Guest guest Posted September 4, 2010 Report Share Posted September 4, 2010 Thanks.Sent from my BlackBerry® wireless handheldFrom: svtmustang305 <svtmustang305@...>Sender: infantile scoliosis treatment Date: Sat, 04 Sep 2010 16:52:52 +0000<infantile scoliosis treatment >Reply infantile scoliosis treatment Subject: Re: Looking for hope Hi I live in Northern Ontario and we started by going to Shriners in Montreal more than 3 1/2 years ago. They began with bracing but when that didn't work the doctor there referred us to Sick Kids in Toronto because the doctor there had more experience with cases similar to my daughter. If you've sent in an application to Shriners in Montreal, call there and follow up. They were wonderful with us. My daughter sees various specialties at Sick Kids and they are wonderful too but it can take a little longer to get an appointment. I hope this helps.> > > > > Hi everyone. My son copper was diagnosed at 4 months and the doctor says to wait and see what happens. What are your thoughts? His curvature is already 60*. I want to seek a second opinion, but an unsure of where I should look here in Canada. > > > I like hearing the success stories and and seeing that maybe there is hope. > > > Keeley > > > Sent from my BlackBerry® wireless handheld> > > > > > ------------------------------------> > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2010 Report Share Posted September 5, 2010 There is hope... especially since your son is soooo young! It's very important to catch this early. I wouldn't wait, especially since the curve is very high, but do want to know if they did an MRI on your son. They will usually not cast unless an MRI is done to rule out other problems. You could get started on that. There are other parents on here from Canada so hopefully you'll hear from one of them! Don't wait!!! Patty, mom of Isabella, 3 years old, in 7th scoli cast (Rochester) & mom to (9) & Evan(6)From: "kfaul@..." <kfaul@...>infantile scoliosis treatment Sent: Fri, September 3, 2010 12:33:46 PMSubject: Looking for hope Hi everyone. My son copper was diagnosed at 4 months and the doctor says to wait and see what happens. What are your thoughts? His curvature is already 60*. I want to seek a second opinion, but an unsure of where I should look here in Canada. I like hearing the success stories and and seeing that maybe there is hope. Keeley Sent from my BlackBerry® wireless handheld------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2010 Report Share Posted September 5, 2010 A brace will only hold the curve and that's if it's made right. We were told to try bracing and Isabella got worse because the brace was made wrong. The brace will not fix your son but I'm not sure how young they start casting. Patty, mom of Isabella, 3 years old, in 7th scoli cast (Rochester) & mom to (9) & Evan(6)From: "kfaul@..." <kfaul@...>infantile scoliosis treatment Sent: Fri, September 3, 2010 1:19:32 PMSubject: Re: Looking for hope I am in Saskatchewan. I have contacted the shriners in Montreal. Copper is 8 months old now. I hope that they get back to us soon. I will contact the Toronto children's hospital as well. I have heard lots about Mehta casting. My ortho said that she prefers casting to bracing with toddlers. Sent from my BlackBerry® wireless handheldFrom: <candice_welch85@...> Sender: infantile scoliosis treatment Date: Fri, 03 Sep 2010 09:52:49 -0700infantile scoliosis treatment <infantile scoliosis treatment >Reply infantile scoliosis treatment Subject: Re: Looking for hope Hello where in Canada do you live ? I live in Vancouver bc we currently arnt casting but my son is in a brace. The only hospital in Canada doing casting is Toronto sick kids. If you are in bc the closest hospital is Shriners Portland. We dicided to brace my son because he has other issues with his muscles. If we see any change in his curve we will be heading to Portland Shriners. I would say see another Dr because 60* is very high and any higher he may have problems with his lungs. I'm no. Sure about casting at 4 months.. I think there is a mom with a little one in a cast but not sure. If you can atleast get a brace for now if he's too young and in a few months cast asap. Mommy to Thaddeus Sent from my iPhone On Sep 3, 2010, at 9:33 AM, kfaul@... wrote: > Hi everyone. My son copper was diagnosed at 4 months and the doctor says to wait and see what happens. What are your thoughts? His curvature is already 60*. I want to seek a second opinion, but an unsure of where I should look here in Canada. > I like hearing the success stories and and seeing that maybe there is hope. > Keeley > Sent from my BlackBerry® wireless handheld > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2010 Report Share Posted September 5, 2010 No MRI yet. Dr wants to wait until he is a year b/c of the anesthesia.Sent from my BlackBerry® wireless handheldFrom: Patty Bowen <bowenpatty@...>Sender: infantile scoliosis treatment Date: Sun, 05 Sep 2010 12:28:29 -0700 (PDT)<infantile scoliosis treatment >Reply infantile scoliosis treatment Subject: Re: Looking for hope There is hope... especially since your son is soooo young! It's very important to catch this early. I wouldn't wait, especially since the curve is very high, but do want to know if they did an MRI on your son. They will usually not cast unless an MRI is done to rule out other problems. You could get started on that. There are other parents on here from Canada so hopefully you'll hear from one of them! Don't wait!!! Patty, mom of Isabella, 3 years old, in 7th scoli cast (Rochester) & mom to (9) & Evan(6)From: "kfaul@..." <kfaul@...