Logan

[Guest guest]

Hey everyone =)

My name is and I have a 9 month old son Logan with infantile scoliosis. His curve as of feb 2 was 45 degrees. We have finally been able to get his MRI which detected a syrinx (small) and we go to the pediatric neurosurgeon on Tuesday to see what needs to be done. If we clear him...then we are set to go to the shrinners hospital down in SC. NC does not have the casting treatment...so we will travel to get him help. I would LOVE to be able to ask questions to the group and to you mom and dads having gone through this. Everytime I ask any questions here about casting ---they have no idea what Im talking about. Its frustrating. Im worried about my 9 month old and several episodes of general anesthesia. Im also worried because logan is rotated as well and has a rib hump. He also has torticollis and has been in a helmet to 3 months. I hoping that comes off right at the time when he is suppose to be casted....if they cast him. We are suppose to go

to SC on april 2. So Im hoping to know more by that time. Does anyones lil boy or girl have a syrinx as well? is that something that has to be surgically corrected or do they resolve over time? ughhh soo many questions....

Please respond back...I would LOVE to talk to some mama's and daddy's doing this.

Logan's mama

[Guest guest]

Hi

Welcome to CAST. You have come to the right place for sure. My son has a small syrnx as well, and right now they just monitor it. When and if it gets too large then they made need to "drain" it, but people could live their whole lives with a small syrnx and never know about it. Of course go see the Neurosurgeon and they will give you more specifics. Cast life isn't that much different than everyday normal life. You will have to make a few adjustments and your child will really bounce back quickly. It really is best for you to read a file on here called "what to expect with the first cast" written by Heidi under atatchements. It is all the ins and outs of cast day and cast life. This should answer all your initital questions. We are here to support you and listen and offer any advice. We have been in your shoes and understand. Ask any and all questions. Joanmom to

Hayden 339 degrees down from 62Cast number 4Treated at ish Rite Hospital Dallas, TX

From: Medlin <amanda.medlin@...>infantile scoliosis treatment Sent: Fri, March 26, 2010 7:47:39 PMSubject: Logan

Hey everyone =)

My name is and I have a 9 month old son Logan with infantile scoliosis. His curve as of feb 2 was 45 degrees. We have finally been able to get his MRI which detected a syrinx (small) and we go to the pediatric neurosurgeon on Tuesday to see what needs to be done. If we clear him...then we are set to go to the shrinners hospital down in SC. NC does not have the casting treatment... so we will travel to get him help. I would LOVE to be able to ask questions to the group and to you mom and dads having gone through this. Everytime I ask any questions here about casting ---they have no idea what Im talking about. Its frustrating. Im worried about my 9 month old and several episodes of general anesthesia. Im also worried because logan is rotated as well and has a rib hump. He also has torticollis and has been in a helmet to 3 months. I hoping that comes off right at the time when he is suppose to be casted....if they cast him. We are suppose to go

to SC on april 2. So Im hoping to know more by that time. Does anyones lil boy or girl have a syrinx as well? is that something that has to be surgically corrected or do they resolve over time? ughhh soo many questions... .

Please respond back...I would LOVE to talk to some mama's and daddy's doing this.

Logan's mama

[Guest guest]

Hi ,

Like Joans son, Hayden, our son Noah also has a Syrinx. It was seen through an MRI at 9 months. His is now 4 1/2, we have had a couple more MRIs to monitor it and no change. Our Neurosurgeon told us that it may never change, but they would still monitor it. He started casting at 14 months with a 80 degree curve. He has had a series of 9 cast and now in his 4th brace from Salt Lake City and is currently 16 degrees in brace.

Welcome to the group and best of luck next week in SC.

Noah 4yrs 7mo, 9 casts 4 braces, 80 degress to 16 in brace SLC ROCKS!!!

