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

[Guest guest]

Apply anyway. I am not from Texas. When I spoke to them on the phone they said

no outa state applicants. I applied, got a signature from a mason and was

accepted. It took awhile to go through the process. Try not to panic. My son was

dx at 2 w scoli and we didn't get casted till 4. You might not get everything

pounded oout by 2 but you will be close! If I were you I would get on the

waiting list at oxford just to open options, call the other place once a week to

check on cancellations even though they said it was a slim to none chance... If

you politely bother them they will remember you if a slot comes up and apply at

Shriners. There are lots of people who travel to Portland, new York, and slc. I

think they may have the longest track record but others will clarify that. I

know there is a woman from Russia who takes her daughter to ish right and

we met a little girl from Mexico city last time. Just be calmly persistent and

go through the motions.

Send your info to 3 USA hospitals and see where you get in at and weigh your

options.

You will figure it all out. I remember the stress well. I know you want to pull

your hair put! If you look at the ish rite site there's a number to call.

They will set you up w a social worker who will call you for info. Well maybe

they won't since it would be international .... Hmmm. I think the person we

spoke w had the last name of ramirez. Let me see if I have it written down. I

think you should print out the applications and start collecting items. Maybe

directly email heather bc she will know where you should go. I see a lot of

posts for ERIE and Boston too. Maybe heather would know which locations are good

for travelers too w airports ect to think about.... People must be busy tonite

but not to worry they will toss out helpful info.

Now take a breath, say a prayer, and go to sleep. You won't be able to focus

running on empty. It is not your fault the medical system fights against you

sometimes. You are doing what you can to help your baby and it's stressful

having to wait and not know what's happening inside his body.... Completely

normal. Best case scenerio the xray will show no change which means the

technique is holding. Even if there is change you will be on track to finding

care. Two months IS a long time but it could be worse.

There is simeone who flies from Canada to SLC. Don't let what there guidelines

say deter you. It's a road block and quite frankly I think it's bullshit. I had

to call ish rite 3 times before I talked to the rite person. Just be

persistent. They let you in on an individual basis is what I was finally told.

It goes in front of the board.

Okay I'm blowing you a night night kiss:) Go get some shut eye!

Tame

Sent from my iPhone

On Jan 11, 2012, at 9:59 PM, " Alison " <abell_101@...> wrote:

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]

It never ever hurts to ask, regardless of what you read on a website. I'd

inquire at Philadelphia Shriners. I think I've seen families there from

Europe and Africa. I know they needed interpreters! At the very least,

they may be able to advise you on what is available.

[Guest guest]

Dear Alison,

It sounds like you are doing everything right. The only suggestion I have is to write letters to the surgeons directly. We live in the US, but when we were suddenly told our daughter needed treatment immediately, we also faced long waiting lists. After several phone calls left me feeling helpless, I sat down and wrote letters to to the doctors. Upon receipt, 2 of the doctors called me & 1 had their assistant call me.

Maybe you have already done this. I know it is not much, but I hope it helps. Hang in there. I know it is very difficult, but you are not alone.

All the best,

~

From: Alison <abell_101@...>Subject: Re: Johannes update and "mad" idea with request for reality check!infantile scoliosis treatment Date: Wednesday, January 11, 2012, 7:59 PM

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]

Yes a letter is great! You should include a picture also.Sent from my iPhoneOn Jan 12, 2012, at 8:47 AM, - and <@...> wrote:

Dear Alison,

It sounds like you are doing everything right. The only suggestion I have is to write letters to the surgeons directly. We live in the US, but when we were suddenly told our daughter needed treatment immediately, we also faced long waiting lists. After several phone calls left me feeling helpless, I sat down and wrote letters to to the doctors. Upon receipt, 2 of the doctors called me & 1 had their assistant call me.

Maybe you have already done this. I know it is not much, but I hope it helps. Hang in there. I know it is very difficult, but you are not alone.

All the best,

~

From: Alison <abell_101@...>Subject: Re: Johannes update and "mad" idea with request for reality check!infantile scoliosis treatment Date: Wednesday, January 11, 2012, 7:59 PM

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