Guest guest Posted March 5, 2001 Report Share Posted March 5, 2001 > Welcome to the group! You didn't say where you were from, though. > > Thanks! We are from Atlanta, GA. I am a paper pusher in an office that doesn't do anything for the good of the earth, so I won't be there much longer! Amber Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2001 Report Share Posted July 9, 2001 Welcome LuAnn, I hope you will enjoy this list. I am a stay at home mom of two teens, Nick is 19 and has no cf, and is 17 and she has cf. Right now she is on a school trip with her German club to...Germany! along with a few other countries, They went to Paris, then to Belgium, then they went around Germany for a while. She is due home next Monday I think. I have missed her but it has been kind of nice being lazy. My son doesn't need me for anything except food really. doesn't either but I usually have to remind her to do treatments and take pills, etc... Anyway, Welcome again. We live in Orange CA btw. love, mom of Nick age 19 nocf and age 17 wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2003 Report Share Posted October 2, 2003 Congratulations for your baby girl. Be happy and don´t worry. With the clubfoot your baby need a little more care, it can say that your baby is a little more special. I have a baby about 1 month and a half with bilateral clubfoot, and her feet are really very good. She is with the last cast (I hope) after the tenotomy of the Achilles tendon. Sure that here you will find a lot of information. Try to consult these webs: http://www.vh.org/pediatric/provider/orthopaedics/Clubfoot/Clubfoot.html http://pages.ivillage.com/ponseti_links/index.html http://groups.yahoo.com/group/nosurgery4clubfoot/ Regards from Spain José & Raquel -----Mensaje original----- De: backinblacktali Enviado el: jueves, 02 de octubre de 2003 19:28 Para: nosurgery4clubfoot Asunto: New Member 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 2, 2003 Report Share Posted October 2, 2003 HELLO MY SON ALEX IS NOW 4 MONTHS OLD...HE IS NOW IN SHOES WITH BAR TO KEEP THE CORRECTION AND EVERYTHING IS GOING GREAT THIS TIME.....THE REASON I SAY THIS TIME IS BECAUSE HE HAD BEEN PUT IN SHOES WITH HIS FIRST DR. AT 6 WEEKS OLD AND HIS FEET WERE NOT PROPERLY CORRECTED AND HE DEVELOPED SEVERE BRUISES AND SORES ON HIS HEELS.... I TOOK ALEX FOR A 2ND OPINION AT 8 WEEKS OLD AND THE DR. CONFIRMED THAT THE FIRST DR. HAD NOT TREATED HIS CLUB FEET SUFFICIENTLY....WE HAD TO DO THE CASTS ALL OVER AGAIN... HAVE A MINOR SURGERY AND THEN GO BACK IN THE SHOES...MY ADVICE TO YOU WOULD BE MAKE SURE THE DR. WAS TRAINED BY DR PONSETI...WHO IS THE DR. ??? ARE YOU DAUGHTERS FEET OVER CORRECTED I OTHER WORDS ARE THE POINTING OUT INSTEAD OF IN NOW???AND ALSO HAS SHE HAD A TENOTOMY ( A MINOR SURGERY ON THE ACHILLES TENDON) ???? BECAUSE IF HER HEELS ARE STILL DRAWN UP IT WILL BE IMPOSSIBLE FOR HER TO STAY IN THE SHOES...THAT'S EXACTLY WHAT HAPPENED TO ALEX..HIS FOOT JUST WOULDN'T STAY FLAT THEREFORE HE DEVELOPED THE SORES..HE STILL HAS SCARS AND HE WAS ONLY IN THEM THE FIRST TIME FOR 4 DAYS...WE DIDN'T KNOW THAT OUR BABY WAS GOING TO HAVE CLUB FEET EITHER...IT WAS QUITE A SHOCK...WE ARE THANKFUL THAT IT IS CORRECTABLE AND THAT HE WILL EVENTUALLY BE FINE..IT TAKES A LOT OF PATIENCE AND LOVE BUT IT'S ALL WORTH IT... JUST DO A LOT OF RESEARCH YOURSELF. THAT'S WHAT I DID AND IT REALLY HELPED..ALEX'S DR. IS DR. HERZENBERG IN BALTIMORE HE IS WONDERFUL SO MUCH DIFFERENT THAN THE FIRST DR.PLEASE IF YOU HAVE ANY OTHER QUESTIONS FEEL FREE TO ASK! HOPE ALL GOES WELL FOR YOUR SWEET HEART. KRISTIN CUSAMANO AND ALEX(5/10/03)BC/F --------------------------------------------------------------------- Web mail provided by NuNet, Inc. The Premier National provider. http://www.nni.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2003 Report Share Posted October 2, 2003 Welcome to our group!! Many of us parents including myself had a child born with bilateral clubfeet and had no idea what it was! Now I feel I am an almost an expert about what it is and the best way to treat it. Most of the children on this site were treated by doctors using the Ponseti method or by Dr. Ponseti himself. I'm sure many other parents will respond and answer any questions you have. I am not that good at long emails, but if you would like to speak with someone on the phone, I would be glad to talk to both you and your wife and share my experience with my son. You can email me at charity@... and I will give you my phone number or I can call you if you are interested. I know