed, August 11, 2010 2:06:29 PM > Subject: Re: Re: Cincinnati Children's > > > are you doing shots or pills? > Ursula > Mom to (17) and Macey (15) > Macey's Caringbridge site > > Macey's Blog > > ________________________________ > From: Murrell <murrell.courtney@...> > > Sent: Wed, August 11, 2010 1:58:29 PM > Subject: Re: Re: Cincinnati Children's > > They froze extra blood for Lillian too. I had never heard of that > being done > before. > > That is SO wonderful that he is now cured! > > We see Dr Brunner in rheumatology along with the OT, PT there. My > daughter has > juvenile idiopathic polyarticular arthritis. Lillian starts > methotrexate on > Friday for the autoimmune thing and we are all very nervous about > it. I have > heard that med can be hard. > > Dr Cotton is an ENT who specializes in the airway. You are > absolutely right! > > We have stayed at the Candlewood Suites which we loved for 52 per > night at the > hospital rate. This last visit we stayed at the Hannaford Suites and > I really > did not care much for the area and such. There were only expensive > restaurants > on the exit, no Walmart, no Walgreens, not much of anything we > needed. I will > def ask about complimentary tickets again. We went to the museum > center this > last time. The kids LOVED the Natural History and Science Museum. > This next trip > > will only be a day trip so thankfully not spending the night but it > is a LONG > trip without spending the night having to leave home at like 5am and > a rush to > get there. We see the neuro in the Northern KY office and then going > to the > hospital to see and rheumatology. LONG day with having to get > up so early > > but I guess you do what you have to do! Maybe they will have tickets > to Kings > Island sometime. That would be fun! The zoo was just too HOT this > last visit. > > > > ________________________________ > From: kristinz4 <kristin-smith@...> > > Sent: Wed, August 11, 2010 1:41:57 PM > Subject: Re: Cincinnati Children's > > Hi , > I'll find out tomorrow when we are back there, I'll let you know if > our paths > are going to cross. > > We love Bleesing too, I trust him more than any other doctor I've > encountered. > I've learned over the years that if he's worried about something > then I should > be really worried, but if he's not, then I don't give it a second > thought. Our > son Conner had been diagnosed with CVID by two other immunologists > in the > Midwest. At our first visit with Dr. Bleesing, he told us that > although he > didn't know what Conner had, it wasn't CVID. He took extra blood > that day and > froze it. He started methodically testing and it took almost 18 > months for him > to ultimately diagnose NEMO (Conner had none of the physical traits, > Bleesing > was just following the trail the labs were leading). It took several > months to > find a bone marrow donor after that. Next week will be his 3 year > anniversary > for transplant and he is considered cured of NEMO at this point. It > doesn't > surprise me that Bleesing is contacting other specialists on your > behalf, he > contacted doctors/scientists all over the country regarding our > family. > > We saw Dr. in Rheumatology. We liked him, but our daughter > isn't needing > > rheumy any longer. Dr. Bleesing had diagnosed her with a type of > periodic fever > syndrome. Dr. agreed with the dx and once she started > treatment most of > her symptoms went away and she hasn't been back. We've never seen > in > clinic, so I'm not sure what he will be needing. I think we saw Dr. > Cotton once, > > I think he's ENT maybe? > > Make sure you contact Guest Services about hotels, they have > discounted rates > (1-888-894-1374). I've never stayed at RMH, so I can't really help > you there. > During transplant they coordinated an apartment for us. Also, if you > talk to > Guest Services, ask about complimentary tickets to local places like > the zoo or > Kings Island, if you're interested in that sort of thing. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2010 Report Share Posted August 11, 2010 We've done methotrexate. My son couldn't tolerate it due to severe nausea, even with zofran around the clock. But he had lots of nausea from his GI disease even before the MTX, so our experience might not be typical. I gave Ben his shots. I wouldn't recommend giving ones first injection to ones child! We see GI and immuno in Cinci. Cindi Sent from my iPhone On Aug 11, 2010, at 2:52 PM, Murrell <murrell.courtney@... > wrote: > Shots. We were told it would be less likely to make her GI issues > worse with > the shots. I haven't heard great things about either though. > > > > ________________________________ > From: Ursula Holleman <uahollem@...> > > Sent: Wed, August 11, 2010 2:06:29 PM > Subject: Re: Re: Cincinnati Children's > > > are you doing shots or pills? > Ursula > Mom to (17) and Macey (15) > Macey's Caringbridge site > > Macey's Blog > > ________________________________ > From: Murrell <murrell.courtney@...> > > Sent: Wed, August 11, 2010 1:58:29 PM > Subject: Re: Re: Cincinnati Children's > > They froze extra blood for Lillian too. I had never heard of that > being done > before. > > That is SO wonderful that he is now cured! > > We see Dr Brunner in rheumatology along with the OT, PT there. My > daughter has > juvenile idiopathic polyarticular arthritis. Lillian starts > methotrexate on > Friday for the autoimmune thing and we are all very nervous about > it. I have > heard that med can be hard. > > Dr Cotton is an ENT who specializes in the airway. You are > absolutely right! > > We have stayed at the Candlewood Suites which we loved for 52 per > night at the > hospital rate. This last visit we stayed at the Hannaford Suites and > I really > did not care much for the area and such. There were only expensive > restaurants > on the exit, no Walmart, no Walgreens, not much of anything we > needed. I will > def ask about complimentary tickets again. We went to the museum > center this > last time. The kids LOVED the Natural History and Science Museum. > This next trip > > will only be a day trip so thankfully not spending the night but it > is a LONG > trip without spending the night having to leave home at like 5am and > a rush to > get there. We see the neuro in the Northern KY office and then going > to the > hospital to see and rheumatology. LONG day with having to get > up so early > > but I guess you do what you have to do! Maybe they will have tickets > to Kings > Island sometime. That would be fun! The zoo was just too HOT this > last visit. > > > > ________________________________ > From: kristinz4 <kristin-smith@...> > > Sent: Wed, August 11, 2010 1:41:57 PM > Subject: Re: Cincinnati Children's > > Hi , > I'll find out tomorrow when we are back there, I'll let you know if > our paths > are going to cross. > > We love Bleesing too, I trust him more than any other doctor I've > encountered. > I've learned over the years that if he's worried about something > then I should > be really worried, but if he's not, then I don't give it a second > thought. Our > son Conner had been diagnosed with CVID by two other immunologists > in the > Midwest. At our first visit with Dr. Bleesing, he told us that > although he > didn't know what Conner had, it wasn't CVID. He took extra blood > that day and > froze it. He started methodically testing and it took almost 18 > months for him > to ultimately diagnose NEMO (Conner had none of the physical traits, > Bleesing > was just following the trail the labs were leading). It took several > months to > find a bone marrow donor after that. Next week will be his 3 year > anniversary > for transplant and he is considered cured of NEMO at this point. It > doesn't > surprise me that Bleesing is contacting other specialists on your > behalf, he > contacted doctors/scientists all over the country regarding our > family. > > We saw Dr. in Rheumatology. We liked him, but our daughter > isn't needing > > rheumy any longer. Dr. Bleesing had diagnosed her with a type of > periodic fever > syndrome. Dr. agreed with the dx and once she started > treatment most of > her symptoms went away and she hasn't been back. We've never seen > in > clinic, so I'm not sure what he will be needing. I think we saw Dr. > Cotton once, > > I think he's ENT maybe? > > Make sure you contact Guest Services about hotels, they have > discounted rates > (1-888-894-1374). I've never stayed at RMH, so I can't really help > you there. > During transplant they coordinated an apartment for us. Also, if you > talk to > Guest Services, ask about complimentary tickets to local places like > the zoo or > Kings Island, if you're interested in that sort of thing. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2010 Report Share Posted August 11, 2010 That is the big concern with Lillian, my daughter. Dr Brunner is really worried about that. Said if she has the nausea and vomiting and affecting her appetite twice then she will take her off of it and put her on something else. Lillian has a lot of upset stomach, reflux, delayed gastric emptying just to name a few things wrong GI wise.  Cindi, Who do you all see in immunology and GI in Cinci?  ________________________________ From: Cindi Sutter <SutterAndSutter@...