Guest guest Posted July 12, 2006 Report Share Posted July 12, 2006 I couldn't ask for it to have gone better. We started when he was two weeks old. Went weekly for casting appointments until he was seven weeks old when he had the bilateral tenotomy. He stayed in those casts til ten weeks old. Went back and got the casts off and shoes on. We did have to make a trip up there because he got a sore from the shoes about three days later. But they took care of that with that trip. He wore the shoes full time for the three months and ended the shoe wear on his fourth birthday when he was wearing them 12 hours a day (night). He never missed a night in his shoes. He just finished his first season of little league tee ball, and he has played two seasons of soccer. I think our next sceduled follow up is in Feb, unless of course we (don't even want to mention) noticed any type of problem. How long is the trip for you? Will you be staying the night there? Pam > > > > > > Hello. My name is Shelly, and my 3 month old daughter has bilateral > > > club feet. We were seeing a doctor locally, but my daughter's casts > > > kept slipping. I emailed Dr. Ponseti, and after seeing some of my > > > daughter's pictures he advised me that has atypical > >clubfeet. > > > We are going to see Dr. Dobbs at the Shriner Hospital in St. Louis > > > July 17th, and I am very excited. If any of you have experience with > > > Dr. Dobbs, please let me know what you think of him. Thanks!! > > > > > > Shelly in KS > > > > > > > > > > > > > > > _________________________________________________________________ > FREE pop-up blocking with the new MSN Toolbar – get it now! > http://toolbar.msn.click-url.com/go/onm00200415ave/direct/01/ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2006 Report Share Posted July 13, 2006 How encouraging to hear a " perfect " experience. I am so happy for you. > > > > > > > > Hello. My name is Shelly, and my 3 month old daughter has > bilateral > > > > club feet. We were seeing a doctor locally, but my daughter's > casts > > > > kept slipping. I emailed Dr. Ponseti, and after seeing some of > my > > > > daughter's pictures he advised me that has atypical > > >clubfeet. > > > > We are going to see Dr. Dobbs at the Shriner Hospital in St. > Louis > > > > July 17th, and I am very excited. If any of you have > experience with > > > > Dr. Dobbs, please let me know what you think of him. Thanks!! > > > > > > > > Shelly in KS > > > > > > > > > > > > > > > > > > > > > > > _________________________________________________________________ > > FREE pop-up blocking with the new MSN Toolbar – get it now! > > http://toolbar.msn.click-url.com/go/onm00200415ave/direct/01/ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2006 Report Share Posted July 13, 2006 We are traveling from Wichita, so it is about 7 hours. We are staying at the Haven House for free because the Shriners are taking care of all of it. So we'll drive up Sunday morning, stay the night, see Dr. Dobbs Monday morning, then get back to Wichita Monday night. Lots of driving in 2 days, but it sounds like it is worth it! Shelly > >Reply-To: nosurgery4clubfoot >To: nosurgery4clubfoot >Subject: Re: New member >Date: Thu, 13 Jul 2006 04:13:46 -0000 > >I couldn't ask for it to have gone better. We started when he was >two weeks old. Went weekly for casting appointments until he was >seven weeks old when he had the bilateral tenotomy. He stayed in >those casts til ten weeks old. Went back and got the casts off and >shoes on. We did have to make a trip up there because he got a sore >from the shoes about three days later. But they took care of that >with that trip. He wore the shoes full time for the three months and >ended the shoe wear on his fourth birthday when he was wearing them >12 hours a day (night). He never missed a night in his shoes. He >just finished his first season of little league tee ball, and he has >played two seasons of soccer. I think our next sceduled follow up is >in Feb, unless of course we (don't even want to mention) noticed any >type of problem. How long is the trip for you? Will you be staying >the night there? > >Pam > > > > > > > > > > Hello. My name is Shelly, and my 3 month old daughter has >bilateral > > > > club feet. We were seeing a doctor locally, but my daughter's >casts > > > > kept slipping. I emailed Dr. Ponseti, and after seeing some of >my > > > > daughter's pictures he advised me that has atypical > > >clubfeet. > > > > We are going to see Dr. Dobbs at the Shriner Hospital in St. >Louis > > > > July 17th, and I am very excited. If any of you have >experience with > > > > Dr. Dobbs, please let me know what you think of him. Thanks!! > > > > > > > > Shelly in KS > > > > > > > > > > > > > > > > > > > > > > > _________________________________________________________________ > > FREE pop-up blocking with the new MSN Toolbar – get it now! > > http://toolbar.msn.click-url.com/go/onm00200415ave/direct/01/ > > > > > > > _________________________________________________________________ Don’t just search. Find. Check out the new MSN Search! http://search.msn.click-url.com/go/onm00200636ave/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2006 Report Share Posted July 13, 2006 We had our share of problems, I don't mean to make it sound like a cake walk. When you're going through it, it can be pretty tough at times. But once it's all over and you have those straight little tootsies all the bad fades away and IT'S ALL GOOD! Good luck to you, it will be no time until you are where we are now! Pam > > > > > > > > > > Hello. My name is Shelly, and my 3 month old daughter has > > bilateral > > > > > club feet. We were seeing a doctor locally, but my > daughter's > > casts > > > > > kept slipping. I emailed Dr. Ponseti, and after seeing some > of > > my > > > > > daughter's pictures he advised me that has atypical > > > >clubfeet. > > > > > We are going to see Dr. Dobbs at the Shriner Hospital in St. > > Louis > > > > > July 17th, and I am very excited. If any of you have > > experience with > > > > > Dr. Dobbs, please let me know what you think of him. Thanks!! > > > > > > > > > > Shelly in KS > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > _________________________________________________________________ > > > FREE pop-up blocking with the new MSN Toolbar – get it now! > > > http://toolbar.msn.click-url.com/go/onm00200415ave/direct/01/ > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2006 Report Share Posted July 13, 2006 Ours was a 4 1/2 hour drive one way. Once he got older we would sometimes make it in one day, but sometimes it takes quite a while at Shriner's after you wait to see Dr. Dobbs (worth every minute), wait in the brace shop, wait in x-ray, wait to get pictures made (they take actual