Guest guest Posted February 7, 2003 Report Share Posted February 7, 2003 Let's try this again: Hi everyone! I am new to this group. I was just diagnosed with GD today. I have to decide this weekend if I am going to take the route of PTU or RAI as treatment. I was curious as to if any of you could tell me what you think was the best for you and also, side effects for each. i am very afraid of gaining weight and losing my hair. thanks for the help! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2003 Report Share Posted February 7, 2003 > Let's try this again: > > Hi everyone! > I am new to this group. I was just diagnosed with GD > today. I have to decide this weekend if I am going to > take the route of PTU or RAI as treatment. I was > curious as to if any of you could tell me what you > think was the best for you and also, side effects for > each. i am very afraid of gaining weight and losing my > hair. > thanks for the help! > Hi , glad you found our group. I did PTU and have done quite well. The first time around I was a complete mess by the time I was diagnosed, but decided to go the med route as I could always stop that if it didn't work, while RAI was something you couldn't change your mind once you did it. The other thing is PTU ot tap can give you time to really research all the treatment protocols so you can make a truely informed decision. I've been very happy with meds. One thing you might want to do is tip toe thru the archives, there is a wealth of info there. You can either try searching, or just start at the beginning and skim forward. We do have quite a bit of info in the files section. Jean C Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2003 Report Share Posted February 7, 2003 , Welcome to group. I'd suggest (it being quite late at night and my not having energy for a long post) that you go to the home page for group, and read the Letter to the Newly Diagnosed, the Symptom List, and the Top 20 Reasons NOT to do RAI that we've compiled (in the files section). They should start answering your questions. We used to suggest people peruse the archives, but they've gotten to be a daunting beast to approach, with 600 or more members and lots of posts. Bottom line: don't let the doctors push you into RAI, learn about the disease and its possible remedies, ask as many questions here as you have, GET COPIES of ALL your labs, make sure the doc monitors FT4 and not just TSH, run your dosage of ATD's by us (see 's post just now; her doc was going to turn her into a hypO basket case if she didn't have a bit of help from her friends...) anyway, welcome and good night Terry I've been on Tapazole for a number of years, no bad side effects. Now on 7.5 mg, split into 3 doses a day. > From: bjcraw@... > Reply-To: graves_support > Date: Fri, 07 Feb 2003 22:47:12 -0800 > To: graves_support > Subject: Re: Fwd: New here! > > Let's try this again: > > Hi everyone! > I am new to this group. I was just diagnosed with GD > today. I have to decide this weekend if I am going to > take the route of PTU or RAI as treatment. I was > curious as to if any of you could tell me what you > think was the best for you and also, side effects for > each. i am very afraid of gaining weight and losing my > hair. > thanks for the help! > > > > > > > > ------------------------------------- > The Graves' list is intended for informational purposes only and is not > intended to replace expert medical care. > Please consult your doctor before changing or trying new treatments. > ---------------------------------------- > DISCLAIMER > > Advertisments placed on this yahoo groups list do not have the endorsement of > the listowner. I have no input as to what ads are attached to emails. > ------------------------------------------------------------------------------ > -------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2003 Report Share Posted February 7, 2003 , Welcome to group. I'd suggest (it being quite late at night and my not having energy for a long post) that you go to the home page for group, and read the Letter to the Newly Diagnosed, the Symptom List, and the Top 20 Reasons NOT to do RAI that we've compiled (in the files section). They should start answering your questions. We used to suggest people peruse the archives, but they've gotten to be a daunting beast to approach, with 600 or more members and lots of posts. Bottom line: don't let the doctors push you into RAI, learn about the disease and its possible remedies, ask as many questions here as you have, GET COPIES of ALL your labs, make sure the doc monitors FT4 and not just TSH, run your dosage of ATD's by us (see 's post just now; her doc was going to turn her into a hypO basket case if she didn't have a bit of help from her friends...) anyway, welcome and good night