Guest guest Posted November 22, 2005 Report Share Posted November 22, 2005 Hey Sammie Mac, You do have options: Physical Therapy: Could fix the problem in and of itself or be a complete waste of time (I did not benefit from PT). Glucosamine/Chondroitin: Supposed to rebuild cartilage and lubricate the joints, thus alleviating the cartilage defect problem. Might help, probably won't. I didn't notice any benefit. Knee Brace: Takes some of the load off the joint and provides compression which helps. I use mine when I'm going to be on my feet for a while and active but it doesn't alleviate any pain. It does feel better when I remove it though which seems odd. NSAIDs: Supposed to help by reducing inflammation which is one of the causes of PFS pain. Only gave me stomach problems, had to stop. Ice: Reduces swelling and inflammation. Made my knee cold, that's about it. Orthotics: Corrects misalignment problems resulting from poor arches in the feet. Mine seem to help a bit but not enough to make a big difference (yet). Acupuncture: Promotes healing by redirecting blood flow to problem areas. I tried it, determined it wasn't doing anything and stopped. Chiropractic Adjustment: Activator is supposed to " Shock " the knee into re-aligning itself. Back adjustments are supposed to help with problems caused by subluxation which affect the knee. I'm embarassed I even gave this a try. Myofacial or Deep Tissue Massage: Haven't tried this. Suppose it couldn't hurt except in the wallet. Arthroscopic Surgery: I scheduled mine for Feb. 2nd with one of the top knee surgeons in the area. I'm optimistic that this will finally make a difference and get me back on track. No guarantees though but it's something to hope for. So you see, there is a lot you can do. Obviously for some, different treatments work better or worse. Many people suffering from PFS and CMP improve with conservative treatment (PT, NSAIDS, etc.). Some only improve after surgery. Others are buggered for life and have to manage it with lotions and potions. Good luck, -JT > > Yesterday in fact, was the long awaited result from my MRI scan (left > knee). > > My Dr told me there was good news & bad news. The good news was no > serious damage to ligaments, the bad news I have chondromalacia and > there is nigh on little that can be done.. except take ibuprofen > (aadvil etc) or similar when it hurts. > > I asked him directly if it was arthritis and he said no but it would > probably develop. > > I looked online and one of the first sites I found said chondromalacia > is called osteoarthritis in sufferes over 30 (which I am). > > So could somebody please tell me, who is right, me or the doc? Do I > have osteoarthritis, is the only 'treatment' taking anti- > inflammotories??? > > Thank you > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2005 Report Share Posted November 22, 2005 JT, you made me laugh today....Thank You. Your message sounded like every doctors appointment I go to, except after I tell the doc all I tried, he tells me I am screwed. I hope your surgery goes well!! Although I tried it and it did nothing for me!!! Happy Thanksgiving! jtroc67 <jeff.trockman@...> wrote: Hey Sammie Mac, You do have options: Physical Therapy: Could fix the problem in and of itself or be a complete waste of time (I did not benefit from PT). Glucosamine/Chondroitin: Supposed to rebuild cartilage and lubricate the joints, thus alleviating the cartilage defect problem. Might help, probably won't. I didn't notice any benefit. Knee Brace: Takes some of the load off the joint and provides compression which helps. I use mine when I'm going to be on my feet for a while and active but it doesn't alleviate any pain. It does feel better when I remove it though which seems odd. NSAIDs: Supposed to help by reducing inflammation which is one of the causes of PFS pain. Only gave me stomach problems, had to stop. Ice: Reduces swelling and inflammation. Made my knee cold, that's about it. Orthotics: Corrects misalignment problems resulting from poor arches in the feet. Mine seem to help a bit but not enough to make a big difference (yet). Acupuncture: Promotes healing by redirecting blood flow to problem areas. I tried it, determined it wasn't doing anything and stopped. Chiropractic Adjustment: Activator is supposed to " Shock " the knee into re-aligning itself. Back adjustments are supposed to help with problems caused by subluxation which affect the knee. I'm embarassed I even gave this a try. Myofacial or Deep Tissue Massage: Haven't tried this. Suppose it couldn't hurt except in the wallet. Arthroscopic Surgery: I scheduled mine for Feb. 2nd with one of the top knee surgeons in the area. I'm optimistic that this will finally make a difference and get me back on track. No guarantees though but it's something to