photographs documenting treatment). After you added up driving time, Shriners time, and stopping to get something to eat we would be gone an easy 16 hours in the one day trip. When he was younger and you would have to stop at a rest stop to feed him (he was an every three hour eater) and change him and all that it was too much to make in one day. I would say 80% of our trips were an overnight trip. We stayed at the Holiday Inn Viking Hotel which is about 10 minutes or so from Shriners depending on traffic. They have a Shriners rate $59 (used to be $49 though). I didn't know about Haven House. We went up the night before his tenotomy and spent the night because it was early in the morning. However, I wish we would have spent the night that night of his tenotomy also because that was a VERY difficult trip home on him. It took us about 7 1/2 hours to get home (three hours longer than usual). We had to stop at every rest stop on the way home and he screamed on every bump we went over. That's the one thing I wish we could have gone back and done over. I still feel so bad for him when I think back to that. When is your appointment is it this coming Monday? Have a safe trip! Pam and (8-12-01) > > > > > > > > > > Hello. My name is Shelly, and my 3 month old daughter has > >bilateral > > > > > club feet. We were seeing a doctor locally, but my daughter's > >casts > > > > > kept slipping. I emailed Dr. Ponseti, and after seeing some of > >my > > > > > daughter's pictures he advised me that has atypical > > > >clubfeet. > > > > > We are going to see Dr. Dobbs at the Shriner Hospital in St. > >Louis > > > > > July 17th, and I am very excited. If any of you have > >experience with > > > > > Dr. Dobbs, please let me know what you think of him. Thanks!! > > > > > > > > > > Shelly in KS > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > _________________________________________________________________ > > > FREE pop-up blocking with the new MSN Toolbar – get it now! > > > http://toolbar.msn.click-url.com/go/onm00200415ave/direct/01/ > > > > > > > > > > > > > > > _________________________________________________________________ > Don't just search. Find. Check out the new MSN Search! > http://search.msn.click-url.com/go/onm00200636ave/direct/01/ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2006 Report Share Posted July 14, 2006 Yes, our appointment is this Monday. We are leaving Sunday morning. I'm going to the store today to get some snack foods to take along to help with meal costs. I can't wait to post on Tuesday and tell everyone how it goes. I will take lots of pictures. Shelly > >Reply-To: nosurgery4clubfoot >To: nosurgery4clubfoot >Subject: Re: New member >Date: Fri, 14 Jul 2006 03:21:39 -0000 > >Ours was a 4 1/2 hour drive one way. Once he got older we would >sometimes make it in one day, but sometimes it takes quite a while at >Shriner's after you wait to see Dr. Dobbs (worth every minute), wait >in the brace shop, wait in x-ray, wait to get pictures made (they >take actual photographs documenting treatment). After you added up >driving time, Shriners time, and stopping to get something to eat we >would be gone an easy 16 hours in the one day trip. When he was >younger and you would have to stop at a rest stop to feed him (he was >an every three hour eater) and change him and all that it was too >much to make in one day. I would say 80% of our trips were an >overnight trip. We stayed at the Holiday Inn Viking Hotel which is >about 10 minutes or so from Shriners depending on traffic. They have >a Shriners rate $59 (used to be $49 though). I didn't know about >Haven House. We went up the night before his tenotomy and spent the >night because it was early in the morning. However, I wish we would >have spent the night that night of his tenotomy also because that was >a VERY difficult trip home on him. It took us about 7 1/2 hours to >get home (three hours longer than usual). We had to stop at every >rest stop on the way home and he screamed on every bump we went >over. That's the one thing I wish we could have gone back and done >over. I still feel so bad for him when I think back to that. When >is your appointment is it this coming Monday? Have a safe trip! > >Pam and (8-12-01) > > > > > > > > > > > > > > Hello. My name is Shelly, and my 3 month old daughter has > > >bilateral > > > > > > club feet. We were seeing a doctor locally, but my >daughter's > > >casts > > > > > > kept slipping. I emailed Dr. Ponseti, and after seeing >some of > > >my > > > > > > daughter's pictures he advised me that has atypical > > > > >clubfeet. > > > > > > We are going to see Dr. Dobbs at the Shriner Hospital in St. > > >Louis > > > > > > July 17th, and I am very excited. If any of you have > > >experience with > > > > > > Dr. Dobbs, please let me know what you think of him. >Thanks!! > > > > > > > > > > > > Shelly in KS > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >_________________________________________________________________ > > > > FREE pop-up blocking with the new MSN Toolbar – get it now! > > > > http://toolbar.msn.click-url.com/go/onm00200415ave/direct/01/ > > > > > > > > > > > > > > > > > > > > > > > _________________________________________________________________ > > Don't just search. Find. Check out the new MSN Search! > > http://search.msn.click-url.com/go/onm00200636ave/direct/01/ > > > > > > _________________________________________________________________ Don’t just search. Find. Check out the new MSN Search! http://search.msn.click-url.com/go/onm00200636ave/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2010 Report Share Posted June 11, 2010 Hi, I would strongly advise you to start on the intro diet and gradually work up through the suggested stages on pecanbread.com (note it is for children with ASD and is non-dairy, we can have legal cheese abd SCD yogurt. The intro diet is the best step to settling your gut. Even foods that are legal are hard to digest for some- like grapes. I think you will find those stomach cramps settling down on intro. I would start by eating cooked, peeled, soft fruits and veggies. I've been on SCD a year and I have not tried grapes yet. Hope you feel better, PJ > > I was recently diagnosed with Chrons disease (at the age of 30) and recenly ran accross " Breaking the Vicious Cycle " . I am really excited about starting the book and the recipes dont look too bad..though I am really going to miss ice cream etc. I was always a big foodie so this is a big change for me...though I have always liked cooking so maybe it wont be too bad?? > I think I need to give SCD try because nothing else seems to be working. My main problem is the stomach cramps!!!!! They are pretty much unbearable. I sit at work with a heating pad on my stomach (I refuse to stay home) and my poor fiance has been locked up inside with me because I am in too much pain to enjoy going out. I tried Lialda first and when they didnt work I was perscribed Imuran...which the side effects have scared the heck out of me...So I decided to try a few other approaches. Acupuncture and SCD are next on the list. I ordered the book on Amazon (should be here by the end of the month) but I want to start to try to wean myself off of " illegal " foods asap. I bought some Habenero cheese from the Amish Bakery in my building. Do you think that would be ok for lunch? Some cheese and grapes with water?? Any other ideas? We are ordering in today from the deli and I think I should stay away...any help would be super apprciated! > > Thank you! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2010 Report Share Posted June 11, 2010 I would add at this point it is best to bring your lunch to work and not risk eating illegals in prepared foods. And there are some great ice cream recipes for SCD yogurt. Invest in an ice cream maker so you won't feel deprived. PJ > > I was recently diagnosed with Chrons disease (at the age of 30) and recenly ran accross " Breaking the Vicious Cycle " . I am really excited about starting the book and the recipes dont look too bad..though I am really going to miss ice cream etc. I was always a big foodie so this is a big change for me...though I have always liked cooking so maybe it wont be too bad?? > I think I need to give SCD try because nothing else seems to be working. My main problem is the stomach cramps!!!!! They are pretty much unbearable. I sit at work with a heating pad on my stomach (I refuse to stay home) and my poor fiance has been locked up inside with me because I am in too much pain to enjoy going out. I tried Lialda first and when they didnt work I was perscribed Imuran...which the side effects have scared the heck out of me...So I decided to try a few other approaches. Acupuncture and SCD are next on the list. I ordered the book on Amazon (should be here by the end of the month) but I want to start to try to wean myself off of " illegal " foods asap. I bought some Habenero cheese from the Amish Bakery in my building. Do you think that would be ok for lunch? Some cheese and grapes with water?? Any other ideas? We are ordering in today from the deli and I think I should stay away...any help would be super apprciated! > > Thank you! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2010 Report Share Posted June 11, 2010 Thank you for the advice. I am glad to hear that there are recipes for yogurt ice cream!!!!! My Mom is having my Wedding Shower at her house for us next month and she usually makes home made ice cream. I will make sure and get her the yogurt recipe as well. That way I won't feel left out:) I appreciate you getting back to me so quickly! > > > > I was recently diagnosed with Chrons disease (at the age of 30) and recenly ran accross " Breaking the Vicious Cycle " . I am really excited about starting the book and the recipes dont look too bad..though I am really going to miss ice cream etc. I was always a big foodie so this is a big change for me...though I have always liked cooking so maybe it wont be too bad?? > > I think I need to give SCD try because nothing else seems to be working. My main problem is the stomach cramps!!!!! They are pretty much unbearable. I sit at work with a heating pad on my stomach (I refuse to stay home) and my poor fiance has been locked up inside with me because I am in too much pain to enjoy going out. I tried Lialda first and when they didnt work I was perscribed Imuran...which the side effects have scared the heck out of me...So I decided to try a few other approaches. Acupuncture and SCD are next on the list. I ordered the book on Amazon (should be here by the end of the month) but I want to start to try to wean myself off of " illegal " foods asap. I bought some Habenero cheese from the Amish Bakery in my building. Do you think that would be ok for lunch? Some cheese and grapes with water?? Any other ideas? We are ordering in today from the deli and I think I should stay away...any help would be super apprciated! > > > > Thank you! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2010 Report Share Posted June 11, 2010 I got an ice cream maker a few months ago and wasn't convinced that I would use it that much. HA! I swear I have that thing running as much as my yogurt machine You will love experimenting with it! And I actually enjoy the flavor more from our homemade yogurt. Welcome to the group! -Joanna SCD 9/2009, Crohn's 1992, 32.5mg Prednisone P.S. Like you, I read the book first and thought I would just be eating everything that is okay right from the start. However, I soon learned that I had so much healing to do, that following the stages from pecanbread was key. While you are waiting for your book you should read thoroughly through their site to get an idea where to start and what you'll be cooking/eating... http://www.pecanbread.com/ > > Thank you for the advice. I am glad to hear that there are recipes for yogurt ice cream!!!!! My Mom is having my Wedding Shower at her house for us next month and she usually makes home made ice cream. I will make sure and get her the yogurt recipe as well. That way I won't feel left out:) > I appreciate you getting back to me so quickly! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2010 Report Share Posted June 11, 2010 CCFA.org has a lot of basic nutritional information on what you may want to avoid. The official SCD site http://www.breakingtheviciouscycle.info/beginners_guide/the_science_behind_the_diet2.htm also has links to get you started. You may want to check out www.digestivewellness.com or lucy's kitchen shop for a yogurt maker if you don't have one already. Habanero anything may not be a great idea right now. I also avoid grapes for a long time. Debbie 41 cd Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2010 Report Share Posted June 11, 2010 Thanks again! I was just thinking...what the heck am I going to make for dinner! LOL. I will check out that site that you sent to me asap. I definiltey have some healing to do...you are right.... luckily I get to register soon so the ice cream and yogurt maker will for sure be on our list Thank you again so much. I have felt so alone in this and its nice to know that I am joining a fight- fought by many others. > > > > Thank you for the advice. I am glad to hear that there are recipes for yogurt ice cream!!!!! My Mom is having my Wedding Shower at her house for us next month and she usually makes home made ice cream. I will make sure and get her the yogurt recipe as well. That way I won't feel left out:) > > I appreciate you getting back to me so quickly! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2010 Report Share Posted June 11, 2010 p.s. I found this site...maybe it will be helpful for you too:) http://www.scdbakery.com/products.htm > > > > Thank you for the advice. I am glad to hear that there are recipes for yogurt ice cream!!!!! My Mom is having my Wedding Shower at her house for us next month and she usually makes home made ice cream. I will make sure and get her the yogurt recipe as well. That way I won't feel left out:) > > I appreciate you getting back to me so quickly! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2010 Report Share Posted June 12, 2010 My favorite frozen yogurt recipe is the Vanilla Ice Cream recipe at: http://nomorecrohns.com/desserts.aspx . I make the yogurt from 1/2 and 1/2, and then drip it. It makes for a very creamy and mostly tart free ice cream! Holly Crohn's SCD 12/01/08 > > Thank you for the advice. I am glad to hear that there are recipes for yogurt ice cream!!!!! My Mom is having my Wedding Shower at her house for us next month and she usually makes home made ice cream. I will make sure and get her the yogurt recipe as well. That way I won't feel left out:) > I appreciate you getting back to me so quickly! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2010 Report Share Posted June 13, 2010 You suond exactly like me coming to SCD. The inflammation was so bad. I bought 2 heating pads. One went under my right hip and the other larger one went across my belly. I slept as long as the heating pad was on and woke up when it turned off. Pain meds were the only thing that helped me make it through the day at works. The first time I tried SCD, I jumped right in eating everything that was allowed and did not get better at all. The second time I did the same thing but after a month found out about the intro diet. The next day after starting the intro diet, I was off pain meds and haven't had to get back on them. My doctor tried Imuran, Pentasa and Entocort all alone and in different combinations. The only thing that helped was Prednisone but that's not a long term option and it made me so crazy, I'd never get back on it anyway. She told me that at first she thought I had mild to moderate Crohn's but really I had very aggressive Crohn's and if I didn't get on Humira or Remicaid, I'd be facing surgery within a year. Well, that's what got me to try SCD again. My intro diet consisted of chicken soup with the veggies removed, gelatin made with 1 cup welch's grape juice or tropicana pure premium orange juice and 3 cups water, and boiled eggs. After a couple days I was able to puree the veggies back into the broth. A few more days, I was able to eat it without pureeing anything. Apples, super ripe bananas, colby jack cheese, eggs, and carrots were the first foods I tolerated. I did rotate everything for about a week before I'd introduce something else. I still have to watch what I eat on SCD or I have symptoms. I don't know if I'll ever be " cured " , but I like knowing I'm in control of my body. I hope SCD works for you like it did me. I actually stopped my meds right before I started the intro diet. My doctor said they probably weren't doing any good and she was right. Misty Kimble CD - no meds SCD - 2 + years > > I think I need to give SCD try because nothing else seems to be working. My main problem is the stomach cramps!!!!! They are pretty much unbearable. I sit at work with a heating pad on my stomach (I refuse to stay home) and my poor fiance has been locked up inside with me because I am in too much pain to enjoy going out. I tried Lialda first and when they didnt work I was perscribed Imuran...which the side effects have scared the heck out of me...So I decided to try a few other approaches. Acupuncture and SCD are next on the list. I ordered the book on Amazon (should be here by the end of the month) but I want to start to try to wean myself off of " illegal " foods asap. I bought some Habenero cheese from the Amish Bakery in my building. Do you think that would be ok for lunch? Some cheese and grapes with water?? Any other ideas? We are ordering in today from the deli and I think I should stay away...any help would be super apprciated! > > Thank you! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2010 Report Share Posted June 13, 2010 Misty, Good letter, thanks. i have forwarded the information in it to a friend with Crohns. Ruth Re: New MemberPosted by: " Misty " miztydawn@... miztydawnSun Jun 13, 2010 6:31 am (PDT) You suond exactly like me coming to SCD. The inflammation was so bad. I bought 2 heating pads. One went under my right hip and the other larger one went across my belly. I slept as long as the heating pad was on and woke up when it turned off. Pain meds were the only thing that helped me make it through the day at works. The first time I tried SCD, I jumped right in eating everything that was allowed and did not get better at all. The second time I did the same thing but after a month found out about the intro diet. The next day after starting the intro diet, I was off pain meds and haven't had to get back on them. My doctor tried Imuran, Pentasa and Entocort all alone and in different combinations. The only thing that helped was Prednisone but that's not a long term option and it made me so crazy, I'd never get back on it anyway. She told me that at first she thought I had mild to moderate Crohn's but really I had very aggressive Crohn's and if I didn't get on Humira or Remicaid, I'd be facing surgery within a year. Well, that's what got me to try SCD again. My intro diet consisted of chicken soup with the veggies removed, gelatin made with 1 cup welch's grape juice or tropicana pure premium orange juice and 3 cups water, and boiled eggs. After a couple days I was able to puree the veggies back into the broth. A few more days, I was able to eat it without pureeing anything. Apples, super ripe bananas, colby jack cheese, eggs, and carrots were the first foods I tolerated. I did rotate everything for about a week before I'd introduce something else. I still have to watch what I eat on SCD or I have symptoms. I don't know if I'll ever be " cured " , but I like knowing I'm in control of my body. I hope SCD works for you like it did me. I actually stopped my meds right before I started the intro diet. My doctor said they probably weren't doing any good and she was right. Misty Kimble CD - no meds SCD - 2 + years Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2010 Report Share Posted June 26, 2010 Hi, . I'm sorry you've had to find us, but you'll find some great information & support here. Do you mind some questions? I'm puzzled by your being diagnosed by ACE levels & CSF bands. ACE levels indicate some type of inflammation & there are some CSF bands that can indicate multiple