Guest guest Posted February 5, 2003 Report Share Posted February 5, 2003 When my son was first born,I poured over medical journals(my brother and sister-in-law our doctors)and consulted many specialists.I could not find an answer in the medical books,club feet can be associated with many syndromes.All of the doctors kept saying that our son was a puzzle.all genetic testing has come back normal.From what the doctors told us,Sometimes you can have a cluster of anomalies,unrelated problems that just occurred simultaneously because of the point in development inutero at which time the problem occurred.Apparently,for our son's issues happened around 5 weeks gestation.Even though the club feet did not show up until 20 weeks. When they told us at about 20 weeks that Henry had club feet,they said there were hundreds of syndromes it could be associated with,but all of the other children I have met with club feet do not have any other problems.The vast majority of kids on this site do not either. It is interesting that of the children that do have other issues,hypospadias seems to be one.... Good luck finding answers,just keep asking questions. The next time we see the geneticist I will mention this. Lauri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2003 Report Share Posted February 5, 2003 When my son was first born,I poured over medical journals(my brother and sister-in-law our doctors)and consulted many specialists.I could not find an answer in the medical books,club feet can be associated with many syndromes.All of the doctors kept saying that our son was a puzzle.all genetic testing has come back normal.From what the doctors told us,Sometimes you can have a cluster of anomalies,unrelated problems that just occurred simultaneously because of the point in development inutero at which time the problem occurred.Apparently,for our son's issues happened around 5 weeks gestation.Even though the club feet did not show up until 20 weeks. When they told us at about 20 weeks that Henry had club feet,they said there were hundreds of syndromes it could be associated with,but all of the other children I have met with club feet do not have any other problems.The vast majority of kids on this site do not either. It is interesting that of the children that do have other issues,hypospadias seems to be one.... Good luck finding answers,just keep asking questions. The next time we see the geneticist I will mention this. Lauri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2003 Report Share Posted February 5, 2003 Hey THeresa,hope you are doing well.Pardon my ignorance,but what is craniostynosis? Lauri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2003 Report Share Posted February 5, 2003 Hey THeresa,hope you are doing well.Pardon my ignorance,but what is craniostynosis? Lauri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2003 Report Share Posted February 5, 2003 Hey THeresa,hope you are doing well.Pardon my ignorance,but what is craniostynosis? Lauri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2003 Report Share Posted February 5, 2003 Good to hear from you,too.Thanks for educating me on the craniostynosis. Lauri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2003 Report Share Posted February 5, 2003 Good to hear from you,too.Thanks for educating me on the craniostynosis. Lauri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2003 Report Share Posted February 5, 2003 Lauri, It's good to be hearing from you again. We are doing well. Simply put, craniosynostosis is when there is no soft spot. For those who don't know, a baby's skull is in multiple parts when s/he is born. The reasons for this are so that the head can mold while going through the birth canal and also to allow for the growth of the brain. In my case, I had surgery at 4 months old to essentially create a soft spot. lswannfrost@... wrote: > Hey THeresa,hope you are doing well.Pardon my ignorance,but what is > craniostynosis? > Lauri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2003 Report Share Posted February 5, 2003 Lauri, It's good to be hearing from you again. We are doing well. Simply put, craniosynostosis is when there is no soft spot. For those who don't know, a baby's skull is in multiple parts when s/he is born. The reasons for this are so that the head can mold while going through the birth canal and also to allow for the growth of the brain. In my case, I had surgery at 4 months old to essentially create a soft spot. lswannfrost@... wrote: > Hey THeresa,hope you are doing well.Pardon my ignorance,but what is > craniostynosis? > Lauri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2003 Report Share Posted February 5, 2003 Dear : Sorry, I am also jumping in late. You are not alone. I know how you are feeling and if you ever need support please write to me. Our daughter Alison had bilateral clubfeet. She has been diagnosed with a " balanced translocation " of chromosomes 1and 7. This means her number 1 and 7 chromosome have swapped some DNA. It is considered balanced because there was no loss or gain of DNA. As a result she has gross and fine motor delays, severe reflux, her head has only grown 1/4 of an inch in the past 10 months, poor weight gain, swallowing problems, speech problems. We do PT, OT, speech, music, early intervention on and on. Alison just turned 2 today. She recently learned to sit up and hold her own bottle. She/we have many challenges. We use to take it day by day but have learned to adjust to a month to month basis I sincerely mean it when I say to write. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2003 Report Share Posted February 5, 2003 Dear : Sorry, I am also jumping in late. You are not alone. I know how you are feeling and if you ever need support please write to me. Our daughter Alison had bilateral clubfeet. She has been diagnosed with a " balanced translocation " of chromosomes 1and 7. This means her number 1 and 7 chromosome have swapped some DNA. It is considered balanced because there was no loss or gain of DNA. As a result she has gross and fine motor delays, severe reflux, her head has only grown 1/4 of an inch in the past 10 months, poor weight gain, swallowing problems, speech problems. We do PT, OT, speech, music, early intervention on and on. Alison just turned 2 today. She recently learned to sit up and hold her own bottle. She/we have many challenges. We use to take it day by day but have learned to adjust to a month to month basis I sincerely mean it when I say to write. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2003 Report Share Posted February 5, 2003 Dear : Sorry, I am also jumping in late. You are not alone. I know how you are feeling and if you ever need support please write to me. Our daughter Alison had bilateral clubfeet. She has been diagnosed with a " balanced translocation " of chromosomes 1and 7. This means her number 1 and 7 chromosome have swapped some DNA. It is considered balanced because there was no loss or gain of DNA. As a result she has gross and fine motor delays, severe reflux, her head has only grown 1/4 of an inch in the past 10 months, poor weight gain, swallowing problems, speech problems. We do PT, OT, speech, music, early intervention on and on. Alison just turned 2 today. She recently learned to sit up and hold her own bottle. She/we have many challenges. We use to take it day by day but have learned to adjust to a month to month basis I sincerely mean it when I say to write. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2003 Report Share Posted February 6, 2003 Hi ,my son Henry also has reflux and swallowing problems.Just out of curiosity,does your daughter have any issues with food.Henry,for all practical purposes will only drink Pediasure out of a bottle.He also has Sensory Integration problems that cause most of the eating issues.Just wondering if anyone else had feeding issues. Lauri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2003 Report Share Posted February 6, 2003 Hi ,my son Henry also has reflux and swallowing problems.Just out of curiosity,does your daughter have any issues with food.Henry,for all practical purposes will only drink Pediasure out of a bottle.He also has Sensory Integration problems that cause most of the eating issues.Just wondering if anyone else had feeding issues. Lauri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2003 Report Share Posted February 6, 2003 Hi ,my son Henry also has reflux and swallowing problems.Just out of curiosity,does your daughter have any issues with food.Henry,for all practical purposes will only drink Pediasure out of a bottle.He also has Sensory Integration problems that cause most of the eating issues.Just wondering if anyone else had feeding issues. Lauri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2003 Report Share Posted February 8, 2003 To whomever this makes it to: My name is Troy and I am a new uncle of a healthy baby boy named . was born with club feet on both his right and left foot. I have never even heard of clubfoot until now. We have taken him to an Orthapaedic Pediatrician and now at 8 days old he is casted from hip to toes on both legs. I s this normal?.. I have tryed to research the deformity on the internet however i am not an avid internet user and am having difficulty if someone could lend us all a little advice it would be greatly appreciated. I would also like to wish your baby jacob a happy birthday even though I do not know his case I am sure that every birthday is a welcomed day. As is everyday i get to spend with my little nephew.. thanks for any help you have and i look forward to talking with all of the group. I need some help however figuring out how to chat with the group all at once or even one at a time. thanks again, troy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2003 Report Share Posted February 9, 2003 hello thank you for the response ....my nephew is in casts up to his hips i am not sure if they are using the ponseti method.. i have been researching as much as i can on the whole thing and some of it is frankly scary..I live in Georgia..a town called jasper. I t is north of Atlanta by about an hour and a half. How is your child doing ..has he started the corrections and do these casts work ? How will we know if he needs surgery or not..We are lost confused and scared at this point not knowing anything makes this whole experience twice as bad. If you could offer some helpful hints they would greatly be appreciated... hope to hear from you