> " " < > Sent: Wed, August 11, 2010 11:24:57 PM Subject: Re: Re: Cincinnati Children's  We've done methotrexate. My son couldn't tolerate it due to severe nausea, even with zofran around the clock. But he had lots of nausea from his GI disease even before the MTX, so our experience might not be typical. I gave Ben his shots. I wouldn't recommend giving ones first injection to ones child! We see GI and immuno in Cinci. Cindi Sent from my iPhone On Aug 11, 2010, at 2:52 PM, Murrell <murrell.courtney@... > wrote: > Shots. We were told it would be less likely to make her GI issues > worse with > the shots. I haven't heard great things about either though. > > > > ________________________________ > From: Ursula Holleman <uahollem@...> > > Sent: Wed, August 11, 2010 2:06:29 PM > Subject: Re: Re: Cincinnati Children's > > > are you doing shots or pills? > Ursula > Mom to (17) and Macey (15) > Macey's Caringbridge site > > Macey's Blog > > ________________________________ > From: Murrell <murrell.courtney@...> > > Sent: Wed, August 11, 2010 1:58:29 PM > Subject: Re: Re: Cincinnati Children's > > They froze extra blood for Lillian too. I had never heard of that > being done > before. > > That is SO wonderful that he is now cured! > > We see Dr Brunner in rheumatology along with the OT, PT there. My > daughter has > juvenile idiopathic polyarticular arthritis. Lillian starts > methotrexate on > Friday for the autoimmune thing and we are all very nervous about > it. I have > heard that med can be hard. > > Dr Cotton is an ENT who specializes in the airway. You are > absolutely right! > > We have stayed at the Candlewood Suites which we loved for 52 per > night at the > hospital rate. This last visit we stayed at the Hannaford Suites and > I really > did not care much for the area and such. There were only expensive > restaurants > on the exit, no Walmart, no Walgreens, not much of anything we > needed. I will > def ask about complimentary tickets again. We went to the museum > center this > last time. The kids LOVED the Natural History and Science Museum. > This next trip > > will only be a day trip so thankfully not spending the night but it > is a LONG > trip without spending the night having to leave home at like 5am and > a rush to > get there. We see the neuro in the Northern KY office and then going > to the > hospital to see and rheumatology. LONG day with having to get > up so early > > but I guess you do what you have to do! Maybe they will have tickets > to Kings > Island sometime. That would be fun! The zoo was just too HOT this > last visit. > > > > ________________________________ > From: kristinz4 <kristin-smith@...> > > Sent: Wed, August 11, 2010 1:41:57 PM > Subject: Re: Cincinnati Children's > > Hi , > I'll find out tomorrow when we are back there, I'll let you know if > our paths > are going to cross. > > We love Bleesing too, I trust him more than any other doctor I've > encountered. > I've learned over the years that if he's worried about something > then I should > be really worried, but if he's not, then I don't give it a second > thought. Our > son Conner had been diagnosed with CVID by two other immunologists > in the > Midwest. At our first visit with Dr. Bleesing, he told us that > although he > didn't know what Conner had, it wasn't CVID. He took extra blood > that day and > froze it. He started methodically testing and it took almost 18 > months for him > to ultimately diagnose NEMO (Conner had none of the physical traits, > Bleesing > was just following the trail the labs were leading). It took several > months to > find a bone marrow donor after that. Next week will be his 3 year > anniversary > for transplant and he is considered cured of NEMO at this point. It > doesn't > surprise me that Bleesing is contacting other specialists on your > behalf, he > contacted doctors/scientists all over the country regarding our > family. > > We saw Dr. in Rheumatology. We liked him, but our daughter > isn't needing > > rheumy any longer. Dr. Bleesing had diagnosed her with a type of > periodic fever > syndrome. Dr. agreed with the dx and once she started > treatment most of > her symptoms went away and she hasn't been back. We've never seen > in > clinic, so I'm not sure what he will be needing. I think we saw Dr. > Cotton once, > > I think he's ENT maybe? > > Make sure you contact Guest Services about hotels, they have > discounted rates > (1-888-894-1374). I've never stayed at RMH, so I can't really help > you there. > During transplant they coordinated an apartment for us. Also, if you > talk to > Guest Services, ask about complimentary tickets to local places like > the zoo or > Kings Island, if you're interested in that sort of thing. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2010 Report Share Posted August 11, 2010 I'm wondering if it's a worth a trip to a place like Cincinnati children's for someone like us. My son is a mystery. He is constantly fatigued (without doing anything, walking), has muscle weakness, low tone, poor coordination, asthma, GERD, inflammatory bowel and arthritis. He has low normal IgG but defective antibody formation from multiple vaccines - tetanus, pnumococal. Dr suggested IVIG last year but insurance denied claim. He is constantly sick with upper respiratory infections since he was 18 months. He is also developmentally delayed. There is one other thing - he's always been very small, petite, and same weight for years now. The doctors we've been to run some tests and then send us away usually saying they found something unusual, different, etc but he is always sub clinical for a dx. I leave feeling ok initially but then why is he constantly sick? we're always back again. From last September through June, he was healthy for three days. I'm not sure if there really is something global that is wrong that can tie everything together and whether I should pursue it or just give up on it? Would the doctors at Cincinnati shoe us out? After the thread recently about MITO - I'm just wondering. Has anyone had to search hard to get a diagnosis or figure out what was really going on? Thanks in advance. _____ From: [mailto: ] On Behalf Of Murrell Sent: Wednesday, August 11, 2010 7:56 AM Subject: Re: Cincinnati Children's We will be there definetly on August the 23rd and also on September 13th and 14th. During those visits we will arrive on the 12th. I know we will also be back November 8-10 and one group of appointments in October but I am not sure dates on those yet. We really like Dr Bleesing. He immediately said I think your daughter is aspirating because her infections are limited mainly to respiratory and he also wanted us to reconsider the possibility of Cystic Fibrosis despite the negative sweat tests. Our nurse coordinator in immunology says he likes to take things piece by piece and that is definetly what he is doing with us. He did one set of testing but she said he would actually do further testing. Her immune responses to vaccines were not what he wanted to see so he suggested getting her revaccinated and then retesting in 4-6 weeks. However, Lillian will be on Methotrexate starting on Friday so it would actually not do any good to go that route. When he found this out, he said he was going to have to get with some others and talk and get back with us. I liked that though. I like a doctor willing to say I am not sure what to do but I will figure it out. We were told that Dr is semi-retired so we were really thrilled that he even accepted Lillian as a patient of his. We are hoping he can piece some things together for us. What kinds of things does he want to know in the appointment though? Who do you use in Rheumatology? We were told by a doctor locally that if we have to use Pulmonology that Dr Cotten is amazing! My daughter has definite airway issues that has shown up on bronchoscopy. She continues to get frequent respiratory illnesses and just can't get rid of them once she does get them! We are just starting our journey at Cincinnati Children's and learning quickly how little our doctors here knows and how mismanaged her care has really been from the beginning. We are loving the hospital there!!! Does anyone have experience with the Mc House there? Hotels are getting EXPENSIVE! ________________________________ From: kristinz4 <kristin-smith@... <mailto:kristin-smith%40comcast.net> > <mailto:%40> Sent: Wed, August 11, 2010 8:26:20 AM Subject: Cincinnati Children's I thought I'd highjack the posts regarding Cincinnati Children's hospital, I wanted to chime in and say that we are there regularly, so let me know if any of you are heading that way! We will actually be there tomorrow. We also see Dr. Bleesing for immunology and he was our primary transplant doctor. We think he's a genius and don't believe Conner would have been diagnosed with NEMO if not for him. Cincinnati has the ability to do extensive immune testing and I highly recommend going there for parents who are searching for a more precise diagnosis. Bleesing was the one who finally diagnosed the complement deficiency in my husband and children. None of the other immunologists tested for it, either due to lack of testing availability or lack of knowledge. My family also has some other irregularities in immune function, but thankfully nothing too serious and everyone has been quite healthy in recent years thanks to some of the environmental changes Bleesing suggested. We don't see Dr. , but he is a national legend when it comes to bone marrow failure issues. People come from all over to see