sclerosis, but as far as I know, there is no test that specifically diagnoses NS. If you have known sarc from a lymph node biopsy, for example, then develop neurologic symptoms, NS is a strong possibility, but can only be diagnosed by exclusion--everything else has been ruled out. I'm also concerned that your Prednisone was apparently reduced quickly. Pred should be tapered down very slowly; the Mtx may take 3-6 months for full effect. It doesn't sound like you've had enough time for the meds to work. Have you had other symptoms besides neuro, other body systems--skin, lungs, etc? There are many options between Pred/Mtx & Remicade (infliximab). Are you confident that your health care team is up to date on sarc/NS research re: treatment options? If you haven't already, you will discover that you the patient may have to do much of the work in researching options. Fortunately, the 600+ members of this group have blazed a well-worn trail. Our fearless leader Tracie is on a well-deserved break from the group, but she has compiled a tremendous amount of knowledge. I'm just going to copy & paste from one of her posts about the drug treatment options: High ACE angiotensin converting enzyme is a blood test that shows you have systemic inflammation in your body. It is not specific for sarcoidosis, but is a signal that they should check further. He's done right by ordering a chest xray, as more than 90% of sarcoidosis shows up in the lungs. Sarcoidosis is considered an autoimmune disease, they seem to think that it is virus started, then the body gets the signal to fight off the infection, and it doesn't stop attacking once the virus is gone, so it builds white cell on white cell which calcify and end up as granulomas. Easy way to think of it is to see that this changes the structure of our organs and then the organs don't work correctly. The medical community doesn't yet know what causes sarcoidosis, and we don't have a cure. So, they treat the inflammation with anti-inflammatories, prednisone and if you need long term treatment, they will use drugs known as DMARD's-- Disease Modifying Anti-Rheumatic Drugs--Imuran, Arava, methotrexate or Plaquenil or BRM's-- Biological Response Modifiers.--Enbrel, Humira, Remicade and Cellcept. The advantage is that BRM's knock out only a part of the immune system, instead of the your entire immune system. Most often they start with the standard prednisone, but studies now show that this is just masking the problems-- and creating sometimes more problems with blood sugar, mood issues, weight gain and osteoporosis. So it's not a fix all. Sadly, none of the others are either, but they do a better job with less side effects than the pred. Your doc will want to start with pred-- it's considered to be the least offensive, and then add or change and try other combinations so that you can continue to function as well as possible. It's important to pace yourself, as with all inflammatory disease, you run a low grade fever pretty much constantly, and this really wipes you out. It also seems to keep us borderline dehydrated, so keeping your fluid and electrolyte levels as close to normal really helps. You can do this by cutting out the caffeine, the high fructose corn syrups, sodas, and alcohol. Decaf teas, 100% fruit juice, and water become your friends. You'll find you hurt less and have alot less body pain if you make these changes. Get away from processed, fast foods, and go as natural as possible. Whatever you can do to keep moving, exercise-- keep doing it. With NS it can effect both the central nervous system, as well as the peripheral nervous system. It's the PNS that messes with the extremities, making your muscles and ligaments and joints (we tend to develop a sarcoid-induced arthritis) and if it involves your nerves, then signals can be disrupted to your hands and feet. Sarcoidosis is not a cake walk, but it's not a death sentence either. It will teach you to listen to your body. If you're tired--rest. If you find you get wiped out with the regime you're on, change what you're doing. Take it easy-- and don't do the macho work out-- take a walk if you're able, but you may find you can't climb the mountain. In our MESSAGE ARCHIVES as well as the LINKS we have a tremendous amount of information. You are welcome to go to these sections of the group site and you can search by topic-- and print out and share the info with your docs. You will find that you are going to be teaching them about sarc-- as there is still a tremendous amount of "old school" that still thinks that pred is the only choice and that this will burn itself out in a couple of years. If you have NS-- it probably will need treatment-- so ask if they can do a steroid sparing option-- Methotrexate or Plaquenil. Know that these take a few weeks to get to a therapuetic level-- so it will take patience. Not much to add to what Tracie said except that we each react differently to sarc, even in the same body systems/organs & we each respond differently to the various meds. It can take time & persistence to find the best combination of meds for you, and you may need to change that combo as your situation changes. It's important to have docs who listen to you, who are willing to put in the time & effort to assess your response to treatment & change it as needed. We strongly recommend that you keep a diary of symptoms & drug side effects. I keep mine in the computer, updating frequently but saving the old ones. It's come in handy many times as I can't remember when I started certain symptoms, when they improved or worsened, etc. It's also important to have someone go with you to appts. Have a list of questions or concerns & make sure your advocate has a copy. Their job is to make sure the doc addresses every item on the list & not let him/her out the door until it's done. They don't have to have a medical background but need to care about you & be assertive enough to stand up for you. It's nice if medical people don't intimidate them either (I'm a medical person myself & they should not get annoyed or defensive, as long as patient/advocate are assertive & not aggressive). , this is a lot of info, maybe much more than you needed or wanted, but just pick out what is useful for you. You will get more responses from the group; just remember that we are all sick, some more than others, and it may be a couple of days before we get back to you. The group has been quiet for a few days. I don't know if it's the heat or what--seems like most of us with sarc don't tolerate heat well. Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 > To: Neurosarcoidosis > Date: Sat, 26 Jun 2010 20:00:34 +0000> Subject: New member> > Hi,> > I have just joined the Group. I was diagnosed around six months ago with neurosarcoidosis. This was proved through elevated ACE levels and the relevant bands from CSF tests. I was put on preds and methotrexate and felt good for a while with the ACE coming into the top end of the normal range. The preds were reduced to zero and the ACE levels raised again, which means that the methotrexate was not working. The next step is to raise the methotrexate. If that doesn't work, one option is to start on infliximab. The whole matter is in the Lord's hands, as he is the only one with real authority.> > Best regards,> > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2010 Report Share Posted June 27, 2010 hi keith, wlecome and sorry to meet you this way. that's how they confirmed my dxs. by 3 spinal taps with in 3 months each one got worse, they even thought i had lymphoma. I also have the lesions in my head and other organs, do you have any of the crystalized lesions? since my dxs in 2001 I was on imuran , cellcept, and methetrexate pills and no avail so no i am on methetrexate injections and they are working better than the pills. have you tried the injections yet? you came to the right place for a wealth of imformation. many blessings and pain free day Hi,I have just joined the Group. I was diagnosed around six months ago with neurosarcoidosis. This was proved through elevated ACE levels and the relevant bands from CSF tests. I was put on preds and methotrexate and felt good for a while with the ACE coming into the top end of the normal range. The preds were reduced to zero and the ACE levels raised again, which means that the methotrexate was not working. The next step is to raise the methotrexate. If that doesn't work, one option is to start on infliximab. The whole matter is in the Lord's hands, as he is the only one with real authority.Best regards, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2010 Report Share Posted July 1, 2010 Welcome to the group. I am sure you will find the information that the group has to offer extremely helpful. I know I have. I am the caregiver for my wife . She was on Methotrexate at the highest dose of pills and then on injection. We had to begin using Cellcept as a replacement to the methotrexate as it eventually did not work. I wish you the best of health you can have.MattSubject: New memberTo: Neurosarcoidosis Date: Saturday, June 26, 2010, 4:00 PM Hi, I have just joined the Group. I was diagnosed around six months ago with neurosarcoidosis. This was proved through elevated ACE levels and the relevant bands from CSF tests. I was put on preds and methotrexate and felt good for a while with the ACE coming into the top end of the normal range. The preds were reduced to zero and the ACE levels raised again, which means that the methotrexate was not working. The next step is to raise the methotrexate. If that doesn't work, one option is to start on infliximab. The whole matter is in the Lord's hands, as he is the only one with real authority. Best regards, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2010 Report Share Posted July 4, 2010 Hi , I had all the usual nerve tests and so forth, with final dx through ACE and CSF tests. It all started with the spine deteriorating, so I was treated for a herniated disc, which involved physio and a couple of lumber punches. They worked a bit. I also am being treated for a sero-negative RA, which was caused by the NS. Diagnosing NS seems to be a matter of elimination. When nothing else fits... For me it has hit the bottom of the spine primarily and the corda equina, which messes with the waterworks - not to be envied! The rest of the spine is about as stable as the gearbox in a 1950's motor car. The spinal problem then runs down the legs and feet by trapping the nerve - at leats that how it feels. It seems much worse when I write it down than to live with it. Many thanks for the welcome. I wish you all blessings, > > hi keith, > > wlecome and sorry to meet you this way. that's how they confirmed my dxs. > by 3 spinal taps with in 3 months each one got worse, they even thought i > had lymphoma. I also have the lesions in my head and other organs, do you > have any of the crystalized lesions? > since my dxs in 2001 I was on imuran , cellcept, and methetrexate pills and > no avail so no i am on methetrexate injections and they are working better > than the pills. have you tried the injections yet? > you came to the right place for a wealth of imformation. > many blessings and pain free day > > > > In a message dated 6/26/2010 5:49:06 P.M. Eastern Daylight Time, > keith@... writes: > > > > > Hi, > > I have just joined the Group. I was diagnosed around six months ago with > neurosarcoidosis. This was proved through elevated ACE levels and the > relevant bands from CSF tests. I was put on preds and methotrexate and felt good > for a while with the ACE coming into the top end of the normal range. The > preds were reduced to zero and the ACE levels raised again, which means that > the methotrexate was not working. The next step is to raise the > methotrexate. If that doesn't work, one option is to start on infliximab. The whole > matter is in the Lord's hands, as he is the only one with real authority. > > Best regards, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2010 Report Share Posted November 23, 2010 Good Morning, My name is La and i have recently been diagnosed with neuro sarcoidosis. Allow me to introduce myself. Before getting sick I was a vibrant 36 year old mother of two boys and a wife of 15 years. I was team mom, working and always busy running around with my boys and their sports. Sometime in February I started having problems with my eyes. I had a lot of inflammation in my eyes and my vision began getting really blurry. One morning I woke and discovered that I was blind in one eye. It was discovered that I had severe cerebral fluid building up in my brain which was compromising my sight. I had to have a shunt placed in my head to continuously drain the fluid. While in the hospital they discovered that my cerebral fluid had a lot of white cells. I had inflammation in my brain (white spots on the MRI), severe fatigue, joint pain and my sed rate was 140. Test after test with results coming back negative for Lupus and MS noone could figure out what was wrong with me. The neurologist, rheumatologist, and opthamologist determined that all of my symptoms was a result of neuro sarcoidosis. My eye sight got a little better after the surgery but I have permanent optic nerve damage and still have a lot of inflammation in my eyes that wont seem to go away. Therefore, my vision is really blurry and my depth perception and periphrial vision has been compromised. I have been really depressed and disgusted. I just want my life back!!!! Unable to work and do for my family has been really