Guest guest Posted May 31, 2001 Report Share Posted May 31, 2001 Thank you for your comments Beth. Thankfully my therapist thinks like you - and I am working with him and my group therapy to try and get through my feelings. I wish I had a local group for young people that have medical conditons - but I haven't been able to find one. The current group I am in is made up of folks my parents age and mostly going through divorces - so its not the best suited group for me - but they are wonderful and helpful for me. I will check out these books you mention. >From: EAYSRM@... Reply- To: > Subject: Re: Emotions Date: Thu, 31 May >2001 10:55:17 EDT > >Hi folks, > >I am a Licensed Clinical Social Worker who was implanted at 39 with an AICD >due to V-Tach Torsades type. I am 42 now and have had time to look at my >life and make decisions to do what I think is best and what I really want >to do. That was to go into private practice. Now I am so busy, I cannot get >to the Tuesday AM meeting or the one on Thurs PM. My thoughts are always >with my zapper buddies. > >When I first was implanted, I experienced all the emotions that we all do >when faced with grief and loss. At first I was frightened to go to sleep, >then angry I couldn't drive or do the things I used to be able to do, etc. >I am three years post dropping over and I have done things and experienced >life more abundantly as every day has been a gift. (I still experience up >and down emotions and not everything is perfect). Yet, I have and the >opportunity for another chance. > >To the point: Everyone needs to express their emotions. We will all go >through many stages of grief and loss. It is normal to be fearful, happy, >angry and all of the above separately or together. Do not feel bad about >expressing yourself and it is more than: AICD alive with it and dead >without it. By discounting other zapmates feelings, we lose the essence of >why we are a part of this , the Zapper, or any other support group. > >There are many books available for us: > >Two are: Heartmates by Levin & > >Necessary Losses (Sorry, I cannot remember the Author's name and the book >is not close at hand). > >You will feel much differently as time really does heal. > >Take care! > >Beth York (Bloomington, Indiana) > > > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2001 Report Share Posted May 31, 2001 I agree and disagree. I lost a promised introduction in the real world in the last few years ( I know boo hoo LOL). I had my first fainting spell at age 11 - my brother was doing his best to scare me by trying to drown me in a lake(boy was he in for a surprise!), and the second (that I can recall)at age 14. It just so happens that that was the year that I developed seizures - heart related or not is unknown. They were very infrequent until I was in college my first year - then they became so bad that I had to drop out. Then the ICD came 2 years later. Instead of working as a High School Music Teacher with a double major in Clarinet/Piano - I am a secretary making $11 an hour (which in MA isn't great), which I don't enjoy. I am going back to college (nights), but only because my work has tuition reimbursement, and for something completely unrelated (computer programming), but will yield good pay - as that is my only focus in life now. I don't appreciate being told that my feelings are not valid - they are. For as long as they are around I will only look at this particular situation with pain and disappointment. If you were to meet me in person I am a very upbeat, pleasant person - I just hide things very well. I'm not depressed (according to some doctor), just dealing with this situation as naturally as possible. I appreciate everyones help, really I do. I enjoy this group and it really has been helping me through this. As a matter of fact I bring alot of my experiences here to my group therapy and private therapy sessions, and many of them agree with you guys. >From: AMAmail@... >Reply- > >Subject: Re: Emotions >Date: Thu, 31 May 2001 16:30:08 -0000 > > > > Do not feel bad about > > expressing yourself and it is more than: AICD alive with it and >dead >without it. By discounting other zapmates feelings, we lose the >essence of why we are a part of this , the Zapper, or any >other >support group. > > >Actualy, it is AICD alive with it and dead without it. Its great to >talk about how bad, how painful, and mainly, how new the situation >is. >All of us have been through the adjustment, the loses and the further >problems. Its natural to object, to complain and feel sorry. > >Im not some fool who woke with an ICD and said " Isnt this wonderful " , > >In fact, I am the poor sap who has lost almost everything. Not only >health, but income, physical, mental, neuro, dreams, future amd past >(I have 25 years of amnesia:) > >I spent two years in the depression from heart damage, AICD >adjustment, Loss of self and brain damage and rehab. I have seen >some >dark sides. The grieving for what was, is normal and healthy. But >you cannot let it get away from you or doom you to a life of >unhappieness. I know that is a tall order, but it is also a deep pit. > >I believe that most doctors are not trained to realy tell the story >about AICDs and what they mean. Sure the basic is AICD alive with it >and dead without it, but there is so much more to fear than death. >Rarely do they express the fact that a huge part of heart attack and >arrythmia is a fried brain. SOmetimes worse than dieing, I have a >brain injured friend who chose last week that it was worse than >dieing, and she ended it with a gun. > >The AICD, protects you from the heart stopage and the anoxic brain >damage and coma. It reduces the risk of arrythmia induced clots and >stroke. It helps to prevent things from becoming worse. they rarely >tell you that part. > >There is nothing wrong with saying the AICD is a real pain (no pun) >But you really have got to look at what life would be without it. >Dead? Crippled, Vegatable, Blind. These things do some stuff, though >not in the plesantest manner. > >But the risk of depression taking over. Wow, easily done, destroy a >life. I dont believe it is the job of those whohave lived with the >darkness to encoourage others to walk that same path. I will hold >your hand, wipe your tears and put my arms around you, but I will >also point to the horizon under those clouds and say " It gets better >over >there " > >Keep on those doctors for what is the next step. Get another >opinion, >Puut the same effort into getting youself fixed as you do to get your >car fixed. First shop cant do it, go to the next. > >Steve ................. > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2001 Report Share Posted May 31, 2001 > I agree and disagree. > I don't appreciate being told that my feelings are not valid - they are. > For as long as they are around I will only look at this particular situation > with pain and disappointment. Now that is very normal and what all people do. You cannot help but grieve for what is lost and wonder what may have been. But no matter how hard it may be, you are stuck moving on. Ya just cant sit there, luckily most people dont seem to. What surprizes me though, are those that have such difficuly accepting the AICD. I think that is what I have been trying to say. Yes, its inconvient, yes, its uncomfortable, yes, we would rather not need it. But wow, what a gift! 20 years ago, this would not be happening, we would not be talking, we would no longer be here. What magic!! We can live and see tomorrow. Wow! Sure, there is a price to pay, zaps, the unknown, medicines, tests ...... But Wow! ...... We will be here tomorrow. All because of this " Cool Tool " they stuck in us. It is so sad to watch someone paint themselves into a small corner of life because of the inconviences caused by the unit. Especially when without the unit, there would be no option. Its a second, third, tenth chance at life ....... WOW! Dont curse it, Prase it! Cause its way to cool. One of my doctors said it best ... most people walk around being timebombs, waiting to go off. But those of us who have survived and gotten the AICD, we are finaly safe. We will be followed, tuned up, charged up and hopefully around for the next round of improvements (last year I got a shiney new one:) Life aint what it was,........ but it sure is tasty anyway! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2001 Report Share Posted May 31, 2001 hi jennifer, try jons place in your browser. it is a chf site but has a lot of good info and some younger people in the postings. it also has links to other sites you can check. bob in pa -- Re: Emotions Date: Thu, 31 May >2001 10:55:17 EDT>>Hi folks,>>I am a Licensed Clinical Social Worker who was implanted at 39 with an AICD >due to V-Tach Torsades type. I am 42 now and have had time to look at my >life and make decisions to do what I think is best and what I really want >to do. That was to go into private practice. Now I am so busy, I cannot get >to the Tuesday AM meeting or the one on Thurs PM. My thoughts are always >with my zapper buddies.>>When I first was implanted, I experienced all the emotions that we all do >when faced with grief and loss. At first I was frightened to go to sleep, >then angry I couldn't drive or do the things I used to be able to do, etc. >I am three years post dropping over and I have done things and experienced >life more abundantly as every day has been a gift. (I still experience up >and down emotions and not everything is perfect). Yet, I have and the >opportunity for another chance.>>To the point: Everyone needs to express their emotions. We will all go >through many stages of grief and loss. It is normal to be fearful, happy, >angry and all of the above separately or together. Do not feel bad about >expressing yourself and it is more than: AICD alive with it and dead >without it. By discounting other zapmates feelings, we lose the essence of >why we are a part of this , the Zapper, or any other support group.>>There are many books available for us:>>Two are: Heartmates by Levin & >>Necessary Losses (Sorry, I cannot remember the Author's name and the book >is not close at hand).>>You will feel much differently as time really does heal.>>Take care!>>Beth York (Bloomington, Indiana)>>>_________________________________________________________________Get your FREE download of MSN Explorer at http://explorer.msn.comPlease visit the Zapper homepage athttp://www.ZapLife.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2001 Report Share Posted May 31, 2001 hi everybody, that statement about 20 years ago brought back painful memory. my dad at age 70 and just married five months and having the time of his life boarded a bus for a day trip to atlantic city. he sat down in his seat on a sunday morning and was dead. no pain, no fuss. the driver of the bus drove to ta hospital two blocks away and it was to late. he did suffer from chf as i do now. i cant help but beleive he would have had a few more years if he had an icd. as much as i hate mine im glad to have it. until the last fre years i thought i was immortal. boy, did i learn fast. and to you jennifer, that is what this club is for. vent yoiur feelings any time. we will all stand by your side. take your lemons in life and make lemonade........... bob in pa -- Re: Emotions > I agree and disagree.> I don't appreciate being told that my feelings are not valid - they are. > For as long as they are around I will only look at this particular situation > with pain and disappointment. Now that is very normal and what all people do. You cannot help but grieve for what is lost and wonder what may have been. But no matter how hard it may be, you are stuck moving on. Ya just cant sit there, luckily most people dont seem to.What surprizes me though, are those that have such difficulyaccepting the AICD. I think that is what I have been trying to say. Yes, its inconvient, yes, its uncomfortable, yes, we would rather not need it.But wow, what a gift! 20 years ago, this would not be happening, we would not be talking, we would no longer be here. What magic!! Wecan live and see tomorrow. Wow! Sure, there is a price to pay, zaps,the unknown, medicines, tests ...... But Wow! ...... We will be here tomorrow. All because of this "Cool Tool" they stuck in us.It is so sad to watch someone paint themselves into a small corner of life because of the inconviences caused by the unit. Especially when without the unit, there would be no option. Its a second, third, tenth chance at life ....... WOW! Dont curse it, Prase it! Causeits way to cool.One of my doctors said it best ... most people walk around being timebombs, waiting to go off. But those of us who have survived and gotten the AICD, we are finaly safe. We will be followed, tuned up, charged up and hopefully around for the next round of improvements (last year I got a shiney new one:)Life aint what it was,........ but it sure is tasty anyway!Please visit the Zapper homepage athttp://www.ZapLife.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2001 Report Share Posted May 31, 2001 www.jonsplace.org > > hi jennifer, > try jons place in your browser. it is a chf site but has a lot of good info and some younger people in the postings. it also has links to other sites you can check. > > bob in pa > -------Original Message------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2001 Report Share Posted May 31, 2001 Steve, Well said! Ruth in PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2002 Report Share Posted November 15, 2002 > It's been eight months since my surgery and I am just now starting to fee some of the emotional effects > R., Portland - I looked at your photos. You look fantastic - but you were also very pretty when you were banded. The emotional part of this is much harder to deal with than the physical part of losing weight. I was thin as a younger person, so I do have the advantage of remembering what that felt like. I am enjoying it so much more now, because I appreciate it more after being 300#. I never in my wildest dreams thought I would be a size 10 - but I am. And, oh my God, it is so much fun. I am sure you have found what I have, and that is - It is so nice to like myself, the way I look and the way I feel. Enjoy it, you deserve it!! Life justs get better every day. Mine is really better today, because Mr. Frisky is back after being gone for 3 weeks. Have a great day. Elma in Graham, WA Banded 2/27/01 Dr. Rumbaut 300/165/here feels good (just hate that #) Size 28/Size10/Still coming down from TT surgery Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2002 Report Share Posted November 15, 2002 , You are (and of course were!) beautiful and a true inspiration for many of us. You go girl!! And enjoy you health and life. Emotions It's been eight months since my surgery and I am just now starting to feel some of the emotional effects. Each pound that I lose now put's , I would never ever change my decision to have this procedure done. Loving yourself is so worth it. R., Portland Banded 2/28/02 - Dr. Srikanth 265.5/188/155 -New photos posted in the album Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2003 Report Share Posted August 31, 2003 Hi Karyn, You're awesome! Love your idea! Thanks for sharing this. I could see something like this work for . Hmm, I'll look into the video you mentioned at the school district Autism Resource dept. Fingers crossed that they have a copy of it. I'm so proud of learning this, a pat on the back mom. Great job! I loved the way you were able to modify around his level. Interesting on the physical things. I probably would not have thought of this. How I would love to observe the actual visual steps of how you approached it. I believe I can create something around 's level on what will interest him on learning these skills. So am I right assuming that has learned some color skills with this project/program you have created for him. I guess something like this could also help with pain level? What do you think or did you create something already? Thanks, Karyn. : ) Irma,15,DS/ASD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2003 Report Share Posted September 2, 2003 In a message dated 9/1/03 8:28:35 AM Central Daylight Time, writes: > Hi Karyn, > You're awesome! Love your idea! Thanks for sharing this. I could see > something like this work for . Hmm, I'll look into the video > you mentioned at the school district Autism Resource dept. Fingers > crossed that they have a copy of it. > I'm so proud of learning this, a pat on the back mom. Great > job! I loved the way you were able to modify around his level. > Interesting on the physical things. I probably would not have > thought of this. How I would love to observe