Re: Johannes update and mad idea with request for reality check!

[Guest guest]

I can't sleep (it's now nearly 4am). I've been googling options and on the

websites for Shriners it says that patients need to come from US, Mexico and a

few other local countries. Since 2009 they don't accept people outside that.

Texas ish Rite don't accept children resident outside Texas.

Is there any way around this?

Lying in bed I thought that maybe I need to get put on the Oxford list for

another appointment asap after 21 March in case that one is cancelled through an

emergency on that day. At least then we don't go to the back of the queue again.

The booking officer told me that they practically never have cancellations to

offer, so there is v v v v v little hope of a cancellation before 21 March.

I asked for the 2nd opinion on 10 October. It took 2 months to get the appt and

then more than a month to get on the waiting list and then more than 2 and a

half more to get a provisional appt.

Johannes deserves better than this. I feel so helpless.

I am hoping that starting to cast before he's two (I can only pray that it won't

take till May to get there) will get us somewhere.

But even so, I am afraid that casting at Oxford won't be as good as he deserves

- the consultant at Oxford only sees 5 cases of infantile scoliosis per year. So

he's not exactly experienced in the casting technique...

Any ideas for other places to push?

A very tired Alison

>

>

> Hi

> The background: Johannes is 20 months and has been treated since he was about

13 months with soft casts (a bandage wrapped round him that's held while it

hardens into a cast) applied every two weeks without anaesthetic.

>

> He has an S shaped curve - top angle 36 degrees and bottom 27 degrees. These

didn't change between May and October last year. We are due x-rays and I don't

know what the curve is now...

>

> I asked for a second opinion from a different hospital where they do serial

casting on a frame, not exactly Mehta, but much closer.

>

> We had the appt 1 Dec and I was told he'd be on the waiting list as an urgent

case.

>

> I rang today and found out the paperwork hadn't been done and so only through

me making phonecalls today did we get a provisional first booking for 21 March.

But it's also an A & E dept so that could be postponed.

>

> 21 MARCH!!!!! He'll be 22.5 months. I saw his scoliosis at 8 months and feel

I've been unable to get anywhere for most of the time since then.

>

> I have calmed down a bit since this afternoon and the shock of the wait. I

have phoned his current hospital and asked for x-rays (I get the feeling we're

in limbo now, as we should have had them booked for Feb, but they haven't been

because they think we're changing).

>

> I have to stop myself thinking " what if it's getting worse... "

>

> We don't know whether it is progressive, but because it hasn't got better

despite the soft casting for 7+ months, it looks like it might be progressive.

>

> And all the while Johannes is growing like a weed. It upsets me a lot when

people comment on how tall he's getting. We're wasting precious growing time.

>

> I'm not sleeping well because of the guilt / fear / stress.

>

> I am trying to do my best in all this, but the system isn't set up to help

you!

>

> I know it's a mad, mad, mad idea, but I wondered whether we should try and

come to the US for the first cast???

>

> 1. What cost would we face? (beyond airfare)

> 2. Where should I try?

> 3. What waiting list are we talking about?

>

> Am I bonkers???

>

> I can't afford to do that long term, but just to get him started asap with a

proper cast feels like a good thing, and then we can carry on at Oxford

Radcliffe when he comes up on the waiting list.

>

> Any ideas?

>

> There are other hospitals in England (eg Middlesex Royal Orthopaedic) where a

Mehta style cast is applied, but I'd face a huge wait to be seen there... v

depressing.

>

> It may be far too expensive (is there any subsidy???) but I feel I need to

think out of the box and coming to the US came to mind.

>

> Many thanks

> Alison

>

>

>

>

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

>

>

[Guest guest]

First, DO NOT get caught up in guilt Alison...You have done more than most

parents and you dont deserve guilt. I am working on getting answers from

France and will keep you posted as soon as I get some answers. Hang tough

scoli sista!

HRH

>

> Hi

> The background: Johannes is 20 months and has been treated since he was

> about 13 months with soft casts (a bandage wrapped round him that's held

> while it hardens into a cast) applied every two weeks without anaesthetic.

>

> He has an S shaped curve - top angle 36 degrees and bottom 27 degrees.

> These didn't change between May and October last year. We are due x-rays

> and I don't know what the curve is now...

>

> I asked for a second opinion from a different hospital where they do

> serial casting on a frame, not exactly Mehta, but much closer.

>

> We had the appt 1 Dec and I was told he'd be on the waiting list as an

> urgent case.

>

> I rang today and found out the paperwork hadn't been done and so only

> through me making phonecalls today did we get a provisional first booking

> for 21 March. But it's also an A & E dept so that could be postponed.

>

> 21 MARCH!!!!! He'll be 22.5 months. I saw his scoliosis at 8 months and

> feel I've been unable to get anywhere for most of the time since then.

>

> I have calmed down a bit since this afternoon and the shock of the wait. I

> have phoned his current hospital and asked for x-rays (I get the feeling

> we're in limbo now, as we should have had them booked for Feb, but they

> haven't been because they think we're changing).

>

> I have to stop myself thinking " what if it's getting worse... "

>

> We don't know whether it is progressive, but because it hasn't got better

> despite the soft casting for 7+ months, it looks like it might be

> progressive.

>

> And all the while Johannes is growing like a weed. It upsets me a lot when

> people comment on how tall he's getting. We're wasting precious growing

> time.

>

> I'm not sleeping well because of the guilt / fear / stress.

>

> I am trying to do my best in all this, but the system isn't set up to help

> you!

>

> I know it's a mad, mad, mad idea, but I wondered whether we should try and

> come to the US for the first cast???

>

> 1. What cost would we face? (beyond airfare)

> 2. Where should I try?

> 3. What waiting list are we talking about?

>

> Am I bonkers???

>

> I can't afford to do that long term, but just to get him started asap with

> a proper cast feels like a good thing, and then we can carry on at Oxford

> Radcliffe when he comes up on the waiting list.

>

> Any ideas?

>

> There are other hospitals in England (eg Middlesex Royal Orthopaedic)

> where a Mehta style cast is applied, but I'd face a huge wait to be seen

> there... v depressing.

>

> It may be far too expensive (is there any subsidy???) but I feel I need to

> think out of the box and coming to the US came to mind.

>

> Many thanks

> Alison

>

>

>