you find the answers you are looking from this group. Congratulations on your baby girl!. Charity and Trenton (8-24-00) bilateral clubfeet New Member 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 2, 2003 Report Share Posted October 2, 2003 Hi Tim, Welcome and congratulations on your baby girl. The shoes are pretty scary at first but within a day or two they adjust and are just fine. My baby girl is 6 1/2 months old and she has been wearing the shoes since she was 3 months old. The first night she screamed and cried and I wants to hurl those shoes out the window. But after the first day, she never had a problem and dosen't seem to mind them. She is down to only wearing them 12 hours a day now so it is usually 7 p.m. to 7 a.m. She is crawling and drags that bar behind her with no problem. We didn't know Rose was going to have a club foot either. In fact, we were older parents (42 and 39) and were more concerned about downs. It never occured to us to worry about anything but that! Everyone here is really nice and helpful so feel free to ask lots of questions. Robin & Rose 3/12/03 Right club foot. backinblacktali wrote: 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 2, 2003 Report Share Posted October 2, 2003 Tim, Congrats on the birth of your little one. Our son, Zachary, sees a U of M pediatrician. We sought treatment in Iowa City from Dr. Ponseti himself. Email me if you want specifics! I'd be more than happy to help in whatever way I can. Holly Zachary 7/27/02 Unilateral Right Clubfoot Treated by Dr. Ponseti 14 hrs/day DBB hollywasilewski@... > 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 4, 2003 Report Share Posted October 4, 2003 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 October 6, 2003 Report Share Posted October 6, 2003 Alaya was about 5 weeks old when she had the tenotomy done. She is doing great now. She has no scar from the tenotomy, you can't see it even if you look close. She is 2 years and one month. She walks and runs everywhere and plays tag with her 3 1/2 year old brother. It is so funny when she runs because she bends her elbows puts her head down and arches her back a little and wiggles her hips from side to side like she is really serious about it. She can run normally too, so I think she just does this for effect. Her feet are overcorrected and still turn out. We are anxious to see what dr. P. does at our recheck on Saturday. I think he will probably leave her in the brace for another year since the biggest time for relapse is 2 1/5 to 3. Good luck and let us know how you are doing. Joanne and Alaya 8-22-01 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2003 Report Share Posted October 12, 2003 Welcome to the group! No relapses at this end (my son is 19 months) and hope for none in the future! I here that when relapses do happen at an older age it tends to be between 2-2 1/2 yrs of age. > >Reply-To: nosurgery4clubfoot >To: nosurgery4clubfoot >Subject: New member >Date: Wed, 08 Oct 2003 00:21:47 -0000 > >My daughter, Katelyn was born 2/11/03 with a left clubfoot. We >traveled from WV for Dr. Ponseti's treatment and feel it was well >worth the trip. She is doing well now. Dr Ponseti said it was a >mild clubfoot and applied 3 casts followed by a tenotomy of her >achilles tendon. She is now wearing the DBB without any problem >(the first night was rough). She is crawling, pulling up and even >trying to walk in it. He said she should wear it 22 hours per day >for 2 1/2 months then 14 hours per day until she is 3. I wondered >if anyone had had any trouble with relapses and when they >occurred??? It has been a very stressful and trying experience but >with the guidence from God and help from Dr. Ponseti I feel things >are going to be fine. I read some of the messages and found that >another Daddy had just deployed to Iraq. Katelyn's daddy is at fort >brag waiting to go and we are having a hard time adjusting. >Katelyn's mommy > _________________________________________________________________ Share your photos without swamping your Inbox. Get Hotmail Extra Storage today! http://join.msn.com/?PAGE=features/es Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2003 Report Share Posted October 20, 2003 , Welcome and congratulations on your new little baby boy! If you are interested in the Ponseti method, I'd definitely say Dr. Herzenberg too. He is a very experienced practitioner and advocate of the method who leads symposiums and speaks at national/international medical conferences on the method. Here's a link to a page at his site with before and after photos: http://www.lifebridgehealth.org/sinaibody.cfm?id=1530 With an early start with him, your little boy could be finished with treatment soon. Has the doctor you've been seeing given you a timeline for how many casts and what his success rate is with casting? Glad to have you here, and > Hello everyone. I'm new. I have a 3 weeks old boy with bilateral clubfeet. We're on our second casting. We've been going to AI Dupont Childrens hospital and seeing Dr. Jay. Has anyone had any good experiences with him.. I've been told that I should go to see Dr. Herzenberg in Baltimore. