Re: Guthrie - intro & day care question

[Guest guest]

Welcome and that is great news that your son is going to be able to receive treatment so soon! My daughter is 2yrs old now. She had her first Mehta cast when she was 8 months old and had them back to back for 14 months. She was in daycare full time 5 days a week the entire journey and did fine. I went in and did a demo on the diapering, but honestly we learned together. They were very willing and open to working with us to help accommodate my daughter with any special needs. We took a hair dryer with cool setting and left it at daycare so if she had a "blow out" diaper, they were able to pull her undershirt (it is under the cast against her skin) down, wash it with a wash cloth, then blow dry it with the cool setting. I showed them how to do this the first morning after returning with cast#1. And wouldn't you know it- they got to practice that very day. The one and only time they needed to use it. Also, you need to consider special restrictions or precautions around water tables for play, low sinks, low water fountains, etc. and the dreaded sand box. Sand down a cast is miserable for the child and may require the cast to be cut off early. Other than that, my daughter found ways to accommodate herself in getting around and keeping up with her classmates in her cast. You would never really know she had it on from a distance. Good luck!

Tina

Guthrie - intro & day care question

Hello -My husband, Gregor, and I have been members of C.A.S.T. for just a few weeks now. Our 2-year old son, Guthrie, was just diagnosed with progressive infantile scoliosis with a 60-degree Cobb angle. Guthrie seems otherwise to be thriving developmentally and physically, but he is having an MRI on 11/25 to rule out other complications. If the MRI is negative, our plan is to begin serial casting with Dr. Rubery in Rochester the week after Thanksgiving.Briefly, here is our journey so far -- Our pediatrician first noticed Guthrie’s scoliosis a few weeks ago at Guthrie’s regular 2-year well visit (looking back at snapshots, though, I think Guthrie’s scoliosis has been around for a while now). We live in the NYC area, and we quickly went to see Dr. Roye at Columbia Presbyterian Children’s Hospital in NYC. Dr. B. Roye ordered x-rays and the pending MRI, and advised that we begin serial casting with his colleague Dr. Vitale. Dr. Roye told us that their department was awaiting their AMIL frame, but he was not really sure when it would arrive — hopefully any day now. We left Columbia Presby. with mixed feelings — happy to hear that they would do serial casting on Guthrie, but not happy to hear that they didn’t yet have the AMIL frame and that we weren’t sure what, if any, experience Dr. Vitale had with performing Mehta casting. We reached out to Hyatt, who generously offered to talk on the phone (thank you !). After our conversation, we overnighted a package introducing Guthrie to Dr. Rubery and Dr. at Golisano Children’s Hospital in Rochester. We sent a letter, pictures of him, and a CD-ROM of his latest x-rays.The morning after receiving the package, Dr. Rubery called us – at 7:45 am! He said the onset is very aggressive, even for progressive infantile scoliosis, and that he could see us on the soonest Wednesday and then cast on Thursday. But since this Thursday is Thanksgiving, he didn’t think he could get anyone in to help him (a doctor who would cast our son on Thanksgiving, wow!). So, if Guthrie’s MRI is clear, we will proceed to Rochester for treatment with Dr. Rubery next week.I’m sure I will have many many questions along the way, but I wanted to ask the group for any advice regarding having a child in day care with a cast. I understand that diapering is something that Guthrie’s day care providers will have to treat with some special care, and is there anything else that anyone can share? I want to keep Guthrie’s day care providers informed and educated about his cast, without intimidating them or over-burdening them with unnecessary information and procedures. I know I have so much to learn, so please forgive me if I’m coming across as ignorant or naïve. Like, am I just crazy to think that Guthrie can return to 2-day/week day care with a cast? I guess I’m hoping that Guthrie will lead a pretty normal active life in his cast.Thank you for your help, and for welcoming our family into this community,-

[Guest guest]

Hi !

Welcome to the group! Where do you live? I am in Jersey and I go to Rochester, as well. It is an excellent hospital and the staff is amazing.... Feel free to e-mail me with any questions.....