the actual visual steps > of how you approached it. > I believe I can create something around 's level on what will > interest him on learning these skills. > So am I right assuming that has learned some color skills with > this project/program you have created for him. > I guess something like this could also help with pain level? What do > you think or did you create something already? Thanks, Karyn. : ) > > Irma,15,DS/ASD Irma, Most of the credit for this program goes to our super senior therapist that leads 's in-home team. She really adapted it with some input from me. For the physical parts we just worked on feeling his and our hearts beating fast. We have worked tons on taking deep breaths when you feel yourself going to fast. I used the book " the boy and the bear " . It is a very basic book that takes a child through the relaxation process. We also attempted some bio-feedback through a psychologist and through that realized that is great at bringing his levels down but doesn't keep them down. We really went for a huge poster when we first started and slowly brought the size down. Stories starring doing the steps of calming really helped out. Gotta love my digital camera. I don't know if it would work for pain. I see the difficulty coming in because there aren't physical " displays " (like fast breathing, fast heart beat) when someone is in low to moderate pain. Like today when 's ear started draining and we found out that one of his tubes may be gone and his ear drum ruptured. tells me his ear hurts but he says it anytime I get mad so I don't know when it really does. It si so hard for us to see when our child is experiencing pain that the teaching would be difficult. karyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2006 Report Share Posted June 10, 2006 > > How do you get free of a very stressful situation, when it concerns a Hm. Care proivider, who does everything for me, but now she's interfering with my children going to school and basicly trying to take over my life and kids so she can try and take them away from me? Also HM.Care providers are hard to find, so I'm having a lot of stress from this and could possibly have another stroke from all this! Please Help me figure out how to handle this situation? > contact thesocial services people in your area. This sounds like disabled abuse. You can start with dcf or cys which ever one is in your area. If you really feel this strong contact the local authorities and have them contact her employer as there are people out there just trying to get what you have. The main thing is to remain calm and think about your family. Don't be afraid of this person these people coun t on u being afraid. When she is gone for whatever reason if u cannot use the phone book call the opearator and have her put u in touch with children andyouth services and ask them to contact the right people. There are people out there to help you.Good Luck and God Bless Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2007 Report Share Posted January 14, 2007 Well folks I heard a very good sermon on TV this morning that really hit the nail on the head for me. I have got to stop felling sorry for myself because I have been on this diet for soooo long and still have candida. I should be thanking God that he lead me to Bee and her site to help me with this. I have seen improvement and if I didn't have Bee's knowledge behind this I would be in a lot worse shape right now. I could not have done this on my own. Bee THANKS for all you do. I wish I could put a face to your name. Could you post a picture?? Thanks again Deb in Mi and Fl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2011 Report Share Posted August 2, 2011 Your emotions are normal. I think it's all about perspective. There is no probably - it will be a good thing. It's the best chance you have for your son to be one of the lucky ones. If you get on utube there is a little boy Bex that has a clip 24 hrs (I think) after his 1st cast dancing and running. It may take your child a few more/less days to adjust but he will. Struggles are part of life. They make us stronger:) he will remain his happy little self. My son who is a special needs child can ride a bike and scooter in cast..SLOWLY- but he can do it. There are times casts suck... All the cousins go swimming and leave him.... Cast sores.... But all in all it's not a big deal. The big deal is we are trying to help correct his spine and give him a shot of a life without repeated surgeries, rod extentions, pain, ect. We are trying to keep him healthy and happy, which is what you ate doing too. You will see- in a few months this will be old hat to you. It may even be over. You will laugh that you were initially so tearful. Things won't be perfect, they can get downright hairy BUT it will be ok. Life will resume in a predictable manner with a new normal entwined w the old;) I promise it will be fine. You have a lot to be thankful for. Your son is the perfect age and his curve is relatively low. Now get in there and do this thing! In the grand scheme of things this will hopefully be a small glitch in the road. If you haven't visited the ISoP site do. Read all the positives. Allow yourself to be optimistically hopeful, it beats the pants off despair. (says the mom who is mildly freaking out about cast #4 hoping we will continue to make progress and terrified we won't ) We all have our days of dread. Just know in your heart and be confident in your mind..... This is the best shot your son has. You are doing the right thing. You are doing what's in your power to help your baby:) Best wishes and good luck! God bless, Tame Sent from my iPhone On Aug 1, 2011, at 10:06 PM, " Heath " <jaheath86@...> wrote: Hello there. I haven't been on CAST in quite some time. My son, , was dx with infantile scoli when he was 4 months old. At the time, his curve was around 20 degrees and everyone was cautiously optimistic about it resolving. He is now almost 15 months old and we were told this Thursday that his curve has now progressed to 45 degrees (since April). We have an MRI next week, and a projected first casting at the beginning of September at Shriner's Philly. I am currently working on getting all of his XRays, etc faxed back to Shriner's Philly. We originally began treatment there, but transferred to another hospital for a second opinion--stayed there a few months--and are now returning to Shriner's because they seem to follow Dr. Metha's principles much more closely. I feel like I have most of my p's and q's in line regarding casting from a medical standpoint, but I have another question for you moms/dads out there: How did you get through this process emotionally as a parent? Ever since Thursday I feel like I cannot stop crying. I guess it's because for the last 10 months, 's back has been stable and we thought we were going to be one of the " lucky ones " that self-resolved. Now, I suppose reality has hit that this is real. I know CAST will probably be a good thing, but sometimes reading about all of the struggles and frustrations just makes me dread it even more. I cannot imagine watching be unable to sit up--walk (he just learned)--and play. He's such a happy baby, and I am so fearful that this is going to change his personality and make him angry and scared. Has this been the case for most people? Any words of wisdom that helped you get through this at the beginning? I'm not trying to be negative--just honest. Any thoughts would be greatly appreciated! Thanks so much. ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2011 Report Share Posted August 2, 2011 Hi there, my name is Graham Hill and my wife and I went through this whole process exactly a year ago with our then 27 month old Olivia. the emotional ride was signiificant for us as well, and for all parents- each one is so unique. we were treated at Shriners Philly with Dr. C after a consult there and at Sick Kids in Toronto, we are from Toronto. We too felt that Shriners followed the Metha method much closer and Dr. C has become a subject matter expert in short course. We do not have to go to Shriners in Philly now, we go to Erie which is wonderful and really kid centric, also 6 hours closer to us. We had the first cast on in Philly and as you have noted, we questioned everything, still do. We call it our new normal. I hope this gives you hope. Our daughter has not really be limited due to the casting and bracing (we are in our first brace for the summertime which is great), except for the new normals like being vigilant around water- watching and preventing pee leaks (these are rare for us as she is now potty trained) and monitoring her in the heat and around sand etc. I am not sure if it has gotten easier on the emotions, just more familiar I guess... The CAST group has been a great resource for us, and we have learned to trust Dr. C, he is good and knowledgeable. As I said each case is unique and some kids get straightened out in short course (boys usually resolve better and sooner that girls, so hopefully that will be the case for you. the first cast is the hardest for sure. you never want to see your child in any discomfort. I know that Olivia acclimatized pretty quickly, quicker that we did that is for sure. Are you closer to Erie or Philly? Graham > > Hello there. I haven't been on CAST in quite some time. My son, , was dx with infantile scoli when he was 4 months old. At the time, his curve was around 20 degrees and everyone was cautiously optimistic about it resolving. He is now almost 15 months old and we were told this Thursday that his curve has now progressed to 45 degrees (since April). We have an MRI next week, and a projected first casting at the beginning of September at Shriner's Philly. I am currently working on getting all of his XRays, etc faxed back to Shriner's Philly. We originally began treatment there, but transferred to another hospital for a second opinion--stayed there a few months--and are now returning to Shriner's because they seem to follow Dr. Metha's principles much more closely. > > I feel like I have most of my p's and q's in line regarding casting from a medical standpoint, but I have another question for you moms/dads out there: How did you get through this process emotionally as a parent? > > Ever since Thursday I feel like I cannot stop crying. I guess it's because for the last 10 months, 's back has been stable and we thought we were going to be one of the " lucky ones " that self-resolved. Now, I suppose reality has hit that this is real. I know CAST will probably be a good thing, but sometimes reading about all of the struggles and frustrations just makes me dread it even more. I cannot imagine watching be unable to sit up--walk (he just learned)--and play. He's such a happy baby, and I am so fearful that this is going to change his personality and make him angry and scared. Has this been the case for most people? Any words of wisdom that helped you get through this at the beginning? I'm not trying to be negative--just honest. Any thoughts would be greatly appreciated! Thanks so much. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2011 Report Share Posted August 3, 2011 Thanks Graham for your response. We are closer to Philly (about 3.5-4 hours) by car. Dr. C will be doing our cast as well. We saw him once or twice before we transferred to the outside hospital. Now we are working with his nurse S to get all of the paperwork ready to return to Shriners. How large was Olivia's curve? How many casts before the brace? I think I also have about a zillion questions about " life " with the cast swimming through me head. I'm guessing that over time the questions will be answered...probably most through experience...and it will get better. I'm wondering how in the world I will wash his hair--how careful you have to be about a drop of water getting on the cast--how it works when they are sick--what long car trips will be like--whether everyone we meet will stare at us--you know, the usual. Any and all insight would be greatly appreciated! Jen > > > > Hello there. I haven't been on CAST in quite some time. My son, , was dx with infantile scoli when he was 4 months old. At the time, his curve was around 20 degrees and everyone was cautiously optimistic about it resolving. He is now almost 15 months old and we were told this Thursday that his curve has now progressed to 45 degrees (since April). We have an MRI next week, and a projected first casting at the beginning of September at Shriner's Philly. I am currently working on getting all of his XRays, etc faxed back to Shriner's Philly. We originally began treatment there, but transferred to another hospital for a second opinion--stayed there a few months--and are now returning to Shriner's because they seem to follow Dr. Metha's principles much more closely. > > > > I feel like I have most of my p's and q's in line regarding casting from a medical standpoint, but I have another question for you moms/dads out there: How did you get through this process emotionally as a parent? > > > > Ever since Thursday I feel like I cannot stop crying. I guess it's because for the last 10 months, 's back has been stable and we thought we were going to be one of the " lucky ones " that self-resolved. Now, I suppose reality has hit that this is real. I know CAST will probably be a good thing, but sometimes reading about all of the struggles and frustrations just makes me dread it even more. I cannot imagine watching be unable to sit up--walk (he just learned)--and play. He's such a happy baby, and I am so fearful that this is going to change his personality and make him angry and scared. Has this been the case for most people? Any words of wisdom that helped you get through this at the beginning? I'm not trying to be negative--just honest. Any thoughts would be greatly appreciated! Thanks so much. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2011 Report Share Posted August 3, 2011 Thanks Graham for your response. We are closer to Philly (about 3.5-4 hours) by car. Dr. C will be doing our cast as well. We saw him once or twice before we transferred to the outside hospital. Now we are working with his nurse S to get all of the paperwork ready to return to Shriners. How large was Olivia's curve? How many casts before the brace? I think I also have about a zillion questions about " life " with the cast swimming through me head. I'm guessing that over time the questions will be answered...probably most through experience...and it will get better. I'm wondering how in the world I will wash his hair--how careful you have to be about a drop of water getting on the cast--how it works when they are sick--what long car trips will be like--whether everyone we meet will stare at us--you know, the usual. Any and all insight would be greatly appreciated! Jen > > > > Hello there. I haven't been on CAST in quite some time. My son, , was dx with infantile scoli when he was 4 months old. At the time, his curve was around 20 degrees and everyone was cautiously optimistic about it resolving. He is now almost 15 months old and we were told this Thursday that his curve has now progressed to 45 degrees (since April). We have an MRI next week, and a projected first casting at the beginning of September at Shriner's Philly. I am currently working on getting all of his XRays, etc faxed back to Shriner's Philly. We originally began treatment there, but transferred to another hospital for a second opinion--stayed there a few months--and are now returning to Shriner's because they seem to follow Dr. Metha's principles much more closely. > > > > I feel like I have most of my p's and q's in line regarding casting from a medical standpoint, but I have another question for you moms/dads out there: How did you get through this process emotionally as a parent? > > > > Ever since Thursday I feel like I cannot stop crying. I guess it's because for the last 10 months, 's back has been stable and we thought we were going to be one of the " lucky ones " that self-resolved. Now, I suppose reality has hit that this is real. I know CAST will probably be a good thing, but sometimes reading about all of the struggles and frustrations just makes me dread it even more. I cannot imagine watching be unable to sit up--walk (he just learned)--and play. He's such a happy baby, and I am so fearful that this is going to change his personality and make him angry and scared. Has this been the case for most people? Any words of wisdom that helped you get through this at the beginning? I'm not trying to be negative--just honest. Any thoughts would be greatly appreciated! Thanks so much. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2011 Report Share Posted August 3, 2011 Thanks for the encouragement from everyone that has responded that I am doing the right thing. It might sound silly--but I've been struggling with that a bit. I think mostly because hasn't seemed to be bothered at all by his scoliosis. He's hit every milestone, etc, etc... so a small voice inside my head has recently been chanting " maybe it would have been better if you hadn't mentioned it to the pediatrician... " I'm pretty sure that's not the case in the long run. It helps to hear that I've made the right decision. is my first child, so I think there's a selfish part of me that is sort of " mourning " having a " normal " child who isn't limited by anything. I am confident that in time that too will improve. I've been on ISOP and youtube ... as well as talked to Bexon's mom and Heidi multiple times throughout the last 10 months since Jax was dx and we were just " watching and waiting. " It amazes me sometimes to watch those videos online and see how happy and optimistic the parents are. Did you guys feel like this at first, too, or did you experience the anger/frustration I am? Heidi once told me to 'go ahead and have my pity party--that's normal' ... I HOPE HOPE HOPE that I too will get to the point where it is " old hat " and our " new normal. " I'm just not there right now ... and my mother (who I am very close to) makes me feel like I should already be Pollyanna Sunshine about the whole ordeal only 5 days after finding out. That makes it hard. Thanks so much for talking to me about this--and letting me vent--it really helps to hear from people who truly understand. Looking forward to hearing from you all! Jen > > > > > > Hello there. I haven't been on CAST in quite some time. My son, , was dx with infantile scoli when he was 4 months old. At the time, his curve was around 20 degrees and everyone was cautiously optimistic about it resolving. He is now almost 15 months old and we were told this Thursday that his curve has now progressed to 45 degrees (since April). We have an MRI next week, and a projected first casting at the beginning of September at Shriner's Philly. I am currently working on getting all of his XRays, etc faxed back to Shriner's Philly. We originally began treatment there, but transferred to another hospital for a second opinion--stayed there a few months--and are now returning to Shriner's because they seem to follow Dr. Metha's principles much more closely. > > > > > > I feel like I have most of my p's and q's in line regarding casting from a medical standpoint, but I have another question for you moms/dads out there: How did you get through this process emotionally as a parent? > > > > > > Ever since Thursday I feel like I cannot stop crying. I guess it's because for the last 10 months, 's back has been stable and we thought we were going to be one of the " lucky ones " that self-resolved. Now, I suppose reality has hit that this is real. I know CAST will probably be a good thing, but sometimes reading about all of the struggles and frustrations just makes me dread it even more. I cannot imagine watching be unable to sit up--walk (he just learned)--and play. He's such a happy baby, and I am so fearful that this is going to change his personality and make him angry and scared. Has this been the case for most people? Any words of wisdom that helped you get through this at the beginning? I'm not trying to be negative--just honest. Any thoughts would be greatly appreciated! Thanks so much. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2011 Report Share Posted August 3, 2011 I would venture to guess we all felt similar. Your mom must be super optimistic! The Pollyanna Sunshine comment made me grin:) You certainly don't need to get a Pollyanna Sunshine bumper sticker or anything, but once your family adjusts and you are ready to accept life as it is, you will see things will work out. Take as much time as you need. My personal philosophy is don't sweat the small stuff. I have really learned to let go of a lot of silly ideas that once were important. Everyone has a different story, circumstance, or angle but all of us are equally heard on this site. You can come here to vent or celebrate any time and we ALL will listen! Tame Sent from my iPhone On Aug 2, 2011, at 8:56 PM, " Heath " <jaheath86@...> wrote: Thanks for the encouragement from everyone that has responded that I am doing the right thing. It might sound silly--but I've been struggling with that a bit. I think mostly because hasn't seemed to be bothered at all by his scoliosis. He's hit every milestone, etc, etc... so a small voice inside my head has recently been chanting " maybe it would have been better if you hadn't mentioned it to the pediatrician... " I'm pretty sure that's not the case in the long run. It helps to hear that I've made the right decision. is my first child, so I think there's a selfish part of me that is sort of " mourning " having a " normal " child who isn't limited by anything. I am confident that in time that too will improve. I've been on ISOP and youtube ... as well as talked to Bexon's mom and Heidi multiple times throughout the last 10 months since Jax was dx and we were just " watching and waiting. " It amazes me sometimes to watch those videos online and see how happy and optimistic the parents are. Did you guys feel like this at first, too, or did you experience the anger/frustration I am? Heidi once told me to 'go ahead and have my pity party--that's normal' ... I HOPE HOPE HOPE that I too will get to the point where it is " old hat " and our " new normal. " I'm just not there right now ... and my mother (who I am very close to) makes me feel like I should already be Pollyanna Sunshine about the whole ordeal only 5 days after finding out. That makes it hard. Thanks so much for talking to me about this--and letting me vent--it really helps to hear from people who truly understand. Looking forward to hearing from you all! Jen Hello there. I haven't been on CAST in quite some time. My son, , was dx with infantile scoli when he was 4 months old. At the time, his curve was around 20 degrees and everyone was cautiously optimistic about it resolving. He is now almost 15 months old and we were told this Thursday that his curve has now progressed to 45 degrees (since April). We have an MRI next week, and a projected first casting at the beginning of September at Shriner's Philly. I am currently working on getting all of his XRays, etc faxed back to Shriner's Philly. We originally began treatment there, but transferred to another hospital for a second opinion--stayed there a few months--and are now returning to Shriner's because they seem to follow Dr. Metha's principles much more closely. I feel like I have most of my p's and q's in line regarding casting from a medical standpoint, but I have another question for you moms/dads out there: How did you get through this process emotionally as a parent? Ever since Thursday I feel like I cannot stop crying. I guess it's because for the last 10 months, 's back has been stable and we thought we were going to be one of the " lucky ones " that self-resolved. Now, I suppose reality has hit that this is real. I know CAST will probably be a good thing, but sometimes reading about all of the struggles and frustrations just makes me dread it even more. I cannot imagine watching be unable to sit up--walk (he just learned)--and play. He's such a happy baby, and I am so fearful that this is going to change his personality and make him angry and scared. Has this been the case for most people? Any words of wisdom that helped you get through this at the beginning? I'm not trying to be negative--just honest. Any thoughts would be greatly appreciated! Thanks so much. ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2011 Report Share Posted August 3, 2011 I would venture to guess we all felt similar. Your mom must be super optimistic! The Pollyanna Sunshine comment made me grin:) You certainly don't need to get a Pollyanna Sunshine bumper sticker or anything, but once your family adjusts and you are ready to accept life as it is, you will see things will work out. Take as much time as you need. My personal philosophy is don't sweat the small stuff. I have really learned to let go of a lot of silly ideas that once were important. Everyone has a different story, circumstance, or angle but all of us are equally heard on this site. You can come here to vent or celebrate any time and we ALL will listen! Tame Sent from my iPhone On Aug 2, 2011, at 8:56 PM, " Heath " <jaheath86@...