hard on me. On top of that I have no health insurance. Go figure. After reading some of your posts, I see I am not the only one with memory loss and trouble finding words to express myself. I thought that it was just me being frustrated. I was not aware that this was one of the syptoms of the disease. I often find myself forgetting words and trying to find the right word to fit in the sentence. I am having trouble concentrating on reading and doing my school work. I cant seem to remember and comprhend the information. Prior to me becoming sick I had a 4.0 in school. I also find myself with the shakes and in pain when I over exert myself. Which is rather easy to do these days. I did not mention this to the doctor because I thought it was just me being a worry wort. But after reading your posts I see this is something that I need to mention to the neurologist. They have me on prednisone (40mg) a day and I have been on this for the past two months. I hate the side effects and how it is making me gain weight. They want to keep me on the steroids for about 6 months and then give me a remicade infusion drip. Is anyone familiar with this? Sorry this is sooooo long but I have been holding this in and had trouble talking about this. I look forward to meeting everyone and getting to know everyone. Its a relief to talk to people that understand my issues and not have people look at you like you are crazy because on the outside I look perfectly fine. Thanks for listening and look forward to everyone's feedback and posts. La Boswell Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2010 Report Share Posted November 23, 2010 Welcome to the group La - very sorry that you have to BE here in the first place, of course, but glad you've found us. What a rough time you've had of it, I'm so sorry. The shunt thing sounds pretty horrible and scary It's quite shattering when these things happen, isn't it, and our expected future suddenly veers off course, and all the things we used to be able to do suddenly go off the rails. There's a real grief process to go through - and I've read that often the grief process in chronic illness keeps repeating itself over the years, as symptoms flare. Like you my first NS (neurosarcoid) symptoms were visual - 2 months ago I lost half the vision (left half) in both eyes, and my vision is much blurrier, and they found lesions in my optic chiasm. After a month on pred (prednisolone) at 60 mg/day, I've got a fair bit of my vision back. Like you I'm on 40 mg now, but I'm worried that the remaining vision loss (which is central so still affects how I read etc) is getting a bit worse again. My neurologist says the damage may be permanent :/ The steroids are awful, aren't they? I HATE the whole 'moon face' thing, and gaining weight (I was a bit too 'cuddly' to start with too! LOL). My husband just doesn't get it that this change in body shape makes me depressed! There's a book which I got recently that you might like to find a copy of, called " Coping with Prednisone " which covers a lot of stuff about weight and other side effects etc. I'm doing a no sugar diet at the moment, and seem to be slowly losing some weight, which is encouraging. Everyone here is lovely, I know you've found a friendly place to hang out, where we all 'get' what you're going through. Cheers, in Australia .................................................................................\ ........................ http://sutherland-studios.com.au Dummies author : http://tinyurl.com/CodesandCryptograms http://tinyurl.com/WordSearches .................................................................................\ ........................ > > Good Morning, > > My name is La and i have recently been diagnosed with neuro sarcoidosis. Allow me to introduce myself. Before getting sick I was a vibrant 36 year old mother of two boys and a wife of 15 years. I was team mom, working and always busy running around with my boys and their sports. Sometime in February I started having problems with my eyes. I had a lot of inflammation in my eyes and my vision began getting really blurry. One morning I woke and discovered that I was blind in one eye. It was discovered that I had severe cerebral fluid building up in my brain which was compromising my sight. I had to have a shunt placed in my head to continuously drain the fluid. While in the hospital they discovered that my cerebral fluid had a lot of white cells. I had inflammation in my brain (white spots on the MRI), severe fatigue, joint pain and my sed rate was 140. Test after test with results coming back negative for Lupus and MS noone could figure out what was wrong with me. The neurologist, rheumatologist, and opthamologist determined that all of my symptoms was a result of neuro sarcoidosis. > > My eye sight got a little better after the surgery but I have permanent optic nerve damage and still have a lot of inflammation in my eyes that wont seem to go away. Therefore, my vision is really blurry and my depth perception and periphrial vision has been compromised. I have been really depressed and disgusted. I just want my life back!!!! Unable to work and do for my family has been really hard on me. On top of that I have no health insurance. Go figure. > > After reading some of your posts, I see I am not the only one with memory loss and trouble finding words to express myself. I thought that it was just me being frustrated. I was not aware that this was one of the syptoms of the disease. I often find myself forgetting words and trying to find the right word to fit in the sentence. I am having trouble concentrating on reading and doing my school work. I cant seem to remember and comprhend the information. Prior to me becoming sick I had a 4.0 in school. I also find myself with the shakes and in pain when I over exert myself. Which is rather easy to do these days. I did not mention this to the doctor because I thought it was just me being a worry wort. But after reading your posts I see this is something that I need to mention to the neurologist. They have me on prednisone (40mg) a day and I have been on this for the past two months. I hate the side effects and how it is making me gain weight. They want to keep me on the steroids for about 6 months and then give me a remicade infusion drip. Is anyone familiar with this? > > Sorry this is sooooo long but I have been holding this in and had trouble talking about this. I look forward to meeting everyone and getting to know everyone. Its a relief to talk to people that understand my issues and not have people look at you like you are crazy because on the outside I look perfectly fine. Thanks for listening and look forward to everyone's feedback and posts. > > La Boswell > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2010 