[Fwd: Re: CTD's and VEPTR

[Guest guest]

Hey - jumping in here coz CTD's and VEPTR are something we're

dealing with here too :-)

Siobhan's muscles aren't that strong unfortunately, and her CTD/

Marfan's seems VERY pronounced - She's like a floppy ragdoll by

comparson to kids her age.

She isn't able to bend and move that well with the VEPTR, and I worry

some about muscle atrophy?? But I keep reminding myself that VEPTR

wasn't designed for Siobhan's type of scoliosis, nothing has been

(yet.....???), and I'm just so thankful that Siobhan see's Dr D, who

was/is prepared to try to do what he can, and work with other doc's

(so many don't!).

Moving the VEPTR from Siobhan's pelvis has helped with the stooping,

but when she's tired, she does still stoop, although no where near as

badly as she did....

I also believe that having the VEPTR off her pelvis means that we

aren't getting the correction with her rotation as we were - I guess

it's the trade off?

Anyhoo, enough of my ramblings.....

Talking of websites to link to ISOP:

www.marfan.org and www.veptr.com

Siobhan is on Spring Break this week and is skiing today - who'd have

thought it eh?

Hugs to you and Liv.

Jacki

> Subject: Re: Carmell

> From: heather@...

> Date: Tue, March 18, 2008 10:54 am

> To: infantile_scoliosis

> ----------------------------------------------------------

>

> Oops! Sent that last post without actually replying to it.....

> Carmell,

> I think your exactly right. I know that Olivia has some type of

> Ehlers-Danlos syndrome....I also have it, but her presentation of

the ctd

> (connective tissue disorder) is a little worse(than mine). Her

connective

> tissues are effected, but her muscles are working great. She is

very

> strong, and her muscles are very pronounced in all other areas of

her

> body. Its only her back that is loosing muscle, and I think its

because

> the internal splintage is very effective....Just a little too,

> effective..If you know what I mean. Anyway, I am still grateful

that we

> are on this route of treatment. I also agree that a fusion would

NOT have

> held her relentless curves, especially while she is growing. The

fusion

> would have broke, and/or other curves would have developed and

growth

> would have been restricted. We are fortunate that the VEPTR's

have

> bought her invaluable growth time, and we will continue with this

type of

> VEPTR, until we can no longer.

> She is in her 2nd full day of school and doing well!

> Hope you guys are doing well, too!

> HRH

>

> > Hi ,

> >

> > I'm very happy to hear your weather is nice. We have beautiful

blue

> sky, but temps only in the 30s still (burrrrrr). Hopefully Olivia

had a

> nice weekend.

> >

> > <<While the dual VEPTR hybrid has helped maintain rotation and

her

> curves, the muscle deterioration throughout her entire back is so

very

> > apparent....>>

> >

> > I wonder how much of Olivia's CTD has to do with the muscle

> > atrophy/deterioration? I agree that the dual pelvic attached

VEPTRs are

> more restrictive than the lumber-attached device, but MOST VEPTR

kids I

> know do not have the muscle issues Olivia is having. Most VEPTR

kids are

> able to maintain the muscle structure and be active and develop as

they

> grow. I'm sorry to hear her back looks worse than it did when you

started

> this VEPTR journey. Where's that crystal ball when you need it?

> I also firmly believe that even with fusion (as final as that is)

her

> spine would not have stopped curving/rotating/twisting, etc. Her

spine

> has a mind of its own, and her muscles aren't as strong as most

kids to

> support that spine. I don't know of as many kids with CTDs as

without so

> I'm making assumptions based on process of elimination (ie, the

other kids

> aren't having muscle atropy, so maybe the CTD is contributing to

the

> > deterioration?, etc)

> >

> > More hugs and best wishes that something will go right/better on

> Olivia's journey. Take care!

> >

> > Carmell

> >

> >

> >

> >

> > Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 17,

GERD,

> and Braydon 12, VACTERL-congenital scoliosis (fusion surgery

5/96), VEPTR

> patient #137 (implant 8/01), Thoracic Insufficiency Syndrome

(TIS), rib

> anomalies, missing coccyx, fatty filum/TC (released 4/99 & 12/06),

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, dysplastic right leg w/right

clubfoot

> with 8 toes (repaired 2/96, 3/96, 1/97, 3/04), tibial torsion, 4cm

length

> discrepancy-wears 3cm lift, valgus deformity, GERD, Gastroparesis,

SUA,

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

> >

> > Congenital scoliosis support group

> > http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/

> >

> > ---------------------------------

> > Never miss a thing. Make Yahoo your homepage.

> >

> >