Terry I've been on Tapazole for a number of years, no bad side effects. Now on 7.5 mg, split into 3 doses a day. > From: bjcraw@... > Reply-To: graves_support > Date: Fri, 07 Feb 2003 22:47:12 -0800 > To: graves_support > Subject: Re: Fwd: New here! > > Let's try this again: > > Hi everyone! > I am new to this group. I was just diagnosed with GD > today. I have to decide this weekend if I am going to > take the route of PTU or RAI as treatment. I was > curious as to if any of you could tell me what you > think was the best for you and also, side effects for > each. i am very afraid of gaining weight and losing my > hair. > thanks for the help! > > > > > > > > ------------------------------------- > The Graves' list is intended for informational purposes only and is not > intended to replace expert medical care. > Please consult your doctor before changing or trying new treatments. > ---------------------------------------- > DISCLAIMER > > Advertisments placed on this yahoo groups list do not have the endorsement of > the listowner. I have no input as to what ads are attached to emails. > ------------------------------------------------------------------------------ > -------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2003 Report Share Posted February 7, 2003 , Welcome to group. I'd suggest (it being quite late at night and my not having energy for a long post) that you go to the home page for group, and read the Letter to the Newly Diagnosed, the Symptom List, and the Top 20 Reasons NOT to do RAI that we've compiled (in the files section). They should start answering your questions. We used to suggest people peruse the archives, but they've gotten to be a daunting beast to approach, with 600 or more members and lots of posts. Bottom line: don't let the doctors push you into RAI, learn about the disease and its possible remedies, ask as many questions here as you have, GET COPIES of ALL your labs, make sure the doc monitors FT4 and not just TSH, run your dosage of ATD's by us (see 's post just now; her doc was going to turn her into a hypO basket case if she didn't have a bit of help from her friends...) anyway, welcome and good night Terry I've been on Tapazole for a number of years, no bad side effects. Now on 7.5 mg, split into 3 doses a day. > From: bjcraw@... > Reply-To: graves_support > Date: Fri, 07 Feb 2003 22:47:12 -0800 > To: graves_support > Subject: Re: Fwd: New here! > > Let's try this again: > > Hi everyone! > I am new to this group. I was just diagnosed with GD > today. I have to decide this weekend if I am going to > take the route of PTU or RAI as treatment. I was > curious as to if any of you could tell me what you > think was the best for you and also, side effects for > each. i am very afraid of gaining weight and losing my > hair. > thanks for the help! > > > > > > > > ------------------------------------- > The Graves' list is intended for informational purposes only and is not > intended to replace expert medical care. > Please consult your doctor before changing or trying new treatments. > ---------------------------------------- > DISCLAIMER > > Advertisments placed on this yahoo groups list do not have the endorsement of > the listowner. I have no input as to what ads are attached to emails. > ------------------------------------------------------------------------------ > -------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2003 Report Share Posted February 8, 2003 , Please look at all the past posts regarding RAI. Please choose the ATD's instead. Give them a chance before resorting to RAI. That is an option I told my Doctor " NO! " , as well as Surgery. I have been on Meds for over 2 months, and I feel better and my levels are starting to get better. Please Do Not Do RAI.. Take Care Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2003 Report Share Posted February 8, 2003 , Please look at all the past posts regarding RAI. Please choose the ATD's instead. Give them a chance before resorting to RAI. That is an option I told my Doctor " NO! " , as well as Surgery. I have been on Meds for over 2 months, and I feel better and my levels are starting to get better. Please Do Not Do RAI.. Take Care Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2003 Report Share Posted February 8, 2003 , Please look at all the past posts regarding RAI. Please choose the ATD's instead. Give them a chance before resorting to RAI. That is an option I told my Doctor " NO! " , as well as Surgery. I have been on Meds for over 2 months, and I feel better and my levels are starting to get better. Please Do Not Do RAI.. Take Care Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2003 Report Share Posted February 8, 2003 I had RAI 2 years ago. I have gained 30 lbs. I do wish I had known that I could