Report Share Posted November 26, 2010 La, I'm a little behind in my emails, but welcome, yes many of us have been through what you are going through, I'm sorry you have to deal with this, it stinks. I've had it for 16 years now. I am also on Remicade for the past 2 years, and it has helped me a lot, I'm also on Plaquanil, Methotrexate, and even though it has not stopped the progression of my disease it has slowed it down. I use to be a Labor and Delivery nurse, but had to leave that job 8 years ago, hard to believe. I have been lucky in that I don't have the eye issue you have, I have very dry eye, that leek a lot, and when I'm tired my vision is blurry, otherwise I can't complain. I have a lot of trouble with my legs, can't walk very far, or very long, my legs begin to feel as though there full of lead, I have a lot of numbness, all over, more on L side, and the memory issue big. I have myself done well with Remicade, I was on Prednisone for 5 years, and become psychotic, I mean it really made me crazy, even today when I need steroids I get IV, not the pills. Don't ever feel bad for letting go and getting things of your chest, we understand, and we are here to listen, help and support. I know what you mean about the outside looks good, so people just don't get it. I get asked " how are you " I just say I'm good, and they almost always say, Well you look wonderful:) I smile life goes on. Stay in touch. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:) Good Morning, My name is La and i have recently been diagnosed with neuro sarcoidosis. Allow me to introduce myself. Before getting sick I was a vibrant 36 year old mother of two boys and a wife of 15 years. I was team mom, working and always busy running around with my boys and their sports. Sometime in February I started having problems with my eyes. I had a lot of inflammation in my eyes and my vision began getting really blurry. One morning I woke and discovered that I was blind in one eye. It was discovered that I had severe cerebral fluid building up in my brain which was compromising my sight. I had to have a shunt placed in my head to continuously drain the fluid. While in the hospital they discovered that my cerebral fluid had a lot of white cells. I had inflammation in my brain (white spots on the MRI), severe fatigue, joint pain and my sed rate was 140. Test after test with results coming back negative for Lupus and MS noone could figure out what was wrong with me. The neurologist, rheumatologist, and opthamologist determined that all of my symptoms was a result of neuro sarcoidosis. My eye sight got a little better after the surgery but I have permanent optic nerve damage and still have a lot of inflammation in my eyes that wont seem to go away. Therefore, my vision is really blurry and my depth perception and periphrial vision has been compromised. I have been really depressed and disgusted. I just want my life back!!!! Unable to work and do for my family has been really hard on me. On top of that I have no health insurance. Go figure. After reading some of your posts, I see I am not the only one with memory loss and trouble finding words to express myself. I thought that it was just me being frustrated. I was not aware that this was one of the syptoms of the disease. I often find myself forgetting words and trying to find the right word to fit in the sentence. I am having trouble concentrating on reading and doing my school work. I cant seem to remember and comprhend the information. Prior to me becoming sick I had a 4.0 in school. I also find myself with the shakes and in pain when I over exert myself. Which is rather easy to do these days. I did not mention this to the doctor because I thought it was just me being a worry wort. But after reading your posts I see this is something that I need to mention to the neurologist. They have me on prednisone (40mg) a day and I have been on this for the past two months. I hate the side effects and how it is making me gain weight. They want to keep me on the steroids for about 6 months and then give me a remicade infusion drip. Is anyone familiar with this? Sorry this is sooooo long but I have been holding this in and had trouble talking about this. I look forward to meeting everyone and getting to know everyone. Its a relief to talk to people that understand my issues and not have people look at you like you are crazy because on the outside I look perfectly fine. Thanks for listening and look forward to everyone's feedback and posts. La Boswell Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2010 Report Share Posted November 26, 2010 Marla said: I get asked "how are you" I just say I'm good, and they almost always say, Well you look wonderful:) I smile life goes on. La, occasionally someone will ask me how I am, REALLY. Most of the time, they don't really want to know. So my standard reply when someone asks me how I am is, "Good enough!" Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2011 Report Share Posted April 3, 2011 Welcome, Lyn. I'm sorry that you had to find us, but glad that you did. Does that make sense?!? Your husband has really been slammed, hasn't he? Do y'all have a good support system? Do you feel that his medical team knows what they are doing? There are still many doctors who are stuck in old-time thinking about sarc & haven't kept up with the latest research on treatment options. What kind of symtoms is having? What meds is he taking? This is a huge burden for you, of course. Do you have support--family, friends, church family, etc.--who can help you with your younger kids, the house & everything else? I'm sure you are aware that is at risk for depression; in fact, I'd be surprised if he wasn't depressed. You are also at risk for depression; that's why you need a solid base of support for yourself. Ramblin' RoseModerator "I child-proofed my home and they STILL get in!" (Bumper sticker) > To: Neurosarcoidosis > Date: Sun, 3 Apr 2011 20:57:15 +0000> Subject: New Member> > Hello everyone!> My name is Lyn Rebro. I am new to the Neurosarcoidosis Yahoo Group. My husband, is a disabled veteran of Desert Shield/Desert Storm who has developed several life threatening diseases including Sarcoidosis, Gulf War Illness (waiting for diagnosis), ITP (blood disease), Irritable Bowel Syndrome and Chronic Fatigue Syndrome. He spends a lot of time at the VA Medical Center in Minneapolis, MN going through various treatments. We have four children ages 18, 9, 7 and 6. I joined this website to site to be a source of strength and to allow you to walk with us on our journey. > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > > Quote Link to comment Share on other sites More sharing options...
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