hope for. So you see, there is a lot you can do. Obviously for some, different treatments work better or worse. Many people suffering from PFS and CMP improve with conservative treatment (PT, NSAIDS, etc.). Some only improve after surgery. Others are buggered for life and have to manage it with lotions and potions. Good luck, -JT > > Yesterday in fact, was the long awaited result from my MRI scan (left > knee). > > My Dr told me there was good news & bad news. The good news was no > serious damage to ligaments, the bad news I have chondromalacia and > there is nigh on little that can be done.. except take ibuprofen > (aadvil etc) or similar when it hurts. > > I asked him directly if it was arthritis and he said no but it would > probably develop. > > I looked online and one of the first sites I found said chondromalacia > is called osteoarthritis in sufferes over 30 (which I am). > > So could somebody please tell me, who is right, me or the doc? Do I > have osteoarthritis, is the only 'treatment' taking anti- > inflammotories??? > > Thank you > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2005 Report Share Posted November 23, 2005 JT, great and thorough list! I would like to say what has helped me. Ice, definitely. Even if you can't tell if it's helping, ice is helping with CMP, and is important to do for inflammation. There are some great PT/sports gel packs you can buy cheaply on the internet for this. They are MUCH better than what you can find at the local drug store. They are just like the ones at PT. I have ones called Colpack made by Chattanooga Group. If your CMP is caused by malignment of the knee, like mine is, a knee brace that aligns the knee is extremely helpful durinig activities. I got one from my PT made by Bird & Crown, Inc. It's basically two long strips joined together at the knee, that you wrap around your knee to correctly align it, and also provides compression. PT and exercise to strengthen your quad and other leg muscles will help too. It may not be " enough, " but it does help and skipping these exercises is bad for many reasons. Good luck with everything, Deb >From: " jtroc67 " <jeff.trockman@...> >Reply-chondromalacia treatment >chondromalacia treatment >Subject: Re: newly diagnosed >Date: Tue, 22 Nov 2005 14:39:20 -0000 > >Hey Sammie Mac, > >You do have options: > >Physical Therapy: Could fix the problem in and of itself or be a >complete waste of time (I did not benefit from PT). > >Glucosamine/Chondroitin: Supposed to rebuild cartilage and lubricate >the joints, thus alleviating the cartilage defect problem. Might >help, probably won't. I didn't notice any benefit. > >Knee Brace: Takes some of the load off the joint and provides >compression which helps. I use mine when I'm going to be on my feet >for a while and active but it doesn't alleviate any pain. It does >feel better when I remove it though which seems odd. > >NSAIDs: Supposed to help by reducing inflammation which is one of the >causes of PFS pain. Only gave me stomach problems, had to stop. > >Ice: Reduces swelling and inflammation. Made my knee cold, that's >about it. > >Orthotics: Corrects misalignment problems resulting from poor arches >in the feet. Mine seem to help a bit but not enough to make a big >difference (yet). > >Acupuncture: Promotes healing by redirecting blood flow to problem >areas. I tried it, determined it wasn't doing anything and stopped. > >Chiropractic Adjustment: Activator is supposed to " Shock " the knee >into re-aligning itself. Back adjustments are supposed to help with >problems caused by subluxation which affect the knee. I'm embarassed >I even gave this a try. > >Myofacial or Deep Tissue Massage: Haven't tried this. Suppose it >couldn't hurt except in the wallet. > >Arthroscopic Surgery: I scheduled mine for Feb. 2nd with one of the >top knee surgeons in the area. I'm optimistic that this will finally >make a difference and get me back on track. No guarantees though but >it's something to hope for. > >So you see, there is a lot you can do. Obviously for some, different >treatments work better or worse. Many people suffering from PFS and >CMP improve with conservative treatment (PT, NSAIDS, etc.). Some >only improve after surgery. Others are buggered for life and have to >manage it with lotions and potions. > >Good luck, > >-JT > > > > > > > > Yesterday in fact, was the long awaited result from my MRI scan >(left > > knee). > > > > My Dr told me there was good news & bad news. The good news was no > > serious damage to ligaments, the bad news I have chondromalacia and > > there is nigh on little that can be done.. except take ibuprofen > > (aadvil etc) or similar when it hurts. > > > > I asked him directly if it was arthritis and he said no but it >would > > probably develop. > > > > I looked online and