Guest guest Posted December 28, 2004 Report Share Posted December 28, 2004 Hi Lea, I'm glad you found us and decided to join the group. I know you will find support and a place of belonging as you participate and read from . This is a great group and we seem to become like family. I'm looking forward to hearing more from you but sorry for the reason you are here with us. We hope to help make your days as pleasant as possible and remember that we are here 24/7. Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2004 Report Share Posted December 28, 2004 Lea Welcome to the group. I think you will find information, support and friendship. laurie > > Reply-To: > Date: Tue, 28 Dec 2004 14:48:43 -0000 > To: > Subject: New Member > > > > Hi, > > I am new to this group. I was diagnosed about a year ago with a > Complex I defect. The diagnosis was done from a muscle biopsy in > Atlanta by Dr. Shofner. > > I have also been diagnosed with CFS/FMS which I think is actually > part of the same problem. I have most of the CFS/FMS symptoms > except I don't get the sore throats or lymph node pain. I have a > lot of unrelenting fatigue, muscle pain and weakness, dizziness, > brain fog and a host of other symptoms that I think are symptoms of > Mito problems as well as CFS/FMS. > > I have been reading the posts for about a week now and am thrilled > there is this resource online. I look forward to chatting with > everyone. > Lea > > > > > > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail is > entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with their > physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2004 Report Share Posted December 28, 2004 Hi Lea, The connection between CFS/FMS and mitochondrial disease is interesting. Some experts feel that a significant number of cases labeled as CFS/FMS are really unrecognized mito. Others have suggested that a virus may serve as trigger for mitochondrial disease. At least one mito expert has screened CFS/FMS populations for certain known metabolic and mito mutations and found that a significant number did indeed have mito or another inborn metabolic disorder. In any case, I am glad you were able to get the mito diagnosis. It seems like once the CFS/FMS label is applied, it can be difficult to get anyone to look further. Welcome, Barbara _____ From: LeaFish Sent: Tuesday, December 28, 2004 8:49 AM To: Subject: New Member Hi, I am new to this group. I was diagnosed about a year ago with a Complex I defect. The diagnosis was done from a muscle biopsy in Atlanta by Dr. Shofner. I have also been diagnosed with CFS/FMS which I think is actually part of the same problem. I have most of the CFS/FMS symptoms except I don't get the sore throats or lymph node pain. I have a lot of unrelenting fatigue, muscle pain and weakness, dizziness, brain fog and a host of other symptoms that I think are symptoms of Mito problems as well as CFS/FMS. I have been reading the posts for about a week now and am thrilled there is this resource online. I look forward to chatting with everyone. Lea Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2004 Report Share Posted December 28, 2004 Lea welcome to the " group " you will find new friends who are always willing to help and be there when you need them. The group has been fantastic for me. It is great to have others who can relate to all that we go thru both physically and emotionally. Once again welcome! > > > Hi, > > I am new to this group. I was diagnosed about a year ago with a > Complex I defect. The diagnosis was done from a muscle biopsy in > Atlanta by Dr. Shofner. > > I have also been diagnosed with CFS/FMS which I think is actually > part of the same problem. I have most of the CFS/FMS symptoms > except I don't get the sore throats or lymph node pain. I have a > lot of unrelenting fatigue, muscle pain and weakness, dizziness, > brain fog and a host of other symptoms that I think are symptoms of > Mito problems as well as CFS/FMS. > > I have been reading the posts for about a week now and am thrilled > there is this resource online. I look forward to chatting with > everyone. > Lea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2004 Report Share Posted December 28, 2004 Thanks for the welcome everyone. I look forward to posting a lot in the future. I am full of questions, but I think I will try to read thru some of the info on the main page to see if questions have been addressed previously. It's great to have this resource available. Lea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2004 Report Share Posted December 28, 2004 Thanks for the welcome everyone. I look forward to posting a lot in the future. I am full of questions, but I think I will try to read thru some of the info on the main page to see if questions have been addressed previously. It's great to have this resource available. Lea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2004 Report Share Posted December 29, 2004 Lea, welcome..this is a great support group. everyone here is warm and supportive and there is alot of knowledge to be found here. welcome Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2004 Report Share Posted December 29, 2004 Lea, welcome..this is a great support group. everyone here is warm and supportive and there is alot of knowledge to be found here. welcome Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2004 Report Share Posted December 30, 2004 Welcome to the group and congratulations on the births of your