Steph

Subject: Guthrie - intro & day care questionTo: "C.A.S.T." <infantile_scoliosis >Date: Saturday, November 22, 2008, 6:15 PM

Hello -My husband, Gregor, and I have been members of C.A.S.T. for just a few weeks now. Our 2-year old son, Guthrie, was just diagnosed with progressive infantile scoliosis with a 60-degree Cobb angle. Guthrie seems otherwise to be thriving developmentally and physically, but he is having an MRI on 11/25 to rule out other complications. If the MRI is negative, our plan is to begin serial casting with Dr. Rubery in Rochester the week after Thanksgiving.Briefly, here is our journey so far -- Our pediatrician first noticed Guthrie’s scoliosis a few weeks ago at Guthrie’s regular 2-year well visit (looking back at snapshots, though, I think Guthrie’s scoliosis has been around for a while now). We live in the NYC area, and we quickly went to see Dr. Roye at Columbia Presbyterian Children’s Hospital in NYC. Dr. B. Roye ordered x-rays and the pending MRI, and advised that we begin serial casting with his

colleague Dr. Vitale. Dr. Roye told us that their department was awaiting their AMIL frame, but he was not really sure when it would arrive — hopefully any day now. We left Columbia Presby. with mixed feelings — happy to hear that they would do serial casting on Guthrie, but not happy to hear that they didn’t yet have the AMIL frame and that we weren’t sure what, if any, experience Dr. Vitale had with performing Mehta casting. We reached out to Hyatt, who generously offered to talk on the phone (thank you !). After our conversation, we overnighted a package introducing Guthrie to Dr. Rubery and Dr. at Golisano Children’s Hospital in Rochester. We sent a letter, pictures of him, and a CD-ROM of his latest x-rays.The morning after receiving the package, Dr. Rubery called us – at 7:45 am! He said the onset is very aggressive, even for progressive infantile scoliosis, and that he could see us on the

soonest Wednesday and then cast on Thursday. But since this Thursday is Thanksgiving, he didn’t think he could get anyone in to help him (a doctor who would cast our son on Thanksgiving, wow!). So, if Guthrie’s MRI is clear, we will proceed to Rochester for treatment with Dr. Rubery next week.I’m sure I will have many many questions along the way, but I wanted to ask the group for any advice regarding having a child in day care with a cast. I understand that diapering is something that Guthrie’s day care providers will have to treat with some special care, and is there anything else that anyone can share? I want to keep Guthrie’s day care providers informed and educated about his cast, without intimidating them or over-burdening them with unnecessary information and procedures. I know I have so much to learn, so please forgive me if I’m coming across as ignorant or naïve. Like, am I just crazy to think that Guthrie can return to

2-day/week day care with a cast? I guess I’m hoping that Guthrie will lead a pretty normal active life in his cast.Thank you for your help, and for welcoming our family into this community,-

[Guest guest]

whenever I need someone to watch my daughter (she's in a cast) I make

sure she's not going to be around stairs. She doesn't do very well

with stairs in that cast. She also can't be around water and needs

help in general with getting up and down on the potty or at the

table. She's a little off balance and tips over easily. I am having

a hard time finding people I trust to watch my daughter becuase of

these needs. I just worry about it, maybe I should get over it and

get a job. Well, sorry not much help, just sharing that he might

fall a little more easily.

>

> Hello -

>

> My husband, Gregor, and I have been members of C.A.S.T. for just a

few weeks

> now. Our 2-year old son, Guthrie, was just diagnosed with

progressive

> infantile scoliosis with a 60-degree Cobb angle. Guthrie seems

otherwise to

> be thriving developmentally and physically, but he is having an MRI

on 11/25

> to rule out other complications. If the MRI is negative, our plan

is to

> begin serial casting with Dr. Rubery in Rochester the week after

> Thanksgiving.

>

> Briefly, here is our journey so far -- Our pediatrician first

noticed

> Guthrie¹s scoliosis a few weeks ago at Guthrie¹s regular 2-year

well visit

> (looking back at snapshots, though, I think Guthrie¹s scoliosis has

been

> around for a while now). We live in the NYC area, and we quickly

went to see

> Dr. Roye at Columbia Presbyterian Children¹s Hospital in

NYC. Dr.

> B. Roye ordered x-rays and the pending MRI, and advised that we

begin serial

> casting with his colleague Dr. Vitale. Dr. Roye told us

that their

> department was awaiting their AMIL frame, but he was not really

sure when it

> would arrive ‹ hopefully any day now.

>

> We left Columbia Presby. with mixed feelings ‹ happy to hear that

they would

> do serial casting on Guthrie, but not happy to hear that they

didn¹t yet

> have the AMIL frame and that we weren¹t sure what, if any,

experience Dr.

> Vitale had with performing Mehta casting. We reached out to

Hyatt,

> who generously offered to talk on the phone (thank you !).

After our

> conversation, we overnighted a package introducing Guthrie to Dr.

Rubery and

> Dr. at Golisano Children¹s Hospital in Rochester. We sent a

letter,

> pictures of him, and a CD-ROM of his latest x-rays.

>

> The morning after receiving the package, Dr. Rubery called us ­ at

7:45 am!