>infantile scoliosis treatment Sent: Fri, September 3, 2010 12:33:46 PMSubject: Looking for hopeHi everyone. My son copper was diagnosed at 4 months and the doctor says to wait and see what happens. What are your thoughts? His curvature is already 60*. I want to seek a second opinion, but an unsure of where I should look here in Canada. I like hearing the success stories and and seeing that maybe there is hope. Keeley Sent from my BlackBerry® wireless handheld------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2010 Report Share Posted September 5, 2010 Info on the MRI. Unfotunately my son had more than one MRI on his brain before age one so I know they can be put under. Didn't you say your son was 4 months? I don't think was that young (also brain MRI is shorter than spine ) I think he was 9 months.Maybe you could ask around about the age factor??? -Tame Sent from my iPhoneOn Sep 5, 2010, at 3:32 PM, kfaul@... wrote: No MRI yet. Dr wants to wait until he is a year b/c of the anesthesia.Sent from my BlackBerry® wireless handheldFrom: Patty Bowen <bowenpatty@...> Sender: infantile scoliosis treatment Date: Sun, 05 Sep 2010 12:28:29 -0700 (PDT)<infantile scoliosis treatment >Reply infantile scoliosis treatment Subject: Re: Looking for hope There is hope... especially since your son is soooo young! It's very important to catch this early. I wouldn't wait, especially since the curve is very high, but do want to know if they did an MRI on your son. They will usually not cast unless an MRI is done to rule out other problems. You could get started on that. There are other parents on here from Canada so hopefully you'll hear from one of them! Don't wait!!! Patty, mom of Isabella, 3 years old, in 7th scoli cast (Rochester) & mom to (9) & Evan(6)From: "kfaul@..." <kfaul@...>infantile scoliosis treatment Sent: Fri, September 3, 2010 12:33:46 PMSubject: Looking for hope Hi everyone. My son copper was diagnosed at 4 months and the doctor says to wait and see what happens. What are your thoughts? His curvature is already 60*. I want to seek a second opinion, but an unsure of where I should look here in Canada. I like hearing the success stories and and seeing that maybe there is hope. Keeley Sent from my BlackBerry® wireless handheld------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2010 Report Share Posted September 5, 2010 MRI 's don't last toooooo long. Our sone was always back in a half hour I would say... I'll ask my husband what time frame he believes is accurate. Surely there are kids put under before a year. We tracked bens head growth from 6 months to a year and a half before surgery. I don't have my medical book I keep on him at home bc I've been getting records together at work... Otherwise I could look it up. I'll have to look on Tuesday and get back to you.-TameSent from my iPhoneOn Sep 5, 2010, at 4:23 PM, kfaul@... wrote: My son is now 7 1/2 months. He was diagnosed at 4 months. I will have to ask why they want to wait. They want to do an MRI on his spine and brain. Sent from my BlackBerry® wireless handheldFrom: Tame Olson <dazies2001@...> Sender: infantile scoliosis treatment Date: Sun, 05 Sep 2010 14:04:03 -0700 (PDT)infantile scoliosis treatment <infantile scoliosis treatment >Reply infantile scoliosis treatment Subject: Re: Looking for hope Info on the MRI. Unfotunately my son had more than one MRI on his brain before age one so I know they can be put under. Didn't you say your son was 4 months? I don't think was that young (also brain MRI is shorter than spine ) I think he was 9 months.Maybe you could ask around about the age factor??? -Tame Sent from my iPhoneOn Sep 5, 2010, at 3:32 PM, kfaul@... wrote: No MRI yet. Dr wants to wait until he is a year b/c of the anesthesia.Sent from my BlackBerry® wireless handheldFrom: Patty Bowen <bowenpatty@...> Sender: infantile scoliosis treatment Date: Sun, 05 Sep 2010 12:28:29 -0700 (PDT)<infantile scoliosis treatment >Reply infantile scoliosis treatment Subject: Re: Looking for hope There is hope... especially since your son is soooo young! It's very important to catch this early. I wouldn't wait, especially since the curve is very high, but do want to know if they did an MRI on your son. They will usually not cast unless an MRI is done to rule out other problems. You could get started on that. There are other parents on here from Canada so hopefully you'll hear from one of them! Don't wait!!! Patty, mom of Isabella, 3 years old, in 7th scoli cast (Rochester) & mom to (9) & Evan(6)From: "kfaul@..." <kfaul@...>infantile scoliosis treatment Sent: Fri, September 3, 2010 12:33:46 PMSubject: Looking for hope Hi everyone. My son copper was diagnosed at 4 months and the doctor says to wait and see what happens. What are your thoughts? His curvature is already 60*. I want to seek a second opinion, but an unsure of where I should look here in Canada. I like hearing the success stories and and seeing that maybe there is hope. Keeley Sent from my BlackBerry® wireless handheld------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2010 Report Share Posted September 5, 2010 My son is now 7 1/2 months. He was diagnosed at 4 months. I will have to ask why they want to wait. They want to do an MRI on his spine and brain. Sent from my BlackBerry® wireless handheldFrom: Tame Olson <dazies2001@...