Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 Hi Tasha, My name is Amy. I am also the proud mother of twin girls. Addy & Lucy. Addy was diagnosed with infantile scoliosis at 9 months. We are from Massachusetts and spent a year at Children's hospital in Boston. She was 43 degrees when we started bracing and rapidly progressed to 68! She wore braces 23 hours a day and it just continued to get worse. The doctors at children's wanted to do surgery- but we then found out about the casting. Addy had her first cast applied at Shriner's Hospital in Erie, PA. in March and we are heading back there Monday to have her third Cast applied on Tuesday. She has been doing absolutely wonderful in her cast. She was always uncomfortable in her braces-however never complains about her cast. The hardest part for me is that her twin sister and big sister(Ella 5 yrs) both love to swim and we live on a beach. So keeping her away from the water and sand are always a challenge. She is very good about it. Also they all used to love to take baths together and now they can't. We a very pleased to have found out about this casting process in hopes of avoiding surgery. I wish you all the best and look forward to hearing how it all went. Also to everyone else in this group- I met Joy & Solana on our last trip to Erie- Addy and Sol were in the same room at the hospital. Joy told me about this wonderful group. I just haven't had very much time to join in. I look forward to talking to all of you and learning everything I can from all of you! Take Care! ...Amy ( mom to Ella 5 -Addy & Lucy 2) ryanswalk <ryanswalk@...> wrote: Hi all I am new to the group. My name is Tasha and am the proud mother of 15 month old twin boys. and . was diagnosed with infatile scoliosis in January. It was a 29 degree curvature and went to 64 by APril. After xrays, MRI, CTScan, and such he will get his first plaster cast on Monday, July 17. I am so ready to get this started I feel like we have been talking about it forever, but I am very scared for him. And I guess for me too. We live in Fort Worth, Texas and his doctor is at ish Rite Hospital for Children in Dallas. We feel truly blessed to be going to ish Rite. They have a great staff. Anyway I am preparing myself for the worst(the first few days that is)and praying for the best. I would love any advice and or info anyone can give us. So we will start this new walk on Monday.............what can we expect? --------------------------------- Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 Hi Tasha, I don't know anything about the hospital that you are going to, but I can give you an idea of how things go for us when we take Ian to the Shriners Hospital in PA. When we get there, they usually take all his vitals (blood pressure, temperature, weight, height, etc). Then they take us to the pre-op waiting area. We meet with the anesthesiologist and doctor at this point. They basically look him over and ask about any recent illnesses etc. At this point, they will ask if we want Versed (happy juice), but we usually decline since he usually isn't scared at this point. Then when they are ready, we walk with him to a set of doors that leads to the OR. We have to hand him off to the nurse at this point. Then we wait in the parent waiting room. The procedure takes about 40 minutes although last time it took them longer. Once he starts coming around, they call us back to the recovery room. This is absolutely the hardest part because Ian has a difficult time with anesthesia. He's usually crying, screaming and physically fighting us. NO FUN. The last time we took him to the game room as soon as we could to distract him and that helped him to snap out of it faster this last time. Once the cast is dry, they will come to trim the cast and that is no fun either. Doesn't hurt him of course, but the sound of the saw is scary for him. Once that is done, they then apply moleskin petals to the outer edges of the cast so that the plaster doesn't rub against the skin. Again, not painful, but scary for our little guy. It's a long and tiring day for sure. Is the ish Rite Hospital using the Mehta technique and do they have the AMIL table? It's definitely important that they have the right equipment. Anyway, if you go to the photos section and look up Ian, I have a lot of pictures of him from the hospital and in his casts. We are getting ready for his 5th cast on the 19th. Noelle (12-2-01) Ian (8-15-04) 1st cast and SCARED! Hi all I am new to the group. My name is Tasha and am the proud mother of 15 month old twin boys. and . was diagnosed with infatile scoliosis in January. It was a 29 degree curvature and went to 64 by APril. After xrays, MRI, CTScan, and such he will get his first plaster cast on Monday, July 17. I am so ready to get this started I feel like we have been talking about it forever, but I am very scared for him. And I guess for me too. We live in Fort Worth, Texas and his doctor is at ish Rite Hospital for Children in Dallas. We feel truly blessed to be going to ish Rite. They have a great staff. Anyway I am preparing myself for the worst(the first few days that is)and praying for the best. I would love any advice and or info anyone can give us. So we will start this new walk on Monday.............what can we expect? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 It's good to hear from you Amy. I am so glad you found Erie! Aren't they just fantastic!! I can't imagine what a challenge it must be living on the beach and having to stay away from the sand. We just went on vacation to the beach and we ended up having to have my husband take Ian to do other things while I was on the beach with my daughter. I am originally from MA and haven't been to the Cape in years! I miss it! Noelle (12-2-01) Ian (8-15-04) Re: 1st cast and SCARED! Hi Tasha, My name is Amy. I am also the proud mother of twin girls. Addy & Lucy. Addy was diagnosed with infantile scoliosis at 9 months. We are from Massachusetts and spent a year at Children's hospital in Boston. She was 43 degrees when we started bracing and rapidly progressed to 68! She wore braces 23 hours a day and it just continued to get worse. The doctors at children's wanted to do surgery- but we then found out about the casting. Addy had her first cast applied at Shriner's Hospital in Erie, PA. in March and we are heading back there Monday to have her third Cast applied on Tuesday. She has been doing absolutely wonderful in her cast. She was always uncomfortable in her braces-however never complains about her cast. The hardest part for me is that her twin sister and big sister(Ella 5 yrs) both love to swim and we live on a beach. So keeping her away from the water and sand are always a challenge. She is very good about it. Also they all used to love to take baths together and now they can't. We a very pleased to have found out about this casting process in hopes of avoiding surgery. I wish you all the best and look forward to hearing how it all went. Also to everyone else in this group- I met Joy & Solana on our last trip to Erie- Addy and Sol were in the same room at the hospital. Joy told me about this wonderful group. I just haven't had very much time to join in. I look forward to talking to all of you and learning everything I can from all of you! Take Care! ...Amy ( mom to Ella 5 -Addy & Lucy 2) ryanswalk <ryanswalk@...> wrote: Hi all I am new to the group. My name is Tasha and am the proud mother of 15 month old twin boys. and . was diagnosed with infatile scoliosis in January. It was a 29 degree curvature and went to 64 by APril. After xrays, MRI, CTScan, and such he will get his first plaster cast on Monday, July 17. I am so ready to get this started I feel like we have been talking about it forever, but I am very scared for him. And I guess for me too. We live in Fort Worth, Texas and his doctor is at ish Rite Hospital for Children in Dallas. We feel truly blessed to be going to ish Rite. They have a great staff. Anyway I am preparing myself for the worst(the first few days that is)and praying for the best. I would love any advice and or info anyone can give us. So we will start this new walk on Monday.............what can we expect? --------------------------------- Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 Hi Tasha! My son Evan (now 11months) was diagnosed at 4months with progressive infantile scoli. By the time we weeded through several doctors and were either given the option of surgery/bracing or just to " wait and see " , Evan's curvature was at 46 degrees and had a RVAD of 56. He is now in his 3rd cast and is at b/t 15 and 19 degrees in his cast and out of his previous cast was at 24 degrees. We feel truly blessed to have found Shriners Hospital in Erie, PA and have been so pleased with the progress of his casting. It is very hard to deal with the water issues-swimming and bathing. My 3 y/o daughter, Gracie, LOVES to swim and he has a hard time watching that, but adapts so well. Evan has never been too upset in his cast, we joke that it is just like changing a shirt for him now when we change his cast. He adapts very well. The only issues we've had is irritation on the skin/slight skin breakdown and his cast seems to get really tight before a cast change, but no major problems. Feel free to email me anytime. Good luck. and Evan ryanswalk <ryanswalk@...> wrote: Hi all I am new to the group. My name is Tasha and am the proud mother of 15 month old twin boys. and . was diagnosed with infatile scoliosis in January. It was a 29 degree curvature and went to 64 by APril. After xrays, MRI, CTScan, and such he will get his first plaster cast on Monday, July 17. I am so ready to get this started I feel like we have been talking about it forever, but I am very scared for him. And I guess for me too. We live in Fort Worth, Texas and his doctor is at ish Rite Hospital for Children in Dallas. We feel truly blessed to be going to ish Rite. They have a great staff. Anyway I am preparing myself for the worst(the first few days that is)and praying for the best. I would love any advice and or info anyone can give us. So we will start this new walk on Monday.............what can we expect? --------------------------------- Music Unlimited - Access over 1 million songs.Try it free. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 Hi Tasha and welcome to CASTS, a fantastic group of Mothers and Fathers who are very supportive and truly understand what you're going through. I am assuming you are seeing Dr. ston for your casting and I wish you the very best. My daughter Madison has been casted with outstanding results. I would highly recommend you read the infantile scoliosis outreach program's (ISOP) website in it's entiretly. There you will find Madison's story. We live in San Angelo and frequently travel to Saginaw to vist family. Just got back last night actaully. I would be mroe than happy to chat with you and hopefully settle any uneasiness or questions you might have. If you would like e-mail me privately with your number. Best Wishes, Jen http://www.infantilescoliosis.org/madisons_story.htm ryanswalk <ryanswalk@...> wrote: Hi all I am new to the group. My name is Tasha and am the proud mother of 15 month old twin boys. and . was diagnosed with infatile scoliosis in January. It was a 29 degree curvature and went to 64 by APril. After xrays, MRI, CTScan, and such he will get his first plaster cast on Monday, July 17. I am so ready to get this started I feel like we have been talking about it forever, but I am very scared for him. And I guess for me too. We live in Fort Worth, Texas and his doctor is at ish Rite Hospital for Children in Dallas. We feel truly blessed to be going to ish Rite. They have a great staff. Anyway I am preparing myself for the worst(the first few days that is)and praying for the best. I would love any advice and or info anyone can give us. So we will start this new walk on Monday.............what can we expect? --------------------------------- Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 Hi, Tasha! My son Jake was 15 months old when he had his first cast applied in Nov 2005. He adapted very quickly as do most children, and he scared me to death those first few weeks with his antics. The cast didn't slow him down a bit. After the first few days and several messages on this board, we all were okay with Jake's cast. I am so glad you found this group! The knowledge and experience of these veteran parents are invaluable. Feel free to ask as many questions as you need. Welcome! & Jake P.S. I was born in Fort Worth, Texas (now live in MA). You can take the girl out of Texas, but you can't take the Texas out of the girl!!! > > Hi all I am new to the group. My name is Tasha and am the proud > mother of 15 month old twin boys. and . was > diagnosed with infatile scoliosis in January. It was a 29 degree > curvature and went to 64 by APril. After xrays, MRI, CTScan, and such > he will get his first plaster cast on Monday, July 17. I am so ready > to get this started I feel like we have been talking about it forever, > but I am very scared for him. And I guess for me too. We live in Fort > Worth, Texas and his doctor is at ish Rite Hospital for Children > in Dallas. We feel truly blessed to be going to ish Rite. They > have a great staff. Anyway I am preparing myself for the worst (the > first few days that is)and praying for the best. I would love any > advice and or info anyone can give us. So we will start this new walk > on Monday.............what can we expect? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 This may be the second time you get this message...I posted it a while ago and it is not showing up, so I am trying again! Hi Tasha, I don't know anything about the hospital that you are going to, but I can give you an idea of how things go for us when we take Ian to the Shriners Hospital in Erie, PA. When we get there, they usually take all his vitals (blood pressure, temperature, weight, height, etc). Then they take us to the pre-op waiting area. We meet with the anesthesiologist and doctor at this point. They basically look him over and ask about any recent illnesses etc. At this point, they will ask if we want Versed (happy juice), but we usually decline since he usually isn't scared at this point. Then when they are ready, we walk with him to a set of doors that leads to the OR. We have to hand him off to the nurse at this point. Then we wait in the parent waiting room. The procedure takes about 40 minutes although last time it took them longer. Once he starts coming around, they call us back to the recovery room. This is absolutely the hardest part because Ian has a difficult time with anesthesia. He's usually crying, screaming and physically fighting us. NO FUN. The last time we took him to the game room as soon as we could to distract him and that helped him to snap out of it faster this last time. Once the cast is dry, they will come to trim the cast and that is no fun either. Doesn't hurt him of course, but the sound of the saw is scary for him. Once that is done, they then apply moleskin petals to the outer edges of the cast so that the plaster doesn't rub against the skin. Again, not painful, but scary for our little guy. It's a long and tiring day for sure. Is the ish Rite Hospital using the Mehta