have been on antithyroid drugs first, regained some of my health back, and then become informed on what was best for me. I was to ill to make that decision before. I am only now becoming stable after RAI, firing two endocrinologists, and finding this group that really helps a person understand what is happening with our bodies and how to become healthy again. I wish I would of heard the wise wisdom of these people before I chose RAI, at least to have become somewhat stable before making a decison that I cannot ever change. Jen M. On Fri, 07 Feb 2003 22:47:12 -0800 bjcraw@... wrote: >Let's try this again: > >Hi everyone! >I am new to this group. I was just diagnosed with GD >today. I have to decide this weekend if I am going to >take the route of PTU or RAI as treatment. I was >curious as to if any of you could tell me what you >think was the best for you and also, side effects for >each. i am very afraid of gaining weight and losing my >hair. >thanks for the help! > > > > > > > >------------------------------------- >The Graves' list is intended for informational purposes >only and is not intended to replace expert medical care. >Please consult your doctor before changing or trying new >treatments. >---------------------------------------- > DISCLAIMER > >Advertisments placed on this yahoo groups list do not >have the endorsement of >the listowner. I have no input as to what ads are >attached to emails. >-------------------------------------------------------------------------------\ ------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2003 Report Share Posted February 8, 2003 I had RAI 2 years ago. I have gained 30 lbs. I do wish I had known that I could have been on antithyroid drugs first, regained some of my health back, and then become informed on what was best for me. I was to ill to make that decision before. I am only now becoming stable after RAI, firing two endocrinologists, and finding this group that really helps a person understand what is happening with our bodies and how to become healthy again. I wish I would of heard the wise wisdom of these people before I chose RAI, at least to have become somewhat stable before making a decison that I cannot ever change. Jen M. On Fri, 07 Feb 2003 22:47:12 -0800 bjcraw@... wrote: >Let's try this again: > >Hi everyone! >I am new to this group. I was just diagnosed with GD >today. I have to decide this weekend if I am going to >take the route of PTU or RAI as treatment. I was >curious as to if any of you could tell me what you >think was the best for you and also, side effects for >each. i am very afraid of gaining weight and losing my >hair. >thanks for the help! > > > > > > > >------------------------------------- >The Graves' list is intended for informational purposes >only and is not intended to replace expert medical care. >Please consult your doctor before changing or trying new >treatments. >---------------------------------------- > DISCLAIMER > >Advertisments placed on this yahoo groups list do not >have the endorsement of >the listowner. I have no input as to what ads are >attached to emails. >-------------------------------------------------------------------------------\ ------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2003 Report Share Posted February 8, 2003 I had RAI 2 years ago. I have gained 30 lbs. I do wish I had known that I could have been on antithyroid drugs first, regained some of my health back, and then become informed on what was best for me. I was to ill to make that decision before. I am only now becoming stable after RAI, firing two endocrinologists, and finding this group that really helps a person understand what is happening with our bodies and how to become healthy again. I wish I would of heard the wise wisdom of these people before I chose RAI, at least to have become somewhat stable before making a decison that I cannot ever change. Jen M. On Fri, 07 Feb 2003 22:47:12 -0800 bjcraw@... wrote: >Let's try this again: > >Hi everyone! >I am new to this group. I was just diagnosed with GD >today. I have to decide this weekend if I am going to >take the route of PTU or RAI as treatment. I was >curious as to if any of you could tell me what you >think was the best for you and also, side effects for >each. i am very afraid of gaining weight and losing my >hair. >thanks for the help! > > > > > > > >------------------------------------- >The Graves' list is intended for informational purposes >only and is not intended to replace expert medical care. >Please consult your doctor before changing or trying new >treatments. >---------------------------------------- > DISCLAIMER > >Advertisments placed on this yahoo groups list do not >have the endorsement of >the listowner. I have no input as to what ads are >attached to