>Sender: infantile scoliosis treatment Date: Sun, 05 Sep 2010 14:04:03 -0700 (PDT)infantile scoliosis treatment <infantile scoliosis treatment >Reply infantile scoliosis treatment Subject: Re: Looking for hope Info on the MRI. Unfotunately my son had more than one MRI on his brain before age one so I know they can be put under. Didn't you say your son was 4 months? I don't think was that young (also brain MRI is shorter than spine ) I think he was 9 months.Maybe you could ask around about the age factor??? -Tame Sent from my iPhoneOn Sep 5, 2010, at 3:32 PM, kfaul@... wrote:No MRI yet. Dr wants to wait until he is a year b/c of the anesthesia.Sent from my BlackBerry® wireless handheldFrom: Patty Bowen <bowenpatty@...>Sender: infantile scoliosis treatment Date: Sun, 05 Sep 2010 12:28:29 -0700 (PDT)<infantile scoliosis treatment >Reply infantile scoliosis treatment Subject: Re: Looking for hope There is hope... especially since your son is soooo young! It's very important to catch this early. I wouldn't wait, especially since the curve is very high, but do want to know if they did an MRI on your son. They will usually not cast unless an MRI is done to rule out other problems. You could get started on that. There are other parents on here from Canada so hopefully you'll hear from one of them! Don't wait!!! Patty, mom of Isabella, 3 years old, in 7th scoli cast (Rochester) & mom to (9) & Evan(6)From: "kfaul@..." <kfaul@...>infantile scoliosis treatment Sent: Fri, September 3, 2010 12:33:46 PMSubject: Looking for hopeHi everyone. My son copper was diagnosed at 4 months and the doctor says to wait and see what happens. What are your thoughts? His curvature is already 60*. I want to seek a second opinion, but an unsure of where I should look here in Canada. I like hearing the success stories and and seeing that maybe there is hope. Keeley Sent from my BlackBerry® wireless handheld------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2010 Report Share Posted September 5, 2010 I would ask why they want to wait. My son had MRI of brain and spine under sedation at 9 mos old. kfaul@... wrote: >No MRI yet. Dr wants to wait until he is a year b/c of the anesthesia. >Sent from my BlackBerry® wireless handheld > > Looking for hope > >Hi everyone. My son copper was diagnosed at 4 months and the doctor says to >wait and see what happens. What are your thoughts? His curvature is already >60*. I want to seek a second opinion, but an unsure of where I should look >here in Canada. > >I like hearing the success stories and and seeing that maybe there is hope. >Keeley >Sent from my BlackBerry® wireless handheld > >------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2010 Report Share Posted September 5, 2010 Thanks. Sent from my BlackBerry® wireless handheldFrom: Tame Olson <dazies2001@...>Sender: infantile scoliosis treatment Date: Sun, 05 Sep 2010 14:20:59 -0700 (PDT)infantile scoliosis treatment <infantile scoliosis treatment >Reply infantile scoliosis treatment Subject: Re: Looking for hope MRI 's don't last toooooo long. Our sone was always back in a half hour I would say... I'll ask my husband what time frame he believes is accurate. Surely there are kids put under before a year. We tracked bens head growth from 6 months to a year and a half before surgery. I don't have my medical book I keep on him at home bc I've been getting records together at work... Otherwise I could look it up. I'll have to look on Tuesday and get back to you.-TameSent from my iPhoneOn Sep 5, 2010, at 4:23 PM, kfaul@... wrote:My son is now 7 1/2 months. He was diagnosed at 4 months. I will have to ask why they want to wait. They want to do an MRI on his spine and brain. Sent from my BlackBerry® wireless handheldFrom: Tame Olson <dazies2001@...>Sender: infantile scoliosis treatment Date: Sun, 05 Sep 2010 14:04:03 -0700 (PDT)infantile scoliosis treatment <infantile scoliosis treatment >Reply infantile scoliosis treatment Subject: Re: Looking for hope Info on the MRI. Unfotunately my son had more than one MRI on his brain before age one so I know they can be put under. Didn't you say your son was 4 months? I don't think was that young (also brain MRI is shorter than spine ) I think he was 9 months.Maybe you could ask around about the age factor??? -Tame Sent from my iPhoneOn Sep 5, 2010, at 3:32 PM, kfaul@... wrote:No MRI yet. Dr wants to wait until he is a year b/c of the anesthesia.Sent from my BlackBerry® wireless handheldFrom: Patty Bowen <bowenpatty@...>Sender: infantile scoliosis treatment Date: Sun, 05 Sep 2010 12:28:29 -0700 (PDT)<infantile scoliosis treatment >Reply infantile scoliosis treatment Subject: Re: Looking for hope There is hope... especially since your son is soooo young! It's very important to catch this early. I wouldn't wait, especially since the curve is very high, but do want to know if they did an MRI on your son. They will usually not cast unless an MRI is done to rule out other problems. You could get started on that. There are other parents on here from Canada so hopefully you'll hear from one of them! Don't wait!!! Patty, mom of Isabella, 3 years old, in 7th scoli cast (Rochester) & mom to (9) & Evan(6)From: "kfaul@..." <kfaul@...