technique and do they have the AMIL table? It's definitely important that they have the right equipment. Anyway, if you go to the photos section and look up Ian, I have a lot of pictures of him from the hospital and in his casts. We are getting ready for his 5th cast on the 19th. Feel free to email me any time at noellesmommy@.... > > Hi all I am new to the group. My name is Tasha and am the proud > mother of 15 month old twin boys. and . was > diagnosed with infatile scoliosis in January. It was a 29 degree > curvature and went to 64 by APril. After xrays, MRI, CTScan, and such > he will get his first plaster cast on Monday, July 17. I am so ready > to get this started I feel like we have been talking about it forever, > but I am very scared for him. And I guess for me too. We live in Fort > Worth, Texas and his doctor is at ish Rite Hospital for Children > in Dallas. We feel truly blessed to be going to ish Rite. They > have a great staff. Anyway I am preparing myself for the worst (the > first few days that is)and praying for the best. I would love any > advice and or info anyone can give us. So we will start this new walk > on Monday.............what can we expect? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 Amy, Welcome to the group. I'm so glad Joy told you about it. All the parents here are so great. Their experiences are something we all benefit from. We live south of Boston and spent 5 months of our time with Children's Hospital before we learned about serial casting. We went the casting route for 6 months before docs put Jake in his current brace. Out of curiosity, did your doc there refer you to or inform you about Shriners in Erie? Or was it your own research that led you there? Either way, congratulations on getting this excellent treatment for your daughter! I'm sure it is extremely challenging keeping Addy out of the water especially since it is now warm enough to enjoy it. Good luck! & Jake (will be 2 yrs old July 24) > Hi all I am new to the group. My name is Tasha and am the proud > mother of 15 month old twin boys. and . was > diagnosed with infatile scoliosis in January. It was a 29 degree > curvature and went to 64 by APril. After xrays, MRI, CTScan, and such > he will get his first plaster cast on Monday, July 17. I am so ready > to get this started I feel like we have been talking about it forever, > but I am very scared for him. And I guess for me too. We live in Fort > Worth, Texas and his doctor is at ish Rite Hospital for Children > in Dallas. We feel truly blessed to be going to ish Rite. They > have a great staff. Anyway I am preparing myself for the worst(the > first few days that is)and praying for the best. I would love any > advice and or info anyone can give us. So we will start this new walk > on Monday.............what can we expect? > > > > > > > --------------------------------- > Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 Hi , Where in Massachusetts are you from? We live in a small town on Cape Cod called Cotuit. It amazes me that in all our trips up to Boston, I never met anyone going through this. but obviously there are so many of us out there. I would have loved to have found out about casting earlier,However it was never even discussed as an option at any of our visits to Children's. When Addy had progressed so rapidly in such a short amount of time, our Dr. told us she would need surgery. They set up a meeting for my husband and I to discuss a date,plan etc.(It was to be for one week from that date) During that time, Dr Hresko found Dr. and sent Addy's x-rays,MRI,and photos. Dr contacted us and said he thought he could help us. The surgery was canceled and we headed to Erie, PA. We are so pleased with the care that Addy receives from Shriner's Hospital. I know Children's hospital is a top Hospital, but I always feel like she is a number there. At Shriner's she is definitely a person. They are absolutely wonderful! I hope that your son is doing well and thank you for writing.Take care!..............Amy jviv314 <jviv314@...> wrote: Amy, Welcome to the group. I'm so glad Joy told you about it. All the parents here are so great. Their experiences are something we all benefit from. We live south of Boston and spent 5 months of our time with Children's Hospital before we learned about serial casting. We went the casting route for 6 months before docs put Jake in his current brace. Out of curiosity, did your doc there refer you to or inform you about Shriners in Erie? Or was it your own research that led you there? Either way, congratulations on getting this excellent treatment for your daughter! I'm sure it is extremely challenging keeping Addy out of the water especially since it is now warm enough to enjoy it. Good luck! & Jake (will be 2 yrs old July 24) > Hi all I am new to the group. My name is Tasha and am the proud > mother of 15 month old twin boys. and . was > diagnosed with infatile scoliosis in January. It was a 29 degree > curvature and went to 64 by APril. After xrays, MRI, CTScan, and such > he will get his first plaster cast on Monday, July 17. I am so ready > to get this started I feel like we have been talking about it forever, > but I am very scared for him. And I guess for me too. We live in Fort > Worth, Texas and his doctor is at ish Rite Hospital for Children > in Dallas. We feel truly blessed to be going to ish Rite. They > have a great staff. Anyway I am preparing myself for the worst(the > first few days that is)and praying for the best. I would love any > advice and or info anyone can give us. So we will start this new walk > on Monday.............what can we expect? > > > > > > > --------------------------------- > Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2006 Report Share Posted July 11, 2006 Hi , Thanks for writing- It is a challenge with the sand. We do the same thing. We have Addy in a Gymboree class with one of us- during my daughters swimming lessons and keep her, as busy as, possible playing with other things- when her sisters are playing in the water or in the sand. She does love to swing on her swing set and she'll do that all day if she could- she just gets so hot!!! Addy's sisters have been great with all of this and my five year old is always thinking of " cool things " they can do together. Hope your son is doing well with the heat- If you any ideas I 'd love to hear them. Take care, .........Amy Claflin <noellesmommy@...> wrote: It's good to hear from you Amy. I am so glad you found Erie! Aren't they just fantastic!! I can't imagine what a challenge it must be living on the beach and having to stay away from the sand. We just went on vacation to the beach and we ended up having to have my husband take Ian to do other things while I was on the beach with my daughter. I am originally from MA and haven't been to the Cape in years! I miss it! Noelle (12-2-01) Ian (8-15-04) Re: 1st cast and SCARED! Hi Tasha, My name is Amy. I am also the proud mother of twin girls. Addy & Lucy. Addy was diagnosed with infantile scoliosis at 9 months. We are from Massachusetts and spent a year at Children's hospital in Boston. She was 43 degrees when we started bracing and rapidly progressed to 68! She wore braces 23 hours a day and it just continued to get worse. The doctors at children's wanted to do surgery- but we then found out about the casting. Addy had her first cast applied at Shriner's Hospital in Erie, PA. in March and we are heading back there Monday to have her third Cast applied on Tuesday. She has been doing absolutely wonderful in her cast. She was always uncomfortable in her braces-however never complains about her cast. The hardest part for me is that her twin sister and big sister(Ella 5 yrs) both love to swim and we live on a beach. So keeping her away from the water and sand are always a challenge. She is very good about it. Also they all used to love to take baths together and now they can't. We a very pleased to have found out about this casting process in hopes of avoiding surgery. I wish you all the best and look forward to hearing how it all went. Also to everyone else in this group- I met Joy & Solana on our last trip to Erie- Addy and Sol were in the same room at the hospital. Joy told me about this wonderful group. I just haven't had very much time to join in. I look forward to talking to all of you and learning everything I can from all of you! Take Care! ...Amy ( mom to Ella 5 -Addy & Lucy 2) ryanswalk <ryanswalk@...> wrote: Hi all I am new to the group. My name is Tasha and am the proud mother of 15 month old twin boys. and . was diagnosed with infatile scoliosis in January. It was a 29 degree curvature and went to 64 by APril. After xrays, MRI, CTScan, and such he will get his first plaster cast on Monday, July 17. I am so ready to get this started I feel like we have been talking about it forever, but I am very scared for him. And I guess for me too. We live in Fort Worth, Texas and his doctor is at ish Rite Hospital for Children in Dallas. We feel truly blessed to be going to ish Rite. They have a great staff. Anyway I am preparing myself for the worst(the first few days that is)and praying for the best. I would love any advice and or info anyone can give us. So we will start this new walk on Monday.............what can we expect? --------------------------------- Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2006 Report Share Posted July 12, 2006 Thanks everyone for the info. It is wonderful to hear how well all of your little ones have adjusted. I have been told that he would adjust quickly, but have never talked to anyone who actually had a child with a cast. What a relief to find you all. Any diapering or sponge bath tips??? jviv314 <jviv314@...