Re: Re: New casting location? - Stressful day...

[Guest guest]

I am 32 miles NW of Cincinnati Children's Hospital. LOL It is 32 miles from my driveway to the parking garage.

Gail

Re: New casting location? - Stressful day...

Thanks Gail! Where are you guys again? I don't think he ruled that out as a location to have it, but he saidwe would definately have to see betz or campbell first. Her ribs onone side are normalish scoliosis ribs, but the other side (where shewould need the instrumentation) is just odd.... I will have to take apic of the Xrays, but the ribs are less than 1/2 the width of theother side and they are very very fine. He said they may be able tofuse some together to create anchor points, he had no idea. He justthought we definately needed ppl that were very experienced. Time will tell. I am not totally opposed to letting her grow whilebracing and casting and fusing her. It is a bit different with us inthat will be a little people anyway. She may be 50 lbs fullgrown. Of course we don't know exactly how large she will get, but weare sure it will be tiny.Beth> Beth,> That is AWESOME that KY was so helpful and open! I would definitelytalk with Dr. and Dr. Betz, but don't totally rule out Cincy.They may recommend you go there (location, location, location) whichof course would help with traveling and stuff - plus you would get avisit from me. LOL I really enjoy meeting other parents who are goingthrough the same thing as I am. But if you go to TX, I have a friendwho is a nurse there, and her DD is a Rib Kid.> > Keep us posted!> Gail

[Guest guest]

Beth,

Does she have other medical conditions that would cause her to be smaller? I am assuming that wouldn't be due to scoliosis, right?

Noelle (12-2-01)Ian (8-15-04)

Re: New casting location? - Stressful day...

Thanks Gail! Where are you guys again? I don't think he ruled that out as a location to have it, but he saidwe would definately have to see betz or campbell first. Her ribs onone side are normalish scoliosis ribs, but the other side (where shewould need the instrumentation) is just odd.... I will have to take apic of the Xrays, but the ribs are less than 1/2 the width of theother side and they are very very fine. He said they may be able tofuse some together to create anchor points, he had no idea. He justthought we definately needed ppl that were very experienced. Time will tell. I am not totally opposed to letting her grow whilebracing and casting and fusing her. It is a bit different with us inthat will be a little people anyway. She may be 50 lbs fullgrown. Of course we don't know exactly how large she will get, but weare sure it will be tiny.Beth> Beth,> That is AWESOME that KY was so helpful and open! I would definitelytalk with Dr. and Dr. Betz, but don't totally rule out Cincy.They may recommend you go there (location, location, location) whichof course would help with traveling and stuff - plus you would get avisit from me. LOL I really enjoy meeting other parents who are goingthrough the same thing as I am. But if you go to TX, I have a friendwho is a nurse there, and her DD is a Rib Kid.> > Keep us posted!> Gail

[Guest guest]

Cool - we should plan a get together!

gail

Re: New casting location? - Stressful day...

Well then you aren't very far anyway regardless of where we get "checked out". Its only 2 hrs to Cincy from my house. Beth>> I am 32 miles NW of Cincinnati Children's Hospital. LOL It is 32miles from my driveway to the parking garage.> > Gail

[Guest guest]

Well, that is good news that there is another Shriners doing it. I wonder why it is not more well known that they do the casting? Sounds like they are going to really take care of your little girl.

It's also good that he is recommending talking to or Betz. I am sure if there is a way it can be done, they would be the ones to figure it out.

Noelle (12-2-01)Ian (8-15-04)

Re: New casting location? - Stressful day...

