Guest guest Posted May 13, 2004 Report Share Posted May 13, 2004 Congrats on on your upcoming surgery Gale! There's a good bit of activity on this board and everyone's very open so I'm sure if you have issues or questions we'll all be here to help. Lap RNY April 9, 2004 348/311/140 www.carrieburns.net > hi, i'm new to the group and wanted to introduce myself. i'm from > maryland and am scheduled for open RNY on july 19, 2004. i've been > researching for over a year now and feel i'm making the right choice > for me. i'll probably lurk mostly until after surgery and then i'm > sure i'll have tons of questions. congrats to all who have had the > surgery and been succesful. see you on the loosing side. > > gale in maryland > open rny 7/19/04 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2006 Report Share Posted February 3, 2006 Welcome, ! We're glad you're here. There are some other " Jersey " moms here too, hopefully they'll see your post and de-lurk! What doctor are you going to? There's a really good tips document for using the brace. It's in the files section on this group's website and also at http://members.tripod.com/ponseti_links-ivil under the bracing section. Hopefully this will help you! Yes, his muscles were probably tender, but they should be better by now (Friday). Hopefully he's doing great. We'll help you out if things don't get any better- just let us know what's going on! Regards, & (3-16-00, left clubfoot) > > Hi to everyone! I'm new here and looking for people going through or > having went through our situation. My son is 7 wks old (unilateral > club foot) now and just got his DB bar/shoes on Tuesday. We are > excited that the casting is finally over, but knew there would be some > frustration to deal with because he cannot move his feet > independantly. Just looking for any ideas, helpful hints for dealig > with this bar on his feet. I read somewhere to try using no-skid > socks so the foot doesn't move around in the shoe. I'm trying to > teach him to move them both together so he will get more comfortable > with it. I imagine his foot is tender right now from the casting? > I've never had one. > > Thank you in advance for your help! > > in New Jersey > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2006 Report Share Posted February 3, 2006 Thank you for your EXTREMELY HELPFUL information! I am learning so much from this group and wishing I had this info before. A bit about us: We live in Central New Jersey and found out that would be born with a left club foot. We went online to get info on where to go and what to do. Were going to see Dr. son at CHOP, but decided that a weekly drive there would prove too much. Decided that feedback on a local ortho here would likely be just as good. We use Dr. Mark Rieger in town. Not sure we care too much for him, but he is doing the Ponseti method and is good at what he does - personality aside. I wish I had known that I could chose my own shoes for him. I prefer those with the hole in the heel - makes perfect sense to me! This way I'd know if his feet were seated properly. The sleeping isn't exactly back to where it was prior to the brace, but I'm assuming it will be better really soon when he figures out how to move those feet together. Not too much complaining from him otherwise... Do you all think I should still check his feet periodically? I feel like I should, but don't want to ruin a good thing if they ARE on properly, KWIM? THANK YOU, THANK YOU, THANK YOU for your help!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2006 Report Share Posted February 3, 2006 Hi , from Vancouver Canada here, welcome to the group =). You will find this site very helpful - informative and so supportive, great group of people here! I see you have already been directed to the tips & tricks doc. I found this just so helpful when first getting our daughter Grace into the shoes properly! It took her only a couple of days to adjust and we ended up with absolutely no problems at all in the Markell's thanks in large part to this doc. so give it a read. Our daughter now cruises and dances in her brace as do a lot of kids here, you will continually be amazed at what they can do in the brace =) & Grace 18 mos unilateral rcf FAB 13 hrs > > Hi to everyone! I'm new here and looking for people going through or > having went through our situation. My son is 7 wks old (unilateral > club foot) now and just got his DB bar/shoes on Tuesday. We are > excited that the casting is finally over, but knew there would be some > frustration to deal with because he cannot move his feet > independantly. Just looking for any ideas, helpful hints for dealig > with this bar on his feet. I read somewhere to try using no-skid > socks so the foot doesn't move around in the shoe. I'm trying to > teach him to move them both together so he will get more comfortable > with it. I imagine his foot is tender right now from the casting? > I've never had one. > > Thank you in advance for your help! > > in New Jersey > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2006 Report Share Posted February 4, 2006 Glad to have you here! Did you use the Ponseti Method for treatment? Who is the Dr? What are his feet set at in the bar/shoes? Trying to teach him to move both feet together will help with frustration. How is he doing in them? Christee Mother of... *Josh, Central Auditory Processing Disorder/Sensory sensitivity/learning & Speech disorders (9yrs old) **Aspen, Bilateral minor Metatarsus Adductus (5 1/2 yrs old) ***Dylan, (4 yrs old) & ****Lilee ~ Unilateral A-Typical (complex) Club Foot w/Cavus/Plantaris (R foot) & Mild/Moderate Metatarsus Adductus (L foot). *Ponseti/ Brace 22/24 until 2/14/06, then to 18/24. --------------------------------- Relax. Yahoo! Mail virus scanning helps detect nasty viruses! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2010 Report Share Posted February 4, 2010 I don't know that I have any advice but I went on IV steroids when I was 16 and had to go on 6MP to taper off. Until switching to Lialda and starting SCD I wasn't able to get off of the prednisone completely but I did keep from flaring with a really low dose (2.5mgs). There's no way I could say for sure that the 6MP helped me taper down but I was able to get down pretty low while on it. I never suffered any ill effects from the 6MP; I did from the prednisone. Congratulations on getting him off the IV steroids though! That transition was incredibly painful for me. I had 3 nights where I was up crying because my knees hurt so badly. So that's my experience with it. I think if I had to do it over again I would have done the same thing if only because I would do pretty much anything to get off the steroids. Oh - doing rowasa helped settle my system as well. It's no fun but (for me) it makes a noticeable difference. Good luck! I hope your son feels better soon! And good for you for starting him on SCD this early! Stacey > In the hospital, my son responded well to iv steroids- he stopped bleeding and stopped having diarrhea. He came home on oral steroids (prednisolone) and after a week, they started tapering him down. His symptoms came back, and now he is on a pretty high dose (any higher, and they said he would have to switch to iv steroids). So, they want to add 6MP or azathioprine before they try to taper him off the steroids again. His doctors don't seem very open to discussing their rational or presenting options- I guess they used to everyone just trusting that they know best. > > I'm exhausted and fearful, and would appreciate any personal experiences people have had, or any advice on where to research these medicines. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2010 Report Share Posted February 4, 2010 Amelia, Thanks for taking the time to respond to my post. Yes, he has been on the diet since we first suspected uc- the beginning of November. (Only three weeks after his first symptoms.) He was off the diet for several days when he was hospitalized in December. He is eating between a half cup to a whole cup of dripped yogurt(homemade, 24 hour fermented)each day. In addition to prednisolone, he is currently he is taking Apriso, a newer anti-inflamatory, which they swiched him to after he had an allergic reation to sulfasalazine. (They chose Apriso because we can open the capsles to make them easier to swallow.) His entire colon is inflamed, so I don't think suppositories will work for him. The LDN peaked my interest, anyone familar with trying it with children? I realize the medicines just mask symptoms, but he needed steroids to stop the bleeding- the diet alone was not working quickly enough for him to recover on his own. I'm totally committed to the diet. My husband and his bother were both diagnosed with ulcerative colitis within months of each other. My husband stuck with the diet, while his bother only tried it for a month, but couldn't handle the the die off symptoms. My husband is currently off all medications, while his brother needed a total colectomy. Maybe its not accurate to compare the two, but in my mind the diet is responsible for keeping my husband's body intact and whole. Thanks for listening, Calypso > > Calypso, > > Is your son on the diet now? > > Prednisone will only mask the symptoms, it isn't a cure and eventually they will label him 'steroid dependent' because he won't be able to taper off without having a flare -- much like he is doing now. Prednisone tends to raise blood sugar and if he has a yeast problem, it will contribute to making it worse. > > The 6MP will suppress his immune system so that it can again 'ignore' the inflammation and damage that is going on in his gut. Again, it isn't a cure, it is only masking the symptoms while worsening his long term health. 6MP is slow to start acting and could take at a minimun weeks to take effect and regular blood tests will be necessary to make sure his immune system isn't too suppressed and that damage isn't happening to other organs. My husband couldn't use it because even at 1/2 the regular dose only every other day it would knock his immune system too low. > > Has the doctor discussed Asacol (orally or suppository)? Or possibly prednisone suppositories? Suppositories can be a much better option unless the entire colon/upper colon is involved. That way the medicine gets to the part that needs it instead of the entire body. > > > All of these drugs can be of good use under the right circumstances. > Sometimes the gut is so inflammed that almost all food will be > rejected -- even good healing food--so these medications are good at > 'buying' a bit of time so that nourishing food can help heal the gut. Like I said, they help mask the symptoms, they are not a cure, and they will eventually stop working unless