him. He did Conner's bone marrow biopsy before transplant and is the sweetest guy (although semi-retired now). The other specialty we love there is Pulmonology, I highly recommend Dr. Wood. Thankfully we haven't needed too many other specialties, other than urology, dermatology and rheumatology. I can recommend names in those departments, if needed. Hope to catch up with some of you there! (NEMO carrier) Mom to Hayden (16-unknown PID) Evan (16-unknown PID) Conner (16-NEMO; bone marrow transplant 8/17/07) Kelsey (14-unknown PID and NEMO carrier) Wife to (unknown PID) www.caringbridge.org/visit/smithkids Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2010 Report Share Posted August 11, 2010 I'm wondering if it's a worth a trip to a place like Cincinnati children's for someone like us. My son is a mystery. He is constantly fatigued (without doing anything, walking), has muscle weakness, low tone, poor coordination, asthma, GERD, inflammatory bowel and arthritis. He has low normal IgG but defective antibody formation from multiple vaccines - tetanus, pnumococal. Dr suggested IVIG last year but insurance denied claim. He is constantly sick with upper respiratory infections since he was 18 months. He is also developmentally delayed. There is one other thing - he's always been very small, petite, and same weight for years now. The doctors we've been to run some tests and then send us away usually saying they found something unusual, different, etc but he is always sub clinical for a dx. I leave feeling ok initially but then why is he constantly sick? we're always back again. From last September through June, he was healthy for three days. I'm not sure if there really is something global that is wrong that can tie everything together and whether I should pursue it or just give up on it? Would the doctors at Cincinnati shoe us out? After the thread recently about MITO - I'm just wondering. Has anyone had to search hard to get a diagnosis or figure out what was really going on? Thanks in advance. _____ From: [mailto: ] On Behalf Of Murrell Sent: Wednesday, August 11, 2010 7:56 AM Subject: Re: Cincinnati Children's We will be there definetly on August the 23rd and also on September 13th and 14th. During those visits we will arrive on the 12th. I know we will also be back November 8-10 and one group of appointments in October but I am not sure dates on those yet. We really like Dr Bleesing. He immediately said I think your daughter is aspirating because her infections are limited mainly to respiratory and he also wanted us to reconsider the possibility of Cystic Fibrosis despite the negative sweat tests. Our nurse coordinator in immunology says he likes to take things piece by piece and that is definetly what he is doing with us. He did one set of testing but she said he would actually do further testing. Her immune responses to vaccines were not what he wanted to see so he suggested getting her revaccinated and then retesting in 4-6 weeks. However, Lillian will be on Methotrexate starting on Friday so it would actually not do any good to go that route. When he found this out, he said he was going to have to get with some others and talk and get back with us. I liked that though. I like a doctor willing to say I am not sure what to do but I will figure it out. We were told that Dr is semi-retired so we were really thrilled that he even accepted Lillian as a patient of his. We are hoping he can piece some things together for us. What kinds of things does he want to know in the appointment though? Who do you use in Rheumatology? We were told by a doctor locally that if we have to use Pulmonology that Dr Cotten is amazing! My daughter has definite airway issues that has shown up on bronchoscopy. She continues to get frequent respiratory illnesses and just can't get rid of them once she does get them! We are just starting our journey at Cincinnati Children's and learning quickly how little our doctors here knows and how mismanaged her care has really been from the beginning. We are loving the hospital there!!! Does anyone have experience with the Mc House there? Hotels are getting EXPENSIVE! ________________________________ From: kristinz4 <kristin-smith@... <mailto:kristin-smith%40comcast.net> > <mailto:%40> Sent: Wed, August 11, 2010 8:26:20 AM Subject: Cincinnati Children's I thought I'd highjack the posts regarding Cincinnati Children's hospital, I wanted to chime in and say that we are there regularly, so let me know if any of you are heading that way! We will actually be there tomorrow. We also see Dr. Bleesing for immunology and he was our primary transplant doctor. We think he's a genius and don't believe Conner would have been diagnosed with NEMO if not for him. Cincinnati has the ability to do extensive immune testing and I highly recommend going there for parents who are searching for a more precise diagnosis. Bleesing was the one who finally diagnosed the complement deficiency in my husband and children. None of the other immunologists tested for it, either due to lack of testing availability or lack of knowledge. My family also has some other irregularities in immune function, but thankfully nothing too serious and everyone has been quite healthy in recent years thanks to some of the environmental changes Bleesing suggested. We don't see Dr. , but he is a national legend when it comes to bone marrow failure issues. People come from all over to see him. He did Conner's bone marrow biopsy before transplant and is the sweetest guy (although semi-retired now). The other specialty we love there is Pulmonology, I highly recommend Dr. Wood. Thankfully we haven't needed too many other specialties, other than urology, dermatology and rheumatology. I can recommend names in those departments, if needed. Hope to catch up with some of you there! (NEMO carrier) Mom to Hayden (16-unknown PID) Evan (16-unknown PID) Conner (16-NEMO; bone marrow transplant 8/17/07) Kelsey (14-unknown PID and NEMO carrier) Wife to (unknown PID) www.caringbridge.org/visit/smithkids Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2010 Report Share Posted August 12, 2010 . Hope Lilian tolerates the MTX. What other immunosuppressants have you tried and what are you treating with them? And does your daughter have mito? I think Ben was on reglan for the DGE at the time, too, and it still didnt help. We see Dr Putnam in GI who specializes in eosinophilic disorders and Dr Risma in immunology (who is typically in the lab and only sees patients a couple of times a month in hem/onc because that's who Dr P likes). Cindi Sent from my iPhone On Aug 11, 2010, at 11:52 PM, Murrell <murrell.courtney@... > wrote: > That is the big concern with Lillian, my daughter. Dr Brunner is > really worried > about that. Said if she has the nausea and vomiting and affecting > her appetite > twice then she will take her off of it and put her on something > else. Lillian > has a lot of upset stomach, reflux, delayed gastric emptying just to > name a few > things wrong GI wise. > > > Cindi, Who do you all see in immunology and GI in Cinci? > > > > ________________________________ > From: Cindi Sutter <SutterAndSutter@...> > " " < > > Sent: Wed, August 11, 2010 11:24:57 PM > Subject: Re: Re: Cincinnati Children's > > > We've done methotrexate. My son couldn't tolerate it due to severe > nausea, even with zofran around the clock. But he had lots of nausea > from his GI disease even before the MTX, so our experience might not > be typical. I gave Ben his shots. I wouldn't recommend giving ones > first injection to ones child! > We see GI and immuno in Cinci. > Cindi > > Sent from my iPhone > > On Aug 11, 2010, at 2:52 PM, Murrell <murrell.courtney@... > > wrote: > > > Shots. We were told it would be less likely to make her GI issues > > worse with > > the shots. I haven't heard great things about either though. > > > > > > > > ________________________________ > > From: Ursula Holleman <uahollem@...> > > > > Sent: Wed, August 11, 2010 2:06:29 PM > > Subject: Re: Re: Cincinnati Children's > > > > > > are you doing shots or pills? > > Ursula > > Mom to (17) and Macey (15) > > Macey's Caringbridge site > > > > Macey's Blog > > > > ________________________________ > > From: Murrell <murrell.courtney@...> > > > > Sent: Wed, August 11, 2010 1:58:29 PM > > Subject: Re: Re: Cincinnati Children's > > > > They froze extra blood for Lillian too. I had never heard of that > > being done > > before. > > > > That is SO wonderful that he is now cured! > > > > We see Dr Brunner in rheumatology along with the OT, PT there. My > > daughter has > > juvenile idiopathic polyarticular arthritis. Lillian starts > > methotrexate on > > Friday for the autoimmune thing and we are all very nervous about > > it. I have > > heard that med can be hard. > > > > Dr Cotton is an ENT who specializes in the airway. You are > > absolutely right! > > > > We have stayed at the Candlewood Suites which we loved for 52 per > > night at the > > hospital rate. This last visit we stayed at the Hannaford Suites and > > I really > > did not care much for the area and such. There were only expensive > > restaurants > > on the exit, no Walmart, no Walgreens, not much of anything we > > needed. I will > > def ask about complimentary tickets again. We went to the museum > > center this > > last time. The kids LOVED the Natural History and Science Museum. > > This next trip > > > > will only be a day trip so thankfully not spending the night but it > > is a LONG > > trip without spending the night having to leave home at like 5am and > > a rush to > > get there. We see the neuro in the Northern KY office and then going > > to the > > hospital to see and rheumatology. LONG day with having to get > > up so early > > > > but I guess you do what you have to do! Maybe they will have tickets > > to Kings > > Island sometime. That would be fun! The zoo was just too HOT this > > last visit. > > > > > > > > ________________________________ > > From: kristinz4 <kristin-smith@...