His name is Dr Henry Irwinski (he said remember whiskey). The Drs inSalt Lake knew him and said he could/would cast. However, we hadcalled that shriners before we ever planned to move or went to SaltLake because it would be close to my mom/family. They had said no atthat time. He said they have casted for a long time and didn't seemphased at the suggestion. Wish I knew who I had talked to.... somenurse person.No thats not what he was talking about. He said she likely alreadyhas it mildly and that due to the spacing in her disks he didn't feelshe would have much growth there (her ribcage) at all. Which is whyhe felt it would come into play with us possibly very severely. Hedoesn't feel that VEPTR or rods would be an option for us at all dueto her very feather like ribs. He said you can't use then when thereis nothing to anchor them to.... makes sense. He said thats why wewould have to talk to Betz or to see about options they mayhave (maybe fuse ribs together to get a substantial anchor point,etc). He had no idea he was just letting us know it may never be anoption at all. He said he isn't the all knowing thats why he wants usto see Betz or if/when that is our only option or aconsideration.Geez its all exausting...Beth>> Beth,> > That is AWESOME that they are willing to move the table to yourlocal hospital and do it there. Wow. What can I say? Shriners isjust amazing.> > What is the ortho's name? Maybe he was at the ETTP and learned howto cast there? I have a list of the doctors who attended.> > I know that fusing the spine can cause restrictive lung disease andthat is why they are starting to go more towards VEPTR these days. Isthat what he is talking about? Or did he say she already had itbecause of how advance her curve is?> > > Noelle (12-2-01)> Ian (8-15-04)

[Guest guest]

Thanks for taking the time to answer my questions. I was just wondering if scoliosis could affect height that much. I know the cast helped Ian gain an inch (Or two depending on who measures him!), so it had me wondering.

Noelle (12-2-01)Ian (8-15-04)

Re: New casting location? - Stressful day...

Hi Again :)Yes she does. She has Arthrogryposis and possible Escobar Syndrome. Which includes a form of dwarfism.She is 29 months and 19 lbs 4 oz, 28 inches long.Beth>> Beth,> > Does she have other medical conditions that would cause her to besmaller? I am assuming that wouldn't be due to scoliosis, right?> > > Noelle (12-2-01)> Ian (8-15-04)> ----- Original Message -----

[Guest guest]

Hi Beth,

I can imagine how frustrating and exhausting this is

for you, emotionally. It's hard to know what

decisions we should make for our children, especially

when they are so young and seemingly fragile in one

respect, and seemingly healthy in another.

Just a little FYI about the VEPTR devices. The

original VEPTR device was designed for an infant who

had NO chestwall on one side. Yes, ideally they need

good, solid ribs to anchor the device(s) to, but they

also have options. Each VEPTR patient is different

and unique. The docs who've done this for a long time

now have had to be very creative in coming up with a

" game plan " to provide the best quality of life for

each child.

Also, in regard to the volume of the chest space, the

VEPTR device is designed to add volume to the chest,

besides vertical height to the spine/trunk. That's

the unique part about the device. With kids like

Braydon who have rigid spines or small chest cavities

to begin with, the VEPTR adds volume circumferentially

(does that make sense)? It still amazes me 4-1/2

years later to see how much volume Braydon gets with

each 1/2 to 1cm vertical adjustment of his VEPTR

devices. Huge. You had mentioned that she's a tiny

person to begin with so she may not need a large chest

space anyway (or something like that). This may be

true, but I can't tell you how much healthier Braydon

is because they were able to increase his lung

capacity and function with the VEPTR devices. Also,

if the lungs don't have enough room to function

properly, they atrophy. That means they stop working.

You don't want that to happen. Lung disease and

compromise are not good for our kids.

BTW, if you ever came back to SLC, Dr. at

Primary Children's Medical Center has done more VEPTR

implants than anyone, except Drs. and

in San . I'm sure he could give you some

advice too. We love Dr. !

Take care!

Carmell

mom to Kara 19, idiopathic scoliosis, Blake 15, GERD and Braydon 10, VACTERL,

GERD, DGE, Titanium Rib Project patient #137 (dbl implant 8/01), thoracic

insufficiency, rib anomalies, congenital scoliosis (fusion surgery 5/96),

missing coccyx, fatty filum/TC (released 4/99), anal stenosis, chronic

constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney,

ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic

bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion,

clubfoot with 8 toes (reconstructed 2/96, 3/96, 1/97, 3/04), pes cavus, single

umblilical artery, tonsil-adnoidectomy and ear tubes (3/98), etc.

http://carmellb-ivil.tripod.com/myfamily/

__________________________________________________

[Guest guest]

,

Not sure which one asked about the size of Beth’s

daughter. But just wanted to add that I too have Arthrogryposis and I am only 4’

10” and a half. Lol, I really stress the half part, I need all the height

I can get. And I’m only 41 years old.

