shriners

[Guest guest]

Just thought I would pipe in about Shriners for those new to this list.

Shriners foundation has an entire hospital network, though not in every state,

they do have representative offices and officers in the major cities. These

hospitals are fully funded through donation and provide medical services to

children who qualify up to the age of 18. Included in treatment is that they

often pay for the required air-fare (if any) for the child and one parent plus

assist in overnight housing if needed.

The primary focus (to my understanding) are orthopedic conditions. JRA is not

strictly orthopedic but Shriners realizes the nature of the disease and

generally approves treatment of it under their program.

We are awaiting approval for Skyler and they are considering working in tandem

with UCLA in Southern California ~ since the treatment appears to be working ~

because the insurance co is again finding a way to refuse fully covering it.

The good thing about Shriners is it does not restrict admission based on income

as most federal and state services do.

~ [ & Skyler]

Re: question

kellie hi my name is karen. my daughter was diagnosed with polyarticular jra

way back in 1989. the medicine we had trouble with was indocin. then they put

her on naporsyn. tabitha just reminded me that she also had stomach pain with

her naporsyn. her dr. prescribed zantac to help with any stomach pain she

has. she doesn't have it all the time though. i strongly urge you to get to a

specialist in this field. i dealt with childrens hospital in pittsburgh

before i moved to where i live now. i now deal with hershey hospital. if you

can even try to get into a shriners i also heard they are very good at

dealing with this disease. as far as weight i can understand your concern.

tabithas problem as far as weight gain was went was slow. she seemed to be 40

lbs. from 5 on up till about 11. well she would gain a couple of pounds then

lose a couple. but i was told that it was her methatrexate. a dr. told me

once that if methatrexate was a diet pill everyone would be skinny. she is

now 16 and weighs 77lbs. i was told that it would be harder on tabitha to get

around if she was heavy. so try and hold on and please listen to your

instincts because like you i agree we know when something is hurting our

children. good luck.

karen (tabitha)

[Guest guest]

Meghann is seen by Shriners and it is a great place. They have a JRA

clinic, where she is seen by the Helen Emery group. In fact this is where

she is having surgery on May 1st.

As mentioned they do a lot of orthopedic work, this site is also a

children's burn center.

We connected with them shortly after Meghann was diagnosed and although we

did have a period where we went elsewhere (due to a lot of situations

nothing having to do with Shriners). We have nothing but good to say about

them.

Sharon and Meghann

JRA and PRS

[Guest guest]

Hello all,

I know that it has been a while since I have written, but when

I saw the post regarding Shriners I had to tell everyone how

great Shriners has been for my daughter. They make Bethany's

AFO's. The braces always fit perfectly and if they don't

shriners make sure they fit when we leave. They also help with

transportation and make us all feel welcome.

Bethany is a very busy little girl. She is a MDA ambassador

again and never stops. Without the help of shriners she may not

have been able to keep up with her class, but she can now and

is very proud of herself.

Thanks for all of the information that you all post, all of it

is very useful and helpful. I always read, but seldom write.

Thanks

Dawn

[Guest guest]

Hello , and everyone else.....

I just got home from the airport after our whirlwind trip to LA and am not doing

too well right now. Spent 4 hours waiting at Shriners this morning for the Dr.

to tell me that

A) Shriners will not help us because there is already a plan in place with Dr.'s

doing something (even if it might suddenly fail due to insurance problems,

though they have already denied us access to the UCLA Dr.'s and Skylers mom

possibly getting fired) but if he has serious orthopedic surgery needed at a

later date - say age 14 or later - that we can probably get that taken care of.

Shriners is not simply a drug dispensing organization.......

C) Enbrel (a very expensive drug that Skyler needs) has been limited by the

Shriners foundation in Los Angeles to only 5 patients due to cost issues and

they have already allocated the 5 patients and there are no available funds

(none of the five live in the U.S.)

D) based on her visual review of Skylers condition this morning she says she

does not agree that he needs any orthopedic equipment and would not approve any

for him.

