Guest guest Posted August 5, 2004 Report Share Posted August 5, 2004 Hi, my name is and I have a 4 year old son (Caden) who may possibly have . He started with recurrent fevers at 6 months and they continue today. He was born prematurely and spent some time in the NICU. He also suffered from severe reflux and constipation issues (still does today). His fevers in the first few years were chalked up to being in daycare and being premature. We are on our 5th pediatrician and he isn't even 5 yet!!! (we did move during that time so that explains one switch) The peds just kept on saying virus, virus and would send us on the way. We finally found one that we LOVE in August 2003. His tonsils were removed in January 2003 and that helped for about 4 months, then back to the fevers. We currently see a Pediatric Immunologist who initially diagnosed him with cyclic neutropenia. We are not sure if it is that or . He will start blood testing (3x's a week for 6 weeks) next week to either rule out or confirm the cyclic neutropenia diagnosis. He is also seeing a hematologist tomorrow about the possible neutropenia. I also have an 11 1/2 month old daughter, Brooklyn (birthday is next week, 8/12). She was full term and is a healthy little girl, thank goodness. Coppell (suburb of Dallas), Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2004 Report Share Posted August 5, 2004 , I'm in Denton and would love it if you could send me the names of your doctors. My 22 month old has been going through the blood work for the last two weeks. We are now just waiting for the next fever to sprout up so we can finish the blood testing and get a firm diagnosis of cyclic neutropenia. Thanks! Dillon Age 22 mo. Denton, Texas Hi - new here! Hi, my name is and I have a 4 year old son (Caden) who may possibly have . He started with recurrent fevers at 6 months and they continue today. He was born prematurely and spent some time in the NICU. He also suffered from severe reflux and constipation issues (still does today). His fevers in the first few years were chalked up to being in daycare and being premature. We are on our 5th pediatrician and he isn't even 5 yet!!! (we did move during that time so that explains one switch) The peds just kept on saying virus, virus and would send us on the way. We finally found one that we LOVE in August 2003. His tonsils were removed in January 2003 and that helped for about 4 months, then back to the fevers. We currently see a Pediatric Immunologist who initially diagnosed him with cyclic neutropenia. We are not sure if it is that or . He will start blood testing (3x's a week for 6 weeks) next week to either rule out or confirm the cyclic neutropenia diagnosis. He is also seeing a hematologist tomorrow about the possible neutropenia. I also have an 11 1/2 month old daughter, Brooklyn (birthday is next week, 8/12). She was full term and is a healthy little girl, thank goodness. Coppell (suburb of Dallas), Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2004 Report Share Posted August 5, 2004 Hi ! I am more than glad to share the names of our docs. Here goes (oh and all are at Medical City in Dallas, off Forest and 75) Pediatrician - Dr. Straughn Pediatric Immunologist - Dr. Wasserman Pediatric Hematologist - Dr. Goldman?? It is the Pediatric Hematology/ Oncology Clinic at Medical City Let me know if you need numbers. --------- Hi - new here! Hi, my name is and I have a 4 year old son (Caden) who may possibly have . He started with recurrent fevers at 6 months and they continue today. He was born prematurely and spent some time in the NICU. He also suffered from severe reflux and constipation issues (still does today). His fevers in the first few years were chalked up to being in daycare and being premature. We are on our 5th pediatrician and he isn't even 5 yet!!! (we did move during that time so that explains one switch) The peds just kept on saying virus, virus and would send us on the way. We finally found one that we LOVE in August 2003. His tonsils were removed in January 2003 and that helped for about 4 months, then back to the fevers. We currently see a Pediatric Immunologist who initially diagnosed him with cyclic neutropenia. We are not sure if it is that or . He will start blood testing (3x's a week for 6 weeks) next week to either rule out or confirm the cyclic neutropenia diagnosis. He is also seeing a hematologist tomorrow about the possible neutropenia. I also have an 11 1/2 month old daughter, Brooklyn (birthday is next week, 8/12). She was full term and is a healthy little girl, thank goodness. Coppell (suburb of Dallas), Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2011 Report Share Posted May 9, 2011 Hei Alison,Happy Birthday to Johannes and good luck with the treatment! Im from Finland and my son was treated here, he had scoliosis over 30degrees, they couldnt measure it well. At age of 20months he was casted, he was 1year in cast (changed every ca.2months) and 1year in braces, and it worked, now he is straight. I hope it goes same with your son! We noticed Antoni's backbone curve much earlier, but we were told by few doctors that it would correct by itself, finally we got to fantastic doctor who new dr Mehta treatment. The beginning was scary, huuuge stress before 1st casting, many x-rays envolved, thousands of questions in head, I got great help from people on this forum. Come and write here and you get support and much information. Good luck with starting treatment and later!Magdalena, mother of Antoni2011/5/9 gingerert <gingerert@...