> wrote: Hi, Tasha! My son Jake was 15 months old when he had his first cast applied in Nov 2005. He adapted very quickly as do most children, and he scared me to death those first few weeks with his antics. The cast didn't slow him down a bit. After the first few days and several messages on this board, we all were okay with Jake's cast. I am so glad you found this group! The knowledge and experience of these veteran parents are invaluable. Feel free to ask as many questions as you need. Welcome! & Jake P.S. I was born in Fort Worth, Texas (now live in MA). You can take the girl out of Texas, but you can't take the Texas out of the girl!!! > > Hi all I am new to the group. My name is Tasha and am the proud > mother of 15 month old twin boys. and . was > diagnosed with infatile scoliosis in January. It was a 29 degree > curvature and went to 64 by APril. After xrays, MRI, CTScan, and such > he will get his first plaster cast on Monday, July 17. I am so ready > to get this started I feel like we have been talking about it forever, > but I am very scared for him. And I guess for me too. We live in Fort > Worth, Texas and his doctor is at ish Rite Hospital for Children > in Dallas. We feel truly blessed to be going to ish Rite. They > have a great staff. Anyway I am preparing myself for the worst (the > first few days that is)and praying for the best. I would love any > advice and or info anyone can give us. So we will start this new walk > on Monday.............what can we expect? > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2006 Report Share Posted July 12, 2006 here are the links to the web site with diapering tips and bathing techniques http://www.infantilescoliosis.org/diapering_tips.htm http://www.infantilescoliosis.org/care.htm Tasha Fontenot <ryanswalk@...> wrote: Thanks everyone for the info. It is wonderful to hear how well all of your little ones have adjusted. I have been told that he would adjust quickly, but have never talked to anyone who actually had a child with a cast. What a relief to find you all. Any diapering or sponge bath tips??? jviv314 <jviv314@...> wrote: Hi, Tasha! My son Jake was 15 months old when he had his first cast applied in Nov 2005. He adapted very quickly as do most children, and he scared me to death those first few weeks with his antics. The cast didn't slow him down a bit. After the first few days and several messages on this board, we all were okay with Jake's cast. I am so glad you found this group! The knowledge and experience of these veteran parents are invaluable. Feel free to ask as many questions as you need. Welcome! & Jake P.S. I was born in Fort Worth, Texas (now live in MA). You can take the girl out of Texas, but you can't take the Texas out of the girl!!! > > Hi all I am new to the group. My name is Tasha and am the proud > mother of 15 month old twin boys. and . was > diagnosed with infatile scoliosis in January. It was a 29 degree > curvature and went to 64 by APril. After xrays, MRI, CTScan, and such > he will get his first plaster cast on Monday, July 17. I am so ready > to get this started I feel like we have been talking about it forever, > but I am very scared for him. And I guess for me too. We live in Fort > Worth, Texas and his doctor is at ish Rite Hospital for Children > in Dallas. We feel truly blessed to be going to ish Rite. They > have a great staff. Anyway I am preparing myself for the worst (the > first few days that is)and praying for the best. I would love any > advice and or info anyone can give us. So we will start this new walk > on Monday.............what can we expect? > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2006 Report Share Posted July 12, 2006 tips for playing in the sand that worked for us...I would put Madison in a wet suit that can be picked up a surf shop (I went to Ron Jon)...I would put Be Koool patches on the inside to help keep her cool. This was great for sprinkler and sand playing. Amy Norenberg <ellalucyaddy@...> wrote: Hi , Thanks for writing- It is a challenge with the sand. We do the same thing. We have Addy in a Gymboree class with one of us- during my daughters swimming lessons and keep her, as busy as, possible playing with other things- when her sisters are playing in the water or in the sand. She does love to swing on her swing set and she'll do that all day if she could- she just gets so hot!!! Addy's sisters have been great with all of this and my five year old is always thinking of " cool things " they can do together. Hope your son is doing well with the heat- If you any ideas I 'd love to hear them. Take care, .........Amy Claflin <noellesmommy@...> wrote: It's good to hear from you Amy. I am so glad you found Erie! Aren't they just fantastic!! I can't imagine what a challenge it must be living on the beach and having to stay away from the sand. We just went on vacation to the beach and we ended up having to have my husband take Ian to do other things while I was on the beach with my daughter. I am originally from MA and haven't been to the Cape in years! I miss it! Noelle (12-2-01) Ian (8-15-04) Re: 1st cast and SCARED! Hi Tasha, My name is Amy. I am also the proud mother of twin girls. Addy & Lucy. Addy was diagnosed with infantile scoliosis at 9 months. We are from Massachusetts and spent a year at Children's hospital in Boston. She was 43 degrees when we started bracing and rapidly progressed to 68! She wore braces 23 hours a day and it just continued to get worse. The doctors at children's wanted to do surgery- but we then found out about the casting. Addy had her first cast applied at