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2004 Report Share Posted January 3, 2004 Hi Christi- Welcome to the group! We don't see Dr. Dobbs (we live in CA) but I've heard great things about him from this board. My son favored his left side and was born with a left clubfoot. He came out with a kink in his neck to the left. Is that what you mean by a positional head deformity? All we had to do was head/neck excercises with him every time we changed a diaper. His head/neck are perfectly fine now along with his foot:) He is now 222 months. > >Reply-To: nosurgery4clubfoot >To: nosurgery4clubfoot >Subject: new member >Date: Sat, 03 Jan 2004 18:34:41 -0000 > >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 > > _________________________________________________________________ Expand your wine savvy — and get some great new recipes — at MSN Wine. http://wine.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2004 Report Share Posted January 3, 2004 I didn't notice in the hospital of the favor it was about 3 weeks after he got home that I notice that if we laid him on his L side he would turn his head to the R side a move is extremities so he could have his head to the R. I was concerned at his 2 month visit, but recently got sick with a sinus infection and now his Dr. notices that his head has started to deform a little. I had a C- Section with both of my sons not by choice. Thanks Christi 09-27-03 B/CF --- Wray wrote: > Hi Christi- > > Welcome to the group! We don't see Dr. Dobbs (we > live in CA) but I've heard > great things about him from this board. > > My son favored his left side and was born with a > left clubfoot. He came out > with a kink in his neck to the left. Is that what > you mean by a positional > head deformity? All we had to do was head/neck > excercises with him every > time we changed a diaper. His head/neck are > perfectly fine now along with > his foot:) He is now 222 months. > > > > > > > >Reply-To: nosurgery4clubfoot > >To: nosurgery4clubfoot > >Subject: new member > >Date: Sat, 03 Jan 2004 18:34:41 -0000 > > > >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 > > > > > > _________________________________________________________________ > Expand your wine savvy — and get some great new > recipes — at MSN Wine. > http://wine.msn.com > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2004 Report Share Posted January 3, 2004 Hi Eddie and Jordan, Thanks for the info. I do hope that something can be done or that he can grow out of it. I can really tell with his forehead that there is a deformity from his favoring. Thanks, Christi 09-27-04 B/CF --- Eddie Aurand wrote: > Hi , > > Jordan was born 4-9-00 with bilateral clubfoot and > his head tilted > slightly to one side. This was a serious problem > when breastfeeding > him. He screamed bloody murder whenever I tried to > feed him on my right > side. I assumed it was because the shortened tendon > in his neck (?) > hurt when trying to bend into me. I can't remember > how long it was > before he stopped favoring that side. Probably when > he was six months > old it ceased to be an issue. > > Neither of his doctors (original hospital orthopedic > surgeon, and then > Ponseti Method Dr. we saw when he was four months > old) seemed to think > it was related to clubfoot. I had a cousin born > with a similar tilt > though. Thanks to Dr. Colburn Jordan's feet are > perfect. Again, > nothing was done to address his tilted head. It > disappeared as he > matured. > > Hope this helps a bit. Congrats on your baby boy! > > Eddie and Jordan > > new member > > > 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 Theresa, I'm deeply sorry to hear about your daughter. It's unfortunate that even with a proper diagnosis, treatments are limited at best. I hope that in my lifetime, research for children's disorders reach the point that they can solve the problem before there is too much damage. I'm also