[Fwd: Re: CTD's and VEPTR

[Guest guest]

Hi Shellie

The Marfan.org does have a " related disorder " section, but doesn't

mention Ehlers Danlos - You'd think it would eh? Maybe because ED has

a number of different types??

I did a google for Ehlers Danlos and got lots of support- the biggest

info site looks like:

ednf.org - Haven't used this myself... But looks like theres lots of

info - including a ED Conference, etc.... Could be good to add to

ISOP??

Cheers,

Jacki

> 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.

> > >

> > >