one of the first sites I found said >chondromalacia > > is called osteoarthritis in sufferes over 30 (which I am). > > > > So could somebody please tell me, who is right, me or the doc? Do I > > have osteoarthritis, is the only 'treatment' taking anti- > > inflammotories??? > > > > Thank you > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2005 Report Share Posted November 29, 2005 Thanks . I'm sorry you haven't found relief through surgery and otherwise. My doctor says it's only a 70% chance that I will improve after scope so I realize it may not help but I have to try! Good luck with everything, -JT > > > > Yesterday in fact, was the long awaited result from my MRI scan > (left > > knee). > > > > My Dr told me there was good news & bad news. The good news was no > > serious damage to ligaments, the bad news I have chondromalacia and > > there is nigh on little that can be done.. except take ibuprofen > > (aadvil etc) or similar when it hurts. > > > > I asked him directly if it was arthritis and he said no but it > would > > probably develop. > > > > I looked online and one of the first sites I found said > chondromalacia > > is called osteoarthritis in sufferes over 30 (which I am). > > > > So could somebody please tell me, who is right, me or the doc? Do I > > have osteoarthritis, is the only 'treatment' taking anti- > > inflammotories??? > > > > Thank you > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2005 Report Share Posted November 29, 2005 Please let us know how your surgery goes....beginning of next year I think you said. I have had increased swelling over the past few weeks, and of course that has made the pain worse. I am planning on making an appointment with my doc so he can send me to some kind fo pain management. But, with every doctors appointment comes the realization that I have no current options for relief, and that is a frustrating as the pain. Happy Holidays, jtroc67 <jeff.trockman@...> wrote: Thanks . I'm sorry you haven't found relief through surgery and otherwise. My doctor says it's only a 70% chance that I will improve after scope so I realize it may not help but I have to try! Good luck with everything, -JT > > > > Yesterday in fact, was the long awaited result from my MRI scan > (left > > knee). > > > > My Dr told me there was good news & bad news. The good news was no > > serious damage to ligaments, the bad news I have chondromalacia and > > there is nigh on little that can be done.. except take ibuprofen > > (aadvil etc) or similar when it hurts. > > > > I asked him directly if it was arthritis and he said no but it > would > > probably develop. > > > > I looked online and one of the first sites I found said > chondromalacia > > is called osteoarthritis in sufferes over 30 (which I am). > > > > So could somebody please tell me, who is right, me or the doc? Do I > > have osteoarthritis, is the only 'treatment' taking anti- > > inflammotories??? > > > > Thank you > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2006 Report Share Posted March 13, 2006 Nate, welcome to the group. Your doctor gave you the run down of the treatments for this disease. Aurgery is the best option for people that have this disease unless you would not be able to handle surgery. This is a progressive disease and if left untreated can be life threatening. There is no known reason why we get this disease as far as I know. The disease effects the Vagus nerve and that nerve controls the E. I have not taken any alteritive methodes to help me with this. I have had the surgery and I am very glad I have. I would suggest you find a sergeon that has delt with the disease and has done the surgery before if you decied to go that route. We are here to support you and some have strong convitction on how you should get this taken care of. Remember you have to make a decision that you feel best with. Once again welcome to the group adn if you have any other questions please feel free to ask. Look over the group site really well. There is a lot of information there. in Suffolk Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2006 Report Share Posted March 13, 2006 Hi Nate, Welcome to the group! I hope you find this family as a source of support and information - that's what its around for! > 1) Is there any commonality of source of this condition amongst us? I have been chronically a quick eater and maybe rapid swallowing without an interval messes up the muscles of esophogus? There is no commonality among us that we have figured out. We're just those lucky 1 in 100,000! > 2) I have been seeing (for past 2 weeks) a naturopath, who a)claims that almost all diseases result from body being too acidic from american diet and b)claims that nerves can be regenerated if body is more alkaline and taking certain supplements - she has