children. There is no question that is mundane, please do not apologize. Answers to your questions: 1. Physicians using the Ponseti Method may not necessarily be listed on Dr. Ponseti's site. It may be that they have not yet submitted the necessary documentation of their patient cases for Dr. Ponseti's review before having their names put on Dr. Ponseti's site. However, it is important to note that there are many doctors out there who claim to be using this method while modifying it. There is a 'checklist' of questions that you may want to ask your son's treating physician that will help you to determine whether or not the doctor is following the method as it was written. You can find it at 's Ponseti Links site here: http://pages.ivillage.com/ponseti_links/id13.html 2. Casting changes can be done anywhere from 5 to 9 days apart with 7 days being the 'norm' (with the exception of the final cast which is usually worn for a period of 3 weeks). Patients who have travelled long distances and are in 'lodging' during the casting are sometimes put on a " fast track " and casted every 5 days in the interest of time. 3. Infants are extremely adaptable. They learn what they 'know'. If he starts treatment soon after birth, there really should be no 'adjustment' phase. Once full correction has been achieved with casting, infants are expected to begin wearing the brace immediately following the final cast removal. There is usually a very short adjustment phase (a few days) from cast to brace but for the most part, it is short-lived and does not pose a problem for the infant. 4. Infants will initially wear the brace full time (23 hours per day) for the first 3 months following casting - allowing one hour free time for baths. Following this period, the time in the brace is gradually reduced until it gets to nights (and naps) only (anywhere from 10 - 14 hours) until treatment is completed. The age at which a child is released from brace wear varies greatly. Initially, the minimum recommended age of release was 2 years but more recently it has been increased to age 3 and beyond following what seems to be a rash of relapses in older children who, in retrospect, may have been released from brace wear too early. It seems that more doctors are beginning to recommend brace wear until at least age 3 and then for as long as tolerated thereafter. I hope that this has helped a little. Daiga and Owen, 02/04/03 Unilateral LCF, FAB 14/24 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2004 Report Share Posted December 31, 2004 More than a little. I have never belonged to a community such as this before. Will no doubt be in touch again. Regards > > Welcome to the group and congratulations on the births of your > children. > > There is no question that is mundane, please do not apologize. > > Answers to your questions: > > 1. Physicians using the Ponseti Method may not necessarily be listed > on Dr. Ponseti's site. It may be that they have not yet submitted > the necessary documentation of their patient cases for Dr. Ponseti's > review before having their names put on Dr. Ponseti's site. However, > it is important to note that there are many doctors out there who > claim to be using this method while modifying it. There is > a 'checklist' of questions that you may want to ask your son's > treating physician that will help you to determine whether or not the > doctor is following the method as it was written. You can find it at > 's Ponseti Links site here: > > http://pages.ivillage.com/ponseti_links/id13.html > > 2. Casting changes can be done anywhere from 5 to 9 days apart with > 7 days being the 'norm' (with the exception of the final cast which > is usually worn for a period of 3 weeks). Patients who have > travelled long distances and are in 'lodging' during the casting are > sometimes put on a " fast track " and casted every 5 days in the > interest of time. > > 3. Infants are extremely adaptable. They learn what they 'know'. > If he starts treatment soon after birth, there really should be > no 'adjustment' phase. Once full correction has been achieved with > casting, infants are expected to begin wearing the brace immediately > following the final cast removal. There is usually a very short > adjustment phase (a few days) from cast to brace but for the most > part, it is short-lived and does not pose a problem for the infant. > > 4. Infants will initially wear the brace full time (23 hours per > day) for the first 3 months following casting - allowing one hour > free time for baths. Following this period, the time in the brace is > gradually reduced until it gets to nights (and naps) only (anywhere > from 10 - 14 hours) until treatment is completed. The age at which a > child is released from brace wear varies greatly. Initially, the > minimum recommended age of release was 2 years but more recently it > has been increased to age 3 and beyond following what seems to be a > rash of relapses in older children who, in retrospect, may have been > released from brace wear too early. It seems that more doctors are > beginning to recommend brace wear until at least age 3 and then for > as long as tolerated thereafter. > > I hope that this has helped a little. > > Daiga and Owen, 02/04/03 > Unilateral LCF, FAB 14/24 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2004 Report Share Posted December 31, 2004 Hi Congratulations on the birth of your twins! We live in the UK - in Woldingham in Surrey. Our son started treatment when