> wrote: Thanks for the encouragement from everyone that has responded that I am doing the right thing. It might sound silly--but I've been struggling with that a bit. I think mostly because hasn't seemed to be bothered at all by his scoliosis. He's hit every milestone, etc, etc... so a small voice inside my head has recently been chanting " maybe it would have been better if you hadn't mentioned it to the pediatrician... " I'm pretty sure that's not the case in the long run. It helps to hear that I've made the right decision. is my first child, so I think there's a selfish part of me that is sort of " mourning " having a " normal " child who isn't limited by anything. I am confident that in time that too will improve. I've been on ISOP and youtube ... as well as talked to Bexon's mom and Heidi multiple times throughout the last 10 months since Jax was dx and we were just " watching and waiting. " It amazes me sometimes to watch those videos online and see how happy and optimistic the parents are. Did you guys feel like this at first, too, or did you experience the anger/frustration I am? Heidi once told me to 'go ahead and have my pity party--that's normal' ... I HOPE HOPE HOPE that I too will get to the point where it is " old hat " and our " new normal. " I'm just not there right now ... and my mother (who I am very close to) makes me feel like I should already be Pollyanna Sunshine about the whole ordeal only 5 days after finding out. That makes it hard. Thanks so much for talking to me about this--and letting me vent--it really helps to hear from people who truly understand. Looking forward to hearing from you all! Jen Hello there. I haven't been on CAST in quite some time. My son, , was dx with infantile scoli when he was 4 months old. At the time, his curve was around 20 degrees and everyone was cautiously optimistic about it resolving. He is now almost 15 months old and we were told this Thursday that his curve has now progressed to 45 degrees (since April). We have an MRI next week, and a projected first casting at the beginning of September at Shriner's Philly. I am currently working on getting all of his XRays, etc faxed back to Shriner's Philly. We originally began treatment there, but transferred to another hospital for a second opinion--stayed there a few months--and are now returning to Shriner's because they seem to follow Dr. Metha's principles much more closely. I feel like I have most of my p's and q's in line regarding casting from a medical standpoint, but I have another question for you moms/dads out there: How did you get through this process emotionally as a parent? Ever since Thursday I feel like I cannot stop crying. I guess it's because for the last 10 months, 's back has been stable and we thought we were going to be one of the " lucky ones " that self-resolved. Now, I suppose reality has hit that this is real. I know CAST will probably be a good thing, but sometimes reading about all of the struggles and frustrations just makes me dread it even more. I cannot imagine watching be unable to sit up--walk (he just learned)--and play. He's such a happy baby, and I am so fearful that this is going to change his personality and make him angry and scared. Has this been the case for most people? Any words of wisdom that helped you get through this at the beginning? I'm not trying to be negative--just honest. Any thoughts would be greatly appreciated! Thanks so much. ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2011 Report Share Posted August 3, 2011 Hey Jen! I'm new to this journey as well! My daughter Cortlynn is 10 months old and was diagnosed with a 44 degree curve/50 degree rotation a few months back. I totally understand what your feeling! We had her first cast applied at the end of June so we a little over a month into it. Were still in that trial period of figuring out what works best for us with diapering and such. She will be 10 months tomorrow so she hasn't begun walking yet. But I tell you this cast hasn't stopped her one bit from trying to walk and keep up with her big sisters! Honestly I'd say for the first 3 days after the casting she seemed sad and disturbed by it almost depressed in a way but after that she was back to her normal happy self! And since the cast she is even beginning to walk with her little push baby sroller. So with that being said yes it's tough at times and I still have my down moments but ultimately this is for the best. I pray everyday for a wonderful outcome for my baby and the strength we need to get through this! Not only for my family but all of the others here too! I am new at this too and we have a long road ahead of us and by no means am I an expert, but I hope you know we are here for you guys!! I wish you the very best and you will be in my prayers as well!! Caren > > > > > > > > Hello there. I haven't been on CAST in quite some time. My son, , was dx with infantile scoli when he was 4 months old. At the time, his curve was around 20 degrees and everyone was cautiously optimistic about it resolving. He is now almost 15 months old and we were told this Thursday that his curve has now progressed to 45 degrees (since April). We have an MRI next week, and a projected first casting at the beginning of September at Shriner's Philly. I am currently working on getting all of his XRays, etc faxed back to Shriner's Philly. We originally began treatment there, but transferred to another hospital for a second opinion--stayed there a few months--and are now returning to Shriner's because they seem to follow Dr. Metha's principles much more closely. > > > > > > > > I feel like I have most of my p's and q's in line regarding casting from a medical standpoint, but I have another question for you moms/dads out there: How did you get through this process emotionally as a parent? > > > > > > > > Ever since Thursday I feel like I cannot stop crying. I guess it's because for the last 10 months, 's back has been stable and we thought we were going to be one of the " lucky ones " that self-resolved. Now, I suppose reality has hit that this is real. I know CAST will probably be a good thing, but sometimes reading about all of the struggles and frustrations just makes me dread it even more. I cannot imagine watching be unable to sit up--walk (he just learned)--and play. He's such a happy baby, and I am so fearful that this is going to change his personality and make him angry and scared. Has this been the case for most people? Any words of wisdom that helped you get through this at the beginning? I'm not trying to be negative--just honest. Any thoughts would be greatly appreciated! Thanks so much. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2011 Report Share Posted August 3, 2011 I don't think there is one parent that doesn't wish we could hug you right now. The fear of the unknown is always the hardest one to face. Let me assure you of a few things right away that I think will put your mind at ease. First of all, your child will adapt and he will amaze and astound you. Don't worry that having that cast on is gonna slow him down......quite the opposite I think! It took my son maybe a week or 2 to adjust to the cast and then he was right back to rippin and roarin again.