never heard of achalasia but has cured double digit people of cancer and other diseases. My father is a doctor (ortho) and claims that nerves DO regenerate, but only within 18 months of them 'dying' - any thoughts here? Personally, I am not " into " the natural treatment of achalasia. I trusted my surgeon 100% when he suggested the heller with partial funduplication, and stuck with that train. > 3) has this group extensively looked at alternative methods to treatment - my doctor basically told me a)botox, b)dilation c) heller and kicked me out of his office - i think chinese and other methods may be underlooked at - I already feel worlds better eating less meat and more veggies and drinking alkaline water, etc. what about acupuncture? My doctor (who I have less and less respect for) said there is no example in history of esophogeal motility coming back, once lost. > > 4) why do I get the feeling that there are in fact more than 2000 people per year diagnosed with this? what is the common causality, in our world of excess? > > 5) In your (more experienced) opinion, am I better off gettig the myotomy soon (given the risk of my esopogus taking up half my chest cavity) or waiting until furhter advancements or naturopathic remedies are given a chance. Yes, you are better having your surgery sooner than later. The longer you wait, the higher the chances are of your esophogus stretching, and your symptoms getting worse. There is no cure for achalasia, only ways to treat the symptoms. There are over 1000 members of this group, and there is always someone around to answer your question, so ask away. Good luck! Hugs, in BC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2006 Report Share Posted June 4, 2006 Hi , Welcome to the group! I know how it feels when you're just starting on this OCD ride, and start reading all the posts here. It can be VERY scary to see what some are going through. But no, that does not mean your son is headed down that road. OCD comes in so many different forms, and things (symptoms) can change quickly, but there are many out there whose OCD stays mild and in the background. Even those who get severe can get incredible results from proper therapy (which it sounds like your son is getting). Also, by all accounts, the earlier the therapy is received, the prognosis for a " normal " life is extremely likely. I wouldn't worry about Ben gaining compulsions by reading or talking about that. I used to think that as well, but with OCD having no logic, our kids seem to shrug off others' symptoms. My daughter read " Up and Down the Worry Hill " and thought the boys thoughts/compulsions in the book were quite silly. She has heard of many kids' problems from this site, since at times I share posts with her to see if she had any ideas on how to help. She has much empathy for what someone is going through, but cannot understand why so-and-so does this or that vs. what she does. Good luck with everything and know that you are not alone - nna. NY > > Hi everyone, > I've been on this board for about two weeks, just reading all of your stories. It just breaks my heart to hear all you are going through, and it scared me quite a bit, but the bright spots give me hope. You are all so strong and courageous. Here is a bit of our story. > > My son Ben, just turned 7.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2006 Report Share Posted June 4, 2006 Thank you, nna. He has been very curious about OCD in other children. He told me a few nights ago that he was going to talk to Santa (yes, he still truly believes) about taking away his OCD and taking OCD away from all kids who have it. He said that if he could hold on until Christmas, Santa would fix it. Then he asked me if Santa could really do that, and that would be the best gift. I told him that didn't think Santa could do that. Then I started to cry, which I do a lot. He just patted my head and said " oh, mom, don't cry again. I'm fine. " He is also trying to guess who else he knows who might have it. A few adults we know have shared that they have it as well, since we've found out about Ben. Some close friends who we didn't know. Lately he's been telling everyone we meet that he has OCD and can't watch scary or violent movies. He really liked the boy in the Mr. Worry book. was a lot like him. Not many compulsions, but bad thoughts. He felt better knowing it wasn't just him. J Re: newly diagnosed Hi , Welcome to the group! I know how it feels when you're just starting on this OCD ride, and start reading all the posts here. It can be VERY scary to see what some are going through. But no, that does not mean your son is headed down that road. OCD comes in so many different forms, and things (symptoms) can change quickly, but there are many out there whose OCD stays mild and in