sorry about you not doing well. Hopefully, you'll get an open muscle biopsy that will be conclusive. I feel like it's always best to know as much information as you can and you're doing the right thing by joining the group. They've helped me alot. You might also want to consider the mitochondrial chat group on monday nights. It's many of the people from this list and it's an opportunity to meet some fantastic, understanding parents and fellow patients. The group meets from 9:00pm - 10:00pm EST in the MDA (Muscular Dystrophy Association) Chat group. It's easy to sign in, free, and about once a month there is a guest speaker (doctor or other medical professional familiar with mitochondrial disease). Hope to see you there ! Bug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2004 Report Share Posted January 9, 2004 Theresa, Forgot to welcome you here! I'm sorry to hear that the death of your daughter is what brought about your diagnosis. I'm assuming that you think there is a mitochondrial disease involved since you haven't improved on the carnitine supplement. (I am under the impression that the deficiency was primary - that the supplement usually works well, but I don't know if it's necessarily so). It sounds like you didn't have your first biopsy done on fresh tissue. Is that correct? I wish you luck with getting some answers here. This is a great group of people and I've learned a lot from everyone. Maggie > Hello to all, > > I found my way here from the MDA site, and am amazed to see how many > people there are with mitochondrial disorders. My diagnosis is > Primary Carnitine Deficiency, although there is more than a little > speculation that I have a mitochondrial disorder other than that. I > was diagnosed in '87, following the death of my daughter from PCD. > Despite supplementation with L-Carnitine, my condition continues to > deteriorate. I'll be undergoing yet another round of biopsies soon; > perhaps this time the true origin of my problem will be found. I > hope to learn a little from all of you, and apply your collective > wisdom to better managing my health. > > Theresa Nicholson 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 and the invite to the MDA Mito Chat. I always mean to check it out, but haven't gotten around to it yet. I consider myself very fortunate that even with a delay in diagnosis, and limited treatments available, I am still able to function at some level. Whatever else I learn about my disorder can only help me delay the progression of symptoms. I'm thrilled to have found this group, to learn from others what works and what doesn't, and to gain insight on other diagnostic and treatment methods. Theresa > Theresa, I'm deeply sorry to hear about your daughter. It's > unfortunate that even with a proper diagnosis, treatments are > limited at best. I hope that in my lifetime, research for > children's disorders reach the point that they can solve the problem > before there is too much damage. > > I'm also sorry about you not doing well. Hopefully, you'll get an > open muscle biopsy that will be conclusive. I feel like it's always > best to know as much information as you can and you're doing the > right thing by joining the group. They've helped me alot. You > might also want to consider the mitochondrial chat group on monday > nights. It's many of the people from this list and it's an > opportunity to meet some fantastic, understanding parents and fellow > patients. > > The group meets from 9:00pm - 10:00pm EST in the MDA (Muscular > Dystrophy Association) Chat group. It's easy to sign in, free, and > about once a month there is a guest speaker (doctor or other medical > professional familiar with mitochondrial disease). Hope to see you > there ! > > Bug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2004 Report Share Posted January 9, 2004 Thanks for the welcome, Maggie. You are correct in assuming that there's some cause to believe that my carnitine deficiency could be secondary to another mitochondrial disorder because I don't respond completely to carnitine supplementation. I am much better with it than not, so I continue to take it. Yes, my first muscle biopsy was on fresh tissue. That was back in '87, before some of the current assays were developed. It confirmed carnitine deficiency, but I don't know what else they may have been able to test for. Theresa > > Hello to all, > > > > I found my way here from the MDA site, and am amazed to see how > many > > people there are with mitochondrial disorders. My diagnosis is > > Primary