Guest guest Posted July 30, 2009 Report Share Posted July 30, 2009 Thanks for posting the web address. My husband caught the tail end of her speech and he was upset because he thought she might have been making fun of the helmets. At least it got some attention! > > Here's something that I found quite funny. My sister-in-law saw this and sent it to me. I guess this talk show host has been giving updates on her nephew's helmet and he's finally getting it off! > > http://www.eonline.com/videos/v31038026001_Chelsea_Lately__Helmet_Friendly.html > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2009 Report Share Posted July 31, 2009 I know...I was thinking that at least more people will know what the helmet is for now. > Re: Funny > Date: Fri, 31 Jul 2009 05:27:06 -0000 > > > Thanks for posting the web address. My husband caught the tail end > of her speech and he was upset because he thought she might have > been making fun of the helmets. At least it got some attention! > > > > > > Here's something that I found quite funny. My sister-in-law saw > > this and sent it to me. I guess this talk show host has been > > giving updates on her nephew's helmet and he's finally getting it > > off! > > > > http://www.eonline.com/videos/v31038026001_Chelsea_Lately__Helmet_Friendly.html > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2009 Report Share Posted July 31, 2009 Maybe I'm just in a bad mood this afternoon, but I actually thought that clip was a little mean and not at all educational. What did anyone else think? -, Indianapolis (mom to Johann, helmet free for 2 years, and Anders, 6 mo. and soon-to-be banded) > > > > Here's something that I found quite funny. My sister-in-law saw this and sent it to me. I guess this talk show host has been giving updates on her nephew's helmet and he's finally getting it off! > > > > http://www.eonline.com/videos/v31038026001_Chelsea_Lately__Helmet_Friendly.html > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2009 Report Share Posted July 31, 2009 So I'm not the only one. I thought because I'm not American I misinterpreted. I agree. It sounded a little mean but still good for the cause. Some more people heard about it even this way. , Tampa,Fl , 15 mo adj, starband since 9 July Plagiocephaly From: csorensen25@...Date: Fri, 31 Jul 2009 20:44:06 +0000Subject: Re: Funny Maybe I'm just in a bad mood this afternoon, but I actually thought that clip was a little mean and not at all educational. What did anyone else think?-, Indianapolis (mom to Johann, helmet free for 2 years, and Anders, 6 mo. and soon-to-be banded)> >> > Here's something that I found quite funny. My sister-in-law saw this and sent it to me. I guess this talk show host has been giving updates on her nephew's helmet and he's finally getting it off!> > > > http://www.eonline.com/videos/v31038026001_Chelsea_Lately__Helmet_Friendly.html> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2009 Report Share Posted July 31, 2009 Same here! I think the audience took it as a chance to poke fun at a "funny looking kid", even if the comedian herself didn't intend her jokes that way. It just had a mean tone to it all, but maybe thats the protective mom thing in me!From: Lulei <cllulei@...>plagiocephaly Sent: Friday, July 31, 2009 7:26:46 PMSubject: RE: Re: Funny So I'm not the only one. I thought because I'm not American I misinterpreted. I agree. It sounded a little mean but still good for the cause. Some more people heard about it even this way. , Tampa,Fl , 15 mo adj, starband since 9 July PlagiocephalyFrom: csorensen25Date: Fri, 31 Jul 2009 20:44:06 +0000Subject: Re: Funny Maybe I'm just in a bad mood this afternoon, but I actually thought that clip was a little mean and not at all educational. What did anyone else think?-, Indianapolis (mom to Johann, helmet free for 2 years, and Anders, 6 mo. and soon-to-be banded)> >> > Here's something that I found quite funny. My sister-in-law saw this and sent it to me. I guess this talk show host has been giving updates on her nephew's helmet and he's finally getting it off!