> Hi Alison, I'm also from the UK, although I have lived in the USA since 2001. Apparently scoliosis is more common in Europe than over here - who knew? Anyway, I just wanted to say hello because I'm a new member too. My son is currently in the middle of treatment for scoliosis in th lumbar region, and I think we're nearing the light at the end of the tunnel. I hope everything works out for yur little one. Eleanor > > <https://mywebmail.warwick.ac.uk/exchweb/bin/redir.asp?URL=https://files.warwick.ac.uk/nsnodgrass/home> > Hi > My name is Alison and I live in Coventry, UK. My son, Johannes, is one year old today! > > I noticed that he had something a bit odd with his back in January and mentioned it when I saw a paediatrician on 17 February. He sent my son immediately for an x-ray and we saw an orthopaedic surgeon the same day. I was told that he had infantile scoliosis but it was mild and it would just be a case of monitoring it on his first and second birthday. Basically, they said it would correct itself and not to worry - so I stupidly did just that and didn't look into scoliosis much. > > At our appointment last week though he had another x-ray (this time of his whole spine - the first one was only part of his spine) and we were told that they thought that his back had got worse. There is a 33 degree curve in the thoracic section and a 24 degree curve in the lumbar section (ie an S shape). We have been referred to the Birmingham Royal Orthopaedic Hospital, but don't have a date yet and there might be a waiting list. > > I'm looking forward to being a member of this group in terms of getting as much information as possible. I am a single mother, and the support from others will be really important - it feels like a bit of a rollercoaster at the moment. I am trying to be strong and am determined to get the best for my son, yet it's a bit overwhelming. I feel very ignorant (I'd never even heard of scoliosis till February). > > I have been googling like mad to try and get more information. We don't yet know what type of scoliosis it is, so I am reading everything and it's scary! It's clear that some treatments can be very effective (the casting seems to have great results) but who knows whether it'll be suitable for my son. I read yesterday about the potentially damaging consequences of lots of x-rays on babies and he might be having lots so that's worrying me too. > > That's our journey so far! > > Best wishes and I look forward to getting to know you through the emails. > > Alison <https://mywebmail.warwick.ac.uk/exchweb/bin/redir.asp?URL=https://mywebmail.warwick.ac.uk/Exchweb/bin/redir.asp?URL=https://files.warwick.ac.uk/nsnodgrass/home> > -- Magdalena Jasinska-NurmelaNorkkokuja 2B 20, 01360 Vantaa, FinlandGSM 00358 505 717 292 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2011 Report Share Posted May 10, 2011 Hi Eleanor Thank you for your email. I wonder why it's more common in Europe!! I hope your son's treatment continues to go well - it's great to be nearing the light at the end of the tunnel. We're just going in and it's helpful to think we might come out again! I'm sure we'll be in touch via the email group again. I'm so glad I've found somewhere where I can contact other people in the same boat. All the best Alison From: infantile scoliosis treatment on behalf of gingerertSent: Mon 09/05/2011 21:48infantile scoliosis treatment Subject: Re: Hi - new here! Hi Alison,I'm also from the UK, although I have lived in the USA since 2001. Apparently scoliosis is more common in Europe than over here - who knew?Anyway, I just wanted to say hello because I'm a new member too. My son is currently in the middle of treatment for scoliosis in th lumbar region, and I think we're nearing the light at the end of the tunnel.I hope everything works out for yur little one.Eleanor>> <https://mywebmail.warwick.ac.uk/exchweb/bin/redir.asp?URL=https://files.warwick.ac.uk/nsnodgrass/home> > Hi> My name is Alison and I live in Coventry, UK. My son, Johannes, is one year old today!