Carnitine Deficiency, although there is more than a little > > speculation that I have a mitochondrial disorder other than that. > I > > was diagnosed in '87, following the death of my daughter from > PCD. > > Despite supplementation with L-Carnitine, my condition continues > to > > deteriorate. I'll be undergoing yet another round of biopsies > soon; > > perhaps this time the true origin of my problem will be found. I > > hope to learn a little from all of you, and apply your collective > > wisdom to better managing my health. > > > > Theresa Nicholson Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2004 Report Share Posted January 9, 2004 Hi and Welcome, Sorry you have to be here, but this is such a wonderful, informative and supportive group. I read that you have been on the Carnitor, have you also been taking the Co-Enzyme Q-10? From what I know the supplements work best when both are taken. Along with B supplements too. Good luck in finding answers as we have all been through some tough times getting diagnosed. Hopefully with the answers you can find something to help improve your symptoms. AnnMarie- Complex IV Married to my best friend Rick, mom of (14), (11), Cassandra(5 1/2) and Joe(4) - complex IV, lactic acidosis, CP, tethered chord syndrome, dysautonomia, and a smile that never quits :-) 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, My name is and I have a complex I & II functional deficiency. Something that is important here to know is that no question is a stupid question. We may not be able to answer right away because we all have our health issues, but someone will get with you. If time goes by and you don't get a response, please ask again. Sorry you fit the profile to be here, but I glad that you found us. sygeek wrote: >Hello to all, > >I found my way here from the MDA site, and am amazed to see how many >people there are with mitochondrial disorders. My diagnosis is >Primary Carnitine Deficiency, although there is more than a little >speculation that I have a mitochondrial disorder other than that. I >was diagnosed in '87, following the death of my daughter from PCD. >Despite supplementation with L-Carnitine, my condition continues to >deteriorate. I'll be undergoing yet another round of biopsies soon; >perhaps this time the true origin of my problem will be found. I >hope to learn a little from all of you, and apply your collective >wisdom to better managing my health. > >Theresa Nicholson > > > >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 January 9, 2004 Report Share Posted January 9, 2004 Thank's for the welcome, . To what extend are the members here affected by their respective disorders? Are most able to work? To walk? Theresa > > >Hello to all, > > > >I found my way here from the MDA site, and am amazed to see how many > >people there are with mitochondrial disorders. My diagnosis is > >Primary Carnitine Deficiency, although there is more than a little > >speculation that I have a mitochondrial disorder other than that. I > >was diagnosed in '87, following the death of my daughter from PCD. > >Despite supplementation with L-Carnitine, my condition continues to > >deteriorate. I'll be undergoing yet another round of biopsies soon; > >perhaps this time the true origin of my problem will be found. I > >hope to learn a little from all of you, and apply your collective > >wisdom to better managing my health. > > > >Theresa Nicholson > > > > > > > >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 January 9, 2004 Report Share Posted January 9, 2004 Here is a link to one of our members (thanks Barbara) websites that gives great info on CPT deficiency. http://www.spiralnotebook.org/ whoewe2002 wrote: Theresa, Forgot to welcome you here! I'm sorry to hear that the death of your daughter is what brought about your diagnosis. I'm assuming that you think there is a mitochondrial disease involved since you haven't improved on the carnitine supplement. (I am under the impression that the deficiency was primary - that the supplement usually works well, but I don't know if it's necessarily so). It sounds like you didn't have your first biopsy done on fresh tissue. Is that correct? I wish you luck with getting some answers here. This is a great group of people and I've learned a lot from everyone. Maggie Hello to all, I found my way here from the MDA site, and am amazed to see how many people there are with mitochondrial disorders. My diagnosis is Primary Carnitine Deficiency, although there is more than a little speculation that I have a