soon.. Troy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2003 Report Share Posted February 9, 2003 hello thank you for the response ....my nephew is in casts up to his hips i am not sure if they are using the ponseti method.. i have been researching as much as i can on the whole thing and some of it is frankly scary..I live in Georgia..a town called jasper. I t is north of Atlanta by about an hour and a half. How is your child doing ..has he started the corrections and do these casts work ? How will we know if he needs surgery or not..We are lost confused and scared at this point not knowing anything makes this whole experience twice as bad. If you could offer some helpful hints they would greatly be appreciated... hope to hear from you soon.. Troy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2003 Report Share Posted February 9, 2003 Hello and welcome to the group there are many parents here who will answer any questions you might have and, just reading the post from other parents offen answers questions for me ( It also lets me know that I am not the only one with this same problem). Where are you from and what kind of treatment is your nephew getting right now Ponseti Method or the traditional? Leora and Dylan (03/03/02 Bilateral clubfoot) RISKYBUSINESS017@... wrote:To whomever this makes it to: My name is Troy and I am a new uncle of a healthy baby boy named . was born with club feet on both his right and left foot. I have never even heard of clubfoot until now. We have taken him to an Orthapaedic Pediatrician and now at 8 days old he is casted from hip to toes on both legs. I s this normal?.. I have tryed to research the deformity on the internet however i am not an avid internet user and am having difficulty if someone could lend us all a little advice it would be greatly appreciated. I would also like to wish your baby jacob a happy birthday even though I do not know his case I am sure that every birthday is a welcomed day. As is everyday i get to spend with my little nephew.. thanks for any help you have and i look forward to talking with all of the group. I need some help however figuring out how to chat with the group all at once or even one at a time. thanks again, troy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2003 Report Share Posted February 9, 2003 Hello and welcome to the group there are many parents here who will answer any questions you might have and, just reading the post from other parents offen answers questions for me ( It also lets me know that I am not the only one with this same problem). Where are you from and what kind of treatment is your nephew getting right now Ponseti Method or the traditional? Leora and Dylan (03/03/02 Bilateral clubfoot) RISKYBUSINESS017@... wrote:To whomever this makes it to: My name is Troy and I am a new uncle of a healthy baby boy named . was born with club feet on both his right and left foot. I have never even heard of clubfoot until now. We have taken him to an Orthapaedic Pediatrician and now at 8 days old he is casted from hip to toes on both legs. I s this normal?.. I have tryed to research the deformity on the internet however i am not an avid internet user and am having difficulty if someone could lend us all a little advice it would be greatly appreciated. I would also like to wish your baby jacob a happy birthday even though I do not know his case I am sure that every birthday is a welcomed day. As is everyday i get to spend with my little nephew.. thanks for any help you have and i look forward to talking with all of the group. I need some help however figuring out how to chat with the group all at once or even one at a time. thanks again, troy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2003 Report Share Posted February 9, 2003 Hello and welcome to the group there are many parents here who will answer any questions you might have and, just reading the post from other parents offen answers questions for me ( It also lets me know that I am not the only one with this same problem). Where are you from and what kind of treatment is your nephew getting right now Ponseti Method or the traditional? Leora and Dylan (03/03/02 Bilateral clubfoot) RISKYBUSINESS017@... wrote:To whomever this makes it to: My name is Troy and I am a new uncle of a healthy baby boy named . was born with club feet on both his right and left foot. I have never even heard of clubfoot until now. We have taken him to an Orthapaedic Pediatrician and now at 8 days old he is casted from hip to toes on both legs. I s this normal?.. I have tryed to research the deformity on the internet however i am not an avid internet user and am having difficulty if someone could lend us all a little advice it would be greatly appreciated. I would also like to wish your baby jacob a happy birthday even though I do not know his case I am sure that every birthday is a welcomed day. As is everyday i get to spend with my little nephew.. thanks for any help you have and i look forward to talking with all of the group. I need some help however figuring out how to chat with the group all at once or even one at a time. thanks again, troy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2003 Report Share Posted February 9, 2003 Troy, If you are