> He said the onset is very aggressive, even for progressive infantile

> scoliosis, and that he could see us on the soonest Wednesday and

then cast

> on Thursday. But since this Thursday is Thanksgiving, he didn¹t

think he

> could get anyone in to help him (a doctor who would cast our son on

> Thanksgiving, wow!). So, if Guthrie¹s MRI is clear, we will proceed

to

> Rochester for treatment with Dr. Rubery next week.

>

> I¹m sure I will have many many questions along the way, but I

wanted to ask

> the group for any advice regarding having a child in day care with

a cast. I

> understand that diapering is something that Guthrie¹s day care

providers

> will have to treat with some special care, and is there anything

else that

> anyone can share? I want to keep Guthrie¹s day care providers

informed and

> educated about his cast, without intimidating them or over-

burdening them

> with unnecessary information and procedures. I know I have so much

to learn,

> so please forgive me if I¹m coming across as ignorant or naïve.

Like, am I

> just crazy to think that Guthrie can return to 2-day/week day care

with a

> cast? I guess I¹m hoping that Guthrie will lead a pretty normal

active life

> in his cast.

>

> Thank you for your help, and for welcoming our family into this

community,

>

> -

>

[Guest guest]

Welcome to the group . I'm so glad you were able to find such a great doctor that was even willing to come in on Thanksgiving. That's great. My son was in daycare while he had his cast on. We just showed them how to change his diaper and then made sure they were aware he couldn't play in any water tables or in the sandbox. They were great about it and we did just fine keeping him in daycare with the cast. We've actually had more problems since he has been in the brace. It took a while for everyone to figure out how to put the brace on correctly, so occasionally he would come home with the brace not on properly. But they've all figured it out now and we haven't had any problem in months.

To: C.A.S.T. <infantile_scoliosis >Sent: Saturday, November 22, 2008 1:15:05 PMSubject: Guthrie - intro & day care question

Hello -My husband, Gregor, and I have been members of C.A.S.T. for just a few weeks now. Our 2-year old son, Guthrie, was just diagnosed with progressive infantile scoliosis with a 60-degree Cobb angle. Guthrie seems otherwise to be thriving developmentally and physically, but he is having an MRI on 11/25 to rule out other complications. If the MRI is negative, our plan is to begin serial casting with Dr. Rubery in Rochester the week after Thanksgiving.Briefly, here is our journey so far -- Our pediatrician first noticed Guthrie’s scoliosis a few weeks ago at Guthrie’s regular 2-year well visit (looking back at snapshots, though, I think Guthrie’s scoliosis has been around for a while now). We live in the NYC area, and we quickly went to see Dr. Roye at Columbia Presbyterian Children’s Hospital in NYC. Dr. B. Roye ordered x-rays and the pending MRI, and advised that we begin serial casting with his

colleague Dr. Vitale. Dr. Roye told us that their department was awaiting their AMIL frame, but he was not really sure when it would arrive — hopefully any day now. We left Columbia Presby. with mixed feelings — happy to hear that they would do serial casting on Guthrie, but not happy to hear that they didn’t yet have the AMIL frame and that we weren’t sure what, if any, experience Dr. Vitale had with performing Mehta casting. We reached out to Hyatt, who generously offered to talk on the phone (thank you !). After our conversation, we overnighted a package introducing Guthrie to Dr. Rubery and Dr. at Golisano Children’s Hospital in Rochester. We sent a letter, pictures of him, and a CD-ROM of his latest x-rays.The morning after receiving the package, Dr. Rubery called us – at 7:45 am! He said the onset is very aggressive, even for progressive infantile scoliosis, and that he could see us on the

soonest Wednesday and then cast on Thursday. But since this Thursday is Thanksgiving, he didn’t think he could get anyone in to help him (a doctor who would cast our son on Thanksgiving, wow!). So, if Guthrie’s MRI is clear, we will proceed to Rochester for treatment with Dr. Rubery next week.I’m sure I will have many many questions along the way, but I wanted to ask the group for any advice regarding having a child in day care with a cast. I understand that diapering is something that Guthrie’s day care providers will have to treat with some special care, and is there anything else that anyone can share? I want to keep Guthrie’s day care providers informed and educated about his cast, without intimidating them or over-burdening them with unnecessary information and procedures. I know I have so much to learn, so please forgive me if I’m coming across as ignorant or naïve. Like, am I just crazy to think that Guthrie can return to

2-day/week day care with a cast? I guess I’m hoping that Guthrie will lead a pretty normal active life in his cast.Thank you for your help, and for welcoming our family into this community,-