> > I noticed that he had something a bit odd with his back in January and mentioned it when I saw a paediatrician on 17 February. He sent my son immediately for an x-ray and we saw an orthopaedic surgeon the same day. I was told that he had infantile scoliosis but it was mild and it would just be a case of monitoring it on his first and second birthday. Basically, they said it would correct itself and not to worry - so I stupidly did just that and didn't look into scoliosis much. > > At our appointment last week though he had another x-ray (this time of his whole spine - the first one was only part of his spine) and we were told that they thought that his back had got worse. There is a 33 degree curve in the thoracic section and a 24 degree curve in the lumbar section (ie an S shape). We have been referred to the Birmingham Royal Orthopaedic Hospital, but don't have a date yet and there might be a waiting list. > > I'm looking forward to being a member of this group in terms of getting as much information as possible. I am a single mother, and the support from others will be really important - it feels like a bit of a rollercoaster at the moment. I am trying to be strong and am determined to get the best for my son, yet it's a bit overwhelming. I feel very ignorant (I'd never even heard of scoliosis till February). > > I have been googling like mad to try and get more information. We don't yet know what type of scoliosis it is, so I am reading everything and it's scary! It's clear that some treatments can be very effective (the casting seems to have great results) but who knows whether it'll be suitable for my son. I read yesterday about the potentially damaging consequences of lots of x-rays on babies and he might be having lots so that's worrying me too.> > That's our journey so far! > > Best wishes and I look forward to getting to know you through the emails. > > Alison <https://mywebmail.warwick.ac.uk/exchweb/bin/redir.asp?URL=https://mywebmail.warwick.ac.uk/Exchweb/bin/redir.asp?URL=https://files.warwick.ac.uk/nsnodgrass/home>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2011 Report Share Posted May 10, 2011 Thank you so much for your email. I'm sure I'll have lots of questions as we go through this. It's wonderful to be in contact with others who are in the same situation (and to hear that the treatment worked - great news! So pleased for you and your family). Best wishes Alison From: infantile scoliosis treatment on behalf of Magda Jasinska-NurmelaSent: Mon 09/05/2011 22:04infantile scoliosis treatment Subject: Re: Re: Hi - new here! Hei Alison,Happy Birthday to Johannes and good luck with the treatment! Im from Finland and my son was treated here, he had scoliosis over 30degrees, they couldnt measure it well. At age of 20months he was casted, he was 1year in cast (changed every ca.2months) and 1year in braces, and it worked, now he is straight. I hope it goes same with your son! We noticed Antoni's backbone curve much earlier, but we were told by few doctors that it would correct by itself, finally we got to fantastic doctor who new dr Mehta treatment. The beginning was scary, huuuge stress before 1st casting, many x-rays envolved, thousands of questions in head, I got great help from people on this forum. Come and write here and you get support and much information. Good luck with starting treatment and later!Magdalena, mother of Antoni 2011/5/9 gingerert <gingerert@...> Hi Alison,I'm also from the UK, although I have lived in the USA since 2001. Apparently scoliosis is more common in Europe than over here - who knew?Anyway, I just wanted to say hello because I'm a new member too. My son is currently in the middle of treatment for scoliosis in th lumbar region, and I think we're nearing the light at the end of the tunnel.I hope everything works out for yur little one.Eleanor>> <https://mywebmail.warwick.ac.uk/exchweb/bin/redir.asp?URL=https://files.warwick.ac.uk/nsnodgrass/home> > Hi> My name is Alison and I live in Coventry, UK. My son, Johannes, is one year old today!> > I noticed that he had something a bit odd with his back in January and mentioned it when I saw a paediatrician on 17 February. He sent my son immediately for an x-ray and we saw an orthopaedic surgeon the same day. I was told that he had infantile scoliosis but it was mild and it would just be a case of monitoring it on his first and second birthday. Basically, they said it would correct itself and not to worry - so I stupidly did just that and didn't look into scoliosis much. > > At our appointment last week though he had another x-ray (this time of his whole spine - the first one was only part of his spine) and we were told that they thought that his back had got worse. There is a 33 degree curve in the thoracic section and a 24 degree curve in the lumbar section (ie an S shape). We have been referred to the Birmingham Royal Orthopaedic Hospital, but don't have a date yet and there might be a waiting list. > > I'm looking forward to being a member of this group in terms of getting as much information as possible. I am a single mother, and the support from others will be really important - it feels like a bit of a rollercoaster at the moment. I am trying to be strong and am determined to get the best for my son, yet it's a bit overwhelming. I feel very ignorant (I'd never even heard of scoliosis till February). > > I have been googling like mad to try and get more information. We don't yet know what type of scoliosis it is, so I am reading everything and it's scary! It's clear that some treatments can be very effective (the casting seems to have great results) but who knows whether it'll be suitable for my son. I read yesterday about the potentially damaging consequences of lots of x-rays on babies and he might be having lots so that's worrying me too.