> > > > http://www.eonline. com/videos/ v31038026001_ Chelsea_Lately_ _Helmet_Friendly .html> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2009 Report Share Posted August 3, 2009 I think there was definitely a bit of a mean tone, but agree thats the way that particular comedian is. My husband had turned the show on as she started the monologue. On one hand, yeah its great that more people will be aware of the need for a helmet. I have had more questions since then, and its great to educate. On the other hand, my son has a very very rare genetic syndrome, which affects him physically and mentally, so it was frustrating and saddening to hear her talking about how the "helmet wasn't needed because he's retarded!" Ouch. I had both a pediatrician and a therapist imply that maybe we shouldn't do the helmet since he was already disabled. However, its something I'd do as a mom for a typical child, and my son doesn't deserve any less because of the way he was born. So I would have enjoyed the routine more if she had left out the "retard" point. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2010 Report Share Posted February 14, 2010 I've been good on the diet, just started, not cheating, even waiting on all my supplements yet, Do u know the last 2 night's that fungus has been making me dream of cakes and pies! LOL I NEVER dream like that. I almost wanted to get up and eat some frozen blueberries I have! That stuff is evil..... Cuz of course there are no cakes or pies in my house.....My friend had a small box of candy, I read the back, 27 grams of sugar! I use to eat that stuff all the time! No wonder the candida is taughting me...... Feeling the good pain of recovery; Jeanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2010 Report Share Posted August 12, 2010 lol, you can also put the vial in a glass of warm water, just don't cover the top. Saves the ice on the girls:) ________________________________ From: laura smith <iamlaurasmith@...> healyh < > Sent: Thu, August 12, 2010 6:49:23 PM Subject: funny Hello everyone! Ever had one of those moments when you just laugh? My son tells us at 8 tonight that he feels like crap and NEEDS his SubQ. (He is 14 and does NOT ever ask for them.) We talk him into letting us stick him w/o Emla to cut the time down. How to warm the Gamma quickly? My smart self says, " I can put it under my boob to warm it. Thank goodness I'm in the middle of a hot flash-it'll do the job quickly. " You could have heard a pin drop with the jaws of my husband and son. I thought it was hilarious after I realized I had said it out loud. From: sudubo@... Date: Thu, 12 Aug 2010 17:29:30 -0700 Subject: Re: Cincinnati Children's, jamie I agree ....with all their complex cases, it's time they get some mitochondrial specialists. In April when we were there, they were thinking about sending e to Cleveland Clinic, apparently they have a mito clinic. But we saw Dr Koenig in Houston after we came home....but yes I do think it's time Cincinnati Children's develop a mito clinic....especially since the doctors of the other specialties are aware of the disorders and would probably have plenty referrals. Sue From: Jefferson <jamie@...> Subject: RE: Cincinnati Children's Date: Thursday, August 12, 2010, 4:13 AM 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 oh what won't we do for our children. Mommy award. Ursula Mom to (17) and Macey (15) http://www.caringbridge.org/visit/maceyholleman http://maceysjourney.blogspot.com ________________________________ From: laura smith <iamlaurasmith@...> healyh < > Sent: Thu, August 12, 2010 9:49:23 PM Subject: funny Hello everyone! Ever had one of those moments when you just laugh? My son tells us at 8 tonight that he feels like crap and NEEDS his SubQ. (He is 14 and does NOT ever ask for them.) We talk him into letting us stick him w/o Emla to cut the time down. How to warm the Gamma quickly? My smart self says, " I can put it under my boob to warm it. Thank goodness I'm in the middle of a hot flash-it'll do the job quickly. " You could have heard a pin drop with the jaws of my husband and son. I thought it was hilarious after I realized I had said it out loud. From: sudubo@... Date: Thu, 12 Aug 2010 17:29:30 -0700 Subject: Re: Cincinnati Children's, jamie I agree ....with all their complex cases, it's time they get some mitochondrial specialists. In April when we were there, they were thinking about sending e to Cleveland Clinic, apparently they have a mito clinic. But we saw Dr Koenig in Houston after we came home....but yes I do think it's time Cincinnati Children's develop a mito clinic....especially since the doctors of the other specialties are aware of the disorders and would probably have plenty referrals. Sue From: Jefferson <jamie@...> Subject: RE: Cincinnati Children's Date: Thursday, August 12, 2010, 4:13 AM 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 oh what won't we do for our children. Mommy award. Ursula Mom to (17) and Macey (15) http://www.caringbridge.org/visit/maceyholleman http://maceysjourney.blogspot.com ________________________________ From: laura smith <iamlaurasmith@...