Thought I would throw my 4 feet in. Lol.

Betty

Madison, WI

[Guest guest]

Betty, I had a friend in high school that always said she was 4' 11 1/4" She always had to get that quarter inch in, lol!

Noelle (12-2-01)Ian (8-15-04)

RE: Re: New casting location? - Stressful day...

,

Not sure which one asked about the size of Beth’s daughter. But just wanted to add that I too have Arthrogryposis and I am only 4’ 10” and a half. Lol, I really stress the half part, I need all the height I can get. And I’m only 41 years old.

Thought I would throw my 4 feet in. Lol.

Betty

Madison, WI

[Guest guest]

betty.....i like how you stress the 4'10" and a HALF!! if it makes you feel any better, my mom who is perfectly healthy ( other than us questioning her mental health sometimes!! LOL ) only stand 4' 9' on a GOOD DAY!! lol it is funny to see her and my dad, who stands at 6'3"....hehe. she is a school teacher and sometimes gets stopped in the hall from behind when a new teacher or sub and asks for her hall pass!!! LOL they feel foolish when they realize she is in fact a teacher and doesn't need a hall pass :-D

tracey

RE: Re: New casting location? - Stressful day...

,

Not sure which one asked about the size of Beth’s daughter. But just wanted to add that I too have Arthrogryposis and I am only 4’ 10” and a half. Lol, I really stress the half part, I need all the height I can get. And I’m only 41 years old.

Thought I would throw my 4 feet in. Lol.

Betty

Madison, WI

[Guest guest]

Hey Beth, I think it's great that all the docs want to talk to each other. We have never found that and I would love someone to say "whatever needs to be done we will all work together to do it." It sounds like this doc is really interested in doing the best for . Good luck. I would try asking the restrictive lung question on the veptr.com site as there are heapss of families there with kids with a wide range of problems and issues and the parents are so helpful. Just a thought. Bertmykidsintow <mykidsintow@...> wrote: Thanks Gail! Where are you guys again? I don't think he ruled that out as a location to have it, but he saidwe would definately have to

see betz or campbell first. Her ribs onone side are normalish scoliosis ribs, but the other side (where shewould need the instrumentation) is just odd.... I will have to take apic of the Xrays, but the ribs are less than 1/2 the width of theother side and they are very very fine. He said they may be able tofuse some together to create anchor points, he had no idea. He justthought we definately needed ppl that were very experienced. Time will tell. I am not totally opposed to letting her grow whilebracing and casting and fusing her. It is a bit different with us inthat will be a little people anyway. She may be 50 lbs fullgrown. Of course we don't know exactly how large she will get, but weare sure it will be tiny.Beth> Beth,> That is AWESOME that KY was so helpful and open! I would definitelytalk with Dr. and Dr. Betz, but don't totally

rule out Cincy.They may recommend you go there (location, location, location) whichof course would help with traveling and stuff - plus you would get avisit from me. LOL I really enjoy meeting other parents who are goingthrough the same thing as I am. But if you go to TX, I have a friendwho is a nurse there, and her DD is a Rib Kid.> > Keep us posted!> Gail __________________________________________________

[Guest guest]