> > That's our journey so far! > > Best wishes and I look forward to getting to know you through the emails. > > Alison <https://mywebmail.warwick.ac.uk/exchweb/bin/redir.asp?URL=https://mywebmail.warwick.ac.uk/Exchweb/bin/redir.asp?URL=https://files.warwick.ac.uk/nsnodgrass/home>> -- Magdalena Jasinska-NurmelaNorkkokuja 2B 20, 01360 Vantaa, FinlandGSM 00358 505 717 292 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2011 Report Share Posted May 10, 2011 Hi Alison,Welcome to CAST! You have come to the right place for gathering solid info on Early Treatment (ET) w/ EDF/Mehta casting for infants/sm. Children w/ progressive infantile scoliosis. Please go to the Files section of CAST to read the published articles on this gentle treatment modality. The 1st one is titled “Growth as a corrective force in the early treatment of progressive infantile scoliosis,” by Mehta. There are a few more subsequent articles that were published here in the US, which are also very informative. I would also view “A New Direction” dvd which can be found on site, either on youtube to view in 3 parts, or you can order a dvd to share w/ your doc/family.If they aren’t offering ET w/ EDF/Mehta casting in your area, try Oxford…..Or feel free to email, or call me direct.Isop06@... (303) 507 2485Sincerely,HRH From: infantile scoliosis treatment [mailto:infantile scoliosis treatment ] On Behalf Of Bell, AlisonSent: Monday, May 09, 2011 1:46 PMinfantile scoliosis treatment Subject: Hi - new here! HiMy name is Alison and I live in Coventry, UK. My son, Johannes, is one year old today! I noticed that he had something a bit odd with his back in January and mentioned it when I saw a paediatrician on 17 February. He sent my son immediately for an x-ray and we saw an orthopaedic surgeon the same day. I was told that he had infantile scoliosis but it was mild and it would just be a case of monitoring it on his first and second birthday. Basically, they said it would correct itself and not to worry - so I stupidly did just that and didn't look into scoliosis much. At our appointment last week though he had another x-ray (this time of his whole spine - the first one was only part of his spine) and we were told that they thought that his back had got worse. There is a 33 degree curve in the thoracic section and a 24 degree curve in the lumbar section (ie an S shape). We have been referred to the Birmingham Royal Orthopaedic Hospital, but don't have a date yet and there might be a waiting list. I'm looking forward to being a member of this group in terms of getting as much information as possible. I am a single mother, and the support from others will be really important - it feels like a bit of a rollercoaster at the moment. I am trying to be strong and am determined to get the best for my son, yet it's a bit overwhelming. I feel very ignorant (I'd never even heard of scoliosis till February). I have been googling like mad to try and get more information. We don't yet know what type of scoliosis it is, so I am reading everything and it's scary! It's clear that some treatments can be very effective (the casting seems to have great results) but who knows whether it'll be suitable for my son. I read yesterday about the potentially damaging consequences of lots of x-rays on babies and he might be having lots so that's worrying me too.That's our journey so far! Best wishes and I look forward to getting to know you through the emails. Alison Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2011 Report Share Posted May 10, 2011 Hi Alison,Welcome to CAST! You have come to the right place for gathering solid info on Early Treatment (ET) w/ EDF/Mehta casting for infants/sm. Children w/ progressive infantile scoliosis. Please go to the Files section of CAST to read the published articles on this gentle treatment modality. The 1st one is titled “Growth as a corrective force in the early treatment of progressive infantile scoliosis,” by Mehta. There are a few more subsequent articles that were published here in the US, which are also very informative. I would also view “A New Direction” dvd which can be found on site, either on youtube to view in 3 parts, or you can order a dvd to share w/ your doc/family.If they aren’t offering ET w/ EDF/Mehta casting in your area, try Oxford…..Or feel free to email, or call me direct.Isop06@... (303) 507 2485Sincerely,HRH From: infantile scoliosis treatment [mailto:infantile scoliosis treatment ] On Behalf Of Bell, AlisonSent: Monday, May 09, 2011 1:46 PMinfantile scoliosis treatment Subject: Hi - new here! HiMy name is Alison and I live in Coventry, UK. My son, Johannes, is one year old today! I noticed that he had something a bit odd