From: Joan Vallee <hayro1611@...>Subject: Re: Loganinfantile scoliosis treatment Date: Friday, March 26, 2010, 7:12 PM

Hi

Welcome to CAST. You have come to the right place for sure. My son has a small syrnx as well, and right now they just monitor it. When and if it gets too large then they made need to "drain" it, but people could live their whole lives with a small syrnx and never know about it. Of course go see the Neurosurgeon and they will give you more specifics. Cast life isn't that much different than everyday normal life. You will have to make a few adjustments and your child will really bounce back quickly. It really is best for you to read a file on here called "what to expect with the first cast" written by Heidi under atatchements. It is all the ins and outs of cast day and cast life. This should answer all your initital questions. We are here to support you and listen and offer any advice. We have been in your shoes and understand. Ask any and all questions. Joanmom to

Hayden 339 degrees down from 62Cast number 4Treated at ish Rite Hospital Dallas, TX

From: Medlin <amanda.medlin@ ymail.com>infantile scoliosis treatment @groups. comSent: Fri, March 26, 2010 7:47:39 PMSubject: [infantile_scoliosi s] Logan

Hey everyone =)

My name is and I have a 9 month old son Logan with infantile scoliosis. His curve as of feb 2 was 45 degrees. We have finally been able to get his MRI which detected a syrinx (small) and we go to the pediatric neurosurgeon on Tuesday to see what needs to be done. If we clear him...then we are set to go to the shrinners hospital down in SC. NC does not have the casting treatment... so we will travel to get him help. I would LOVE to be able to ask questions to the group and to you mom and dads having gone through this. Everytime I ask any questions here about casting ---they have no idea what Im talking about. Its frustrating. Im worried about my 9 month old and several episodes of general anesthesia. Im also worried because logan is rotated as well and has a rib hump. He also has torticollis and has been in a helmet to 3 months. I hoping that comes off right at the time when he is suppose to be casted....if they cast him. We are suppose to go

to SC on april 2. So Im hoping to know more by that time. Does anyones lil boy or girl have a syrinx as well? is that something that has to be surgically corrected or do they resolve over time? ughhh soo many questions... .

Please respond back...I would LOVE to talk to some mama's and daddy's doing this.

Logan's mama

[Guest guest]

Hi ! Welcome!My son Bexon has a small syrinx, too, and we have just had the 1 year follow up MRI and it has NOT grown at all! I just wanted to give you some hope that it can very likely never grow, it may be something you just have to stay on top of. I have been told that it could be an "incidental finding"- probably connected to the scoli, yes, but hopefully, it will never cause a problem in his life. We plan to ask our son when he is older to tell us if he ever feels any tingling in his hands or feet, etc...to tell us. Knowing him, he will anyway! : )The best news is that your Logan is so young. I would still act fast, as you are, because of his curve degree...but age is on your side, and you definitely want to use that precious period of rapid growth! You have come

to the right place, ask away!!! I know you have spoken to Jenn L., she is wonderful, isn't she?Heidi, Bexon's Mommy, (2 and a half years old, in 6th cast from Salt Lake City Shriners, currently down from 61 degrees to 25 in cast)From: Medlin <amanda.medlin@...>infantile scoliosis treatment Sent: Fri, March 26, 2010 5:47:39 PMSubject: Logan

Hey everyone =)

My name is and I have a 9 month old son Logan with infantile scoliosis. His curve as of feb 2 was 45 degrees. We have finally been able to get his MRI which detected a syrinx (small) and we go to the pediatric neurosurgeon on Tuesday to see what needs to be done. If we clear him...then we are set to go to the shrinners hospital down in SC. NC does not have the casting treatment... so we will travel to get him help. I would LOVE to be able to ask questions to the group and to you mom and dads having gone through this. Everytime I ask any questions here about casting ---they have no idea what Im talking about. Its frustrating. Im worried about my 9 month old and several episodes of general anesthesia. Im also worried because logan is rotated as well and has a rib hump. He also has torticollis and has been in a helmet to 3 months. I hoping that comes off right at the time when he is suppose to be casted....if they cast him. We are suppose to go

to SC on april 2. So Im hoping to know more by that time. Does anyones lil boy or girl have a syrinx as well? is that something that has to be surgically corrected or do they resolve over time? ughhh soo many questions... .