the background. Even those who get severe can get incredible results from proper therapy (which it sounds like your son is getting). Also, by all accounts, the earlier the therapy is received, the prognosis for a " normal " life is extremely likely. I wouldn't worry about Ben gaining compulsions by reading or talking about that. I used to think that as well, but with OCD having no logic, our kids seem to shrug off others' symptoms. My daughter read " Up and Down the Worry Hill " and thought the boys thoughts/compulsions in the book were quite silly. She has heard of many kids' problems from this site, since at times I share posts with her to see if she had any ideas on how to help. She has much empathy for what someone is going through, but cannot understand why so-and-so does this or that vs. what she does. Good luck with everything and know that you are not alone - nna. NY > > Hi everyone, > I've been on this board for about two weeks, just reading all of your stories. It just breaks my heart to hear all you are going through, and it scared me quite a bit, but the bright spots give me hope. You are all so strong and courageous. Here is a bit of our story. > > My son Ben, just turned 7.. Our list archives, bookmarks, files, and chat feature may be accessed at: / . Our list advisors are Gail B. , Ed.D., Tamar Chansky, Ph.D.( http://www.worrywisekids.org ), Dan Geller, M.D.,Aureen Pinto Wagner, Ph.D., ( http://www.lighthouse-press.com ). Our list moderators are Birkhan, Castle, Fowler, Kathy Hammes, Joye, Kathy Mac, Gail Pesses, and Kathy . Subscription issues or suggestions may be addressed to Louis Harkins, list owner, at louisharkins@... , louisharkins@... , louisharkins@... . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2006 Report Share Posted June 4, 2006 Hi , welcome! I'm single mom to , 17, who has OCD. He also has diagnoses of dysgraphia and Aspergers Syndrome (on the autism spectrum). I have 2 others son also; a twin to (not identical) and then my oldest is 21. 's OC disorder began in 6th grade. And I wrote out " disorder " as he had some OCD tendencies/behaviors before that, but they were minor, nothing like the 24/7 compulsions that arrived suddenly in 6th grade. The rest of us in the family have our OC tendencies too. I think just was the unlucky one who had it develop into a full-blown disorder. Well, Ben is very lucky to have a therapist who understands OCD and he's making progress! Really, the tools she is teaching him right now will be ones he can use throughout his life. So he's on a good path now! He may still have days that seem like he's taken 2 steps back but OCD does wax/wane and can increase due to stress or even excitement, so there may be some ups/downs but he'll bounce back with his progress. And I know in some cases it seems like " defeat one thing and more pop up " but that's also normal/common and progress still seems to come a bit faster once they have managed to boss back/defeat a thought, ritual/compulsion, etc. Once conquered a couple things, it seemed like some others just disappeared or were much easier to work on, even new ones that popped up. I know I sometimes have worried about not wanting to mention something to that might give his OCD a new idea/trigger but apparently OCD *luckily* doesn't work that way. So hearing/reading about others' O's and C's shouldn't start something new. And it is helpful to know that others (kids and adults) have it and you are not alone! Well, wanted to welcome you and please keep us updated on how Ben and you all are doing! > > Hi everyone, > I've been on this board for about two weeks, just reading all of your stories. It just breaks my heart to hear all you are going through, and it scared me quite a bit, but the bright spots give me hope. You are all so strong and courageous. Here is a bit of our story. > > My son Ben, just turned 7.. He had talked about bad thoughts last year, and they went away. We tend to put a time limit on things and say " if by this date_____, things are not better, we will seek help " . Well, it must have come and gone and we chalked it up to a developmental stage or something. He wasn't very specific about them. He is a very verbal child and has always been great about expressing his feelings. We made every effort to always help him express himself, and never encouraged him to suppress his feelings. > > Well, a few months ago, the bad thoughts returned. Initially, we blamed it on a bad babysitting experience at a friend's house. He saw his friend's dad slap his friend across the face. This really frightened him, we have never spanked him so he was very disturbed by it all. The bad thoughts began a few days later. With lots of crying, clinging, hysterical. Then as time went on, we started to become more concerned. And started researching ocd. At first, it seemed like PANDAS. It was sudden and had many of the other symptoms like Pandas. But, we were disappointed to find that he has never had strep, that sounds so strange to say, the nurse was surprised that we were disappointed about it. It was real OCD, not pandas. > > Things started to fit together more as we look back. Odd things he would say and do. ie. --My shoes have " clowny-knots " and then a total meltdown about big knots in shoes. --Insistence on handwashing-only once though, but insistent. --asking if food was fresh at 4 years old. --asking me if I was going to kiss different guys we would see , mechanics, store clerks etc...