> > > > > Sent: Wed, August 11, 2010 1:41:57 PM > > Subject: Re: Cincinnati Children's > > > > Hi , > > I'll find out tomorrow when we are back there, I'll let you know if > > our paths > > are going to cross. > > > > We love Bleesing too, I trust him more than any other doctor I've > > encountered. > > I've learned over the years that if he's worried about something > > then I should > > be really worried, but if he's not, then I don't give it a second > > thought. Our > > son Conner had been diagnosed with CVID by two other immunologists > > in the > > Midwest. At our first visit with Dr. Bleesing, he told us that > > although he > > didn't know what Conner had, it wasn't CVID. He took extra blood > > that day and > > froze it. He started methodically testing and it took almost 18 > > months for him > > to ultimately diagnose NEMO (Conner had none of the physical traits, > > Bleesing > > was just following the trail the labs were leading). It took several > > months to > > find a bone marrow donor after that. Next week will be his 3 year > > anniversary > > for transplant and he is considered cured of NEMO at this point. It > > doesn't > > surprise me that Bleesing is contacting other specialists on your > > behalf, he > > contacted doctors/scientists all over the country regarding our > > family. > > > > We saw Dr. in Rheumatology. We liked him, but our daughter > > isn't needing > > > > rheumy any longer. Dr. Bleesing had diagnosed her with a type of > > periodic fever > > syndrome. Dr. agreed with the dx and once she started > > treatment most of > > her symptoms went away and she hasn't been back. We've never seen > > in > > clinic, so I'm not sure what he will be needing. I think we saw Dr. > > Cotton once, > > > > I think he's ENT maybe? > > > > Make sure you contact Guest Services about hotels, they have > > discounted rates > > (1-888-894-1374). I've never stayed at RMH, so I can't really help > > you there. > > During transplant they coordinated an apartment for us. Also, if you > > talk to > > Guest Services, ask about complimentary tickets to local places like > > the zoo or > > Kings Island, if you're interested in that sort of thing. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2010 Report Share Posted August 12, 2010 . Hope Lilian tolerates the MTX. What other immunosuppressants have you tried and what are you treating with them? And does your daughter have mito? I think Ben was on reglan for the DGE at the time, too, and it still didnt help. We see Dr Putnam in GI who specializes in eosinophilic disorders and Dr Risma in immunology (who is typically in the lab and only sees patients a couple of times a month in hem/onc because that's who Dr P likes). Cindi Sent from my iPhone On Aug 11, 2010, at 11:52 PM, Murrell <murrell.courtney@... > wrote: > That is the big concern with Lillian, my daughter. Dr Brunner is > really worried > about that. Said if she has the nausea and vomiting and affecting > her appetite > twice then she will take her off of it and put her on something > else. Lillian > has a lot of upset stomach, reflux, delayed gastric emptying just to > name a few > things wrong GI wise. > > > Cindi, Who do you all see in immunology and GI in Cinci? > > > > ________________________________ > From: Cindi Sutter <SutterAndSutter@...> > " " < > > Sent: Wed, August 11, 2010 11:24:57 PM > Subject: Re: Re: Cincinnati Children's > > > We've done methotrexate. My son couldn't tolerate it due to severe > nausea, even with zofran around the clock. But he had lots of nausea > from his GI disease even before the MTX, so our experience might not > be typical. I gave Ben his shots. I wouldn't recommend giving ones > first injection to ones child! > We see GI and immuno in Cinci. > Cindi > > Sent from my iPhone > > On Aug 11, 2010, at 2:52 PM, Murrell <murrell.courtney@... > > wrote: > > > Shots. We were told it would be less likely to make her GI issues > > worse with > > the shots. I haven't heard great things about either though. > > > > > > > > ________________________________ > > From: Ursula Holleman <uahollem@...> > > > > Sent: Wed, August 11, 2010 2:06:29 PM > > Subject: Re: Re: Cincinnati Children's > > > > > > are you doing shots or pills? > > Ursula > > Mom to (17) and Macey (15) > > Macey's Caringbridge site > > > > Macey's Blog > > > > ________________________________ > > From: Murrell <murrell.courtney@...> > > > > Sent: Wed, August 11, 2010 1:58:29 PM > > Subject: Re: Re: Cincinnati Children's > > > > They froze extra blood for Lillian too. I had never heard of that > > being done > > before. > > > > That is SO wonderful that he is now cured! > > > > We see Dr Brunner in rheumatology along with the OT, PT there. My > > daughter has > > juvenile idiopathic polyarticular arthritis. Lillian starts > > methotrexate on > > Friday for the autoimmune thing and we are all very nervous about > > it. I have > > heard that med can be hard. > > > > Dr Cotton is an ENT who specializes in the airway. You are > > absolutely right! > > > > We have stayed at the Candlewood Suites which we loved for 52 per > > night at the > > hospital rate. This last visit we stayed at the Hannaford Suites and > > I really > > did not care much for the area and such. There were only expensive > > restaurants > > on the exit, no Walmart, no Walgreens, not much of anything we > > needed. I will > > def ask about complimentary tickets again. We went to the museum > > center this > > last time. The kids LOVED the Natural History and Science Museum. > > This next trip > > > > will only be a day trip so thankfully not spending the night but it > > is a LONG > > trip without spending the night having to leave home at like 5am and > > a rush to > > get there. We see the neuro in the Northern KY office and then going > > to the > > hospital to see and rheumatology. LONG day with having to get > > up so early > > > > but I guess you do what you have to do! Maybe they will have tickets > > to Kings > > Island sometime. That would be fun! The zoo was just too HOT this > > last visit. > > > > > > > > ________________________________ > > From: kristinz4 <kristin-smith@...> > > > > Sent: Wed, August 11, 2010 1:41:57 PM > > Subject: Re: Cincinnati Children's > > > > Hi , > > I'll find out tomorrow when we are back there, I'll let you know if > > our paths > > are going to cross. > > > > We love Bleesing too, I trust him more than any other doctor I've > > encountered. > > I've learned over the years that if he's worried about something > > then I should > > be really worried, but if he's not, then I don't give it a second > > thought. Our > > son Conner had been diagnosed with CVID by two other immunologists > > in the > > Midwest. At our first visit with Dr. Bleesing, he told us that > > although he > > didn't know what Conner had, it wasn't CVID. He took extra blood > > that day and > > froze it. He started methodically testing and it took almost 18 > > months for him > > to ultimately diagnose NEMO (Conner had none of the physical traits, > > Bleesing > > was just following the trail the labs were leading). It took several > > months to > > find a bone marrow donor after that. Next week will be his 3 year > > anniversary > > for transplant and he is considered cured of NEMO at this point. It > > doesn't > > surprise me that Bleesing is contacting other specialists on your > > behalf, he > > contacted doctors/scientists all over the country regarding our > > family. > > > > We saw Dr. in Rheumatology. We liked him, but our daughter > > isn't needing > > > > rheumy any longer. Dr. Bleesing had diagnosed her with a type of > > periodic fever > > syndrome. Dr. agreed with the dx and once she started > > treatment most of > > her symptoms went away and she hasn't been back. We've never seen > > in > > clinic, so I'm not sure what he will be needing. I think we saw Dr. > > Cotton once, > > > > I think he's ENT maybe? > > > > Make sure you contact Guest Services about hotels, they have > > discounted rates > > (1-888-894-1374). I've never stayed at RMH, so I can't really help > > you there. > > During transplant they coordinated an apartment for us. Also, if you > > talk to > > Guest Services, ask about complimentary tickets to local places like > > the zoo or > > Kings Island, if you're interested in that sort of thing. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2010 Report Share Posted August 12, 2010 We are fairly new to the autoimmune disease thing. We have not used any other immunosuppressants except Prednisolone which she is not on long term. They put her on Mobic to begin with but her rheumy was very hesitant to start her on an immunosuppressant because of her hypogammaglobulenmia and infection history. Dr Blessing threw us for a loop though.He said that even though she had neg sweat tests, that CF should be considered as well as he feels she is aspirating. We knew she was aspirating in the past with absolutely no warning or anything so to get the news it is still going on was a bit discouraging to us.  