emails. >-------------------------------------------------------------------------------\ ------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2003 Report Share Posted February 8, 2003 Hi , I just completed the RAI uptake scan on Thursday & Friday...I met w/ my endocrinologist for the first time and absolutely loved him...He is actually a lot nicer & easier to talk to than my family doctor & my daughters pediatrician...He explained both the RAI and PTU vs. Tapeloze (spelling?). We talked about my husband and I are planning on having another child in a year or so, but not until my thyroid is under control. The doctor told me he would first recommend RAI, but if I wasn't willing to do that first or since i am planning on getting pregnant in a year that Tapezole would be my best choice. I would have to inform him ASAP when I do get pregnant so that I can switch to the PTU. He said that once I am done having children & nursing that it would be up to me to do the RAI then.. He explained that Tapezole is stronger than the PTU. The PTU will not pass as much through the placenta then. Also I would be taking more pills w/ the PTU, so would be a lot easier on me to go w/ the Tap. Why does your doctor want to put you on PTU? Was it your choice? I'm just curious about finding out more on the meds. I have had no problems after doing the uptake scan....I would appreciate any help about Tapeloze vs. PTU.....I know ppl are always talking about it, but it is always a little confusing!! Thanks!!! ~Amber~ Jen M. >Hi everyone! >I am new to this group. I was just diagnosed with GD >today. I have to decide this weekend if I am going to >take the route of PTU or RAI as treatment. I was >curious as to if any of you could tell me what you >think was the best for you and also, side effects for >each. i am very afraid of gaining weight and losing my >hair. >thanks for the help! > > > > > > > >------------------------------------- >The Graves' list is intended for informational purposes >only and is not intended to replace expert medical care. >Please consult your doctor before changing or trying new >treatments. >---------------------------------------- > DISCLAIMER > >Advertisments placed on this yahoo groups list do not >have the endorsement of >the listowner. I have no input as to what ads are >attached to emails. >-------------------------------------------------------------------------------\ ------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2003 Report Share Posted February 8, 2003 Hi , With ATDs you end up achieving remission. This happens when your immune system stops producing the antibodies that cause hyperthryoidism in GD. With RAI, you destroy your thyroid gland to reduce thyroid hormone production. This leads to lifelong hypothyroidism. Studies show that treatment for hyperthyroidism that causes permanent hypothyroidism causes weight gain, with an average weight gain of 30 lbs. Taking extra thyroid hormone when you're hypothyroid increases your appetite but doesn't help with weight losss. With ATDs you may gain a few pounds but you're able to lose them when you're on a maintenance dose (low ATD dose after 6-8 weeks) or when you go into remission. And you end up with normal thyroid hormone function. Not everyone on ATDs gains weight. Some people lose weight. Best to you, elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2003 Report Share Posted February 8, 2003 Hi , With ATDs you end up achieving remission. This happens when your immune system stops producing the antibodies that cause hyperthryoidism in GD. With RAI, you destroy your thyroid gland to reduce thyroid hormone production. This leads to lifelong hypothyroidism. Studies show that treatment for hyperthyroidism that causes permanent hypothyroidism causes weight gain, with an average weight gain of 30 lbs. Taking extra thyroid hormone when you're hypothyroid increases your appetite but doesn't help with weight losss. With ATDs you may gain a few pounds but you're able to lose them when you're on a maintenance dose (low ATD dose after 6-8 weeks) or when you go into remission. And you end up with normal thyroid hormone function. Not everyone on ATDs gains weight. Some people lose weight. Best to you, elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2003 Report Share Posted February 8, 2003 -----BEGIN PGP SIGNED MESSAGE----- Hash: SHA1 bjcraw@... wrote: > > I am new to this group. I was just diagnosed with GD > today. I have to decide this weekend if I am going to > take the route of PTU or RAI as treatment. In the UK it would be unusual to use treatments that permanently damage or remove parts of the thyroid until the antithyroid drug route has been tried. A significant proportion of patients get permanent, or long lasting remission from the drugs. Surgery also