>infantile scoliosis treatment Sent: Fri, September 3, 2010 12:33:46 PMSubject: Looking for hopeHi everyone. My son copper was diagnosed at 4 months and the doctor says to wait and see what happens. What are your thoughts? His curvature is already 60*. I want to seek a second opinion, but an unsure of where I should look here in Canada. I like hearing the success stories and and seeing that maybe there is hope. Keeley Sent from my BlackBerry® wireless handheld------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2010 Report Share Posted September 6, 2010 Pierce underwent general anesthesia at 4mos old for a brain MRI kfaul@... wrote: >Thanks. >Sent from my BlackBerry® wireless handheld > > Looking for hope > >Hi everyone. My son copper was diagnosed at 4 months and the doctor says to wait and see what happens. What are your thoughts? His curvature is already 60*. I want to seek a second opinion, but an unsure of where I should look here in Canada. >I like hearing the success stories and and seeing that maybe there is hope. >Keeley >Sent from my BlackBerry® wireless handheld > >------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2010 Report Share Posted September 6, 2010 Pierce underwent general anesthesia at 4months old for a brain MRI - it lasted 40minutes. He also had general anesthesia at 7months old for an upper endoscopy anf flex sigmoidoscopy. I would definitely figure out the road for getting a second opinion and push for the MRI. That's garbage, in my opinion, that he's too young for anesthesia. Good luck. Tame... I saw you put something about tracking your son's head measurements... was all ok? I only ask because Pierce is having a CT on Tuesday because his head circ is waaaay off the chart (19.25 " at 8.5mos old)... our pedi thinks poss hydrocephalus? Thanks! kfaul@... wrote: >Thanks. >Sent from my BlackBerry® wireless handheld > > Looking for hope > >Hi everyone. My son copper was diagnosed at 4 months and the doctor says to wait and see what happens. What are your thoughts? His curvature is already 60*. I want to seek a second opinion, but an unsure of where I should look here in Canada. >I like hearing the success stories and and seeing that maybe there is hope. >Keeley >Sent from my BlackBerry® wireless handheld > >------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2010 Report Share Posted September 6, 2010 He had a shunt placement for only a couple months. He had fluid in the frontal lobe (frontal bossing) not the venticals. I think they termed it communicative hydrocephalli. The doc thinks maybe he has some scarring in the exit veins at the base of his neck slowing flow. I think that's possible but I also think he had sotos syndrom which we weren't aware of yet and one of the symptoms is a large head. All I know is his shunt got infected, it was removed, and his head hasn't grown since:) I hope pierce doesn't have to go through that. It isn't fun. What did the MRI show? Don't you live in louisiana too? Where do you go for medical issues? We had some great doctors during that time period in new Orleans. Our geneticist was the bomb. Good luck! What r the rest of pierces measurements for hieght and weight? s head was like the98% and height / weight around 50. -tame Sent from my iPhone On Sep 6, 2010, at 12:03 AM, " R. Fiegel " <laura.fiegel@...> wrote: Pierce underwent general anesthesia at 4months old for a brain MRI - it lasted 40minutes. He also had general anesthesia at 7months old for an upper endoscopy anf flex sigmoidoscopy. I would definitely figure out the road for getting a second opinion and push for the MRI. That's garbage, in my opinion, that he's too young for anesthesia. Good luck. Tame... I saw you put something about tracking your son's head measurements... was all ok? I only ask because Pierce is having a CT on Tuesday because his head circ is waaaay off the chart (19.25 " at 8.5mos old)... our pedi thinks poss hydrocephalus? Thanks! kfaul@... wrote: Thanks. Sent from my BlackBerry® wireless handheld Looking for hope Hi everyone. My son copper was diagnosed at 4 months and the doctor says to wait and see what happens. What are your thoughts? His curvature is already 60*. I want to seek a second opinion, but an unsure of where I should look here in Canada. I like hearing the success stories and and seeing that maybe there is hope. Keeley Sent from my BlackBerry® wireless handheld ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2010 Report Share Posted September 6, 2010 s head measured 20 or 21 cm it about 22 months I think. I'll have to look in his records tommorrow. Sent from my iPhone On Sep 6, 2010, at 12:03 AM, " R. Fiegel " <laura.fiegel@...> wrote: Pierce underwent general anesthesia at 4months old for a brain MRI - it lasted 40minutes. He also had general anesthesia at 7months old for an upper endoscopy anf flex sigmoidoscopy. I would definitely figure out the road for getting a second opinion and push for the MRI. That's garbage, in my opinion, that he's too young for anesthesia. Good luck. Tame... I saw you put something about tracking your son's head measurements... was all ok? I only ask because Pierce is having a CT on Tuesday because his head circ is waaaay off the chart (19.25 " at 8.5mos old)... our pedi thinks poss hydrocephalus? Thanks! kfaul@... wrote: Thanks. Sent from my BlackBerry® wireless handheld Looking for hope Hi everyone. My son copper was diagnosed at 4 months and the doctor says to wait and see what happens. What are your thoughts? His curvature is already 60*. I want to seek a second opinion, but an unsure of where I should look here in Canada. I like hearing the success stories and and seeing that maybe there is hope. Keeley Sent from my BlackBerry® wireless handheld ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2010 Report Share Posted September 6, 2010 Sorry inches.... Not awake yet. He wears the biggest hat in our family. We buy cool hats for him when we visit the French quarter in new Orleans! Sent from my iPhone On Sep 6, 2010, at 7:29 AM, Tame Olson <dazies2001@...