Guest guest Posted April 11, 2012 Report Share Posted April 11, 2012 Hi Meredith, We go to Riley Hospital in Indianapolis as well. What doctor do you see? My daughter is only 18 months and she has a trach. So they are concerned about casting due to restricting her breathing. And with the trach it is a big worry for the doctors there. > >> > > >> > Hi, my name is Meredith and I am new to this site. My daughter Olivia is 8 and has a degree of 86. My daughter has a genetic disorder called Cri Du Chat and is in the severe/profound category. She is small and is basically the size of a typical 4 year old. We are going to attempt to cast her for the next three years and then do the fusion surgery. Are there any families out there that have a child who is somewhat involved that have had the casting done? Also, how long have many of you done the casting for? I do not mean to sound naive, but do they correct it with a gradual straightening? Is that why the casts are changed every five months? We will be going to Riley in Indianapolis. > >> > Meredith > >> > > >> > > = > > > > > > > > > > > > TODAY(Beta) • Powered by > > Ex-NFL QB named in huge fraud case > > Jim McMahon is one of seven people facing a $104 million lawsuit brought by the FDIC. > > Privacy Policy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2012 Report Share Posted April 11, 2012 Hi ,We see Dr. Loder and have been since Olivia was about 13 months old, however he referred us to Dr. Kishan. We see Dr. Tsangaris for Pulmonary issues. He has some concerns about the breathing as well and wants to do another sleep study as soon as the cast is on. Olivia had a feeding button that was put in last summer. We tried so hard to keep from doing that but we could not get enough weight on her. When did you first notice her scoliosis? MeredithFrom: mamax5@... <mamax5@...>Subject: Re: New To GroupTo: infantile scoliosis treatment Date: Tuesday, April 10, 2012, 9:08 PM Hi Meredith, We go to Riley Hospital in Indianapolis as well. What doctor do you see? My daughter is only 18 months and she has a trach. So they are concerned about casting due to restricting her breathing. And with the trach it is a big worry for the doctors there. > >> > > >> > Hi, my name is Meredith and I am new to this site. My daughter Olivia is 8 and has a degree of 86. My daughter has a genetic disorder called Cri Du Chat and is in the severe/profound category. She is small and is basically the size of a typical 4 year old. We are going to attempt to cast her for the next three years and then do the fusion surgery. Are there any families out there that have a child who is somewhat involved that have had the casting done? Also, how long have many of you done the casting for? I do not mean to sound naive, but do they correct it with a gradual straightening? Is that why the casts are changed every five months? We will be going to Riley in Indianapolis. > >> > Meredith > >> > > >> > > = > > > > > > > > > > > > TODAY(Beta) • Powered by > > Ex-NFL QB named in huge fraud case > > Jim McMahon is one of seven people facing a $104 million lawsuit brought by the FDIC. > > Privacy Policy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2012 Report Share Posted April 11, 2012 This is from . We see Dr. Kishan as well. We have seen Dr. Jalou in the past for pulmonary and also Dr. Krupp when we are inhouse. We are wanting another doctor for pulmonary. We also see Dr. Didelot at St. 's Childrens. I like him a lot. But he doesn't do casting. Dr. Kishan wanted to do casting on our daughter Isabella but since getting the trach and her size being so small has waited. And Dr. Didelot wants to do rods etc. later on. We have had many sleep studies. I like day shift people in the sleep study area. I cannot wait until the trach is out. > > > >> > > > > >> > Hi, my name is Meredith and I am new to this site. My daughter Olivia is 8 and has a degree of 86. My daughter has a genetic disorder called Cri Du Chat and is in the severe/profound category. She is small and is basically the size of a typical 4 year old. We are going to attempt to cast her for the next three years and then do the fusion surgery. Are there any families out there that have a child who is somewhat involved that have had the casting done? Also, how long have many of you done the casting for? I do not mean to sound naive, but do they correct it with a gradual straightening? Is that why the casts are changed every five months? We will be going to Riley in Indianapolis. > > > >> > Meredith > > > >> > > > > >> > > > > = > > > > > > > > > > > > > > > > > > > > > > > > TODAY(Beta) • Powered by > > > > Ex-NFL QB named in huge fraud case > > > > Jim McMahon is one of seven people facing a $104 million lawsuit brought by the FDIC. > > > > Privacy Policy > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2012 Report Share Posted April 11, 2012 She was about 8 weeks old and I noticed a tiny hump on her shoulder blade area. I thought at first I was holding her sort of crooked on my shoulder to burp her then it kept growing and she kept losing weight. Our pediatrician at the time kept saying she was fine but by 3 months she was well under her birth weight. So I packed her up and headed to Riley emergency room. I