produces good results with Graves', it sounds drastic, but the safety data suggests it is safer than RAI. So while they may make RAI sound like it is " just swallowing a pill " remember it is more dangerous than having a four inch incision across the front of your neck. Either way it isn't an either/or decision, start with the drugs, make sure they are properly managed (you'd be surprised how bad some doctors are at this), see how you feel in 18 months. I had about 4 years on antithyroid drugs before having surgery. You could just as well decide to have RAI in four years time as now. -----BEGIN PGP SIGNATURE----- Comment: Using GnuPG with Mozilla - http://enigmail.mozdev.org iD8DBQE+RaWvGFXfHI9FVgYRAnG/AJwNhe4JhqcMlgzftZ/7pN7rrsDSuQCfatMn 6VR2JncAlgt/mbipHK3IH1U= =k8f3 -----END PGP SIGNATURE----- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2003 Report Share Posted February 10, 2003 , I've been on methimazole for 18 months now, and am pretty certain I'm in remission or close to it. I'm currently only taking 2.5 mg. every other day, and am still feeling hypo on that dose--should be a good sign. My doc told me that I should do RAI, and that it was highly unlikely that I'd ever reach remission. If I had listened to him, I would be without a functioning thyroid today and battling all that goes with that-- trying to get the supplemental hormone correct, weight gain, hair loss, muscle and joint pain, etc. Instead, I'm looking at remission. I may relapse, but if I do, I'll take the ATDs again. My opinion is that everyone should try ATDs first. Then, if that doesn't work, I'd go for surgery, then RAI as a last resort. I truly believe that despite what the doctors tell you, that most people CAN acheive remission on ATDs. It's certainly worth a try. Otherwise you're looking at living the rest of your life without a very vital gland that controls just about every aspect of our bodies and minds. Chemists, no matter how hard they try, cannot duplicate everything the thyroid does. You'll have to settle for the best that a replacement hormone can give you. Personally, that scares the heck out of me. Holly Dx. 8/2001; currently on 2.5 mg. MMI every other day Re: Fwd: New here! , Please look at all the past posts regarding RAI. Please choose the ATD's instead. Give them a chance before resorting to RAI. That is an option I told my Doctor " NO! " , as well as Surgery. I have been on Meds for over 2 months, and I feel better and my levels are starting to get better. Please Do Not Do RAI.. Take Care Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2004 Report Share Posted December 16, 2004 Hi everyone! I am a mom of two great little ones. My daughter Madison is 3 1/2 and our little guy, JOhn is 14 months. was born with severe bilateral clubfeet. He was casted within 2 hours of birth and was casted continuously until 8 months. He now wears orthopaedic shoes and attends physiotherapy. We are having some setbacks with . His feet are both really inverting (left more than the right). He does not walk and is below the 5th percentile for milestones. He is also having trouble with muscles in his legs that he just is not using. We are now being referred to Toronto Hospital for Sick kids as they have a clubfoot clinic there. I hope I am welcome to join your group! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2004 Report Share Posted December 17, 2004 Hi , Welcome to the group! My son was in casts for his first year. And we made the mistake of doing surgery before contacting dr. ponseti. so let me congratulate you on moving in the right direction to get help! You've come to the right spot. There are several ways to contact dr. ponseti. One is through his secretary Joyce Roller. She is wonderful, but works part time. She is there i believe it's mondays and fridays. Her email is joyce-roller@.... Dr. Ponseti's telephone number is: or . I seem to have better luck with the second number. He is at work MWF mornings with patients and most of those afternoons. If you call, leave a message and he will call you back. I have called him lately and always gotten a hold of him. He is a phenomenal doctor and will go out of his way to help you. He's here, he's got the experience and he's got the passion to help our kids. Like ee said, he is truly a vessel of the Lord. you will not regret contacting him. Lord bless you in your decisions! 10-09-03 severe atypical bl cf > HI again, > How can I contact dr. Ponseti? I would love his input and advice. Have you received advice from him? > > Thanks, > > Re: Re: New Here! > > > , > Whatever you do, DON'T do surgery. 