Please respond back...I would LOVE to talk to some mama's and daddy's doing this.

Logan's mama

[Guest guest]

Hi ! Welcome!My son Bexon has a small syrinx, too, and we have just had the 1 year follow up MRI and it has NOT grown at all! I just wanted to give you some hope that it can very likely never grow, it may be something you just have to stay on top of. I have been told that it could be an "incidental finding"- probably connected to the scoli, yes, but hopefully, it will never cause a problem in his life. We plan to ask our son when he is older to tell us if he ever feels any tingling in his hands or feet, etc...to tell us. Knowing him, he will anyway! : )The best news is that your Logan is so young. I would still act fast, as you are, because of his curve degree...but age is on your side, and you definitely want to use that precious period of rapid growth! You have come

to the right place, ask away!!! I know you have spoken to Jenn L., she is wonderful, isn't she?Heidi, Bexon's Mommy, (2 and a half years old, in 6th cast from Salt Lake City Shriners, currently down from 61 degrees to 25 in cast)From: Medlin <amanda.medlin@...>infantile scoliosis treatment Sent: Fri, March 26, 2010 5:47:39 PMSubject: Logan

Hey everyone =)

My name is and I have a 9 month old son Logan with infantile scoliosis. His curve as of feb 2 was 45 degrees. We have finally been able to get his MRI which detected a syrinx (small) and we go to the pediatric neurosurgeon on Tuesday to see what needs to be done. If we clear him...then we are set to go to the shrinners hospital down in SC. NC does not have the casting treatment... so we will travel to get him help. I would LOVE to be able to ask questions to the group and to you mom and dads having gone through this. Everytime I ask any questions here about casting ---they have no idea what Im talking about. Its frustrating. Im worried about my 9 month old and several episodes of general anesthesia. Im also worried because logan is rotated as well and has a rib hump. He also has torticollis and has been in a helmet to 3 months. I hoping that comes off right at the time when he is suppose to be casted....if they cast him. We are suppose to go

to SC on april 2. So Im hoping to know more by that time. Does anyones lil boy or girl have a syrinx as well? is that something that has to be surgically corrected or do they resolve over time? ughhh soo many questions... .

Please respond back...I would LOVE to talk to some mama's and daddy's doing this.

Logan's mama

[Guest guest]

We will be there Tues for all the pre cast stuff. We live in VA so we come the day before and stay. Her casting is Wednesday, not sure what time yet. I'm sure we will run into each other and if you have any questions or just need to talk let me know. I was a wreck the first time too. I was more nervous for her cast than the spinal cord surgery she had(go figure).Any way I look forward to meeting you guys! See ya Wednesday!Amy J mom to Allie(3) 3rd cast this Wednesday Sent from my Verizon Wireless BlackBerryFrom: Medlin <amanda.medlin@...>Date: Sat, 03 Apr 2010 18:53:32 -0700 (PDT)<infantile scoliosis treatment >Subject: Re: Logan Hey Amy!That would be wonderful for us to meet! I will be a wreck so I shouldnt be hard to pick out! lol His appt is at 6:30am. But we have to stay until the next day because it is his first one....when does allie get casted?amanda From: "my3girls06verizon (DOT) net" <my3girls06verizon (DOT) net>infantile scoliosis treatment Sent: Fri, April 2, 2010 9:34:16 PMSubject: Re: Logan ,We will be in Greenville also Wednesday for Allie's 3rd cast. I hope we can meet. Everyone is so wonderful there you will be in good hands. Dr. P told us we prob won't know how long Allie will be in a cast till about 4-5 casts into it. He is very reserved and doesn't sugar coat anything but I'm thankful for that. If you would like to talk before next week please please call or email me... My3girls06Verizon (DOT) net or 540-342-3353. I look forward to meeting you both!Amy J mom to Allie(3) down to 14* from 54* in second cast. Sent from my Verizon Wireless BlackBerryFrom: Medlin <amanda.medlin@ ymail.com> Date: Fri, 02 Apr 2010 18:22:41 -0700 (PDT)<infantile scoliosis treatment @groups. com>Subject: [infantile_scoliosi s] Logan Hey everyone---We went to shrinner's today in SC. Looks like Logan will start his casting Wed! Im NERVOUS! Dr. P sounds very reserved but positive about Logan. Everything was cautioned but I guess thats normal. Logan measured on 30 degrees today! He was 45 in Feb! So I guess the constant tummy time has helped a little bit! ( advice from a chiropractor) . He thinks it will take about 1-2 years in casting. Does that sound about right to everyone??? I thought it was a little long...but I guess it depends on the childs growth. Anyway...I would love any heads up on what is in store! thanks everyone!amandaMom of Logan. 9 months. 32 degrees (nov 09), 45 degrees (feb2010), 30 degrees (April 2010). Will be casted April 2010