I am so impressed that you have found a doc who doesn't think he knows everything and encourages you to see others. That doesn't happen in Australia- well not with the orhtos I've seen so far. He sounds great! Bertmykidsintow <mykidsintow@...> wrote: His name is Dr Henry Irwinski (he said remember whiskey). The Drs inSalt Lake knew him and said he could/would cast. However, we hadcalled that shriners before we ever planned to move or went to SaltLake because it would be close to my mom/family. They had said no atthat time. He said they have casted for a long time and didn't seemphased at the suggestion. Wish I knew who I had talked to.... somenurse person.No thats not what he was talking about. He said she likely alreadyhas

it mildly and that due to the spacing in her disks he didn't feelshe would have much growth there (her ribcage) at all. Which is whyhe felt it would come into play with us possibly very severely. Hedoesn't feel that VEPTR or rods would be an option for us at all dueto her very feather like ribs. He said you can't use then when thereis nothing to anchor them to.... makes sense. He said thats why wewould have to talk to Betz or to see about options they mayhave (maybe fuse ribs together to get a substantial anchor point,etc). He had no idea he was just letting us know it may never be anoption at all. He said he isn't the all knowing thats why he wants usto see Betz or if/when that is our only option or aconsideration.Geez its all exausting...Beth>> Beth,> > That is AWESOME that they are willing to move the table to yourlocal hospital and do it there. Wow. What can I say? Shriners isjust amazing.> > What is the ortho's name? Maybe he was at the ETTP and learned howto cast there? I have a list of the doctors who attended.> > I know that fusing the spine can cause restrictive lung disease andthat is why they are starting to go more towards VEPTR these days. Isthat what he is talking about? Or did he say she already had itbecause of how advance her curve is?> > > Noelle (12-2-01)> Ian (8-15-04)

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[Guest guest]

Bert,

It doesn't happen often here either. That is why I like Dr. Khoury so much. He will tell me when he learns something new that he didn't know before. I really respect that.

Noelle (12-2-01)Ian (8-15-04)

Re: Re: New casting location? - Stressful day...

I am so impressed that you have found a doc who doesn't think he knows everything and encourages you to see others. That doesn't happen in Australia- well not with the orhtos I've seen so far. He sounds great!

Bertmykidsintow <mykidsintow@...> wrote:

His name is Dr Henry Irwinski (he said remember whiskey). The Drs inSalt Lake knew him and said he could/would cast. However, we hadcalled that shriners before we ever planned to move or went to SaltLake because it would be close to my mom/family. They had said no atthat time. He said they have casted for a long time and didn't seemphased at the suggestion. Wish I knew who I had talked to.... somenurse person.No thats not what he was talking about. He said she likely alreadyhas it mildly and that due to the spacing in her disks he didn't feelshe would have much growth there (her ribcage) at all. Which is whyhe felt it would come into play with us possibly very severely. Hedoesn't feel that VEPTR or rods would be an option for us at all dueto her very feather like ribs. He said you can't use then when thereis nothing to anchor them to.... makes sense. He said thats why wewould have to talk to Betz or to see about options they mayhave (maybe fuse ribs together to get a substantial anchor point,etc). He had no idea he was just letting us know it may never be anoption at all. He said he isn't the all knowing thats why he wants usto see Betz or if/when that is our only option or aconsideration.Geez its all exausting...Beth>> Beth,> > That is AWESOME that they are willing to move the table to yourlocal hospital and do it there. Wow. What can I say? Shriners isjust amazing.> > What is the ortho's name? Maybe he was at the ETTP and learned howto cast there? I have a list of the doctors who attended.> > I know that fusing the spine can cause restrictive lung disease andthat is why they are starting to go more towards VEPTR these days. Isthat what he is talking about? Or did he say she already had itbecause of how advance her curve is?> > > Noelle (12-2-01)> Ian (8-15-04)

Photos – Showcase holiday pictures in hardcoverPhoto Books. You design it and we’ll bind it!