> wrote: s head measured 20 or 21 cm it about 22 months I think. I'll have to look in his records tommorrow. Sent from my iPhone On Sep 6, 2010, at 12:03 AM, " R. Fiegel " <laura.fiegel@...> wrote: Pierce underwent general anesthesia at 4months old for a brain MRI - it lasted 40minutes. He also had general anesthesia at 7months old for an upper endoscopy anf flex sigmoidoscopy. I would definitely figure out the road for getting a second opinion and push for the MRI. That's garbage, in my opinion, that he's too young for anesthesia. Good luck. Tame... I saw you put something about tracking your son's head measurements... was all ok? I only ask because Pierce is having a CT on Tuesday because his head circ is waaaay off the chart (19.25 " at 8.5mos old)... our pedi thinks poss hydrocephalus? Thanks! kfaul@... wrote: Thanks. Sent from my BlackBerry® wireless handheld Looking for hope Hi everyone. My son copper was diagnosed at 4 months and the doctor says to wait and see what happens. What are your thoughts? His curvature is already 60*. I want to seek a second opinion, but an unsure of where I should look here in Canada. I like hearing the success stories and and seeing that maybe there is hope. Keeley Sent from my BlackBerry® wireless handheld ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2010 Report Share Posted September 6, 2010 We are in Kenner (10 min outside of New Orleans). Our pediatrician is in Hammond bc we lived there from post-Katrina until May of this year. I would love to know some of the docs you've used! Our GI is in Baton Rouge. Our initial ortho is at Ochsner (main campus) and we had a 2nd ortho opinion in Baton Rouge. As for his measurements... his head is 100th +... like I said its 19.25 " which is 95th for a 14 month old and he is only 8.5 months old!! His head was right around 40-50th from birth untilr Tame Olson <dazies2001@...> wrote: >He had a shunt placement for only a couple months. He had fluid in the frontal lobe (frontal bossing) not the venticals. I think they termed it communicative hydrocephalli. The doc thinks maybe he has some scarring in the exit veins at the base of his neck slowing flow. I think that's possible but I also think he had sotos syndrom which we weren't aware of yet and one of the symptoms is a large head. All I know is his shunt got infected, it was removed, and his head hasn't grown since:) I hope pierce doesn't have to go through that. It isn't fun. What did the MRI show? Don't you live in louisiana too? Where do you go for medical issues? We had some great doctors during that time period in new Orleans. Our geneticist was the bomb. Good luck! > >What r the rest of pierces measurements for hieght and weight? s head was like the98% and height / weight around 50. >-tame > >Sent from my iPhone > >On Sep 6, 2010, at 12:03 AM, " R. Fiegel " <laura.fiegel@...> wrote: > >Pierce underwent general anesthesia at 4months old for a brain MRI - it lasted 40minutes. He also had general anesthesia at 7months old for an upper endoscopy anf flex sigmoidoscopy. > >I would definitely figure out the road for getting a second opinion and push for the MRI. That's garbage, in my opinion, that he's too young for anesthesia. > >Good luck. > >Tame... I saw you put something about tracking your son's head measurements... was all ok? I only ask because Pierce is having a CT on Tuesday because his head circ is waaaay off the chart (19.25 " at 8.5mos old)... our pedi thinks poss hydrocephalus? Thanks! > >kfaul@... wrote: > >Thanks. >Sent from my BlackBerry® wireless handheld > > Looking for hope > >Hi everyone. My son copper was diagnosed at 4 months and the doctor says to wait and see what happens. What are your thoughts? His curvature is already 60*. I want to seek a second opinion, but an unsure of where I should look here in Canada. >I like hearing the success stories and and seeing that maybe there is hope. >Keeley >Sent from my BlackBerry® wireless handheld > >------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2010 Report Share Posted September 6, 2010 *birth until he was 4 months old then he jumped to 75th at which point he had the brain MRI and everything appeared normal. And now he had had a MAJOR jump to 100th+... His height has stayed around 50th since birth... His weight got as low as the 3rd (almost got an FTT diagnosis due to his GERD) and is now around 25th-30th... I think his head would measure even larger if it wasn't flat on the right side... I'm just a little nervous/anxious if it is hydrocephalus and he needs a shunt etc. How was that surgery? What's the recovery like? Did you have a neuro here in NOLA? Thanks! Tame Olson <dazies2001@...