's feet can be fixed without > surgery. You need to find a Ponseti certified doc ASAP! There are others > from this site who live in Canada and can hopefully guide you to the right > doctor. You can also send pictures of 's feet directly to Dr. Ponseti > himself and get his opinion. Afterall, he is the master! If you have > more questions, please ask and we will help you. > > Good luck and let us know about the progress. > > > > > Shook > Retail Operations Manager/Baking Instructor > Vie de France Yamazaki, Inc. > 2070 Chain Bridge Rd. Suite 500 > Vienna, VA 22182 > x374 > x374 > fax > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2004 Report Share Posted December 17, 2004 , Go to the Ponseti website and read, read, read. It will give you lots of info. www.vh.org/pediatric/patient/orthopaedics/clubfeet/index.html Dr. Ponseti's email address is ignacio-ponseti@... He responds to everyones emails. I was concerned with relapsing at 5 months, so I emailed him to get his opinion and he responded very quickly. It turned out she was relapsing and had a bogus doctor. So I found a new doctor and we started treatment over at 5 1/2 months. Even at 14 months, it isn't too late to start with Ponseti, but you must react quickly, time is ticking! There are so many of us on this board that started with bad doctors and have had horrible experiences, but have found a better doctor or Ponseti himself and have been on a positive road ever since. It isn't too late and it doesn't hurt to at least try before you subject your son to surgery and a lifetime a pain in his feet. Shook Retail Operations Manager/Baking Instructor Vie de France Yamazaki, Inc. 2070 Chain Bridge Rd. Suite 500 Vienna, VA 22182 x374 x374 fax Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2004 Report Share Posted December 17, 2004 Oh , I agree with everyone else. There are people on here from Canada who can direct you to a Ponseti Certified Doctor. Please go! 8 months of continuous (even intermittent) casting is crazy! That poor kid! It sounds like they were experimenting with these castings! Get him away from them ASAP. Did they at least tell you if the muscle tone/strength he lost from not using his legs for the first 8 months of his life ever be fully regained? Mommy to (12-17-98) and Christian (1-30-04) LCF - DBB 23/7 _____ From: Sent: Friday, December 17, 2004 8:16 AM To: nosurgery4clubfoot Subject: Re: New Here! Yes it was continuus casting for 8 months... unbelievable!! Whatwas your experience?? New Here! Hi everyone! I am a mom of two great little ones. My daughter Madison is 3 1/2 and our little guy, JOhn is 14 months. was born with severe bilateral clubfeet. He was casted within 2 hours of birth and was casted continuously until 8 months. He now wears orthopaedic shoes and attends physiotherapy. We are having some setbacks with . His feet are both really inverting (left more than the right). He does not walk and is below the 5th percentile for milestones. He is also having trouble with muscles in his legs that he just is not using. We are now being referred to Toronto Hospital for Sick kids as they have a clubfoot clinic there. I hope I am welcome to join your group! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2004 Report Share Posted December 17, 2004 Thank you, thank you! That's all I can say! I talked to his secretary and over the phone she determined he has atypical clubfeet not just clubfeet. He is going to call me today. I am so thankful for the moms on this board! The only problem is since he 14 months old there aren't many dr.'s that can treat his feet with his method. So we will have travel across country or to the states. Thanks and I will post later, Re: Re: New Here! > > > , > Whatever you do, DON'T do surgery. 's feet can be fixed without > surgery. You need to find a Ponseti certified doc ASAP! There are others > from this site who live in Canada and can hopefully guide you to the right > doctor. You can also send pictures of 's feet directly to Dr. Ponseti > himself and get his opinion. Afterall, he is the master! If you have > more questions, please ask and we will help you. > > Good luck and let us know about the progress. > > > > > Shook > Retail Operations Manager/Baking Instructor > Vie de France Yamazaki, Inc. > 2070 Chain Bridge Rd. Suite 500 > Vienna, VA 22182 > x374 > x374 > fax > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2004 Report Share Posted December 17, 2004 I think that you will see that seeing Dr. Ponseti is worth the trip! I am 37 and was treated with his method when I was a baby. So were my 2 girls. I have never met Dr. Ponseti, but have spoken to him on the phone. He is such a sweet, gentle caring man, who works wonders with our babies! Keep us posted! www.pediatric-orthopedic-foundation.