to and Kelli

[Guest guest]

Hi

Genetic testing hasn't shown anything yet but Abi is extremely tall for her age,

has hyper mobility of joints and the whites of her eyes are slightly blue. She

doesn't look like she has Marfins. Currently the Geneticist is testing for

Loeys-Dietz syndrome and Abi is due to have an a heart scan just in case. All

the Orthopaedic Surgeons we see say she has ideopathic infantile scoliosis.

She has been cast since 20 months and since 23 months has been cast on Dr

Mehta's original table at Stanmore (we couldn't find another one in the UK)

thanks to your wonderful site. Abi has the cut outs and the front of her cast

is as specified by Dr Mehta. Unusually Abi's major curve appears to be the

lumber one although recently the thoracic curve has had a higher figure. The

sugeons here are reluctant to talk angles but we think Abi is around mid 20s on

each curve (they didn't Xray after the last cast but are doing it on Tuesday

when her next cast goes on) and the curve still seems mobile when she is on the

table. Abi is now 3 yrs 5 months.

We are desperate to put offf growth rods for as long as pos (until fusing if we

can) and am concerned a brace won't hold Abi's curves as well as the casts have.

Any advice or thoughts are hugely welcome including if we would be better off

without any cut outs in this situation.

Do you know if there is a connective tissue disorder that is related to double

curves?

Thank you both of you for taking the time to read my posts and this huge reply.

Sue

>

> Hi Sue,

> Does Abby have a connective tissue disorder?

> hRH

>

> > Can anyone tell me how Miss Mehta dealt or deals with double curves that

> > oppose in opposite directions as my daughters has? We have been working

> > on derotating the bottom curve but am now working on the top but each

> > seems to be at the cost of the other curve. Now the surgeon is ready to

> > stop casting and wants to brace which we will fight as hard as we can.

> >

> > thanks

> > Sue

> >

> >

>