[Guest guest]

ohhhh duct tape! I didint think of that----good idea! thanks so much!

amanda

From: "my3girls06@..." <my3girls06@...>infantile scoliosis treatment Sent: Sun, April 4, 2010 7:18:13 PMSubject: Re: Logan

Some duct tape around the bottom of the cast to kinda water proof it. Also I have heard of putting poise pads in the diaper for extra absorbency. As far as keeping him cool I'm not experienced yet. We have only been casted since Dec. I know there are cooling vest you can purchase so hopefully someone will chime in with info for both of us. Dr. P does use the shirts under the cast. personally I don't think I would want a cast without it. I think it protects the skin. Hope this helps a little. See ya Wednesday!Amy J mom to Allie(3) 3rd cast this Wednesday down to 14* from 54* Sent from my Verizon Wireless BlackBerry

From: Medlin <amanda.medlin@ ymail.com>

Date: Sun, 04 Apr 2010 14:18:37 -0700 (PDT)

<infantile scoliosis treatment @groups. com>

Subject: [infantile_scoliosi s] Logan

Does anyone have a suggestion on how to keep diaper leaks away from the cast? I think I have bath time figured out. Also...if anyone lives somewhere where its HOT and HUMID and has been through a summer.....what is the best way of keeping them cool and the cast dry??? I have seen casts with shirts on underneath and off....which is better? thanks everyone.

amanda

Mom of Logan...30 degrees with 20 degree rotation. Will be casted Wednesday in SC!

[Guest guest]

ohhhh duct tape! I didint think of that----good idea! thanks so much!

amanda

From: "my3girls06@..." <my3girls06@...>infantile scoliosis treatment Sent: Sun, April 4, 2010 7:18:13 PMSubject: Re: Logan

Some duct tape around the bottom of the cast to kinda water proof it. Also I have heard of putting poise pads in the diaper for extra absorbency. As far as keeping him cool I'm not experienced yet. We have only been casted since Dec. I know there are cooling vest you can purchase so hopefully someone will chime in with info for both of us. Dr. P does use the shirts under the cast. personally I don't think I would want a cast without it. I think it protects the skin. Hope this helps a little. See ya Wednesday!Amy J mom to Allie(3) 3rd cast this Wednesday down to 14* from 54* Sent from my Verizon Wireless BlackBerry

From: Medlin <amanda.medlin@ ymail.com>

Date: Sun, 04 Apr 2010 14:18:37 -0700 (PDT)

<infantile scoliosis treatment @groups. com>

Subject: [infantile_scoliosi s] Logan

Does anyone have a suggestion on how to keep diaper leaks away from the cast? I think I have bath time figured out. Also...if anyone lives somewhere where its HOT and HUMID and has been through a summer.....what is the best way of keeping them cool and the cast dry??? I have seen casts with shirts on underneath and off....which is better? thanks everyone.

amanda

Mom of Logan...30 degrees with 20 degree rotation. Will be casted Wednesday in SC!