knew they wouldn't turn her away and they did testing from head to toe and found so many things we had no idea she even had. She got a neck brace from having cervical stenosis with risk of paralysis, and a back brace to help stop the curving. It didn't help. We didn't get the trach until later. She got a feeding tube, ear tubes, and also a surgeon to fix her cleft palate. Not lip - we knew she had that. We found out that she had a bicuspid aortic valve and also did many genetic tests. Nothing found there. We have 5 kids - none except for her have any problems. She has been curving since then and now up to 50. She is still having trouble gaining weight - 18 months old and 16 pounds 9 ounces. But the g-tube helps out - she was aspirating all her bottles before. She couldn't breastfeed due to the palate and small chin. It was a lot to take in during one trip to riley. We spent most of the first year there. Now we are mostly home and in the trach routine. Use a kangaroo pump etc. Now the curve is looking so scary to me and she cannot sit up by herself and can't sit long without acting like she is in a lot of pain. > > > >> > > > > >> > Hi, my name is Meredith and I am new to this site. My daughter Olivia is 8 and has a degree of 86. My daughter has a genetic disorder called Cri Du Chat and is in the severe/profound category. She is small and is basically the size of a typical 4 year old. We are going to attempt to cast her for the next three years and then do the fusion surgery. Are there any families out there that have a child who is somewhat involved that have had the casting done? Also, how long have many of you done the casting for? I do not mean to sound naive, but do they correct it with a gradual straightening? Is that why the casts are changed every five months? We will be going to Riley in Indianapolis. > > > >> > Meredith > > > >> > > > > >> > > > > = > > > > > > > > > > > > > > > > > > > > > > > > TODAY(Beta) • Powered by > > > > Ex-NFL QB named in huge fraud case > > > > Jim McMahon is one of seven people facing a $104 million lawsuit brought by the FDIC. > > > > Privacy Policy > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2012 Report Share Posted April 11, 2012 Hi ,I really like Dr. Tsangaris for Pulmonary. I believe him to be very knowledgeable, compassionate and he listens and does not discard the information parents give. Olivia was born at St. V's on 86th and spend a few weeks in the NICU. Her Pediatrician has always been with St. V's. She did have a cardiologist for a couple of years but was released when everything healed on its own (yeah!!). After that we switched to Riley for everyone else. We do PT & OT at Riley North twice a week. Did Isabella sleep during the sleep study? How old is Isabella? Olivia has only had one but it was terrible. She could not roll over and the machines made so much noise. She was miserable. She does not usually sleep during the day, only when she does not feel well. I will keep that in mind. When do you think your daughter's trach will come out? Olivia is non mobile but she likes to kick around a lot and there was some concern that she would cause damage and because her immune system is not great they really did not think opening her up every nine months would be optimal either. Is your daughter able to walk on her own. I watched a video of casting done on what appeared to be a typical child and they were flying around as if it wasn't even there. I believe we will experience a slightly different scenario.From: mamax5@... <mamax5@...>Subject: Re: New To Groupinfantile scoliosis treatment Date: Tuesday, April 10, 2012, 9:35 PM This is from . We see Dr. Kishan as well. We have seen Dr. Jalou in the past for pulmonary and also Dr. Krupp when we are inhouse. We are wanting another doctor for pulmonary. We also see Dr. Didelot at St. 's Childrens. I like him a lot. But he doesn't do casting. Dr. Kishan wanted to do casting on our daughter Isabella but since getting the trach and her size being so small has waited. And Dr. Didelot wants to do rods etc. later on. We have had many sleep studies. I like day shift people in the sleep study area. I cannot wait until the trach is out. > > > >> > > > > >> > Hi, my name is Meredith and I am new to this site. My daughter Olivia is 8 and has a degree of 86. My daughter has a genetic disorder called Cri Du Chat and is in the severe/profound category. She is small and is basically the size of a typical 4 year old. We are going to attempt to cast her for the next three years and then do the fusion surgery. Are there any families out there that have a child who is somewhat involved that have had the casting done? Also, how long have many of you done the casting for? I do not mean to sound naive, but do they correct it with a gradual straightening? Is that why the casts are changed every five months? We will be going to Riley in Indianapolis. > > > >> > Meredith > > > >> > > > > >> > > > > = > > > > > > > > > > > > > > > > > > > > > > > > TODAY(Beta) • Powered by > > > > Ex-NFL QB named in huge fraud case > > > > Jim McMahon is one of seven people facing a $104 million lawsuit brought by the FDIC. > > > > Privacy Policy > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2012 