[Guest guest]

It seems a shame doesn't it as most other professions are happy to learn from each other. Oh well perhaps this is changing at least in the area of infantile scoliosis and I think it is the better informed parents who will force that change. The power of the internet, hey? Bert Claflin <noellesmommy@...> wrote: Bert, It doesn't happen often here either. That is why I like Dr. Khoury so much. He will tell me when he learns something new that he didn't know before. I really respect that. Noelle (12-2-01)Ian (8-15-04) Re: Re: New casting location? - Stressful day... I am so impressed that you have found a doc who doesn't think he knows everything and encourages you to see others. That doesn't happen in Australia- well not with the orhtos I've seen so far. He

sounds great! Bertmykidsintow <mykidsintow@...> wrote: His name is Dr Henry Irwinski (he said remember whiskey). The Drs inSalt Lake knew him and said he could/would cast. However, we hadcalled that shriners before we ever planned to move or went to SaltLake because it would be close to my mom/family. They had said no atthat time. He said they have casted for a long time and didn't seemphased at the suggestion. Wish I knew who I had talked to.... somenurse person.No thats not what he was talking about. He said she likely alreadyhas it mildly and that due to the spacing in her disks he didn't feelshe would have much growth there (her ribcage) at all. Which is whyhe felt it would come

into play with us possibly very severely. Hedoesn't feel that VEPTR or rods would be an option for us at all dueto her very feather like ribs. He said you can't use then when thereis nothing to anchor them to.... makes sense. He said thats why wewould have to talk to Betz or to see about options they mayhave (maybe fuse ribs together to get a substantial anchor point,etc). He had no idea he was just letting us know it may never be anoption at all. He said he isn't the all knowing thats why he wants usto see Betz or if/when that is our only option or aconsideration.Geez its all exausting...Beth>> Beth,> > That is AWESOME that they are willing to move the table to yourlocal hospital and do it there. Wow. What can I say?

Shriners isjust amazing.> > What is the ortho's name? Maybe he was at the ETTP and learned howto cast there? I have a list of the doctors who attended.> > I know that fusing the spine can cause restrictive lung disease andthat is why they are starting to go more towards VEPTR these days. Isthat what he is talking about? Or did he say she already had itbecause of how advance her curve is?> > > Noelle (12-2-01)> Ian (8-15-04) Photos – Showcase holiday pictures in hardcoverPhoto Books. You design it and we’ll bind it! __________________________________________________Do You

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[Guest guest]

Bert, My second ortho (here in Boston) laughed condescendingly -and quite arrogantly- when I told him I learned alot from the internet and this group but I still had questions. With a crooked little smirk he asked, "Okay, what are your "internet" questions?" So irritating... I wish he would join this group!!!!!! mom to and Jakebert lehane <bert_lehane@...> wrote: It seems a shame doesn't it as most other professions are happy to learn from each other. Oh well perhaps this is changing at least in the area of infantile scoliosis and I think it is the better informed parents who will force that change. The power of the internet, hey? Bert Claflin

<noellesmommy@...> wrote: Bert, It doesn't happen often here either. That is why I like Dr. Khoury so much. He will tell me when he learns something new that he didn't know before. I really respect that. Noelle (12-2-01)Ian (8-15-04) Re: Re: New casting location? - Stressful day... I am so impressed that you have found a doc who doesn't think he knows everything and encourages you to see others. That doesn't happen in Australia- well not with the orhtos I've seen so far. He sounds great! Bertmykidsintow <mykidsintow@...> wrote: His name is Dr Henry Irwinski (he said remember whiskey). The Drs

inSalt Lake knew him and said he could/would cast. However, we hadcalled that shriners before we ever planned to move or went to SaltLake because it would be close to my mom/family. They had said no atthat time. He said they have casted for a long time and didn't seemphased at the suggestion. Wish I knew who I had talked to.... somenurse person.No thats not what he was talking about. He said she likely alreadyhas it mildly and that due to the spacing in her disks he didn't feelshe would have much growth there (her ribcage) at all. Which is whyhe felt it would come into play with us possibly very severely. Hedoesn't feel that VEPTR or rods would be an option for us at all dueto her very feather like ribs. He said you can't use then when thereis nothing to anchor them to.... makes sense. He said thats why wewould have to talk to Betz or to see about options they

mayhave (maybe fuse ribs together to get a substantial anchor point,etc). He had no idea he was just letting us know it may never be anoption at all. He said he isn't the all knowing thats why he wants usto see Betz or if/when that is our only option or aconsideration.Geez its all exausting...Beth>> Beth,> > That is AWESOME that they are willing to move the table to yourlocal hospital and do it there. Wow. What can I say? Shriners isjust amazing.> > What is the ortho's name? Maybe he was at the ETTP and learned howto cast there? I have a list of the doctors who attended.> > I know that fusing the spine can cause restrictive lung disease andthat is why they are starting to go more towards VEPTR these days.

