Guest guest Posted January 1, 2001 Report Share Posted January 1, 2001 Cheryl, My name is Vera. You have come to the right place for information on this particular surgery. We often discuss other surgeries also but we tend to be a bit partial since this is the surgery we have all chose. Anyway keep reading the posts and you'll get the hang of it in no time! If you have any questions just put them out there most people are better at answering one question posts then a whole page worth. So you would do better as far as getting info back when you keep things short and sweet. (unlike me here) Welcome, I do know there has been a couple of people in Massachusetts that have gone to New York to have their surgery I guess it would depend where in Mass. you are. There is a list of Docs on the DS web site. Feel free to e-mail me direct if I can help in any way. Vera - Lansdale,Pa Bmi-61 Dr. Herron (NY) 01/26/01 On Mon, 01 Jan 2001 17:01:53 -0000 psycho155@... writes: > Hello everyone! My name is Cheryl and i have not yet had this > wonderful surgery, but I am extremely interested in doing so! Any > info, advice or friendship you wanna lend will be greatly > appreciated!! Also I live in Massachusetts and unfortunately there > are no surgeons here who do this type of surgery. If anyone has any > info regarding this dilemma, lol, let me know. thanx, Cheryl > > > > ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/tagj. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2003 Report Share Posted October 3, 2003 Hi Tim! My husband and I are the ones that refered you to this site the other day at your daughter's casting at U of M. Thank you so much for letting us watch the casting process on your little girl. This board is largely a pro-Ponseti method board and we have learned A LOT here. Hopefully E and others will see your post and forward you a lot of the information they have gathered that will help better inform you as a parent new to this condition. We were interviewing Dr. Craig the other day, so if you have any questions on how what he's doing differs from the true Ponseti Method, please feel free to ask. He is using the Ponseti Method, but with some variations. You can email us off-line and I'd also be happy to give you our phone number, too. I will probably be posting some questions here soon myself, that will be refering directly to how Dr. Craig varies from the 'true' Ponseti Method. Since your little girl will probably be going into the DBB (Denis Brown Bar) soon, you may want to post a few questions about what challenges parents have encountered on the first introduction of the DBB and how to circumvent them (i.e. blisters). Your little girl may have a seamless transition, but it's nice to be prepared ahead of time just in case . There is also information on the left side of the screen in FILES. I haven't checked it all out, but there's a lot of useful info there that other parents have posted. Finally, I must tell you that your little girl is simply beautiful!!! Congratulations on her arrival into your lives! Best of luck, Chip, Chloe, and baby due 11/27/03 w/ bcf email: persbus@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2003 Report Share Posted October 3, 2003 Tim, There have been a number of parents in Michigan on the clubfoot internet sites over the past 4 years. We are aware that a number of parents from Michigan have traveled to Iowa for treatment and that there have been some doctors from U of M go to Iowa for training. Usually in the Ponseti method, there is a need to do a tenotomy of the achilles tendon as a part of the final 3 week casting. In published reports, this seems to be needed for about 80 to 90% of children treated. Has your doctor indicated if they are doing a tenotomy as a part of a final casting that would last 3 weeks before going to the FAB/DBB (shoes and bar)? Otherwise, do the feet seem to be in the corrected position with the foot being able to move upward about 10-20 degrees? Hopefully, you have already seen Dr. Posneti's web site at the U of Iowa at http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/index.html There is also a lot of information here in the files and links sections of this site that you can read. There is also a great web site that (UP Mich) has put together for links to Ponseti method information at http://pages.ivillage.com/ponseti_links/ Please ask any questions that you may have. and (3-17-99) http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/egbert.html > I am new here, myself and my wife gave birth to a baby girl > about 6 weeks ago and she was born with bilateral club feet. She has > under gone about 5 weeks of casting and there has been a drastic > improvement in both feet but one is a little worse than the other. > Our doctor at U of M said that there is a good chance that next week > they could put some shoes on her. I am not too familiar with what > that is and whether it is something for correction or not. Any > information would be greatly appreciated. > > I will be spending the rest of the afternoon here reading to further > my knowledge on the subject. > > We were unaware that she had club feet until she was born so that was > a terrible shock to us. Thanks in advance > > Tim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2003 Report Share Posted October 5, 2003 Thank you for your response to my message. Hazel sees Dr. Jarka in Overland Park, Kansas. How old was Alaya when she had the tenotomy done? How is she doing? Cris >From: Coharmony@... >Reply-To: nosurgery4clubfoot >To: nosurgery4clubfoot >Subject: Re: New member >Date: Sat, 4 Oct 2003 23:50:40 EDT > >Cris, welcome to the group. I can only speak from experience. We didn't >have any trouble with the 3 week cast. Just keep checking her toes to make >sure >they have good circulation. Dr. P. told us that there is very little risk >of >infection. The site is sterialized prior to the tenotomy and with the cast >on >it doesn't get dirty. The incision is also very small. Alaya only had a >scab the size of a pinprick when she got the cast off. We as mothers can >find >anything to worry about if we want to. Even though it's hard try to relax >and >enjoy your baby. Who is Hazel's dr? >Joanne and Alaya 8-22-01 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2004 Report Share Posted January 3, 2004 Hi my name is Kramer I am from Belleville, IL. My son has congenital bilateral Clubfoot. He was born 7 weeks prematue. He sees Dr. Dobbs at Shriner's in St. Louis, MO. I think that he is a wonderful DR. He has put my son first. He won't cast him until his feet are big enough. What I mean by that is that only weigh 3lbs. 8oz. at birth. He was casted three times while he was in the NICU. When he went to see DR.DOBBS he wouldn't recast him until he thinks that his feet is big enough for the shoes. So please anyone who's child has seen Dr. Dobbs I would like some info. Who's child has had a positional head deformity. My son really favors his R side. He is 3 months old now and is hopefully getting casted Jan.15, 2004. Kramer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2004 Report Share Posted January 9, 2004 Hi Theresa, Welcome to the list. This is a group of supportive and informative people and I am sure you will get all of that- support and information. Where will you be having your biopsy? Mitochondrial disorders are very often difficult to diagnose and typically the best choice is a fresh muscle biopsy but there are only a few centers which do them. One is in Atlanta Ga. This one is the most well known and probably the best there is. Please feel free to ask any questions. There are so many people here that I am sure someone will either be able to help you themselves or lead you in the right direction. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2004 Report Share Posted January 9, 2004 Welcome Theresa, I also have a primary carnitine deficiency caused by a carnitine transporter defect in my renal tubes. I had a biopsy done at Cleveland Clinic in Sept. It showed that I have a large depletion of mitochondria in my cells. I have only 1.2 instead of about 8-9. It was the fewest the doc. had ever seen in any biopsy done at CCF. What are your main symptoms? I experience severe muscle pain, weakness, fatigue, gatric dysmotility, swollen lymphnodes, low grade temps, hypogammglobuanemia, tension headaches, osteoporosis, and frequent infections. What does Carnitor are you on? I'm on IV Carnitor at max dose of 3 grams. I haven't had any symptom improvement thus far. Look forward to hearing more from you, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2004 Report Share Posted January 9, 2004 My symptoms include muscle pain and weakness, gastric dysmotility, dysphagia, hypoglycemia and hypoketosis, double vision, frequent infections, cardiomyopathy and exercise intolerance. I am unable to go without nutrition more than 12 hours without experiencing hypoglycemic/hypoketotic episodes which can lead to mental confusion, lethargy, and coma. I take 3000mg oral Carnitor daily, but even that doesn't bring my plasma levels to normal. I've been on Carnitor since '87, but it only slows the progression of my disease. I've taken as much as 6000mg/day, with no change in effect. The prevailing thought is that my carnitine deficiency is systemic, and not a result of a transporter defect. I'm hoping that the upcoming tests will give us more insight; not so much for me, but for my daughter who is now a teen. I want her to have the information I lacked when making decisions about having children. Thanks for the welcome, and your support. Theresa > Welcome Theresa, > I also have a primary carnitine deficiency caused by a carnitine transporter > defect in my renal tubes. I had a biopsy done at Cleveland Clinic in Sept. > It showed that I have a large depletion of mitochondria in my cells. I have > only 1.2 instead of about 8-9. It was the fewest the doc. had ever seen in any > biopsy done at CCF. What are your main symptoms? I experience severe muscle > pain, weakness, fatigue, gatric dysmotility, swollen lymphnodes, low grade > temps, hypogammglobuanemia, tension headaches, osteoporosis, and frequent > infections. > What does Carnitor are you on? I'm on IV Carnitor at max dose of 3 grams. I > haven't had any symptom improvement thus far. > Look forward to hearing more from you, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2004 Report Share Posted January 9, 2004 Thank you for the welcome. My next biopsy will be at Childrens' Hospital of Philadelphia; it will be a skin biopsy this time. I see Dr. Stanley there, even though he is a pediatrician. My last muscle biopsy was at UCSD. I'm not looking forward to the prospect of another one, but if it becomes necessary, I'll find a center that can do the assay on a fresh muscle sample. Theresa > Hi Theresa, > > Welcome to the list. This is a group of supportive and informative people > and I am sure you will get all of that- support and information. Where will you > be having your biopsy? Mitochondrial disorders are very often difficult to > diagnose and typically the best choice is a fresh muscle biopsy but there are > only a few centers which do them. One is in Atlanta Ga. This one is the most > well known and probably the best there is. > > Please feel free to ask any questions. There are so many people here that I > am sure someone will either be able to help you themselves or lead you in the > right direction. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2004 Report Share Posted January 10, 2004 Thank you to all of you who have reached out to welcome me, and to express your sorrow that I do, in fact, belong here...not only as a person struggling against this disorder, but as the mother of an affected (and deceased) child. Given the choice, I'd prefer to be part of some other exclusive group, but he we all are. At 41, I've been fighting to continue working for the past fifteen years or so. Sometimes I want to stop, to give my body a break, and have less pain. But I simply cannot let this disorder dictate every aspect of how I live my life. Dragging myself out of bed and going to work every day is somehow a victory to me, even when I know that it's not in my best interest, health-wise. I'm able to walk unassisted on a good day, but those are few and far between. I've resisted getting a wheelchair so far, but that's just my stubborn streak. Most malls and stores have wheelchairs or scooters, and I use them if I need to. Thanks again to all of you for your warm welcome and support. For the first time, I don't feel like the only one with this problem. Theresa > Welcome and anyone else new to Mito-oldies. I am new to as > of Oct/Nov. I have found that this is such a wonderful and caring > group of people. I have been totally amazed!! I have learned so much > from everyone here. We really need one another! I am sorry you have > to be here. You are going to fit in well. Also I am sorry to hear > about your daughter. That must of been and still probably is very > hard. > > I do not have the dx of mito yet. The more time I spend on this > board the more likely it sounds like it. To answer your question, I > am presently on disability at 36. I am able to walk fortunately, but > I fatique very quickly. I have used a W/C at places like museums and > malls. > > Again, welcome to the board! > > > Best Wishes, > > Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2004 Report Share Posted January 10, 2004 Re: new member " I'd prefer to be part of some other exclusive group, " Theresa, An exclusive group of multi millionairs would be a nice group to be part of. , Mom to Quote Link to comment Share on other sites More sharing options...
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