(that one puzzled me) -- but, not an need for order or things just so, a very sloppy kid, messy room etc... He ahs also always had so much separation anxiety, doesn't want to be without us. > > Anyhow, fast forward to now. We are seeing a great therapist and she is helping him so much. He just seems for now to have the bad thoughts and he is able to ignore or change them to something else. We've seen her once a week for a month and she is wonderful, and she has great toys in her office according to Ben. > > I am a little worried reading about how far ocd can go. I'm wondering if it has to go that far. We caught it pretty early and his therapist says that she feels good about his prognosis for a fairly normal life. We homeschool, always have and probably always will, that was our plan already, so it seems like an even better idea now. He still sleeps with us and that works out well since he has trouble falling asleep and awakens with nightmares and bad thoughts. He has since he came home from the hospital. So, we really haven't changed too much in light of everything. > > We are now just educating ourselves, trying to recover and get back to the new normal. It's been hard, but after reading about some of what you all have been through, we are lucky. Lucky, but cautious. Since you never know what comes next, right? > > I've gotten a few books for him and for us, but have only read him Mr. Worry. The other children's books seem to deal a lot with compulsions, and since he does yet have those, we didn't want to plant any seeds. If that is even possible. I have a few reference books for us that have been helpful. > > Thanks for being such a supportive group. I've found your postings to be informative and very supportive of each other. Its good to know it's here if we need it. Thanks, > > mom to Ben age 7 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2006 Report Share Posted June 4, 2006 Welcome and I know educating ourselves is a good thing. Keep learning and reading and I hope things go well for you. Cheers Jaxx (New Zealand) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2006 Report Share Posted June 4, 2006 Welcome and I know educating ourselves is a good thing. Keep learning and reading and I hope things go well for you. Cheers Jaxx (New Zealand) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2006 Report Share Posted June 4, 2006 > > > I wouldn't worry about Ben gaining compulsions by reading or talking > about that. I used to think that as well, but with OCD having no > logic, our kids seem to shrug off others' symptoms. My daughter read > " Up and Down the Worry Hill " and thought the boys thoughts/compulsions > in the book were quite silly. She has heard of many kids' problems > from this site, since at times I share posts with her to see if she > had any ideas on how to help. She has much empathy for what someone > is going through, but cannot understand why so-and-so does this or > that vs. what she does. > > My daughter is this way as well. Can't understand anyone else that I tell her about on this list. She even laughs. But she CAN'T make the same logical leap to her own vomiting issues. It's so frustrating! But, she's never added a compulsion or worry because she read about it or heard about it. Dina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2006 Report Share Posted June 4, 2006 > > > I wouldn't worry about Ben gaining compulsions by reading or talking > about that. I used to think that as well, but with OCD having no > logic, our kids seem to shrug off others' symptoms. My daughter read > " Up and Down the Worry Hill " and thought the boys thoughts/compulsions > in the book were quite silly. She has heard of many kids' problems > from this site, since at times I share posts with her to see if she > had any ideas on how to help. She has much empathy for what someone > is going through, but cannot understand why so-and-so does this or > that vs. what she does. > > My daughter is this way as well. Can't understand anyone else that I tell her about on this list. She even laughs. But she CAN'T make the same logical leap to her own vomiting