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2004 Report Share Posted December 17, 2004 When we first learned that we were going back in casts I posted something that just keeps biting me in the butt when I lose my focus. That is, " Trust in the one who created him. " When I was at my lowest in all this, I heard those words clear as a bell in my head. " Trust me, I created him, I know what I am doing. " So that has become my motto. when you take your focus off the One who created him and onto all the problems and roadblocks, it's easy to get swallowed up and spit back out. But when you keep your eyes on Jesus, you realize you are not handling this alone and He cares about us so very much. He had to keep His eyes on the prize that was set before Him, and so do we. It has been a great lesson in trust. And a great reminder that " In ALL THINGS GIVE THANKS! " Wow, what a hard one to do. But day by day I am working on it. No matter how discouraged or how bleak things get, IN ALL THINGS GIVE THANKS! I just can't wait to see God's plan for !! It's gotta be a big one! (Course, when does God ever do anything small? hehe!) P.s. my dad's going with me this time. hubby can't take time off anymore and mom, well, the drive home from last trip was just a little too much for her with the snowstorms and whiteouts. So...I got handed down to dad! LOL Aren't dads great too? heheh > > > Oh , > > > > > > > > > > > > I agree with everyone else. There are people on here from Canada > > who can > > > direct you to a Ponseti Certified Doctor. Please go! 8 months of > > > continuous (even intermittent) casting is crazy! That poor kid! It > > sounds > > > like they were experimenting with these castings! Get him away from > > them > > > ASAP. Did they at least tell you if the muscle tone/strength he > > lost from > > > not using his legs for the first 8 months of his life ever be fully > > > regained? > > > > > > > > > > > > > > > > > > Mommy to (12-17-98) and > > > > > > Christian (1-30-04) LCF - DBB 23/7 > > > > > > _____ > > > > > > From: [mailto:jmartin017@s...] > > > Sent: Friday, December 17, 2004 8:16 AM > > > To: nosurgery4clubfoot > > > Subject: Re: New Here! > > > > > > > > > > > > Yes it was continuus casting for 8 months... unbelievable!! Whatwas > > your > > > experience?? > > > > > > > > > New Here! > > > > > > > > > > > > > > > > > > Hi everyone! > > > > > > I am a mom of two great little ones. My daughter Madison is 3 1/2 > > > and our little guy, JOhn is 14 months. was born with severe > > > bilateral clubfeet. He was casted within 2 hours of birth and was > > > casted continuously until 8 months. He now wears orthopaedic shoes > > > and attends physiotherapy. > > > We are having some setbacks with . His feet are both really > > > inverting (left more than the right). He does not walk and is below > > > the 5th percentile for milestones. He is also having trouble with > > > muscles in his legs that he just is not using. > > > We are now being referred to Toronto Hospital for Sick kids as they > > > have a clubfoot clinic there. > > > > > > I hope I am welcome to join your group! > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2004 Report Share Posted December 17, 2004 AMEN! You just blessed me today. And yes, Dads are great!!! I love mine dearly. When he was a Pastor I used to hear all the time how lucky I am to have the parents I have and they were right. I am sooo blessed. Mom and I will find you this week. I'm due at 8:30 to 'soak'. Surely we can meet at the sink! LOL Chris New Here! > > > > > > > > > > > > > > > > > > Hi everyone! > > > > > > I am a mom of two great little ones. My daughter Madison is 3 1/2 > > > and our little guy, JOhn is 14 months. was born with severe > > > bilateral clubfeet. He was casted within 2 hours of birth and was > > > casted continuously until 8 months. He now wears orthopaedic shoes > > > and attends physiotherapy. > > > We are having some setbacks with . His feet are both really > > > inverting (left more than the right). He does not walk and is below > > > the 5th percentile for milestones. He is also having trouble with > > > muscles in his legs that he just is not using. > > > We are now being referred to Toronto Hospital for Sick kids as they > > > have a clubfoot clinic there. > > > > > > I hope I am welcome to join your group! > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2004 Report Share Posted December 17, 2004 wow! how cool is that?? What a legacy this man has! How the Lord has used him. Awesome! > I think that you will see that seeing Dr. Ponseti is worth the trip! I am 37 and was treated with his method when I was a baby. So were my 2 girls. I have never met Dr. Ponseti, but have spoken to him on the phone. He is such a sweet, gentle caring man, who works wonders with our babies! Keep us posted! > > > www.pediatric-orthopedic-foundation.org Quote Link to comment Share on other sites More sharing options...
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