Just about every doctor that sees my daughter and reviews her history and labs says " has she been evaluated for mitochondrial disease? " Several doctors have felt VERY strongly that she has it. Also I sent her entire history to Dr Kendall for review and also her brothers' history as they all 3 have a chromosome deletion and genetics is always bad to blame everything on that deletion. Dr Kendall after doing the review said she wanted to see her and felt that her issues were mito related. Certainly explains why s he has trouble retaining information and loses skills from time to time and struggles to get them back. She also has memory loss issues. Mito has come up numerous times in the past 2 years but just now are we getting to a specialist who knows what they are doing with it. We will be going to her in Sept. My kids did not have a private primary until last year so that limited medical care. When we put them on my husband's private insurance through work, it opened up a whole new world (although expensive) of places to get good quality medical care.  We tried Reglan and Erythromycin for the DGE and still no results. What did you end up doing for the DGE that did help?  Dr Putnam is amazing I have heard! Very lucky to see him as I have heard recently that he is not taking anymore new patients at this time.  ________________________________ From: Cindi Sutter <SutterAndSutter@...> " " < > Sent: Thu, August 12, 2010 2:54:41 AM Subject: Re: Re: Cincinnati Children's  . Hope Lilian tolerates the MTX. What other immunosuppressants have you tried and what are you treating with them? And does your daughter have mito? I think Ben was on reglan for the DGE at the time, too, and it still didnt help. We see Dr Putnam in GI who specializes in eosinophilic disorders and Dr Risma in immunology (who is typically in the lab and only sees patients a couple of times a month in hem/onc because that's who Dr P likes). Cindi Sent from my iPhone On Aug 11, 2010, at 11:52 PM, Murrell <murrell.courtney@... > wrote: > That is the big concern with Lillian, my daughter. Dr Brunner is > really worried > about that. Said if she has the nausea and vomiting and affecting > her appetite > twice then she will take her off of it and put her on something > else. Lillian > has a lot of upset stomach, reflux, delayed gastric emptying just to > name a few > things wrong GI wise. > > > Cindi, Who do you all see in immunology and GI in Cinci? > > > > ________________________________ > From: Cindi Sutter <SutterAndSutter@...> > " " < > > Sent: Wed, August 11, 2010 11:24:57 PM > Subject: Re: Re: Cincinnati Children's > > > We've done methotrexate. My son couldn't tolerate it due to severe > nausea, even with zofran around the clock. But he had lots of nausea > from his GI disease even before the MTX, so our experience might not > be typical. I gave Ben his shots. I wouldn't recommend giving ones > first injection to ones child! > We see GI and immuno in Cinci. > Cindi > > Sent from my iPhone > > On Aug 11, 2010, at 2:52 PM, Murrell <murrell.courtney@... > > wrote: > > > Shots. We were told it would be less likely to make her GI issues > > worse with > > the shots. I haven't heard great things about either though. > > > > > > > > ________________________________ > > From: Ursula Holleman <uahollem@...> > > > > Sent: Wed, August 11, 2010 2:06:29 PM > > Subject: Re: Re: Cincinnati Children's > > > > > > are you doing shots or pills? > > Ursula > > Mom to (17) and Macey (15) > > Macey's Caringbridge site > > > > Macey's Blog > > > > ________________________________ > > From: Murrell <murrell.courtney@...> > > > > Sent: Wed, August 11, 2010 1:58:29 PM > > Subject: Re: Re: Cincinnati Children's > > > > They froze extra blood for Lillian too. I had never heard of that > > being done > > before. > > > > That is SO wonderful that he is now cured! > > > > We see Dr Brunner in rheumatology along with the OT, PT there. My > > daughter has > > juvenile idiopathic polyarticular arthritis. Lillian starts > > methotrexate on > > Friday for the autoimmune thing and we are all very nervous about > > it. I have > > heard that med can be hard. > > > > Dr Cotton is an ENT who specializes in the airway. You are > > absolutely right! > > > > We have stayed at the Candlewood Suites which we loved for 52 per > > night at the > > hospital rate. This last visit we stayed at the Hannaford Suites and > > I really > > did not care much for the area and such. There were only expensive > > restaurants > > on the exit, no Walmart, no Walgreens, not much of anything we > > needed. I will > > def ask about complimentary tickets again. We went to the museum > > center this > > last time. The kids LOVED the Natural History and Science Museum. > > This next trip > > > > will only be a day trip so thankfully not spending the night but it > > is a LONG > > trip without spending the night having to leave home at like 5am and > > a rush to > > get there. We see the neuro in the Northern KY office and then going > > to the > > hospital to see and rheumatology. LONG day with having to get > > up so early > > > > but I guess you do what you have to do! Maybe they will have tickets > > to Kings > > Island sometime. That would be fun! The zoo was just too HOT this > > last visit. > > > > > > > > ________________________________ > > From: kristinz4 <kristin-smith@...> > > > > Sent: Wed, August 11, 2010 1:41:57 PM > > Subject: Re: Cincinnati Children's > > > > Hi , > > I'll find out tomorrow when we are back there, I'll let you know if > > our paths > > are going to cross. > > > > We love Bleesing too, I trust him more than any other doctor I've > > encountered. > > I've learned over the years that if he's worried about something > > then I should > > be really worried, but if he's not, then I don't give it a second > > thought. Our > > son Conner had been diagnosed with CVID by two other immunologists > > in the > > Midwest. At our first visit with Dr. Bleesing, he told us that > > although he > > didn't know what Conner had, it wasn't CVID. He took extra blood > > that day and > > froze it. He started methodically testing and it took almost 18 > > months for him > > to ultimately diagnose NEMO (Conner had none of the physical traits, > > Bleesing > > was just following the trail the labs were leading). It took several > > months to > > find a bone marrow donor after that. Next week will be his 3 year > > anniversary > > for transplant and he is considered cured of NEMO at this point. It > > doesn't > > surprise me that Bleesing is contacting other specialists on your > > behalf, he > > contacted doctors/scientists all over the country regarding our > > family. > > > > We saw Dr. in Rheumatology. We liked him, but our daughter > > isn't needing > > > > rheumy any longer. Dr. Bleesing had diagnosed her with a type of > > periodic fever > > syndrome. Dr. agreed with the dx and once she started > > treatment most of > > her symptoms went away and she hasn't been back. We've never seen > > in > > clinic, so I'm not sure what he will be needing. I think we saw Dr. > > Cotton once, > > > > I think he's ENT maybe? > > > > Make sure you contact Guest Services about hotels, they have > > discounted rates > > (1-888-894-1374). I've never stayed at RMH, so I can't really help > > you there. > > During transplant they coordinated an apartment for us. Also, if you > > talk to > > Guest Services, ask about complimentary tickets to local places like > > the zoo or > > Kings Island, if you're interested in that sort of thing. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2010 Report Share Posted August 12, 2010 We are fairly new to the autoimmune disease thing. We have not used any other immunosuppressants except Prednisolone which she is not on long term. They put her on Mobic to begin with but her rheumy was very hesitant to start her on an immunosuppressant because of her hypogammaglobulenmia and infection history. Dr Blessing threw us for a loop though.He said that even though she had neg sweat tests, that CF should be considered as well as he feels she is aspirating. We knew she was aspirating in the past with absolutely no warning or anything so to get the news it is still going on was a bit discouraging to us.  Just about every doctor that sees my daughter and reviews her history and labs says " has she been evaluated for mitochondrial disease? " Several doctors have felt VERY strongly that she has it. Also I sent her entire history to Dr Kendall for review and also her brothers' history as they all 3 have a chromosome deletion and genetics is always bad to blame everything on that deletion. Dr Kendall after doing the review said she wanted to see her and felt that her issues were mito related. Certainly explains why s he has trouble retaining information and loses skills from time to time and struggles to get them back. She also has memory loss issues. Mito has come up numerous times in the past 2 years but just now are we getting to a specialist who knows what they are doing with it. We will be going to her in Sept. My kids did not have a private primary until last year so that limited medical care. When we put them on my husband's private insurance through work, it opened up a whole new world (although expensive) of places to get good quality medical care.  