issues. It's so frustrating! But, she's never added a compulsion or worry because she read about it or heard about it. Dina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2006 Report Share Posted June 5, 2006 In a message dated 6/4/2006 2:23:52 P.M. Eastern Standard Time, lauraj2@... writes: He said that if he could hold on until Christmas, Santa would fix it. - Holy cow... that is the SWEETEST thing I've ever heard. What a sweetie-pie your little boy must be! You mentioned there are adults you know whom you just recently found out have OCD as well -- has you son had the opportunity to sit & talk to them about it? Little kids are so forthcoming & open - it's so healthy. I wish my daughter would open up & talk to other people about her OCD. We have managed to convince her to tell her grandma (my mom) about it, because she was just here visiting from CA for 2 weeks in May. I'm now going to work on her to tell her other grandparents (my in-laws) who will be staying with us for a week in July. We see them often because they are only 4 hours away in NC.... it would be REALLY helpful if we could be open with them about it. My father-in-law is a retired psychologist ( I think I've mentioned that on the board before....) but he has no OCD experience. Still...... I can't imagine he wouldn't be helpful in some ways. LT Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2006 Report Share Posted June 5, 2006 In a message dated 6/4/2006 2:23:52 P.M. Eastern Standard Time, lauraj2@... writes: He said that if he could hold on until Christmas, Santa would fix it. - Holy cow... that is the SWEETEST thing I've ever heard. What a sweetie-pie your little boy must be! You mentioned there are adults you know whom you just recently found out have OCD as well -- has you son had the opportunity to sit & talk to them about it? Little kids are so forthcoming & open - it's so healthy. I wish my daughter would open up & talk to other people about her OCD. We have managed to convince her to tell her grandma (my mom) about it, because she was just here visiting from CA for 2 weeks in May. I'm now going to work on her to tell her other grandparents (my in-laws) who will be staying with us for a week in July. We see them often because they are only 4 hours away in NC.... it would be REALLY helpful if we could be open with them about it. My father-in-law is a retired psychologist ( I think I've mentioned that on the board before....) but he has no OCD experience. Still...... I can't imagine he wouldn't be helpful in some ways. LT Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2006 Report Share Posted September 1, 2006 My understanding from my doctor at Children's when he tried Sami on the prednisone was that was the final test to verify that she had . If she responded and her fevers disappeared, then they were right to dianose her. If, not we needed to dig further. Maybe I'm wrong, but maybe you need to look further for another diagnosis. Trish " amy.leary " <raleary@...> wrote: HI, My 2 1/2 year old daughter was diagnosed with last month at almost a year of fevers. SO after 24 days her fevers came back and I started her on prednisone, 3 days later and she still having her fevers. I am so frusterated!!!! I am thinking of contacting an ears, nose and throat Doctor and have him evaluate her to see if he would take her tonsils out. Can someone please let me know if there child has had this procedure done and how many kids have stoped having the fevers since having their tonsils removed. Thank you, Amy --------------------------------- All-new - Fire up a more powerful email and get things done faster. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2006 Report Share Posted September 1, 2006 Trish, Thanks for that Information. I am going to call my pediatrician and ask him that question. Her tonsils are always red when she goes through these spells and her breath stinks!! I feel so bad for her she's always sick!! Thanks again, Amy > HI, > My 2 1/2 year old daughter was diagnosed with last month at > almost a year of fevers. SO after 24 days her fevers came back and I > started her on prednisone, 3 days later and she still having her > fevers. I am so frusterated!!!! I am thinking of contacting an ears, > nose and throat Doctor and have him evaluate her to see if he would > take her tonsils out. Can someone please let me know if there child > has had this procedure done and how many kids have stoped having the > fevers since having their tonsils removed. > > Thank you, > Amy > > > > > > > --------------------------------- > All-new - Fire up a more powerful email and get things done faster. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2006 Report Share Posted September 1, 2006 I know how frustrating it is, we all do! Each time she has a fever I just hope this is the last time, I can't wait for the day I'm right! Trish --------------------------------- All-new - Fire up a more powerful email and get things done faster. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2006 Report Share Posted September 5, 2006 I know I have 4 girls and the 3 older one's all have all caught something strange and ended up in the hospital. Just when I was thinking, at least I have one healthy one that hasn't caused me any problems...Sami comes down with this . So knock on wood!!! Trish --------------------------------- Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2006 Report Share Posted September 5, 2006 I am knocking for all of us!!!! AGHHHH.. > > > I know I have 4 girls and the 3 older one's all have all caught something strange and ended up in the hospital. Just when I was thinking, at least I have one healthy one that hasn't caused me any problems...Sami comes down with this . So knock on wood!!! > Trish > > > > > --------------------------------- > Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2007 Report Share Posted March 13, 2007 Where are you getting the pop jackets applied? Where do you live? How old is your son? What are his measurements? I spent a lot of time talking to our insurance company and was able to make great strides, too much to write about here. If you would like to chat, e-mail me privately with your number and the best time to call. Jen http://www.infantilescoliosis.org/madisons_story.htm coolesttwinkie wrote: Hi my name is Rochelle, we recently found out that our son has infantile scoliosis and chiari malformation. He will recieve his first POP jacket on April 18th. We have found out that the insurance is going to charge us a 500.00 dollar copay everytime he goes in for a new cast. We are trying to find some sort of help in covering his medical expenses. At this point we don't know where to start. Does anybody have any suggestions.Thanks. --------------------------------- Be a PS3 game guru. Get your game face on with the latest PS3 news and previews at Games. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2007 Report Share Posted March 13, 2007 Hi Rochelle, Where are you taking you taking your son for casting? Shriners Hospital is completely free! coolesttwinkie wrote: Hi my name is Rochelle, we recently found out that our son has infantile scoliosis and chiari malformation. He will recieve his first POP jacket on April 18th. We have found out that the insurance is going to charge us a 500.00 dollar copay everytime he goes in for a new cast. We are trying to find some sort of help in covering his medical expenses. At this point we don't know where to start. Does anybody have any suggestions.Thanks. --------------------------------- The fish are biting. Get more visitors on your site using Search Marketing. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2007 Report Share Posted March 13, 2007 Hi Rochelle, Here is a good site for chiari questions: www.asap.org. The doctor we see is on the board here. His name is arnold menezes and he is at the U of Iowa (we travel to see him as do many others.) He is top in his field. My daughter has not developed chiari as of yet but she has a very rare anomalie of the cervical spine making it unstable. Here is another group on devoted to parents who have children with chiari http://health./group/wacmaparents/ Sorry I couldn't answer the question about insurance. best. mary newly diagnosed Hi my name is Rochelle, we recently found out that our son has infantile scoliosis and chiari malformation. He will recieve his first POP jacket on April 18th. We have found out that the insurance is going to charge us a 500.00 dollar copay everytime he goes in for a new cast. We are trying to find some sort of help in covering his medical expenses. At this point we don't know where to start. Does anybody have any suggestions.Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2007 Report Share Posted March 13, 2007 Yikes. That is a lot of money!! Shriners in Salt Lake City and the one in Erie, PA do the casting for free. They also offer free housing and there are places that can help with transportation as well if that is an issue. Noelle (12-2-01) Ian (8-15-04) newly diagnosed Hi my name is Rochelle, we recently found out that our son has infantile scoliosis and chiari malformation. He will recieve his first POP jacket on April 18th. We have found out that the insurance is going to charge us a 500.00 dollar copay everytime he goes in for a new cast. We are trying to find some sort of help in covering his medical expenses. At this point we don't know where to start. Does anybody have any suggestions.Thanks. Quote Link to comment Share on other sites More sharing options...
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