he was 2 days old with a so called Ponseti consultant. However, the consultant did not follow the method correctly - after a few weeks,we ended up contacting Dr Ponseti himself who advised us that we should ask Naomi in Manchester to treat our son. She was trained by Dr Ponseti and is absolutely fantastic and really cares about her 'ponseti kids'.If I had my time over, I think I would have gone to Naomi in the first place, even though it was quite a trek going to Manchester each week. There is a checklist at http://www.clubfoot.co.za/checklist.htm which lists some questions you can ask the consultant, and what there answers should be. This should help give you peace of mind. I'm sure Naomi won't mind if you contact her. She is at Booth Hall Children's hospital in Manchester. I haven't got the phone number to hand, but just ring and ask to speak to her secretary. After the experience we had with our son, I cannot stress how important it is to make sure your consultant has been properly trained and is following the Ponseti method correctly. We wasted about 10 weeks of his life in plaster casts - by the end of which he had had an operation and his feet were not corrected - we had to start again. I see you have joined the Steps site - will keep an eye out for any more messages, or if we can help in any way with details of our experience etc. Even though it probably seems really traumatic now - rest assured that once the right treatment is started, progress is very quick, and Hope this helps Best wishes Stella ('s mum, born 28/7/4/, bilateral clubfeet) > > > My wife and I have been taken a little by shock on the news that our > son born on xmas day has talipes in his right foot but not left - > his twin sister is fine. We were visited by a physio in hospital > today and she ran through the Ponsetti treatment plan. I have some > general questions. > > 1. We live in the UK and our treating physicians are based at the > Birmingham Childrens Hospital. I cannot locate them on the Ponsetti > site as qualified in the method - is the list out of date on that > site? > > 2. It has been suggested that 7 days we caste is adequate but some > sites refer to 5 days per caste. > > 3. Is it traumatic for the child - given he will have a sister of > the same age who will not be having treatment. > > 4. What are the determining factors for the period when the bar > stays in place - variously time periods of 2 - 5 years have been > quoted. > > Apologies for these perhapd mundane queries but I have struggled to > search the chat room properly. > > Regards Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2004 Report Share Posted December 31, 2004 Hello! Welcome to the group! 4 1/2 months ago I was where you are now (except for the twin thing LOL). First let me assure you that this group is WONDERFUL!!! They (we!) will discuss, suggest, listen, support & care about ANYTHING you offer up! Anyway, I can't comment on #1, because I don't live in the UK. #2 & #4 were pretty well covered by the other reply you received. But here's my comments on your other question: > 3. Is it traumatic for the child - given he will have a sister of > the same age who will not be having treatment. From what I've read on here, every child's experience varies. However, my daughter's doc was very caring & always made sure she was calm before beginning casting. I think this helped her trust him immensely right from the beginning. She would just stare up at him with her big blue eyes & never cried AT ALL when he was casting her. She would be slightly fussy for the first night & day after a new cast was applied, only to be expected with the foot in a new position. But nothing a little extra cuddling & milky wouldn't cure. After her tenotomy, she slept ALL DAY, then took baby tylenol the next day, only every 4 hrs. Otherwise, she was fine. Her transition into the DBB was very easy. The only trouble was with figuring out how to do night time nursing. She's been in the DBB 23/7 for 1 month & 9 days now, and has adjusted very well. And the look of her beautiful foot tells me that it was all worth it!!! (Her doc actually was checking her left foot at her checkup yesterday, but it's her right that was a CF!!) Yes, it's annoying when they're in casts/DBB, and it may be hard not to compare your son & daughter, being twins. I know I thought back to my other 2 children (neither with CF) and thought about how much easier it was, and how you could cuddle & bathe them. I went through dark times where I hated everything--the cast, the CF, my DH (hehe)-- but remember, as the saying goes, this too shall pass. And in the end, you (and he!) won't even remember these times. Already the casting seems a long-ago memory to me, and it's only been a few weeks! Sorry this is so long! And I hope it helps! , mommy of: Guinevere, on, Ava 8/4/04 right CF DBB 23/7 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2005 Report Share Posted January 1, 2005 ** Warning - my reply is quite long ** Firstly congratulations. You got the best presents. Our second son was born with the same problem as your son. Our son, , was born 20th April 04. The pediatrician checked on him the night he was born and the orthopedic surgeon was putting his first cast on at 6.30am when he was less than 24 hours old. It all happened so quickly, he didn't have a proper bath until he was one or two weeks old - can't remember. I am not as clue-y on the whole club foot thing as some of the other parents in this group but will answer your questions from my perspective. I don't mean to offend anyone, but it seems the Americans have all the answers for club foot/feet. The Australian websites have next to nothing on talipes. 