the underlying problem is address. > > Another thing to consider is to investigate Low Dose Naltrexone (LDN). http://www.lowdosenaltrexone.org There is some recent research that shows it is a strong, properly functioning immune system that is needed, not a suppressed one. LDN helps boost the immune system. It is an FDA approved, out of patent drug that was designed for another purpose, but used in low doses actually has come to give amazing help to people with all sorts of autoimmune diseases, cancer, AIDS, etc. > > Amelia. > Husband UC 9 years, SCD 19 months > LDN 3mg > > > > > ________________________________ > > To: BTVC-SCD > Sent: Thu, February 4, 2010 4:15:41 AM > Subject: new to the group > > > Hi, > I joined the group sometime last month, but I haven't posted yet. My six year old son was diagnosed with ulcerative colitis two months ago, and my husband also has ulcerative colitis, (diagnosed about 4 1/2 years ago). My husband has had good results on SCD, and hasn't been on any medication for the last two years. I am very commited to keeping my son on the diet, but I have some questions about other treatments the doctors are recommending. > > In the hospital, my son responded well to iv steroids- he stopped bleeding and stopped having diarrhea. He came home on oral steroids (prednisolone) and after a week, they started tapering him down. His symptoms came back, and now he is on a pretty high dose (any higher, and they said he would have to switch to iv steroids). So, they want to add 6MP or azathioprine before they try to taper him off the steroids again. His doctors don't seem very open to discussing their rational or presenting options- I guess they used to everyone just trusting that they know best. > > I'm exhausted and fearful, and would appreciate any personal experiences people have had, or any advice on where to research these medicines. > > Thanks, > Calypso > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2010 Report Share Posted February 4, 2010 At 02:14 PM 2/4/2010, you wrote: The LDN peaked my interest, anyone familar with trying it with children? Dr. Jacquelyn McCandles has. — Marilyn New Orleans, Louisiana, USA Undiagnosed IBS since 1976, SCD since 2001 Darn Good SCD Cook No Human Children Shadow & Sunny Longhair Dachshund Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2010 Report Share Posted February 5, 2010 Calypso,His entire colon is inflamed, so I don't think suppositories will work for him. The LDN peaked my interest, anyone familar with trying it with children?I realize the medicines just mask symptoms, but he needed steroids to stop the bleeding- the diet alone was not working quickly enough for him to recover on his own. Dr. McCandless' group on yahoo. It's for kids with autistic symptoms, butshe also has kids with UC/Crohn's:http://health.groups.yahoo.com/group/Autism_LDN/But you can't take LDN at the same time as steroids - and watch out withthe steroids, as raised blood sugar can create an overpopulation ofyeast, which also has the effect of blocking the positive effects of the LDN. So she has an anti yeast protocol as well. Mara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2010 Report Share Posted March 14, 2010 Hi , Welcome, and you might find some support/scd friends here: www.austinscdfriends.com I think the green color indicates die-off of bad pathogens, so it’s actually a good sign! Carol CD 22 yrs SCD 5 yrs From: BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of jenniferorr So I have UC and started the diet about a week ago - I am doing pretty well - stomach pain way less, little to no gas, had two bms yesterday and one was halfway formed!!!!! I did notice way more diarrhea in the beginning - like 8 to 10 times a day at my worst!!! Which I read often happnes at the beginning. One thing that worries me a little is the color - it is darker than normal and kinda green. What a way to introduce myself to the group!! - a question on diarrhea color!!! But just wondered if that was something others had found happens? Also does anyone know of any support groups in the Austin, Texas area? I know having one would help - Thanks! - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2010 Report Share Posted March 14, 2010 Hi and welcome. Yes, we talk poop here PJ > > Hi , > > Welcome, and you might find some support/scd friends here: > www.austinscdfriends.com > > I think the green color indicates die-off of bad pathogens, so it's actually > a good sign! > > Carol > > CD 22 yrs SCD 5 yrs > > > > > > From: BTVC-SCD [mailto:BTVC-SCD ] On Behalf > Of jenniferorr > > So I have UC and started the diet about a week ago - I am doing pretty well > - stomach pain way less, little to no gas, had two bms yesterday and one was > halfway formed!!!!! > I did notice way more diarrhea in the beginning - like 8 to 10 times a day > at my worst!!! Which I read often happnes at the beginning. One thing that > worries me a little is the color - it is darker than normal and kinda green. > > What a way to introduce myself to the group!! - a question on diarrhea > color!!! But just wondered if that was something others had found happens? > Also does anyone know of any support groups in the Austin, Texas area? I > know having one would help - > Thanks! - > > Quote Link to comment Share on other sites More sharing options...
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