We tried Reglan and Erythromycin for the DGE and still no results. What did you end up doing for the DGE that did help?  Dr Putnam is amazing I have heard! Very lucky to see him as I have heard recently that he is not taking anymore new patients at this time.  ________________________________ From: Cindi Sutter <SutterAndSutter@...> " " < > Sent: Thu, August 12, 2010 2:54:41 AM Subject: Re: Re: Cincinnati Children's  . Hope Lilian tolerates the MTX. What other immunosuppressants have you tried and what are you treating with them? And does your daughter have mito? I think Ben was on reglan for the DGE at the time, too, and it still didnt help. We see Dr Putnam in GI who specializes in eosinophilic disorders and Dr Risma in immunology (who is typically in the lab and only sees patients a couple of times a month in hem/onc because that's who Dr P likes). Cindi Sent from my iPhone On Aug 11, 2010, at 11:52 PM, Murrell <murrell.courtney@... > wrote: > That is the big concern with Lillian, my daughter. Dr Brunner is > really worried > about that. Said if she has the nausea and vomiting and affecting > her appetite > twice then she will take her off of it and put her on something > else. Lillian > has a lot of upset stomach, reflux, delayed gastric emptying just to > name a few > things wrong GI wise. > > > Cindi, Who do you all see in immunology and GI in Cinci? > > > > ________________________________ > From: Cindi Sutter <SutterAndSutter@...> > " " < > > Sent: Wed, August 11, 2010 11:24:57 PM > Subject: Re: Re: Cincinnati Children's > > > We've done methotrexate. My son couldn't tolerate it due to severe > nausea, even with zofran around the clock. But he had lots of nausea > from his GI disease even before the MTX, so our experience might not > be typical. I gave Ben his shots. I wouldn't recommend giving ones > first injection to ones child! > We see GI and immuno in Cinci. > Cindi > > Sent from my iPhone > > On Aug 11, 2010, at 2:52 PM, Murrell <murrell.courtney@... > > wrote: > > > Shots. We were told it would be less likely to make her GI issues > > worse with > > the shots. I haven't heard great things about either though. > > > > > > > > ________________________________ > > From: Ursula Holleman <uahollem@...> > > > > Sent: Wed, August 11, 2010 2:06:29 PM > > Subject: Re: Re: Cincinnati Children's > > > > > > are you doing shots or pills? > > Ursula > > Mom to (17) and Macey (15) > > Macey's Caringbridge site > > > > Macey's Blog > > > > ________________________________ > > From: Murrell <murrell.courtney@...> > > > > Sent: Wed, August 11, 2010 1:58:29 PM > > Subject: Re: Re: Cincinnati Children's > > > > They froze extra blood for Lillian too. I had never heard of that > > being done > > before. > > > > That is SO wonderful that he is now cured! > > > > We see Dr Brunner in rheumatology along with the OT, PT there. My > > daughter has > > juvenile idiopathic polyarticular arthritis. Lillian starts > > methotrexate on > > Friday for the autoimmune thing and we are all very nervous about > > it. I have > > heard that med can be hard. > > > > Dr Cotton is an ENT who specializes in the airway. You are > > absolutely right! > > > > We have stayed at the Candlewood Suites which we loved for 52 per > > night at the > > hospital rate. This last visit we stayed at the Hannaford Suites and > > I really > > did not care much for the area and such. There were only expensive > > restaurants > > on the exit, no Walmart, no Walgreens, not much of anything we > > needed. I will > > def ask about complimentary tickets again. We went to the museum > > center this > > last time. The kids LOVED the Natural History and Science Museum. > > This next trip > > > > will only be a day trip so thankfully not spending the night but it > > is a LONG > > trip without spending the night having to leave home at like 5am and > > a rush to > > get there. We see the neuro in the Northern KY office and then going > > to the > > hospital to see and rheumatology. LONG day with having to get > > up so early > > > > but I guess you do what you have to do! Maybe they will have tickets > > to Kings > > Island sometime. That would be fun! The zoo was just too HOT this > > last visit. > > > > > > > > ________________________________ > > From: kristinz4 <kristin-smith@...> > > > > Sent: Wed, August 11, 2010 1:41:57 PM > > Subject: Re: Cincinnati Children's > > > > Hi , > > I'll find out tomorrow when we are back there, I'll let you know if > > our paths > > are going to cross. > > > > We love Bleesing too, I trust him more than any other doctor I've > > encountered. > > I've learned over the years that if he's worried about something > > then I should > > be really worried, but if he's not, then I don't give it a second > > thought. Our > > son Conner had been diagnosed with CVID by two other immunologists > > in the > > Midwest. At our first visit with Dr. Bleesing, he told us that > > although he > > didn't know what Conner had, it wasn't CVID. He took extra blood > > that day and > > froze it. He started methodically testing and it took almost 18 > > months for him > > to ultimately diagnose NEMO (Conner had none of the physical traits, > > Bleesing > > was just following the trail the labs were leading). It took several > > months to > > find a bone marrow donor after that. Next week will be his 3 year > > anniversary > > for transplant and he is considered cured of NEMO at this point. It > > doesn't > > surprise me that Bleesing is contacting other specialists on your > > behalf, he > > contacted doctors/scientists all over the country regarding our > > family. > > > > We saw Dr. in Rheumatology. We liked him, but our daughter > > isn't needing > > > > rheumy any longer. Dr. Bleesing had diagnosed her with a type of > > periodic fever > > syndrome. Dr. agreed with the dx and once she started > > treatment most of > > her symptoms went away and she hasn't been back. We've never seen > > in > > clinic, so I'm not sure what he will be needing. I think we saw Dr. > > Cotton once, > > > > I think he's ENT maybe? > > > > Make sure you contact Guest Services about hotels, they have > > discounted rates > > (1-888-894-1374). I've never stayed at RMH, so I can't really help > > you there. > > During transplant they coordinated an apartment for us. Also, if you > > talk to > > Guest Services, ask about complimentary tickets to local places like > > the zoo or > > Kings Island, if you're interested in that sort of thing. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2010 Report Share Posted August 12, 2010 For the mito diagnosis, I don't really recommend Cincinnati Childrens because they refer out other places. However there are SEVERAL mito families that use their specialists there. For us, we started out at rheumatology with Dr Brunner who we just LOVE and then she referred out to other specialists. Your PCP can also refer to other specialists there as well. I think it is well worth going to their specialists there. Their metabolic guy is Dr deGrauw and he is a neurologist. From what I have been getting, he is an amazing neurologist and is the head of the department of neurology. With mito, he is not that up to date and is unaware of a lot of the new less invasive testing. He often refers to Cleveland Clinic for the mito stuff which is an entire new set of problems. For us, it did not make sense for us to drive to CC which is 8 hours when there is a great mito specialist in Atlanta. (Dr Kendall with Virtual Medical Practice) Atlanta is 4 hours for us. Also one thing I loved about getting the appointment with her. I emailed her and she had me email her all of the history, diagnoses, symptoms to tell us whether it would be worth our trip to see her. She wrote back saying it all sounded mito related. She was the FIRST doctor (besides Dr Blessing) who really looked PAST the chromosome deletion and was able to say these issues is NOT the chromosome deletion. I highly recommend her as well as Cincinnati Childrens. Btw, she works with the Cinci specialists and is great at working with others. ________________________________ From: Jefferson <jamie@...