Isthat what he is talking about? Or did he say she already had itbecause of how advance her curve is?> > > Noelle (12-2-01)> Ian (8-15-04) Photos – Showcase holiday pictures in hardcoverPhoto Books. You design it and we’ll bind it! __________________________________________________

[Guest guest]

, You're right and they should join this group as I am sure this group saves many calls to their office for advice on diapering and bathing and skin rashes and all sorts of subjects much better covered by people who are living with casts not just applying them. Unfortunately Australian orthos must pass a subject called "arrogance101" before they are given a degree to practice. I wonder if they have lecturers who teach them that "smirk." Bert Viveiros <jviv314@...> wrote: Bert, My second ortho (here in Boston) laughed condescendingly -and quite arrogantly- when I told him I learned alot from the internet and this group but I still had questions. With a crooked little smirk

he asked, "Okay, what are your "internet" questions?" So irritating... I wish he would join this group!!!!!! mom to and Jakebert lehane <bert_lehane@...> wrote: It seems a shame doesn't it as most other professions are happy to learn from each other. Oh well perhaps this is changing at least in the area of infantile scoliosis and I think it is the better informed parents who will force that change. The power of the internet, hey? Bert Claflin <noellesmommy@...> wrote: Bert, It doesn't happen often here either. That is why I like Dr. Khoury so much. He will tell me when he learns something new that he didn't know before. I really respect that. Noelle (12-2-01)Ian (8-15-04) Re: Re: New casting location? - Stressful day... I am so impressed that you have found a doc who doesn't think he knows everything and encourages you to see others. That doesn't happen in Australia- well not with the orhtos I've seen so far. He sounds great! Bertmykidsintow <mykidsintow@...> wrote: His name is Dr Henry Irwinski (he said remember whiskey). The Drs inSalt Lake knew him and said he could/would cast. However, we hadcalled that shriners before we ever planned to move or went to SaltLake because it would be close to my mom/family. They had said no atthat time. He said they

have casted for a long time and didn't seemphased at the suggestion. Wish I knew who I had talked to.... somenurse person.No thats not what he was talking about. He said she likely alreadyhas it mildly and that due to the spacing in her disks he didn't feelshe would have much growth there (her ribcage) at all. Which is whyhe felt it would come into play with us possibly very severely. Hedoesn't feel that VEPTR or rods would be an option for us at all dueto her very feather like ribs. He said you can't use then when thereis nothing to anchor them to.... makes sense. He said thats why wewould have to talk to Betz or to see about options they mayhave (maybe fuse ribs together to get a substantial anchor point,etc). He had no idea he was just letting us know it may never be anoption at all. He said he isn't the all knowing thats why he wants usto see Betz or if/when

that is our only option or aconsideration.Geez its all exausting...Beth>> Beth,> > That is AWESOME that they are willing to move the table to yourlocal hospital and do it there. Wow. What can I say? Shriners isjust amazing.> > What is the ortho's name? Maybe he was at the ETTP and learned howto cast there? I have a list of the doctors who attended.> > I know that fusing the spine can cause restrictive lung disease andthat is why they are starting to go more towards VEPTR these days. Isthat what he is talking about? Or did he say she already had itbecause of how advance her curve is?> > > Noelle (12-2-01)> Ian (8-15-04)

Photos – Showcase holiday pictures in hardcoverPhoto Books. You design it and we’ll bind it! __________________________________________________