Report Share Posted April 11, 2012 Wow, what an experience. Sorry you had to go through that. It can make you feel a little crazy when you know there is something wrong and yet no one listens. We knew something was going on with Olivia during the pregnancy. Of course back then we were worried about her arrthymia not a genetic disorder. We too have had problems getting weight on Olivia. I breast fed or tried to for seven months and then went to formula, then thickened formula, which really helped with reflux. She gained weight but not enough. She got her feeding tube last summer at age 7.5. We have had to try a couple of foods because some of them upset her stomach. We did Peptamen Jr. 1.5 and had a lot of success with gain but when they switched the formula for the new packaging it caused her problems with vomiting so now we are doing Peptide 1.5. She has gained six pounds since December but with the weight gain came the worsening of her scoliosis. Olivia's back looks really bad too. (86) It humps to one side. We have to put her in a sitting position with crossed legs and arms down for he to be able to sit on her own, but she cannot hold it. You are busy with five kiddos. I only have two girls.From: mamax5@... <mamax5@...>Subject: Re: New To Groupinfantile scoliosis treatment Date: Tuesday, April 10, 2012, 9:42 PM She was about 8 weeks old and I noticed a tiny hump on her shoulder blade area. I thought at first I was holding her sort of crooked on my shoulder to burp her then it kept growing and she kept losing weight. Our pediatrician at the time kept saying she was fine but by 3 months she was well under her birth weight. So I packed her up and headed to Riley emergency room. I knew they wouldn't turn her away and they did testing from head to toe and found so many things we had no idea she even had. She got a neck brace from having cervical stenosis with risk of paralysis, and a back brace to help stop the curving. It didn't help. We didn't get the trach until later. She got a feeding tube, ear tubes, and also a surgeon to fix her cleft palate. Not lip - we knew she had that. We found out that she had a bicuspid aortic valve and also did many genetic tests. Nothing found there. We have 5 kids - none except for her have any problems. She has been curving since then and now up to 50. She is still having trouble gaining weight - 18 months old and 16 pounds 9 ounces. But the g-tube helps out - she was aspirating all her bottles before. She couldn't breastfeed due to the palate and small chin. It was a lot to take in during one trip to riley. We spent most of the first year there. Now we are mostly home and in the trach routine. Use a kangaroo pump etc. Now the curve is looking so scary to me and she cannot sit up by herself and can't sit long without acting like she is in a lot of pain. > > > >> > > > > >> > Hi, my name is Meredith and I am new to this site. My daughter Olivia is 8 and has a degree of 86. My daughter has a genetic disorder called Cri Du Chat and is in the severe/profound category. She is small and is basically the size of a typical 4 year old. We are going to attempt to cast her for the next three years and then do the fusion surgery. Are there any families out there that have a child who is somewhat involved that have had the casting done? Also, how long have many of you done the casting for? I do not mean to sound naive, but do they correct it with a gradual straightening? Is that why the casts are changed every five months? We will be going to Riley in Indianapolis. > > > >> > Meredith > > > >> > > > > >> > > > > = > > > > > > > > > > > > > > > > > > > > > > > > TODAY(Beta) • Powered by > > > > Ex-NFL QB named in huge fraud case > > > > Jim McMahon is one of seven people facing a $104 million lawsuit brought by the FDIC. > > > > Privacy Policy > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2012 Report Share Posted April 17, 2012 , Welcome to the group. I know there are moms on here with kids with g-tubes who have successfully been casted. I don't know about a trach. I would call heather at ISOP and chat with her. I think that go to see a very experienced dr such as SLC or Rochester. There are a couple others with a TON of experience but I don't know their initials. I would chat with heather. Good Luck! Jenn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2012 Report Share Posted April 20, 2012 Hi , I hope others have chimed in...Please keep us posted on progress, if possible and let me know if I can help. HRH () > Hi, my name is and just found this group. My daughter, Isabella, > has a curve of 50 degrees at this time. She has many different issues > going on as well healthwise. One being a trach and also a g tube. We > have been playing the wait and see thing with different doctors waiting to > do surgery on her but we would like to find an alternative to just placing > metal rods in her. She is 18 months old and having breathing trouble from > the curving. She is a tiny little girl weighing in at 16 pounds 9 > ounces. If any one has done casting with a trach and g-tube please let me > know. We are scared either way - with airway issues. Thanks so much!