(he was roughly 17 months when he started casting.) Which seems to be the norm for most of the cast kids......about 2 weeks to adjust in the beginning. An invaluable thing to have initially is a kid size bean bag chair or one of those plush character chairs. It is a good transition seat for them until they get used to feeling how the cast holds their back. In short time though, you will see that they figure out what works for them and they kinda roll to the side a little and use their arms and knees for leverage when getting up. Personally I didn't notice any negative changes to my sons personality at all. Quite the opposite in fact. I see a little boy who is fiercely determined in all things and who has developed a sense of humor that is unbelievable. Don't tell him he can't do something because he has no fear and will figure it out his way alrighty!! Other than getting wet, I can't think of anything that my can't do like a "normal" kid his age. And yes intitially the no bath, don't let them get wet.....is hard. But if you can remain matter of fact about it, and not act like it's a big deal, they also will adopt your attitude. I went into this whole casting thing with my eyes wide shut. I knew just enough but had no clue how it was really was going to be. Unfortunately, or fortunately as it turned out, my husband was in Iraq when started his casting journey. I had to be strong. I had to be calm in front of . If I let him see any fear or doubt, I knew he would pick up on it. I look back now and really do realize that more than anything, the fact that I played normal is what shaped my sons attitude toward casting. It all sucks though and I had many a soaked pillow and nights I found myself on the floor hyperventilating from fear and anguish. (I still have those nights honestly. Even after all the progress he's made, I still get scared.) And that's okay. We all understand how you feel and how afraid you are. I look back sometimes and have to laugh at myself thinking one or two casts and he'd be "cured." It's over 2 years later and we're still journeying. And I'm okay with that. And so is . He's almost 4 now and every once in a while he'll tell me he hates his cast or brace, but his next sentence is always: "but it's making my back better huh mommy?" And off he'll go to fight with his brother, play the wii or get himself into some type of mischief or another. Some kids do only need a few casts and others take longer. In every cast has been at zero, so however long this takes, it takes. As long as we keep going forward, we're still on the right road. The first cast will be the worst and hardest to cope with for you and him. They wake up feeling all whacked out from the anesthesia and then have this hard thing on and all the new things they go through that day with the cast trimming and such. Ask them to call you to the recovery room before he wakes up if they will. It is much easier for the kids to wake up to your face and they seem to calm down quicker. If you're going to Philly, I will guess that Dr. C is your doctor and he is beyond awesome and I would travel anywhere to keep him as 's doctor. When first started, his favorite thing was Mickey Mouse. From the very first cast, mickey always went in with and Dr C and the team "casted" mickey too! Every time got a new cast, Mickey got a matching one. It helps if your little guy has a favorite stuffed animal or friend who can get a cast on with him. About a year ago, Mickey was all better and decided Mickey didn't need a cast anymore. That's when found a new friend.....Dr. Curious . (he found a Curious who wears a dr coat and has a stethoscope!) He doesn't need a cast but he still goes into the O.R. with because he "helps" Dr. C!! I know this has gotten long and rambling but I guess I'm trying to find little bits and pieces to let you know you aren't alone and all your fears, feelings, thoughts, all of it are the same ones we've all experienced. Yes there are frustrations and challenges in the beginning but you have a whole lot of people to turn to for advice, comfort or just a place to vent and be mad as hell at scoliosis. And if it's any comfort at all, every night when we say our prayers, and I pray for all the kids with casts to get better numbers and straighter spines and we pray for all the kids who didn't have casting as an option too. I may get frustrated sometimes, but I am ever mindful and greatful that has a chance to get better without surgery because of all that other children had to suffer through before him because casting wasn't an option for them. It puts it back in perspective for me anyway. That he has a chance. I wish all the best for your son and your family as you begin your own journey with casting and assure you that you have a place to turn to when you need answers or just need to talk about it. This is an amazing group of kids and parents here and while I don't get to post much or even read alot of the posts, I also am an email away if you ever need a shoulder or someone to turn to. Best Wishes....Crystalmom to - turns 4 on August 22....in 2nd summer brace (down to 3 degrees in brace.....10 degrees out----AMEN) started casting 4/17/09 at 58 degree curve at Erie Shriners and 8- no health issues From: Heath <jaheath86@...>Subject: emotionsinfantile scoliosis treatment Date: Monday, August 1, 2011, 11:06 PM Hello there. I haven't been on CAST in quite some time. My son, , was dx with infantile scoli when he was 4 months old. At the time, his curve was around 20 degrees and everyone was cautiously optimistic about it resolving. He is now almost 15 months old and we were told this Thursday that his curve has now progressed to 45 degrees (since April). We have an MRI next week, and a projected first casting at the beginning of September at Shriner's Philly. I am currently working on getting all of his XRays, etc faxed back to Shriner's Philly. We originally began treatment there, but transferred to another hospital for a second opinion--stayed there a few months--and are now returning to Shriner's because they seem to follow Dr. Metha's principles much more closely.I feel like I have most of my p's and q's in line regarding casting from a medical standpoint, but I have another question for you moms/dads out there: How did you get through this process emotionally as a parent? Ever since Thursday I feel like I cannot stop crying. I guess it's because for the last 10 months, 's back has been stable and we thought we were going to be one of the "lucky ones" that self-resolved. Now, I suppose reality has hit that this is real. I know CAST will probably be a good thing, but sometimes reading about all of the struggles and frustrations just makes me dread it even more. I cannot imagine watching be unable to sit up--walk (he just learned)--and play. He's such a happy baby, and I am so fearful that this is going to change his personality and make him angry and scared. Has this been the case for most people? Any words of wisdom that helped you get through this at the beginning? I'm not trying to be negative--just honest. Any thoughts would be greatly appreciated! Thanks so much. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2011 Report Share Posted August 3, 2011 I don't think there is one parent that doesn't wish we could hug you right now. The fear of the unknown is always the hardest one to face. Let me assure you of a few things right away that I think will put your mind at ease. First of all, your child will adapt and he will amaze and astound you. Don't worry that having that cast on is gonna slow him down......quite the opposite I think! It took my son maybe a week or 2 to adjust to the cast and then he was right back to rippin and roarin again.(he was roughly 17 months when he started casting.) Which seems to be the norm for most of the cast kids......about 2 weeks to adjust in the beginning. An invaluable thing to have initially is a kid size bean bag chair or one of those plush character chairs. It is a good transition seat for them until they get used to feeling how the cast holds their back. In short time though, you will see that they figure out what works for them and they kinda roll to the side a little and use their arms and knees for leverage when getting up. Personally I didn't notice any negative changes to my sons personality at all. Quite the opposite in fact. I see a little boy who is fiercely determined in all things and who has developed a sense of humor that is unbelievable. Don't tell him he can't do something because he has no fear and will figure it out his way alrighty!! Other than getting wet, I can't think of anything that my can't do like a "normal" kid his age. And yes intitially the no bath, don't let them get wet.....is hard. But if you can remain matter of fact about it, and not act like it's a big deal, they also will adopt your attitude. I went into this whole casting thing with my eyes wide shut. I knew just enough but had no clue how it was really was going to be. Unfortunately, or fortunately as it turned out, my husband was in Iraq when started his casting journey. I had to be strong. I had to be calm in front of . If I let him see any fear or doubt, I knew he would pick up on it. I look back now and really do realize that more than anything, the fact that I played normal is what shaped my sons attitude toward casting. It all sucks though and I had many