> wrote: >He had a shunt placement for only a couple months. He had fluid in the frontal lobe (frontal bossing) not the venticals. I think they termed it communicative hydrocephalli. The doc thinks maybe he has some scarring in the exit veins at the base of his neck slowing flow. I think that's possible but I also think he had sotos syndrom which we weren't aware of yet and one of the symptoms is a large head. All I know is his shunt got infected, it was removed, and his head hasn't grown since:) I hope pierce doesn't have to go through that. It isn't fun. What did the MRI show? Don't you live in louisiana too? Where do you go for medical issues? We had some great doctors during that time period in new Orleans. Our geneticist was the bomb. Good luck! > >What r the rest of pierces measurements for hieght and weight? s head was like the98% and height / weight around 50. >-tame > >Sent from my iPhone > >On Sep 6, 2010, at 12:03 AM, " R. Fiegel " <laura.fiegel@...> wrote: > >Pierce underwent general anesthesia at 4months old for a brain MRI - it lasted 40minutes. He also had general anesthesia at 7months old for an upper endoscopy anf flex sigmoidoscopy. > >I would definitely figure out the road for getting a second opinion and push for the MRI. That's garbage, in my opinion, that he's too young for anesthesia. > >Good luck. > >Tame... I saw you put something about tracking your son's head measurements... was all ok? I only ask because Pierce is having a CT on Tuesday because his head circ is waaaay off the chart (19.25 " at 8.5mos old)... our pedi thinks poss hydrocephalus? Thanks! > >kfaul@... wrote: > >Thanks. >Sent from my BlackBerry® wireless handheld > > Looking for hope > >Hi everyone. My son copper was diagnosed at 4 months and the doctor says to wait and see what happens. What are your thoughts? His curvature is already 60*. I want to seek a second opinion, but an unsure of where I should look here in Canada. >I like hearing the success stories and and seeing that maybe there is hope. >Keeley >Sent from my BlackBerry® wireless handheld > >------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2010 Report Share Posted September 6, 2010 I'll email you off the site later today. Our ortho was from Oschner and he was TERRIBLE. But we see aothed doc outa new o that's awesome. All our docs are from there, neurosugeon included. Sent from my iPhone On Sep 6, 2010, at 9:05 AM, " R. Fiegel " <laura.fiegel@...> wrote: *birth until he was 4 months old then he jumped to 75th at which point he had the brain MRI and everything appeared normal. And now he had had a MAJOR jump to 100th+... His height has stayed around 50th since birth... His weight got as low as the 3rd (almost got an FTT diagnosis due to his GERD) and is now around 25th-30th... I think his head would measure even larger if it wasn't flat on the right side... I'm just a little nervous/anxious if it is hydrocephalus and he needs a shunt etc. How was that surgery? What's the recovery like? Did you have a neuro here in NOLA? Thanks! Tame Olson <dazies2001@...> wrote: He had a shunt placement for only a couple months. He had fluid in the frontal lobe (frontal bossing) not the venticals. I think they termed it communicative hydrocephalli. The doc thinks maybe he has some scarring in the exit veins at the base of his neck slowing flow. I think that's possible but I also think he had sotos syndrom which we weren't aware of yet and one of the symptoms is a large head. All I know is his shunt got infected, it was removed, and his head hasn't grown since:) I hope pierce doesn't have to go through that. It isn't fun. What did the MRI show? Don't you live in louisiana too? Where do you go for medical issues? We had some great doctors during that time period in new Orleans. Our geneticist was the bomb. Good luck! What r the rest of pierces measurements for hieght and weight? s head was like the98% and height / weight around 50. -tame Sent from my iPhone On Sep 6, 2010, at 12:03 AM, " R. Fiegel " <laura.fiegel@...> wrote: Pierce underwent general anesthesia at 4months old for a brain MRI - it lasted 40minutes. He also had general anesthesia at 7months old for an upper endoscopy anf flex sigmoidoscopy. I would definitely figure out the road for getting a second opinion and push for the MRI. That's garbage, in my opinion, that he's too young for anesthesia. Good luck. Tame... I saw you put something about tracking your son's head measurements... was all ok? I only ask because Pierce is having a CT on Tuesday because his head circ is waaaay off the chart (19.25 " at 8.5mos old)... our pedi thinks poss hydrocephalus? Thanks! kfaul@... wrote: Thanks. Sent from my BlackBerry® wireless handheld Looking for hope Hi everyone. My son copper was diagnosed at 4 months and the doctor says to wait and see what happens. What are your thoughts? His curvature is already 60*. I want to seek a second opinion, but an unsure of where I should look here in Canada. I like hearing the success stories and and seeing that maybe there is hope. Keeley Sent from my BlackBerry® wireless handheld ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2010 Report Share Posted September 6, 2010 Also he was 14 months at time of sugery Sent from my iPhone On Sep 6, 2010, at 9:05 AM, " R. Fiegel " <laura.fiegel@...