> healyh < > Sent: Thu, August 12, 2010 9:49:23 PM Subject: funny Hello everyone! Ever had one of those moments when you just laugh? My son tells us at 8 tonight that he feels like crap and NEEDS his SubQ. (He is 14 and does NOT ever ask for them.) We talk him into letting us stick him w/o Emla to cut the time down. How to warm the Gamma quickly? My smart self says, " I can put it under my boob to warm it. Thank goodness I'm in the middle of a hot flash-it'll do the job quickly. " You could have heard a pin drop with the jaws of my husband and son. I thought it was hilarious after I realized I had said it out loud. From: sudubo@... Date: Thu, 12 Aug 2010 17:29:30 -0700 Subject: Re: Cincinnati Children's, jamie I agree ....with all their complex cases, it's time they get some mitochondrial specialists. In April when we were there, they were thinking about sending e to Cleveland Clinic, apparently they have a mito clinic. But we saw Dr Koenig in Houston after we came home....but yes I do think it's time Cincinnati Children's develop a mito clinic....especially since the doctors of the other specialties are aware of the disorders and would probably have plenty referrals. Sue From: Jefferson <jamie@...> Subject: RE: Cincinnati Children's Date: Thursday, August 12, 2010, 4:13 AM 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 hehehe, whatever works, baby! From: Jefferson <jamie@...> Subject: RE: Cincinnati Children's Date: Thursday, August 12, 2010, 4:13 AM Â 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 hehehe, whatever works, baby! From: Jefferson <jamie@...> Subject: RE: Cincinnati Children's Date: Thursday, August 12, 2010, 4:13 AM Â 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 13, 2010 Report Share Posted August 13, 2010 That is too funny!!!       BYrd http://www.caringbridge.org/visit/deanabyrd _____________________________________________________________________________ __________________ -- 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 December 19, 2010 Report Share Posted December 19, 2010 oh my, i'm sorry to hear you have to repair your roof and get a new keyboard. thank goodness you have a spare computer. happy sunday, karron >Funny as in peculiar. Yesterday I tried to get in on the >conversation, but my computer kept giving me a hard time. It >wouldn't display the characters that I was typing. I turned the >keyboard up side down to shake it and water ran out. I looked up and >saw that my roof was leaking. Its been raining for two days here. >PS: I am now on a different computer. >Have a good day. >ew > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2010 Report Share Posted December 19, 2010 Hi. I have waterlogged my mouse, my keyboard, etc. I replaced the mouse and plugged in a new keyboard. Works fine. One would think I would have learned no to put any glass of ANYTHING near my computer. But oh no, not Melody, Melody has to learn the hard way. lol Mel > > oh my, i'm sorry to hear you have to repair your roof and get a new > keyboard. thank goodness you have a spare computer. > > happy sunday, > karron > > > > >Funny as in peculiar. Yesterday I tried to get in on the > >conversation, but my computer kept giving me a hard time. It > >wouldn't display the characters that I was typing. I turned the > >keyboard up side down to shake it and water ran out. I looked up and > >saw that my roof was leaking. Its been raining for two days here. > >PS: I am now on a different computer. > >Have a good day. > >ew > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2010 Report Share Posted December 19, 2010 I saw a lot of water on the floor of a restaurant women's room last night and when I went to the sink to wash my hands I discovered the source. The drip from the ceiling hit the top of my head. I got out of there fast. Ann. On Sun Dec 19th, 2010 8:34 AM MST Karron Lynn Lane wrote: >oh my, i'm sorry to hear you have to repair your roof and get a new >keyboard. thank goodness you have a spare computer. > >happy sunday, >karron > > > >>Funny as in peculiar. Yesterday I tried to get in on the >>conversation, but my computer kept giving me a hard time. It >>wouldn't display the characters that I was typing. I turned the >>keyboard up side down to shake it and water ran out. I looked up and >>saw that my roof was leaking. Its been raining for two days here. >>PS: I am now on a different computer. >>Have a good day. >>ew >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2011 Report Share Posted February 25, 2011 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.