going to the Atlanta ish Rite hospital, they are using the Ponseti method. They had Dr. Ponseti come there about a year ago to do a training clinic. There are a couple of parents here from Georgia who went to that clinic and left messages here. http://groups.yahoo.com/group/nosurgery4clubfoot/message/10599 http://groups.yahoo.com/group/nosurgery4clubfoot/message/10631 For basic information on clubfoot and the Ponseti method, please look at Dr. Ponseti's web site at http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/index.html If you have any questions, just ask and we will all try to help. and (3-17-99) http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/egbert.html > hello thank you for the response ....my nephew is in casts up to his hips i > am not sure if they are using the ponseti method.. i have been researching as > much as i can on the whole thing and some of it is frankly scary..I live in > Georgia..a town called jasper. I t is north of Atlanta by about an hour and a > half. How is your child doing ..has he started the corrections and do these > casts work ? How will we know if he needs surgery or not..We are lost > confused and scared at this point not knowing anything makes this whole > experience twice as bad. If you could offer some helpful hints they would > greatly be appreciated... > > hope to hear from you soon.. > Troy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2003 Report Share Posted February 9, 2003 Hello , Thank you for your response. It is quite useful to receive this information such that I may forward this to docters doing research on anomalies. On another note best wishes for your son's fifth birthday. thank you again !!! Lydia & Ben , Re: Re: Associated anomalies Lidia, Welcome to our group. My son (who'll be 5 this weekend) doesn't have any other " problems " other than his bilateral clubfeet. However, I was born with craniosynostosis (I'm not sure which type). " lydiamarandola " wrote: > --- > Hello, > > I am a new memeber. My son has a right clubfoot ranked pretty severe > ( on a scale from 1 to 10 a 7 ). Apart from this condition he has > hipospadias, sagittal craniosynistosis and a trigger thumb. I would > like some answer to the probable causes and it seems to be difficult > to obtain one. > > I am suprised to know that some children with clubfeet condition have > hypospadias. > Would you kindly refer me to any source of book or medical journals. > > > Thank you > > Lidia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2003 Report Share Posted February 9, 2003 Dear Lauri & family Thank you soo much for your information. It was very reassuring and thoughtful on your behalf. From reading through the nosurgery website I came across a group of e-mails related to anomalies with clubfoot children in which it referred that clubfeet children usually have other anomolies. The email I am referring to is the one dated feb 1st 2003. The following is a quote from a doctoral thesis by Mr Eero Somppi (Acta Orthopaedica Scandinavica, 1984), and the reason I got curious about the possible anomalies associated with clubfoot: " ... clubfoot appears rather frequently in connection with other anomalies, such as dislocated hip, hernia, multianomalies, platoschisis, syndactyly, aplasia radi, amniotic stricture, mental retardation, scoliosis, syndroma Pierre-Robin, hydrocephalus, webbed toes, mongolism and pectus carinatum. " Sanna and Veeti (6.5.02, left cf & webbed fingers, only three fingers on the left hand and six on the right) It was very scarry for me to come across this source of data as the doctors here in Montreal never discussed possibility of other types of anomolies other than the ones he already has ( clubfeet, hypospadias, craniosynistosis, one triggerthumb). In sum , I simply was searching for answers and was wondering if there were other parents faced with the same health problems as our son. This would help us as some sort of support. Thany you again Lori. Re: Re: Associated anomalies When my son was first born,I poured over medical journals(my brother and sister-in-law our doctors)and consulted many specialists.I could not find an answer in the medical books,club feet can be associated with many syndromes.All of the doctors kept saying that our son was a puzzle.all genetic testing has come back normal.From what the doctors told us,Sometimes you can have a cluster of anomalies,unrelated problems that just occurred simultaneously because of the point in development inutero at which time the problem occurred.Apparently,for our son's issues happened around 5 weeks gestation.Even though the club feet did not show up until 20 weeks. When they told us at about 20 weeks that Henry had club feet,they said there were hundreds of syndromes it could be associated with,but all of the other children I have met with club feet do not have any other problems.The vast majority of kids on this site do not either. It is interesting that of the children that do have other issues,hypospadias seems to be one.... Good luck finding answers,just keep asking questions. The next time we see the geneticist I will mention this. Lauri Quote Link to comment Share on other sites More sharing options...
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