1. On a recent visit with our orthopedic surgeon I wanted him to confirm the method he was using to correct 's foot as I had never heard him mention Ponsetti. And it is the Ponsetti method. Our ortho's name is not on the list, but he is at the Children's hospital in Melbourne, Aust. I think if you ask your ped who they are recommending and what methods they use you will be able to find a doctor who uses Ponsetti or the french method. 2. We had mainly weekly cast changes every 7 days. When had his achilles tendon released the plaster stayed on for 2 weeks. The first cast I removed was very traumatic for ME. I was in tears and my mum was also showing signs of stress after 4 1/2 hours. I forgot that the ortho said to add vinegar to the water when soaking the plaster off (I think I was in euphoria after giving birth). Vinegar is very important. was out of casts by 11 weeks and was then into his Denis Brown Bar for 23 hours a day for 3 months and is now 12 hours. 3. I would guess it is a little traumatic for the child. But you will need to remain strong, babies can smell fear!. The only time would take a dummy was when he was having his plaster put on. I would also imagine that your son and daughter know no better and can't compare. Your daughter may need to stay clear of your son as she may get a whack with the plaster or the DBB. Our is not a very good sleeper, we do not know if it is because his feet are confined to the DBB or if its just him. Another peice of advice don't buy an expensive cot. We bought a beautiful wooden cot that now has chunks, scratches and dents from the DBB. 4. On our last visit with the ortho prior to Christmas the ortho said once starts walking he will assess his foot and he will probably stop wearing the DBB. This is good news but after reading all of the posts from this group I am a little hestitant that it could be premature and may result in a relapse - which I don't think I would handle too well. But I am not the surgeon. PS don't forget to enjoy your son while he is a baby. He will grow and develop like any other baby. Hopefully in a few weeks the club foot will blend into yours and your wife's life and won't be an issue. Best wishes Sharon carmenna96 nicki.mills@...> wrote: My wife and I have been taken a little by shock on the news that our son born on xmas day has talipes in his right foot but not left - his twin sister is fine. We were visited by a physio in hospital today and she ran through the Ponsetti treatment plan. I have some general questions. 1. We live in the UK and our treating physicians are based at the Birmingham Childrens Hospital. I cannot locate them on the Ponsetti site as qualified in the method - is the list out of date on that site? 2. It has been suggested that 7 days we caste is adequate but some sites refer to 5 days per caste. 3. Is it traumatic for the child - given he will have a sister of the same age who will not be having treatment. 4. What are the determining factors for the period when the bar stays in place - variously time periods of 2 - 5 years have been quoted. Apologies for these perhapd mundane queries but I have struggled to search the chat room properly. Regards Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2005 Report Share Posted January 1, 2005 ** Warning - my reply is quite long ** Firstly congratulations. You got the best presents. Our second son was born with the same problem as your son. Our son, , was born 20th April 04. The pediatrician checked on him the night he was born and the orthopedic surgeon was putting his first cast on at 6.30am when he was less than 24 hours old. It all happened so quickly, he didn't have a proper bath until he was one or two weeks old - can't remember. I am not as clue-y on the whole club foot thing as some of the other parents in this group but will answer your questions from my perspective. I don't mean to offend anyone, but it seems the Americans have all the answers for club foot/feet. The Australian websites have next to nothing on talipes. 1. On a recent visit with our orthopedic surgeon I wanted him to confirm the method he was using to correct 's foot as I had never heard him mention Ponsetti. And it is the Ponsetti method. Our ortho's name is not on the list, but he is at the Children's hospital in Melbourne, Aust. I think if you ask your ped who they are recommending and what methods they use you will be able to find a doctor who uses Ponsetti or the french method. 2. We had mainly weekly cast changes every 7 days. When had his achilles tendon released the plaster stayed on for 2 weeks. The first cast I removed was very traumatic for ME. I was in tears and my mum was also showing signs of stress after 4 1/2 hours. I forgot that the ortho said to add vinegar to the water when soaking the plaster off (I think I was in euphoria after giving birth). Vinegar is very important. was out of casts by 11 weeks and was then into his Denis Brown Bar for 23 hours a day for 3 months and is now 12 hours. 