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2012 Report Share Posted April 20, 2012 I hope you get some answers soon. You all have been through so much already. I think consults from a few super experienced Early Treatment docs is the way to go with such a complicated and quick progressing case. Call me anytime. HRH > She was about 8 weeks old and I noticed a tiny hump on her shoulder blade > area. I thought at first I was holding her sort of crooked on my shoulder > to burp her then it kept growing and she kept losing weight. Our > pediatrician at the time kept saying she was fine but by 3 months she was > well under her birth weight. So I packed her up and headed to Riley > emergency room. I knew they wouldn't turn her away and they did testing > from head to toe and found so many things we had no idea she even had. > She got a neck brace from having cervical stenosis with risk of paralysis, > and a back brace to help stop the curving. It didn't help. We didn't get > the trach until later. She got a feeding tube, ear tubes, and also a > surgeon to fix her cleft palate. Not lip - we knew she had that. We > found out that she had a bicuspid aortic valve and also did many genetic > tests. Nothing found there. We have 5 kids - none except for her have > any problems. She has been curving since then and now up to 50. She is > still having trouble gaining weight - 18 months old and 16 pounds 9 > ounces. But the g-tube helps out - she was aspirating all her bottles > before. She couldn't breastfeed due to the palate and small chin. It was > a lot to take in during one trip to riley. We spent most of the first > year there. Now we are mostly home and in the trach routine. Use a > kangaroo pump etc. Now the curve is looking so scary to me and she cannot > sit up by herself and can't sit long without acting like she is in a lot > of pain. > > >> >> > >> > >> >> > >> > Hi, my name is Meredith and I am new to this site. My daughter >> Olivia is 8 and has a degree of 86. My daughter has a genetic >> disorder called Cri Du Chat and is in the severe/profound >> category. She is small and is basically the size of a typical 4 >> year old. We are going to attempt to cast her for the next three >> years and then do the fusion surgery. Are there any families out >> there that have a child who is somewhat involved that have had >> the casting done? Also, how long have many of you done the >> casting for? I do not mean to sound naive, but do they correct >> it with a gradual straightening? Is that why the casts are >> changed every five months? We will be going to Riley in >> Indianapolis. >> >> > >> > Meredith >> >> > >> > >> >> > >> >> >> > > = >> >> > > >> >> > > >> >> > > >> >> > > >> >> > > >> >> > > TODAY(Beta) • Powered by >> >> > > Ex-NFL QB named in huge fraud case >> >> > > Jim McMahon is one of seven people facing a $104 million lawsuit >> brought by the FDIC. >> >> > > Privacy Policy >> >> > >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2012 Report Share Posted April 24, 2012 Hi , Just wanted to touch base with you. We were waiting on you to return from your trip. We Do Not want to see Dr. Kishan for her back. You had spoken about helping us get a packet together to send to some of the better, more experienced doctors to take a look at Isabella and see if there was anything they could offer. I did all the reading and watching of videos you recommended. I am ready to get a packet together of her medical records as well as x-rays. I would like to get started on this chapter for her. Waiting isn't the answer for Isabella. Any advice or help would be so much appreciated!! Most of the kids on the group do not have the combination of problems Isabella has. The trach looks like it might prove to be tricky to apply the cast in the first place. I am hoping there is a doctor out there that has experience with trach'ed children. Thank you for everything, Brennan and Isabella Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2012 Report Share Posted May 4, 2012 Welcome to the group! Please read " Growth as a corrective force in the early treatment of progressive infantile scoliosis, " by Mehta, MD, FRCS...It can be found on the Resource page of www.infantilescoliosis.org Also, view A New Direction DVD when you get a chance. Good luck on the 3rd! Please keep us posted, if possible. HRH > Hello, I am new to the group, thank you for letting me join. My son has > metatropic bone dysplasia and we go and meet with doctors at Shriners > Children Hospital in Chicago on May 3. The dysplasia has caused him to > have kyphoscoliosis. He has a thoracic curve at 90 degrees and a focal > curve at 49 degrees. I was wondering if anyone could give me any idea on > what I should expect. Before he was being seen at Riley and they had > mentioned casting but never really gave me any info on the process, so I > am just full of questions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2012 Report Share Posted June 22, 2012 Hi, My name s pam sons nameis Julius he is 7yrs.old and has DS.We are from florida and i feel like we have been tossed around when it comes to his medical care and my questions im hoping to learn from other familys .... Quote Link to comment Share on other sites More sharing options...
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