> Sent: Thu, August 12, 2010 12:13:03 AM Subject: RE: Cincinnati Children's  I'm wondering if it's a worth a trip to a place like Cincinnati children's for someone like us. My son is a mystery. He is constantly fatigued (without doing anything, walking), has muscle weakness, low tone, poor coordination, asthma, GERD, inflammatory bowel and arthritis. He has low normal IgG but defective antibody formation from multiple vaccines - tetanus, pnumococal. Dr suggested IVIG last year but insurance denied claim. He is constantly sick with upper respiratory infections since he was 18 months. He is also developmentally delayed. There is one other thing - he's always been very small, petite, and same weight for years now. The doctors we've been to run some tests and then send us away usually saying they found something unusual, different, etc but he is always sub clinical for a dx. I leave feeling ok initially but then why is he constantly sick? we're always back again. From last September through June, he was healthy for three days. I'm not sure if there really is something global that is wrong that can tie everything together and whether I should pursue it or just give up on it? Would the doctors at Cincinnati shoe us out? After the thread recently about MITO - I'm just wondering. Has anyone had to search hard to get a diagnosis or figure out what was really going on? Thanks in advance. _____ From: [mailto: ] On Behalf Of Murrell Sent: Wednesday, August 11, 2010 7:56 AM Subject: Re: Cincinnati Children's We will be there definetly on August the 23rd and also on September 13th and 14th. During those visits we will arrive on the 12th. I know we will also be back November 8-10 and one group of appointments in October but I am not sure dates on those yet. We really like Dr Bleesing. He immediately said I think your daughter is aspirating because her infections are limited mainly to respiratory and he also wanted us to reconsider the possibility of Cystic Fibrosis despite the negative sweat tests. Our nurse coordinator in immunology says he likes to take things piece by piece and that is definetly what he is doing with us. He did one set of testing but she said he would actually do further testing. Her immune responses to vaccines were not what he wanted to see so he suggested getting her revaccinated and then retesting in 4-6 weeks. However, Lillian will be on Methotrexate starting on Friday so it would actually not do any good to go that route. When he found this out, he said he was going to have to get with some others and talk and get back with us. I liked that though. I like a doctor willing to say I am not sure what to do but I will figure it out. We were told that Dr is semi-retired so we were really thrilled that he even accepted Lillian as a patient of his. We are hoping he can piece some things together for us. What kinds of things does he want to know in the appointment though? Who do you use in Rheumatology? We were told by a doctor locally that if we have to use Pulmonology that Dr Cotten is amazing! My daughter has definite airway issues that has shown up on bronchoscopy. She continues to get frequent respiratory illnesses and just can't get rid of them once she does get them! We are just starting our journey at Cincinnati Children's and learning quickly how little our doctors here knows and how mismanaged her care has really been from the beginning. We are loving the hospital there!!! Does anyone have experience with the Mc House there? Hotels are getting EXPENSIVE! ________________________________ From: kristinz4 <kristin-smith@... <mailto:kristin-smith%40comcast.net> > <mailto:%40> Sent: Wed, August 11, 2010 8:26:20 AM Subject: Cincinnati Children's I thought I'd highjack the posts regarding Cincinnati Children's hospital, I wanted to chime in and say that we are there regularly, so let me know if any of you are heading that way! We will actually be there tomorrow. We also see Dr. Bleesing for immunology and he was our primary transplant doctor. We think he's a genius and don't believe Conner would have been diagnosed with NEMO if not for him. Cincinnati has the ability to do extensive immune testing and I highly recommend going there for parents who are searching for a more precise diagnosis. Bleesing was the one who finally diagnosed the complement deficiency in my husband and children. None of the other immunologists tested for it, either due to lack of testing availability or lack of knowledge. My family also has some other irregularities in immune function, but thankfully nothing too serious and everyone has been quite healthy in recent years thanks to some of the environmental changes Bleesing suggested. We don't see Dr. , but he is a national legend when it comes to bone marrow failure issues. People come from all over to see him. He did Conner's bone marrow biopsy before transplant and is the sweetest guy (although semi-retired now). The other specialty we love there is Pulmonology, I highly recommend Dr. Wood. Thankfully we haven't needed too many other specialties, other than urology, dermatology and rheumatology. I can recommend names in those departments, if needed. Hope to catch up with some of you there! (NEMO carrier) Mom to Hayden (16-unknown PID) Evan (16-unknown PID) Conner (16-NEMO; bone marrow transplant 8/17/07) Kelsey (14-unknown PID and NEMO carrier) Wife to (unknown PID) www.caringbridge.org/visit/smithkids Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2010 Report Share Posted August 12, 2010 For the mito diagnosis, I don't really recommend Cincinnati Childrens because they refer out other places. However there are SEVERAL mito families that use their specialists there. For us, we started out at rheumatology with Dr Brunner who we just LOVE and then she referred out to other specialists. Your PCP can also refer to other specialists there as well. I think it is well worth going to their specialists there. Their metabolic guy is Dr deGrauw and he is a neurologist. From what I have been getting, he is an amazing neurologist and is the head of the department of neurology. With mito, he is not that up to date and is unaware of a lot of the new less invasive testing. He often refers to Cleveland Clinic for the mito stuff which is an entire new set of problems. For us, it did not make sense for us to drive to CC which is 8 hours when there is a great mito specialist in Atlanta. (Dr Kendall with Virtual Medical Practice) Atlanta is 4 hours for us. Also one thing I loved about getting the appointment with her. I emailed her and she had me email her all of the history, diagnoses, symptoms to tell us whether it would be worth our trip to see her. She wrote back saying it all sounded mito related. She was the FIRST doctor (besides Dr Blessing) who really looked PAST the chromosome deletion and was able to say these issues is NOT the chromosome deletion. I highly recommend her as well as Cincinnati Childrens. Btw, she works with the Cinci specialists and is great at working with others. ________________________________ From: Jefferson <jamie@...> Sent: Thu, August 12, 2010 12:13:03 AM Subject: RE: Cincinnati Children's  I'm wondering if it's a worth a trip to a place like Cincinnati children's for someone like us. My son is a mystery. He is constantly fatigued (without doing anything, walking), has muscle weakness, low tone, poor coordination, asthma, GERD, inflammatory bowel and arthritis. He has low normal IgG but defective antibody formation from multiple vaccines - tetanus, pnumococal. Dr suggested IVIG last year but insurance denied claim. He is constantly sick with upper respiratory infections since he was 18 months. He is also developmentally delayed. There is one other thing - he's always been very small, petite, and same weight for years now. The doctors we've been to run some tests and then send us away usually saying they found something unusual, different, etc but he is always sub clinical for a dx. I leave feeling ok initially but then why is he constantly sick? we're always back again. From last September through June, he was healthy for three days. I'm not sure if there really is something global that is wrong that can tie everything together and whether I should pursue it or just give up on it? Would the doctors at Cincinnati shoe us out? After the thread recently about MITO - I'm just wondering. Has anyone had to search hard to get a diagnosis or figure out what was really going on? Thanks in advance. _____ From: [mailto: ] On Behalf Of Murrell Sent: Wednesday, August 11, 2010 7:56 AM Subject: Re: Cincinnati Children's We will be there definetly on August the 23rd and also on September 13th and 14th. During those visits we will arrive on the 12th. I know we will also be back November 8-10 and one group of appointments in October but I am not sure dates on those yet. We really like Dr Bleesing. He immediately said I think your daughter is aspirating because her infections are limited mainly to respiratory and he also wanted us to reconsider the possibility of Cystic Fibrosis despite the negative sweat tests. Our nurse coordinator in immunology says he likes to take things piece by piece and that is definetly what he is doing with us. He did one set of testing but she said he would actually do further testing. Her immune responses to vaccines were not what he wanted to see so he suggested getting her revaccinated and then retesting in 4-6 weeks. However, Lillian will be on Methotrexate starting on Friday so it would actually not do any good to go that route. When he found this out, he said he was going to have to get with some others and talk and get back with us. I liked that though. I like a doctor willing to say I am not sure what to do but I will figure it out. We were told that Dr is semi-retired so we were really thrilled that he even accepted Lillian as a patient of his. We are hoping he can piece some things together for us. What kinds of things does he want to know in the appointment though? Who do you use in Rheumatology? We were told by a doctor locally that if we have to use Pulmonology that Dr Cotten is amazing! My daughter has definite airway issues that has shown up on bronchoscopy. She continues to get frequent respiratory illnesses and just can't get rid of them once she does get them! We are just starting our journey at Cincinnati Children's and learning quickly how little our doctors here knows and how mismanaged her care has really been from the beginning. We are loving the hospital