mitochondrial disorder other than that. I was diagnosed in '87, following the death of my daughter from PCD. Despite supplementation with L-Carnitine, my condition continues to deteriorate. I'll be undergoing yet another round of biopsies soon; perhaps this time the true origin of my problem will be found. I hope to learn a little from all of you, and apply your collective wisdom to better managing my health. Theresa Nicholson 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 January 9, 2004 Report Share Posted January 9, 2004 Hi Theresa Welcome to the group. I am still working but it gets harder all the time. I have been able to walk within the house, but have used a scooter for the past 11 years. I just went for my final fitting on a new power chair. I will still walk around the house for as long as I can. My progression has been slowed down by the mito cocktail. laurie > > Reply-To: > Date: Fri, 09 Jan 2004 19:50:48 -0000 > To: > Subject: Re: New member > > Thank's for the welcome, . > > To what extend are the members here affected by their respective > disorders? Are most able to work? To walk? > > Theresa > >> >>> Hello to all, >>> >>> I found my way here from the MDA site, and am amazed to see how > many >>> people there are with mitochondrial disorders. My diagnosis is >>> Primary Carnitine Deficiency, although there is more than a little >>> speculation that I have a mitochondrial disorder other than that. > I >>> was diagnosed in '87, following the death of my daughter from > PCD. >>> Despite supplementation with L-Carnitine, my condition continues > to >>> deteriorate. I'll be undergoing yet another round of biopsies > soon; >>> perhaps this time the true origin of my problem will be found. I >>> hope to learn a little from all of you, and apply your collective >>> wisdom to better managing my health. >>> >>> Theresa Nicholson >>> >>> >>> >>> 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 January 9, 2004 Report Share Posted January 9, 2004 Theresa Just curious - where did you have your fresh biopsy done in 87? laurie > > Reply-To: > Date: Fri, 09 Jan 2004 17:41:45 -0000 > To: > Subject: Re: New member > > Thanks for the welcome, Maggie. > > You are correct in assuming that there's some cause to believe that > my carnitine deficiency could be secondary to another mitochondrial > disorder because I don't respond completely to carnitine > supplementation. I am much better with it than not, so I continue to > take it. > > Yes, my first muscle biopsy was on fresh tissue. That was back > in '87, before some of the current assays were developed. It > confirmed carnitine deficiency, but I don't know what else they may > have been able to test for. > > Theresa > > >>> Hello to all, >>> >>> I found my way here from the MDA site, and am amazed to see how >> many >>> people there are with mitochondrial disorders. My diagnosis is >>> Primary Carnitine Deficiency, although there is more than a > little >>> speculation that I have a mitochondrial disorder other than > that. >> I >>> was diagnosed in '87, following the death of my daughter from >> PCD. >>> Despite supplementation with L-Carnitine, my condition continues >> to >>> deteriorate. I'll be undergoing yet another round of biopsies >> soon; >>> perhaps this time the true origin of my problem will be found. I >>> hope to learn a little from all of you, and apply your collective >>> wisdom to better managing my health. >>> >>> Theresa Nicholson > > > > > 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 January 9, 2004 Report Share Posted January 9, 2004 Theresa I am very sorry to hear of the loss of your daughter. laurie > > Reply-To: > Date: Fri, 09 Jan 2004 15:05:29 -0000 > To: > Subject: New member > > Hello to all, > > I found my way here from the MDA site, and am amazed to see how many > people there are with mitochondrial disorders. My diagnosis is > Primary Carnitine Deficiency, although there is more than a little > speculation that I have a mitochondrial disorder other than that. I > was diagnosed in '87, following the death of my daughter from PCD. > Despite supplementation with L-Carnitine, my condition continues to > deteriorate. I'll be undergoing yet another round of biopsies soon; > perhaps this time the true origin of my problem will be found. I > hope to learn a little from all of you, and apply your collective > wisdom to better managing my health. > > Theresa Nicholson > > > > > 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...
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