3. I would guess it is a little traumatic for the child. But you will need to remain strong, babies can smell fear!. The only time would take a dummy was when he was having his plaster put on. I would also imagine that your son and daughter know no better and can't compare. Your daughter may need to stay clear of your son as she may get a whack with the plaster or the DBB. Our is not a very good sleeper, we do not know if it is because his feet are confined to the DBB or if its just him. Another peice of advice don't buy an expensive cot. We bought a beautiful wooden cot that now has chunks, scratches and dents from the DBB. 4. On our last visit with the ortho prior to Christmas the ortho said once starts walking he will assess his foot and he will probably stop wearing the DBB. This is good news but after reading all of the posts from this group I am a little hestitant that it could be premature and may result in a relapse - which I don't think I would handle too well. But I am not the surgeon. PS don't forget to enjoy your son while he is a baby. He will grow and develop like any other baby. Hopefully in a few weeks the club foot will blend into yours and your wife's life and won't be an issue. Best wishes Sharon carmenna96 nicki.mills@...> wrote: My wife and I have been taken a little by shock on the news that our son born on xmas day has talipes in his right foot but not left - his twin sister is fine. We were visited by a physio in hospital today and she ran through the Ponsetti treatment plan. I have some general questions. 1. We live in the UK and our treating physicians are based at the Birmingham Childrens Hospital. I cannot locate them on the Ponsetti site as qualified in the method - is the list out of date on that site? 2. It has been suggested that 7 days we caste is adequate but some sites refer to 5 days per caste. 3. Is it traumatic for the child - given he will have a sister of the same age who will not be having treatment. 4. What are the determining factors for the period when the bar stays in place - variously time periods of 2 - 5 years have been quoted. Apologies for these perhapd mundane queries but I have struggled to search the chat room properly. Regards Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2005 Report Share Posted January 2, 2005 , Welcome to the group! I'm fairly new myself, but I'm guessing the reason the shoes bother her is her feet are not fully corrected. Is your doctor a Ponsetti qualified doctor? If not, her feet may not be corrected and so the shoes hurt her when they're on. My advice would be to send pictures of her feet to Dr. Ponseti ignacio-ponseti@... or to the clubfoot pics group, you can join at this link http://health.groups.yahoo.com/group/CFPics/, and see if they are completely corrected. You might want to find a Ponseti doctor near you to treat her. My son went through casting and shoes with a non-Ponseti doctor and eventually he was referred for major surgery to correct his feet. Four days before the surgery I found this group and discovered the surgery could give him painful feet later in life. We switched to a Ponseti doctor and after 6 casts and a tenotomy is in the shoes and bar 23/7. The shoes do not bother him at all. Good luck and keep us posted. and bilateral clubfoot 11/10/03 dbb 23/7 > > > Hey everyone! I just wanted to say that this website is awesome. My > name is and have a baby girl named Maddox Elaine that was born > on Halloween 2004, so she just turned two months old. She was born > with clubfoot in her right foot and a very slight case in her left. I > am from a little town in Texas and there is not anyone who treats it > there, so I travel to Dallas, Texas at the Texas ish Rite > Hospital for Children. It is a wonderful hospital and her doctor and > nurses are wonderful there. Maddox just got out of her last cast and > is now on to the DBB shoes. I was just wondering if anyone has any > helpful tips on putting these on and avoiding blisters. Please tell > me it gets better. I feel so bad seeing her cry when I put them on. > Anyways I am glad to be a member of this site because I don't really > know of anyone where I am from that can relate. Any suggestions would > be greatly appreciated. > Thanks, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2005 Report Share Posted January 2, 2005 Congratulations! And on Christmas day as well... I live in the UK as well (in Bath) and have 2-year old twin boys with one clubfoot between them. Alister was treated with the Ponseti method here (also not on Dr Ponseti's list). You could always try and email Naomi Davies in Manchester to find out if your doctor has trained with her (ours had), I think she runs regular seminars. So far we've had no problems with one twin having to wear the brace and the other not. Both simply accept it as it is. If anything then (without the clubfoot) is slightly jealous and wants to try on Alister's boots ever so often. Alister on the other hand is quite protective and doesn't want him to... I found having twins an advantage regarding the clubfoot, meaning I had at least one baby I could cuddle without a cast or bar (both got the same amount of cuddles of course, I just meant I had another one for comparison which probably made it less of an issue since it really isn't that different). And also I didn't worry about his development all the time since both developed exactly the same, clubfoot or no clubfoot. They rolled over, sat up, crawled, stood up, and walked all within a week of each other. Hope this helps, all the best, with and Alister (*9/02, RCF, Ponseti method) --- carmenna96 nicki.mills@...