> wrote: *birth until he was 4 months old then he jumped to 75th at which point he had the brain MRI and everything appeared normal. And now he had had a MAJOR jump to 100th+... His height has stayed around 50th since birth... His weight got as low as the 3rd (almost got an FTT diagnosis due to his GERD) and is now around 25th-30th... I think his head would measure even larger if it wasn't flat on the right side... I'm just a little nervous/anxious if it is hydrocephalus and he needs a shunt etc. How was that surgery? What's the recovery like? Did you have a neuro here in NOLA? Thanks! Tame Olson <dazies2001@...> wrote: He had a shunt placement for only a couple months. He had fluid in the frontal lobe (frontal bossing) not the venticals. I think they termed it communicative hydrocephalli. The doc thinks maybe he has some scarring in the exit veins at the base of his neck slowing flow. I think that's possible but I also think he had sotos syndrom which we weren't aware of yet and one of the symptoms is a large head. All I know is his shunt got infected, it was removed, and his head hasn't grown since:) I hope pierce doesn't have to go through that. It isn't fun. What did the MRI show? Don't you live in louisiana too? Where do you go for medical issues? We had some great doctors during that time period in new Orleans. Our geneticist was the bomb. Good luck! What r the rest of pierces measurements for hieght and weight? s head was like the98% and height / weight around 50. -tame Sent from my iPhone On Sep 6, 2010, at 12:03 AM, " R. Fiegel " <laura.fiegel@...> wrote: Pierce underwent general anesthesia at 4months old for a brain MRI - it lasted 40minutes. He also had general anesthesia at 7months old for an upper endoscopy anf flex sigmoidoscopy. I would definitely figure out the road for getting a second opinion and push for the MRI. That's garbage, in my opinion, that he's too young for anesthesia. Good luck. Tame... I saw you put something about tracking your son's head measurements... was all ok? I only ask because Pierce is having a CT on Tuesday because his head circ is waaaay off the chart (19.25 " at 8.5mos old)... our pedi thinks poss hydrocephalus? Thanks! kfaul@... wrote: Thanks. Sent from my BlackBerry® wireless handheld Looking for hope Hi everyone. My son copper was diagnosed at 4 months and the doctor says to wait and see what happens. What are your thoughts? His curvature is already 60*. I want to seek a second opinion, but an unsure of where I should look here in Canada. I like hearing the success stories and and seeing that maybe there is hope. Keeley Sent from my BlackBerry® wireless handheld ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2010 Report Share Posted September 6, 2010 Can't wait for your email... eagerly anticipating it I'm less than thrilled with out ortho at Ochsner too... curious if its the same person! Tame Olson <dazies2001@...> wrote: >I'll email you off the site later today. Our ortho was from Oschner and he was TERRIBLE. But we see aothed doc outa new o that's awesome. All our docs are from there, neurosugeon included. > >Sent from my iPhone > >On Sep 6, 2010, at 9:05 AM, " R. Fiegel " <laura.fiegel@...> wrote: > >*birth until he was 4 months old then he jumped to 75th at which point he had the brain MRI and everything appeared normal. > >And now he had had a MAJOR jump to 100th+... > >His height has stayed around 50th since birth... > >His weight got as low as the 3rd (almost got an FTT diagnosis due to his GERD) and is now around 25th-30th... > >I think his head would measure even larger if it wasn't flat on the right side... > >I'm just a little nervous/anxious if it is hydrocephalus and he needs a shunt etc. How was that surgery? What's the recovery like? Did you have a neuro here in NOLA? > >Thanks! > >Tame Olson <dazies2001@...> wrote: > >He had a shunt placement for only a couple months. He had fluid in the frontal lobe (frontal bossing) not the venticals. I think they termed it communicative hydrocephalli. The doc thinks maybe he has some scarring in the exit veins at the base of his neck slowing flow. I think that's possible but I also think he had sotos syndrom which we weren't aware of yet and one of the symptoms is a large head. All I know is his shunt got infected, it was removed, and his head hasn't grown since:) I hope pierce doesn't have to go through that. It isn't fun. What did the MRI show? Don't you live in louisiana too? Where do you go for medical issues? We had some great doctors during that time period in new Orleans. Our geneticist was the bomb. Good luck! > >What r the rest of pierces measurements for hieght and weight? s head was like the98% and height / weight around 50. >-tame > >Sent from my iPhone > >On Sep 6, 2010, at 12:03 AM, " R. Fiegel " <laura.fiegel@...> wrote: > >Pierce underwent general anesthesia at 4months old for a brain MRI - it lasted 40minutes. He also had general anesthesia at 7months old for an upper endoscopy anf flex sigmoidoscopy. > >I would definitely figure out the road for getting a second opinion and push for the MRI. That's garbage, in my opinion, that he's too young for anesthesia. > >Good luck. > >Tame... I saw you put something about tracking your son's head measurements... was all ok? I only ask because Pierce is having a CT on Tuesday because his head circ is waaaay off the chart (19.25 " at 8.5mos old)... our pedi thinks poss hydrocephalus? Thanks! > >kfaul@... wrote: > >Thanks. >Sent from my BlackBerry® wireless handheld > > Looking for hope > >Hi everyone. My son copper was diagnosed at 4 months and the doctor says to wait and see what happens. What are your thoughts? His curvature is