with his back in January and mentioned it when I saw a paediatrician on 17 February. He sent my son immediately for an x-ray and we saw an orthopaedic surgeon the same day. I was told that he had infantile scoliosis but it was mild and it would just be a case of monitoring it on his first and second birthday. Basically, they said it would correct itself and not to worry - so I stupidly did just that and didn't look into scoliosis much. At our appointment last week though he had another x-ray (this time of his whole spine - the first one was only part of his spine) and we were told that they thought that his back had got worse. There is a 33 degree curve in the thoracic section and a 24 degree curve in the lumbar section (ie an S shape). We have been referred to the Birmingham Royal Orthopaedic Hospital, but don't have a date yet and there might be a waiting list. I'm looking forward to being a member of this group in terms of getting as much information as possible. I am a single mother, and the support from others will be really important - it feels like a bit of a rollercoaster at the moment. I am trying to be strong and am determined to get the best for my son, yet it's a bit overwhelming. I feel very ignorant (I'd never even heard of scoliosis till February). I have been googling like mad to try and get more information. We don't yet know what type of scoliosis it is, so I am reading everything and it's scary! It's clear that some treatments can be very effective (the casting seems to have great results) but who knows whether it'll be suitable for my son. I read yesterday about the potentially damaging consequences of lots of x-rays on babies and he might be having lots so that's worrying me too.That's our journey so far! Best wishes and I look forward to getting to know you through the emails. Alison Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2011 Report Share Posted May 10, 2011 Hi Alison,Welcome to CAST! You have come to the right place for gathering solid info on Early Treatment (ET) w/ EDF/Mehta casting for infants/sm. Children w/ progressive infantile scoliosis. Please go to the Files section of CAST to read the published articles on this gentle treatment modality. The 1st one is titled “Growth as a corrective force in the early treatment of progressive infantile scoliosis,” by Mehta. There are a few more subsequent articles that were published here in the US, which are also very informative. I would also view “A New Direction” dvd which can be found on site, either on youtube to view in 3 parts, or you can order a dvd to share w/ your doc/family.If they aren’t offering ET w/ EDF/Mehta casting in your area, try Oxford…..Or feel free to email, or call me direct.Isop06@... (303) 507 2485Sincerely,HRH From: infantile scoliosis treatment [mailto:infantile scoliosis treatment ] On Behalf Of Bell, AlisonSent: Monday, May 09, 2011 1:46 PMinfantile scoliosis treatment Subject: Hi - new here! HiMy name is Alison and I live in Coventry, UK. My son, Johannes, is one year old today! I noticed that he had something a bit odd with his back in January and mentioned it when I saw a paediatrician on 17 February. He sent my son immediately for an x-ray and we saw an orthopaedic surgeon the same day. I was told that he had infantile scoliosis but it was mild and it would just be a case of monitoring it on his first and second birthday. Basically, they said it would correct itself and not to worry - so I stupidly did just that and didn't look into scoliosis much. At our appointment last week though he had another x-ray (this time of his whole spine - the first one was only part of his spine) and we were told that they thought that his back had got worse. There is a 33 degree curve in the thoracic section and a 24 degree curve in the lumbar section (ie an S shape). We have been referred to the Birmingham Royal Orthopaedic Hospital, but don't have a date yet and there might be a waiting list. I'm looking forward to being a member of this group in terms of getting as much information as possible. I am a single mother, and the support from others will be really important - it feels like a bit of a rollercoaster at the moment. I am trying to be strong and am determined to get the best for my son, yet it's a bit overwhelming. I feel very ignorant (I'd never even heard of scoliosis till February). I have been googling like mad to try and get more information. We don't yet know what type of scoliosis it is, so I am reading everything and it's scary! It's clear that some treatments can be very effective (the casting seems to have great results) but who knows whether it'll be suitable for my son. I read yesterday about the potentially damaging consequences of lots of x-rays on babies and he might be having lots so that's worrying me too.That's our journey so far! Best wishes and I look forward to getting to know you through the emails. Alison Quote Link to comment Share on other sites More sharing options...
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