> wrote: > > > My wife and I have been taken a little by shock on > the news that our > son born on xmas day has talipes in his right foot > but not left - > his twin sister is fine. We were visited by a > physio in hospital > today and she ran through the Ponsetti treatment > plan. I have some > general questions. > > 1. We live in the UK and our treating physicians are > based at the > Birmingham Childrens Hospital. I cannot locate them > on the Ponsetti > site as qualified in the method - is the list out of > date on that > site? > > 2. It has been suggested that 7 days we caste is > adequate but some > sites refer to 5 days per caste. > > 3. Is it traumatic for the child - given he will > have a sister of > the same age who will not be having treatment. > > 4. What are the determining factors for the period > when the bar > stays in place - variously time periods of 2 - 5 > years have been > quoted. > > Apologies for these perhapd mundane queries but I > have struggled to > search the chat room properly. > > Regards > > > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2005 Report Share Posted January 3, 2005 There is a Tips and Tricks post that goes out every once in a while it has lots of good info. Last time I think it was sent out it was message # 28568. http://health.groups.yahoo.com/group/nosurgery4clubfoot/message/28568 HTH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2005 Report Share Posted January 3, 2005 Congratulations on the birth of your TWINS!!! I was in the UK over the holidays and my mother-in-law had kept a news article for me. It was from the Sept 16th issue of The Sun and it was about a little girl, Mia McCann and her Mum Ellie. It seems the the parents were directed to use massaging techniques for the first 2 months then someone who knew about clubfeet saw her and they started with a form of the Ponseti Method (the method was not mentioned in the article, just how they went about treating her). In the article there is reference to a couple of websites. www.steps-charity.org.uk or 0 or www.clubfoot.co.uk When Mia was started on the Ponseti Method she was seen at Coventry and Warwickshire hospital. Even if that is not close to you maybe you could at least speak to someone there for recommendations in your area. I did notice from the article that her casts before the tenotomy were only up to her knees. Per the Ponseti Method they should be to the thigh. I will try to get my husband to scan the article, so you can all read it. Mia's shoes and bar look just like my daughter's. Straight last shoes with red adjustable bar. Good luck to you and please don't hesitate to ask questions! Louisa 6-27-99 Zoe 2-22-04 RCF FAB 16/7 > > > My wife and I have been taken a little by shock on the news that our > son born on xmas day has talipes in his right foot but not left - > his twin sister is fine. We were visited by a physio in hospital > today and she ran through the Ponsetti treatment plan. I have some > general questions. > > 1. We live in the UK and our treating physicians are based at the > Birmingham Childrens Hospital. I cannot locate them on the Ponsetti > site as qualified in the method - is the list out of date on that > site? > > 2. It has been suggested that 7 days we caste is adequate but some > sites refer to 5 days per caste. > > 3. Is it traumatic for the child - given he will have a sister of > the same age who will not be having treatment. > > 4. What are the determining factors for the period when the bar > stays in place - variously time periods of 2 - 5 years have been > quoted. > > Apologies for these perhapd mundane queries but I have struggled to > search the chat room properly. > > Regards Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2005 Report Share Posted January 3, 2005 Further to this, I just read a post on the other clubfoot group and she mentioned the hospital she goes to in Oxford practices Ponseti. Here is the link to her message. http://health.groups.yahoo.com/group/clubfoot/message/17914 Louisa > > > > > > My wife and I have been taken a little by shock on the news that > our > > son born on xmas day has talipes in his right foot but not left - > > his twin sister is fine. We were visited by a physio in hospital > > today and she ran through the Ponsetti treatment plan. I have some > > general questions. > > > > 1. We live in the UK and our treating physicians are based at the > > Birmingham Childrens Hospital. I cannot locate them on the > Ponsetti > > site as qualified in the method - is the list out of date on that > > site? > > > > 2. It has been suggested that 7 days we caste is adequate but some > > sites refer to 5 days per caste. > > > > 3. Is it traumatic for the child - given he will have a sister of > > the same age who will not be having treatment. > > > > 4. What are the determining factors for the period when the bar > > stays in place - variously time periods of 2 - 5 years have been > > quoted. > > > > Apologies for these perhapd mundane queries but I have struggled to > > search the chat room properly. > > > > Regards Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2005 Report Share Posted June 29, 2005 Welcome Caitlin. My name is and I'm 21 yrs old. I've been ill since the age of 15. I just recently got my definitive mito dx from a gene study. I see Dr. Cohen at the Cleveland Clinic for my mito disease. Glad to have you here! This is a great group and everyone is so supportive and knowledgable. Feel free to ask questions! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2005 Report Share Posted June 29, 2005 Caitlyn, Welcome to the group. I am a and am 28. I started having symptoms when I was in my early teens and was diagnosed at age 18. You are right about the heat taking a toll on the body. I know you want to enjoy being outside, just remember to pace yourself. You have found a great group of people here. Smiles, a On Wed, 29 Jun 2005 14:34:43 -0000 " dolphins8124 " SCMB18Cait@...> writes: I am a new member. Just joined this group a couple of days ago and thought I should introduce myself. My name is Caitlin. I am 22 years old and from central PA. I have not officially been diagnosed with a mito disorder but one is suspected. I have had cyclic vomiting syndrome since I was 4 and was diagnosed with that when I was 8. There is a Dr in California, Dr. Boles who believes that cyclic vomiting syndrome (CVS) is mitochondrial related. He has a study going on and I met the criteria for the first phase of the study. There are three phases of the study and they are either on the second or third, I can't remember. I had my COQ10 level checked and it was below normal thus leading us to suspect even more that I have a mito disorder. I have always needed a lot of sleep. Even as a baby I slept a lot. I am tired pretty much all of the time. Heat makes me even more tired. I try to stay cool in the summer because I know if I do have mito that extreme temperatures are pretty bad but it is hard because I love going out in the summer. I've written a lot so I will go for now. Caitlin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2005 Report Share Posted June 29, 2005 Welcome Carmen. I just recently got a definitive Dx of carnitine tranporter gene defect. I recieve 2.5 grams of IV Carnitine daily thru a central line. I haven't responded to the therapy and have developed a cardiomyopathy since being on carnitine supplementation. What dosage of carnitine are you on and have you noticed any improvement in symptoms? Also who is your primary doc. that treats your mitochondrial disease? I have had alot of lower GI probs. but not involving my esophagus so I've not had the balloon test that you mentioned. Glad you found this group! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2005 Report Share Posted June 29, 2005 Hi Caitlin, Welcome!!! My name is Ann-Marie. I am 45 yrs.old and was diagnosed in 1995. It took me 10 yrs to get a diagnosis. I have had symptoms all my life. I am always exhausted. I sleep 18 to 20 hrs. a day and some weeks I sleep for 2 to 3 days straight without going to the potty or drinking any fluids. When I was younger I was always told I was a lazy girl, even my Mother thought I was saying I was tired all the time so I didn't have to do any housework or outside work. I was always the first one to get tired and stop playing when I was a kid. Any kind of exercise wiped me out. I understand when you say that the heat is worse on you. The heat does the same to me. Just the past few weeks it has been so hot and humid here that just being outside for a few minutes(at times even a few seconds) makes my whole body, legs weak and wobbly, sweat pouring off of me, lightheaded and dizzy. Not fun. Are you seeing a Mito doc? Are you going to an MDA Clinic? Have you had a fresh muscle biopsy done yet? Any other testing done? I also have below normal CoQ10 levels, I am carnitine deficient, lactate always high, pyruvate always below normal, etc, etc...( you get the picture :-) ) Where in Central Pa. do you live? I live in Northeastern Pa. Hope you have a great day and stay cool. 8-) Hugs, Ann-Marie At 10:34 AM 6/29/2005, you wrote: >I am a new member. Just joined this group a couple of days ago and >thought I should introduce myself. My name is Caitlin. I am 22 years >old and from central PA. I have not officially been diagnosed with a >mito disorder but one is suspected. >I have had cyclic vomiting syndrome since I was 4 and was diagnosed >with that when I was 8. There is a Dr in California, Dr. Boles who >believes that cyclic vomiting syndrome (CVS) is mitochondrial related. >He has a study going on and I met the criteria for the first phase of >the study. There are three phases of the study and they are either on >the second or third, I can't remember. I had my COQ10 level checked and >it was below normal thus leading us to suspect even more that I have a >mito disorder. >I have always needed a lot of sleep. Even as a baby I slept a lot. I am >tired pretty much all of the time. Heat makes me even more tired. I try >to stay cool in the summer because I know if I do have mito that >extreme temperatures are pretty bad but it is hard because I love going >out in the summer. I've written a lot so I will go for now. >Caitlin > > > > > > >Medical advice, information, opinions, data and statements contained >herein are not necessarily those of the list moderators. The author of >this e mail is entirely responsible for its content. List members are >reminded of their responsibility to evaluate the content of the postings >and consult with their physicians regarding changes in their own treatment. > >Personal attacks are not permitted on the list and anyone who sends one is >automatically moderated or removed depending on the severity of the attack. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2005 Report Share Posted June 29, 2005 Hi a, Welcome. I have two affected daughters, lies (soon to be 20) and (15). lies became quite symptomatic with the onset of puberty and was diagnosed, in Cleveland and Atlanta when she was 13. Retrospectively she did have soft signs since early childhood but puberty seemed to trigger a major crisis. has been significantly symptomatic since she was 9 weeks old (a resusciated SIDS type event), but was originally diagnosed with Congenital Central Hypoventilation Syndrome. She was then diagnosed with mtiochondrial disease following li9es diagnosis. also has become far more symptomatic with the onset of puberty. Both girls tend to have a marked increase in signs/symptoms prior to each monthly cycle. More organ system involvement has become apparent over time. Neither, lies or do well with the summer heat and humidity, They have learned to pace themselves and sleep for hours to compensate when they hjave overdone the activity. Both girls now have service dogs that help them maintain some independence. They also serve to help conserve energy in regards to retrieveing, picking things up, etc. My girls are not yet comfortable with list serves, but do correspond directly with other young adults by email. If you are interested, I'd be happy to share your email address with them. a C Koch kckoch76@...> wrote: Caitlyn, Welcome to the group. I am a and am 28. I started having symptoms when I was in my early teens and was diagnosed at age 18. You are right about the heat taking a toll on the body. I know you want to enjoy being outside, just remember to pace yourself. You have found a great group of people here. Smiles, a On Wed, 29 Jun 2005 14:34:43 -0000 " dolphins8124 " SCMB18Cait@...> writes: I am a new member. Just joined this group a couple of days ago and thought I should introduce myself. My name is Caitlin. I am 22 years old and from central PA. I have not officially been diagnosed with a mito disorder but one is suspected. I have had cyclic vomiting syndrome since I was 4 and was diagnosed with that when I was 8. There is a Dr in California, Dr. Boles who believes that cyclic vomiting syndrome (CVS) is mitochondrial related. He has a study going on and I met the criteria for the first phase of the study. There are three phases of the study and they are either on the second or third, I can't remember. I had my COQ10 level checked and it was below normal thus leading us to suspect even more that I have a mito disorder. I have always needed a lot of sleep. Even as a baby I slept a lot. I am tired pretty much all of the time. Heat makes me even more tired. I try to stay cool in the summer because I know if I do have mito that extreme temperatures are pretty bad but it is hard because I love going out in the summer. I've written a lot so I will go for now. Caitlin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2005 Report Share Posted June 29, 2005 I don't have problems with my cycle, and actualy have (greatly) improved symptoms when pregnant. However, I've been on birth control pills, pregnant, or nursing since I first had mito symptoms (and five years before that), so I haven't really had the chance to see what I'm like off of them. I had HORRIBLE cycles when I was a kid, between 12 and 18 years old - heavy bleeding and cycles from 20 to 50 days, seemingly random. That only improved when I went on the pill. If your daughters are having these type issues, the mere loss of blood could be a factor for their worsening symptoms. I also had bad cramps during those years as well, and haven't had any since being on the pill. If there are communication issues with either of your daughters, it's possible they're having some pain during menses and that's wearing them down to cause symptoms. For some reason I know women who put up with the pain, but I even know people who take off work for a few days each month from pain and discomfort... I also had respiratory distress as an infant (was born 2 months early, I'm in my 30's so it was before they were able to address those issues correctly), some doctors have wondered if that triggered or " set me up " for mito disease. Just some thoughts, RH > Caitlyn, > Welcome to the group. I am a and am 28. I started having > symptoms when I was in my early teens and was diagnosed at age 18. You > are right about the heat taking a toll on the body. I know you want to > enjoy being outside, just remember to pace yourself. You have found a > great group of people here. > Smiles, > a > > On Wed, 29 Jun 2005 14:34:43 -0000 " dolphins8124 " > writes: > I am a new member. Just joined this group a couple of days ago and > thought I should introduce myself. My name is Caitlin. I am 22 years > old and from central PA. I have not officially been diagnosed with a > mito disorder but one is suspected. > I have had cyclic vomiting syndrome since I was 4 and was diagnosed > with that when I was 8. There is a Dr in California, Dr. Boles who > believes that cyclic vomiting syndrome (CVS) is mitochondrial related. > He has a study going on and I met the criteria for the first phase of > the study. There are three phases of the study and they are either on > the second or third, I can't remember. I had my COQ10 level checked and > it was below normal thus leading us to suspect even more that I have a > mito disorder. > I have always needed a lot of sleep. Even as a baby I slept a lot. I am > tired pretty much all of the time. Heat makes me even more tired. I try > to stay cool in the summer because I know if I do have mito that > extreme temperatures are pretty bad but it is hard because I love going > out in the summer. I've written a lot so I will go for now. > Caitlin > > 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.