a soaked pillow and nights I found myself on the floor hyperventilating from fear and anguish. (I still have those nights honestly. Even after all the progress he's made, I still get scared.) And that's okay. We all understand how you feel and how afraid you are. I look back sometimes and have to laugh at myself thinking one or two casts and he'd be "cured." It's over 2 years later and we're still journeying. And I'm okay with that. And so is . He's almost 4 now and every once in a while he'll tell me he hates his cast or brace, but his next sentence is always: "but it's making my back better huh mommy?" And off he'll go to fight with his brother, play the wii or get himself into some type of mischief or another. Some kids do only need a few casts and others take longer. In every cast has been at zero, so however long this takes, it takes. As long as we keep going forward, we're still on the right road. The first cast will be the worst and hardest to cope with for you and him. They wake up feeling all whacked out from the anesthesia and then have this hard thing on and all the new things they go through that day with the cast trimming and such. Ask them to call you to the recovery room before he wakes up if they will. It is much easier for the kids to wake up to your face and they seem to calm down quicker. If you're going to Philly, I will guess that Dr. C is your doctor and he is beyond awesome and I would travel anywhere to keep him as 's doctor. When first started, his favorite thing was Mickey Mouse. From the very first cast, mickey always went in with and Dr C and the team "casted" mickey too! Every time got a new cast, Mickey got a matching one. It helps if your little guy has a favorite stuffed animal or friend who can get a cast on with him. About a year ago, Mickey was all better and decided Mickey didn't need a cast anymore. That's when found a new friend.....Dr. Curious . (he found a Curious who wears a dr coat and has a stethoscope!) He doesn't need a cast but he still goes into the O.R. with because he "helps" Dr. C!! I know this has gotten long and rambling but I guess I'm trying to find little bits and pieces to let you know you aren't alone and all your fears, feelings, thoughts, all of it are the same ones we've all experienced. Yes there are frustrations and challenges in the beginning but you have a whole lot of people to turn to for advice, comfort or just a place to vent and be mad as hell at scoliosis. And if it's any comfort at all, every night when we say our prayers, and I pray for all the kids with casts to get better numbers and straighter spines and we pray for all the kids who didn't have casting as an option too. I may get frustrated sometimes, but I am ever mindful and greatful that has a chance to get better without surgery because of all that other children had to suffer through before him because casting wasn't an option for them. It puts it back in perspective for me anyway. That he has a chance. I wish all the best for your son and your family as you begin your own journey with casting and assure you that you have a place to turn to when you need answers or just need to talk about it. This is an amazing group of kids and parents here and while I don't get to post much or even read alot of the posts, I also am an email away if you ever need a shoulder or someone to turn to. Best Wishes....Crystalmom to - turns 4 on August 22....in 2nd summer brace (down to 3 degrees in brace.....10 degrees out----AMEN) started casting 4/17/09 at 58 degree curve at Erie Shriners and 8- no health issues From: Heath <jaheath86@...>Subject: emotionsinfantile scoliosis treatment Date: Monday, August 1, 2011, 11:06 PM Hello there. I haven't been on CAST in quite some time. My son, , was dx with infantile scoli when he was 4 months old. At the time, his curve was around 20 degrees and everyone was cautiously optimistic about it resolving. He is now almost 15 months old and we were told this Thursday that his curve has now progressed to 45 degrees (since April). We have an MRI next week, and a projected first casting at the beginning of September at Shriner's Philly. I am currently working on getting all of his XRays, etc faxed back to Shriner's Philly. We originally began treatment there, but transferred to another hospital for a second opinion--stayed there a few months--and are now returning to Shriner's because they seem to follow Dr. Metha's principles much more closely.I feel like I have most of my p's and q's in line regarding casting from a medical standpoint, but I have another question for you moms/dads out there: How did you get through this process emotionally as a parent? Ever since Thursday I feel like I cannot stop crying. I guess it's because for the last 10 months, 's back has been stable and we thought we were going to be one of the "lucky ones" that self-resolved. Now, I suppose reality has hit that this is real. I know CAST will probably be a good thing, but sometimes reading about all of the struggles and frustrations just makes me dread it even more. I cannot imagine watching be unable to sit up--walk (he just learned)--and play. He's such a happy baby, and I am so fearful that this is going to change his personality and make him angry and scared. Has this been the case for most people? Any words of wisdom that helped you get through this at the beginning? I'm not trying to be negative--just honest. Any thoughts would be greatly appreciated! Thanks so much. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2011 Report Share Posted August 3, 2011 S is the best nurse ever! She rocks and please do say hello to her for us. Olivia started wtih a top curve of greater than 40 degrees and a lower curve in the thirties. We have had six casts to date and the current brace- basically a years worth. We have learned to do hair washes 'salon style' in the kitchen sink- laying down on the counter head into the basin- and bum baths in the same sink standing up. Some water won't damage the cast but you do your best to keep them clean and free of dirty, sand debris. We had our share of pee leaks which require a good long does of hair dryering to dry out of the undershirt and cast. Car rides we try to break up so she is not sitting in one position too long but again she went 10 hours on one trip back from Philly. you will find over time your individual habits and what works for you. Wishing you all the best Graham > > > > > > Hello there. I haven't been on CAST in quite some time. My son, , was dx with infantile scoli when he was 4 months old. At the time, his curve was around 20 degrees and everyone was cautiously optimistic about it resolving. He is now almost 15 months old and we were told this Thursday that his curve has now progressed to 45 degrees (since April). We have an MRI next week, and a projected first casting at the beginning of September at Shriner's Philly. I am currently working on getting all of his XRays, etc faxed back to Shriner's Philly. We originally began treatment there, but transferred to another hospital for a second opinion--stayed there a few months--and are now returning to Shriner's because they seem to follow Dr. Metha's principles much more closely. > > > > > > I feel like I have most of my p's and q's in line regarding casting from a medical standpoint, but I have another question for you moms/dads out there: How did you get through this process emotionally as a parent? > > > > > > Ever since Thursday I feel like I cannot stop crying. I guess it's because for the last 10 months, 's back has been stable and we thought we were going to be one of the " lucky ones " that self-resolved. Now, I suppose reality has hit that this is real. I know CAST will probably be a good thing, but sometimes reading about all of the struggles and frustrations just makes me dread it even more. I cannot imagine watching be unable to sit up--walk (he just learned)--and play. He's such a happy baby, and I am so fearful that this is going to change his personality and make him angry and scared. Has this been the case for most people? Any words of wisdom that helped you get through this at the beginning? I'm not trying to be negative--just honest. Any thoughts would be greatly appreciated! Thanks so much. > > > > > > Quote Link to comment Share on other sites More sharing options...
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