Shriner's Hospital in Erie, PA. in March and we are heading back there Monday to have her third Cast applied on Tuesday. She has been doing absolutely wonderful in her cast. She was always uncomfortable in her braces-however never complains about her cast. The hardest part for me is that her twin sister and big sister(Ella 5 yrs) both love to swim and we live on a beach. So keeping her away from the water and sand are always a challenge. She is very good about it. Also they all used to love to take baths together and now they can't. We a very pleased to have found out about this casting process in hopes of avoiding surgery. I wish you all the best and look forward to hearing how it all went. Also to everyone else in this group- I met Joy & Solana on our last trip to Erie- Addy and Sol were in the same room at the hospital. Joy told me about this wonderful group. I just haven't had very much time to join in. I look forward to talking to all of you and learning everything I can from all of you! Take Care! ...Amy ( mom to Ella 5 -Addy & Lucy 2) ryanswalk <ryanswalk@...> wrote: Hi all I am new to the group. My name is Tasha and am the proud mother of 15 month old twin boys. and . was diagnosed with infatile scoliosis in January. It was a 29 degree curvature and went to 64 by APril. After xrays, MRI, CTScan, and such he will get his first plaster cast on Monday, July 17. I am so ready to get this started I feel like we have been talking about it forever, but I am very scared for him. And I guess for me too. We live in Fort Worth, Texas and his doctor is at ish Rite Hospital for Children in Dallas. We feel truly blessed to be going to ish Rite. They have a great staff. Anyway I am preparing myself for the worst(the first few days that is)and praying for the best. I would love any advice and or info anyone can give us. So we will start this new walk on Monday.............what can we expect? --------------------------------- Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2006 Report Share Posted July 12, 2006 Amy, Welcome to the group and congratulations on finding this option of treatment. My daughter, Marissa was diagnosed at 12 months and casted early thereafter. She has improved steadily from a curve of over 60 degrees to one now in cast of 12. Pretty amazing. We're from RI. At her diagnosis, we went straight to Boston to see Emans/Karlin for their assessment. In all honesty, they believe in surgery and bracing, that's all they practice. While no doubt they are very smart docs, they have had very little experience with casting so they don't advocate it. It's funny to me also that a top hospital like Children's wouldn't consider investing in a treatment that has been proven to help without surgery. I've been emailing them on Marissa's progress with the hope that they will someday figure it out and invest. Anyway, welcome again. This board is awesome. You can never underestimate the power of such a valuable network of people in the care of your children. Jerry Marissa's Dad Re: Re: 1st cast and SCARED! Hi , Where in Massachusetts are you from? We live in a small town on Cape Cod called Cotuit. It amazes me that in all our trips up to Boston, I never met anyone going through this. but obviously there are so many of us out there. I would have loved to have found out about casting earlier,However it was never even discussed as an option at any of our visits to Children's. When Addy had progressed so rapidly in such a short amount of time, our Dr. told us she would need surgery. They set up a meeting for my husband and I to discuss a date,plan etc.(It was to be for one week from that date) During that time, Dr Hresko found Dr. and sent Addy's x-rays,MRI,and photos. Dr contacted us and said he thought he could help us. The surgery was canceled and we headed to Erie, PA. We are so pleased with the care that Addy receives from Shriner's Hospital. I know Children's hospital is a top Hospital, but I always feel like she is a number there. At Shriner's she is definitely a person. They are absolutely wonderful! I hope that your son is doing well and thank you for writing.Take care!..............Amy jviv314 <jviv314@...> wrote: Amy, Welcome to the group. I'm so glad Joy told you about it. All the parents here are so great. Their experiences are something we all benefit from. We live south of Boston and spent 5 months of our time with Children's Hospital before we learned about serial casting. We went the casting route for 6 months before docs put Jake in his current brace. Out of curiosity, did your doc there refer you to or inform you about Shriners in Erie? Or was it your own research that led you there? Either way, congratulations on getting this excellent treatment for your daughter! I'm sure it is extremely challenging keeping Addy out of the water especially since it is now warm enough to enjoy it. Good luck! & Jake (will be 2 yrs old July 24) > Hi all I am new to the group. My name is Tasha and am the proud > mother of 15 month old twin boys. and . was > diagnosed with infatile scoliosis in January. It was a 29 degree > curvature and went