already 60*. I want to seek a second opinion, but an unsure of where I should look here in Canada. >I like hearing the success stories and and seeing that maybe there is hope. >Keeley >Sent from my BlackBerry® wireless handheld > >------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2010 Report Share Posted September 6, 2010 You should be able to be seen at Shriners Philly relatively quickly. To expedite matters, you can contact Janet Cerrone (PA to the spine team) at janetcerrone@... or call 1-800-281-4050 and ask to be transferred to her line and leave a message. She has told me to feel free to share her contact info, and she usually returns voicemails and e-mails within 24-48 hours. Good luck!! > > > > > > > Hi everyone. My son copper was diagnosed at 4 months and the doctor says to wait and see what happens. What are your thoughts? His curvature is already 60*. I want to seek a second opinion, but an unsure of where I should look here in Canada. > > > > I like hearing the success stories and and seeing that maybe there is hope. > > > > Keeley > > > > Sent from my BlackBerry® wireless handheld > > > > > > > > ------------------------------------ > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2010 Report Share Posted September 6, 2010 You should be able to be seen at Shriners Philly relatively quickly. To expedite matters, you can contact Janet Cerrone (PA to the spine team) at janetcerrone@... or call 1-800-281-4050 and ask to be transferred to her line and leave a message. She has told me to feel free to share her contact info, and she usually returns voicemails and e-mails within 24-48 hours. Good luck!! > > > > > > > Hi everyone. My son copper was diagnosed at 4 months and the doctor says to wait and see what happens. What are your thoughts? His curvature is already 60*. I want to seek a second opinion, but an unsure of where I should look here in Canada. > > > > I like hearing the success stories and and seeing that maybe there is hope. > > > > Keeley > > > > Sent from my BlackBerry® wireless handheld > > > > > > > > ------------------------------------ > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2010 Report Share Posted September 7, 2010 Thank you. I will have to try them and check into it. I am ready to try what I can fle my son. Everyones encouraging stories are so touching. It is really uplifting to know that there is something that can be done to help our previous angels.Sent from my BlackBerry® wireless handheldFrom: <mariaf305@...>Sender: infantile scoliosis treatment Date: Mon, 06 Sep 2010 19:46:17 +0000<infantile scoliosis treatment >Reply infantile scoliosis treatment Subject: Re: Looking for hope You should be able to be seen at Shriners Philly relatively quickly. To expedite matters, you can contact Janet Cerrone (PA to the spine team) at janetcerrone@... or call 1-800-281-4050 and ask to be transferred to her line and leave a message. She has told me to feel free to share her contact info, and she usually returns voicemails and e-mails within 24-48 hours.Good luck!!> > > > > > > Hi everyone. My son copper was diagnosed at 4 months and the doctor says to wait and see what happens. What are your thoughts? His curvature is already 60*. I want to seek a second opinion, but an unsure of where I should look here in Canada. > > > > I like hearing the success stories and and seeing that maybe there is hope. > > > > Keeley > > > > Sent from my BlackBerry® wireless handheld> > > > > > > > ------------------------------------> > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2010 Report Share Posted September 7, 2010 Hi there I too am from Canada and my son goes to The Hospital for Sick Children in Toronto. He has been in a cast for 14 months and is now in brace. Lynn From: kfaul@... <kfaul@...>Subject: Looking for hopeinfantile scoliosis treatment Received: Friday, September 3, 2010, 9:33 AM Hi everyone. My son copper was diagnosed at 4 months and the doctor says to wait and see what happens. What are your thoughts? His curvature is already 60*. I want to seek a second opinion, but an unsure of where I should look here in Canada. I like hearing the success stories and and seeing that maybe there is hope. Keeley Sent from my BlackBerry® wireless handheld------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2010 Report Share Posted September 7, 2010 Do they recast right away or do the kids get a bit of a break?Sent from my BlackBerry® wireless handheldFrom: Lynn Marsden <lynn_marsden@...>Sender: infantile scoliosis treatment Date: Mon, 06 Sep 2010 16:52:28 -0700 (PDT)<infantile scoliosis treatment >Reply infantile scoliosis treatment Subject: Re: Looking for hope Hi thereI too am from Canada and my son goes to The Hospital for Sick Children in Toronto. He has been in a cast for 14 months and is now in brace.LynnFrom: kfaul@... <kfaul@...>Subject: Looking for hopeinfantile scoliosis treatment Received: Friday, September 3, 2010, 9:33 AMHi everyone. My son copper was diagnosed at 4 months and the doctor says to wait and see what happens. What are your thoughts? His curvature is already 60*. I want to seek a second opinion, but an unsure of where I should look here in Canada. I like hearing the success stories and and seeing that maybe there is hope. Keeley Sent from my BlackBerry® wireless handheld------------------------------------ Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.