there!!! Does anyone have experience with the Mc House there? Hotels are getting EXPENSIVE! ________________________________ From: kristinz4 <kristin-smith@... <mailto:kristin-smith%40comcast.net> > <mailto:%40> Sent: Wed, August 11, 2010 8:26:20 AM Subject: Cincinnati Children's I thought I'd highjack the posts regarding Cincinnati Children's hospital, I wanted to chime in and say that we are there regularly, so let me know if any of you are heading that way! We will actually be there tomorrow. We also see Dr. Bleesing for immunology and he was our primary transplant doctor. We think he's a genius and don't believe Conner would have been diagnosed with NEMO if not for him. Cincinnati has the ability to do extensive immune testing and I highly recommend going there for parents who are searching for a more precise diagnosis. Bleesing was the one who finally diagnosed the complement deficiency in my husband and children. None of the other immunologists tested for it, either due to lack of testing availability or lack of knowledge. My family also has some other irregularities in immune function, but thankfully nothing too serious and everyone has been quite healthy in recent years thanks to some of the environmental changes Bleesing suggested. We don't see Dr. , but he is a national legend when it comes to bone marrow failure issues. People come from all over to see him. He did Conner's bone marrow biopsy before transplant and is the sweetest guy (although semi-retired now). The other specialty we love there is Pulmonology, I highly recommend Dr. Wood. Thankfully we haven't needed too many other specialties, other than urology, dermatology and rheumatology. I can recommend names in those departments, if needed. Hope to catch up with some of you there! (NEMO carrier) Mom to Hayden (16-unknown PID) Evan (16-unknown PID) Conner (16-NEMO; bone marrow transplant 8/17/07) Kelsey (14-unknown PID and NEMO carrier) Wife to (unknown PID) www.caringbridge.org/visit/smithkids Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2010 Report Share Posted August 12, 2010 Thanks . I will check into her too _____ From: [mailto: ] On Behalf Of Murrell Sent: Thursday, August 12, 2010 6:40 AM Subject: Re: Cincinnati Children's For the mito diagnosis, I don't really recommend Cincinnati Childrens because they refer out other places. However there are SEVERAL mito families that use their specialists there. For us, we started out at rheumatology with Dr Brunner who we just LOVE and then she referred out to other specialists. Your PCP can also refer to other specialists there as well. I think it is well worth going to their specialists there. Their metabolic guy is Dr deGrauw and he is a neurologist. From what I have been getting, he is an amazing neurologist and is the head of the department of neurology. With mito, he is not that up to date and is unaware of a lot of the new less invasive testing. He often refers to Cleveland Clinic for the mito stuff which is an entire new set of problems. For us, it did not make sense for us to drive to CC which is 8 hours when there is a great mito specialist in Atlanta. (Dr Kendall with Virtual Medical Practice) Atlanta is 4 hours for us. Also one thing I loved about getting the appointment with her. I emailed her and she had me email her all of the history, diagnoses, symptoms to tell us whether it would be worth our trip to see her. She wrote back saying it all sounded mito related. She was the FIRST doctor (besides Dr Blessing) who really looked PAST the chromosome deletion and was able to say these issues is NOT the chromosome deletion. I highly recommend her as well as Cincinnati Childrens. Btw, she works with the Cinci specialists and is great at working with others. ________________________________ From: Jefferson <jamie@... <mailto:jamie%40jefferson.org> > <mailto:%40> Sent: Thu, August 12, 2010 12:13:03 AM Subject: RE: Cincinnati Children's I'm wondering if it's a worth a trip to a place like Cincinnati children's for someone like us. My son is a mystery. He is constantly fatigued (without doing anything, walking), has muscle weakness, low tone, poor coordination, asthma, GERD, inflammatory bowel and arthritis. He has low normal IgG but defective antibody formation from multiple vaccines - tetanus, pnumococal. Dr suggested IVIG last year but insurance denied claim. He is constantly sick with upper respiratory infections since he was 18 months. He is also developmentally delayed. There is one other thing - he's always been very small, petite, and same weight for years now. The doctors we've been to run some tests and then send us away usually saying they found something unusual, different, etc but he is always sub clinical for a dx. I leave feeling ok initially but then why is he constantly sick? we're always back again. From last September through June, he was healthy for three days. I'm not sure if there really is something global that is wrong that can tie everything together and whether I should pursue it or just give up on it? Would the doctors at Cincinnati shoe us out? After the thread recently about MITO - I'm just wondering. Has anyone had to search hard to get a diagnosis or figure out what was really going on? Thanks in advance. _____ From: <mailto:%40> [mailto: <mailto:%40> ] On Behalf Of Murrell Sent: Wednesday, August 11, 2010 7:56 AM <mailto:%40> Subject: Re: Cincinnati Children's We will be there definetly on August the 23rd and also on September 13th and 14th. During those visits we will arrive on the 12th. I know we will also be back November 8-10 and one group of appointments in October but I am not sure dates on those yet. We really like Dr Bleesing. He immediately said I think your daughter is aspirating because her infections are limited mainly to respiratory and he also wanted us to reconsider the possibility of Cystic Fibrosis despite the negative sweat tests. Our nurse coordinator in immunology says he likes to take things piece by piece and that is definetly what he is doing with us. He did one set of testing but she said he would actually do further testing. Her immune responses to vaccines were not what he wanted to see so he suggested getting her revaccinated and then retesting in 4-6 weeks. However, Lillian will be on Methotrexate starting on Friday so it would actually not do any good to go that route. When he found this out, he said he was going to have to get with some others and talk and get back with us. I liked that though. I like a doctor willing to say I am not sure what to do but I will figure it out. We were told that Dr is semi-retired so we were really thrilled that he even accepted Lillian as a patient of his. We are hoping he can piece some things together for us. What kinds of things does he want to know in the appointment though? Who do you use in Rheumatology? We were told by a doctor locally that if we have to use Pulmonology that Dr Cotten is amazing! My daughter has definite airway issues that has shown up on bronchoscopy. She continues to get frequent respiratory illnesses and just can't get rid of them once she does get them! We are just starting our journey at Cincinnati Children's and learning quickly how little our doctors here knows and how mismanaged her care has really been from the beginning. We are loving the hospital there!!! Does anyone have experience with the Mc House there? Hotels are getting EXPENSIVE! ________________________________ From: kristinz4 <kristin-smith@... <mailto:kristin-smith%40comcast.net> <mailto:kristin-smith%40comcast.net> > <mailto:%40> <mailto:%40> Sent: Wed, August 11, 2010 8:26:20 AM Subject: Cincinnati Children's I thought I'd highjack the posts regarding Cincinnati Children's hospital, I wanted to chime in and say that we are there regularly, so let me know if any of you are heading that way! We will actually be there tomorrow. We also see Dr. Bleesing for immunology and he was our primary transplant doctor. We think he's a genius and don't believe Conner would have been diagnosed with NEMO if not for him. Cincinnati has the ability to do extensive immune testing and I highly recommend going there for parents who are searching for a more precise diagnosis. Bleesing was the one who finally diagnosed the complement deficiency in my husband and children. None of the other immunologists tested for it, either due to lack of testing availability or lack of knowledge. My family also has some other irregularities in immune function, but thankfully nothing too serious and everyone has been quite healthy in recent years thanks to some of the environmental changes Bleesing suggested. We don't see Dr. , but he is a national legend when it comes to bone marrow failure issues. People come from all over to see him. He did Conner's bone marrow biopsy before transplant and is the sweetest guy (although semi-retired now). The other specialty we love there is Pulmonology, I highly recommend Dr. Wood. Thankfully we haven't needed too many other specialties, other than urology, dermatology and rheumatology. I can recommend names in those departments, if needed. Hope to catch up with some of you there! (NEMO carrier) Mom to Hayden (16-unknown PID) Evan (16-unknown PID) Conner (16-NEMO; bone marrow transplant 8/17/07) Kelsey (14-unknown PID and NEMO carrier) Wife to (unknown PID) www.caringbridge.org/visit/smithkids Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.