to 64 by APril. After xrays, MRI, CTScan, and such > he will get his first plaster cast on Monday, July 17. I am so ready > to get this started I feel like we have been talking about it forever, > but I am very scared for him. And I guess for me too. We live in Fort > Worth, Texas and his doctor is at ish Rite Hospital for Children > in Dallas. We feel truly blessed to be going to ish Rite. They > have a great staff. Anyway I am preparing myself for the worst(the > first few days that is)and praying for the best. I would love any > advice and or info anyone can give us. So we will start this new walk > on Monday.............what can we expect? > > > > > > > --------------------------------- > Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2006 Report Share Posted July 12, 2006 T, Diapering for us is best when you use a small one tucked under the cast after you pull off the side sticky tabs and tape it to the cast. We then put a pull up over that one which is double protection to keep it up there. I know that this is much more expensive, but so far so good. Sponge baths are challenging. My wife and I tag team this when I'm home so that we make it fun for her because she loves the bath tub. Towels around the cast as you wash the face,shoulders,arms etc. Then around the neck as you do the hair/head. It all works best as it is tailored to the child. They're all different and respond to different things. Make it fun and it'll be fine. Take care, Jerry Marissa's Dad Re: Re: 1st cast and SCARED! Thanks everyone for the info. It is wonderful to hear how well all of your little ones have adjusted. I have been told that he would adjust quickly, but have never talked to anyone who actually had a child with a cast. What a relief to find you all. Any diapering or sponge bath tips??? jviv314 <jviv314@...> wrote: Hi, Tasha! My son Jake was 15 months old when he had his first cast applied in Nov 2005. He adapted very quickly as do most children, and he scared me to death those first few weeks with his antics. The cast didn't slow him down a bit. After the first few days and several messages on this board, we all were okay with Jake's cast. I am so glad you found this group! The knowledge and experience of these veteran parents are invaluable. Feel free to ask as many questions as you need. Welcome! & Jake P.S. I was born in Fort Worth, Texas (now live in MA). You can take the girl out of Texas, but you can't take the Texas out of the girl!!! > > Hi all I am new to the group. My name is Tasha and am the proud > mother of 15 month old twin boys. and . was > diagnosed with infatile scoliosis in January. It was a 29 degree > curvature and went to 64 by APril. After xrays, MRI, CTScan, and such > he will get his first plaster cast on Monday, July 17. I am so ready > to get this started I feel like we have been talking about it forever, > but I am very scared for him. And I guess for me too. We live in Fort > Worth, Texas and his doctor is at ish Rite Hospital for Children > in Dallas. We feel truly blessed to be going to ish Rite. They > have a great staff. Anyway I am preparing myself for the worst (the > first few days that is)and praying for the best. I would love any > advice and or info anyone can give us. So we will start this new walk > on Monday.............what can we expect? > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2006 Report Share Posted July 12, 2006 Amy, We live in Fall River. We've been through your town. We recently spent the week there (on the Cape) with out of state friends, and you should have heard how they butchered many of the town names. It's funny! We were disappointed at a recent follow-up appt in Boston when we told Dr about Jake's progress/success. He was impressed but stated that there is no talk of doing this procedure there in the near future. It is sad, but it does feel like we are just a number there. Thank goodness for Shriners. Stay cool, & Jake > > Hi all I am new to the group. My name is Tasha and am the > proud > > mother of 15 month old twin boys. and . was > > diagnosed with infatile scoliosis in January. It was a 29 degree > > curvature and went to 64 by APril. After xrays, MRI, CTScan, and > such > > he will get his first plaster cast on Monday, July 17. I am so > ready > > to get this started I feel like we have been talking about it > forever, > > but I am very scared for him. And I guess for me too. We live in > Fort > > Worth, Texas and his doctor is at ish Rite Hospital for > Children > > in Dallas. We feel truly blessed to be going to ish Rite. They > > have a great staff. Anyway I am preparing myself for the worst (the > > first few days that is)and praying for the best. I would love any > > advice and or info anyone can give us. So we will start this new > walk > > on Monday.............what can we expect? > > > > > > > > > > > > > > --------------------------------- > > Talk is cheap. Use Messenger to make PC-to-Phone calls. > Great rates starting at 1¢/min. > > > > Quote Link to comment Share on other sites More sharing options...
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