E) and " Phoenix/Arizona Govt. programs should be in place to help in this case. "

In her words our problem is a " Social Problem " and that our best solution at

this point is probably the news station.

I told her we are looking for some way to get him on a plan that would guarantee

his treatment with no interruption and get us away from the idiots at the

insurance co. Some sort of a safety net. I told her that I have several

references of other kids with this condition at Shriners and mentioned Dr.'

Emery up in Sacramento as encouraged by so many of you, she said Dr. Emery could

not help either and that I should try to get state aid as I have been unemployed

so long. I told her I can't as the state looks at Skyler's mom as being the

primary care parent, regardless of how much time he spends with me. She say's I

should go to court (pay the cost) to file and sue for position as primary

custodian - causing grief with Skylers mom - taking lord knows how long to

resolve - so I can get him on Access. I told her I spoke with several medical

practitioners about Access and was told that they would not be capable of

providing Skyler the specialized treatment due to the need for a Board Certified

Pediatric Rheumatologist (of which there is not one in the state). She said,

" See, it is a social problem " . No kidding.

Then I spent an hour driving across LA another 4 hours at UCLA. where I am told

our Rheumi has left UCLA and has moved to Washington State. The new Rheumi says

Skyler looks very good and blood tests look good. She adjusted some of the

medications and sent us on our way. Financial department does not have a clue

what is going on with the insurance payment problems and can not figure out how

much we owe them or for what visits. Good news is by the time I got out of the

Dr.'s room the Finance people have gone home and I did not have to make a

payment for that trip! Well, guess the billing is in the mail.

I am going to sleep on this and gather my wits in the morning.

~ [ & Skyler]

shriners

, I was so glad to read that you are going to be getting help from the

Shriners. I am sure that must ease your mind a little. I hope that they will

cover everything but if not then what help they can give will be a great

blessing I am sure. I am sorry for what the insurance company is doing to you.

Why do companies like this have to crap on everybody. I sure hope tha tyou get

things worked out soon. Keep fighting, you are good with words and you will get

things taken care of. How is Skyler doing these days? My kids and I think about

him and you all the time. Hang in ther man things will get better.

~~I HOPE YOU DANCE~~

crimsons@...

[Guest guest]

Dear ,

Our hearts go out to you! Like I said in my previous letter I've been

through it too! (I didn't go into every little detail so it might have

seemed that we got things wrapped up fairly easy--but was a long

battle!) I wish there was someone I could lead you to that would help

but I live in Indiana and only know of our programs here. Just wonderd

if you've talked with any social workers at the hospital as they

sometimes know where to go. Also wondered if they have any sort of

payment plan there? I know at Rileys Children's Hospital they do. I have

a friend who's son needed all kinds of surgery and a special hearing aid

and his dad left them--anyway she was working but her insurance was

crappy--to make a long story short--his bills after insurance were still

over 90,000! The hospital told her to pay what she could even if it was

only 20.00 a month. (They later found her a private sponsor and wrote

off the majority of the bill) So just wondering if you've talked to them

in finance office? Maybe it might help to get out the phone book and

call every agency you can think of--I did this with Kate's glasses

(another long insurance story) and after 2 days and being told I needed

to call so and so over and over, found the place I needed. I still

think the news story would help as there are so many people caught in

the insurance " jungle " . I hope and pray things will get better for you

both. Keep us informed of everything.

Love to both of you,

and Kate

[Guest guest]

,

Skyler and every other child with JRA qualifies for Medical Assistance

regardless of the family's income. This is because JRA is a chronic

condition. I found this out 10 months into my daughter's JRA.

Fortunately, we have good insurance but now that my daughter is on MA, I do

not have to pay any of the copays for her physical therapy or her

medication. It is all at no charge. You should be able to contact your

county Public Assistance Office to get an application form. Ask for the

" teddy bear " form which is a shortened form. You only apply for your child.

I can fax you some information if you would like. I live in Pennsylvania

but I believe this is true for all states in the U.S.

Chris

Re: shriners

Hello , and everyone else.....

I just got home from the airport after our whirlwind trip to

LA and am not doing too well right now. Spent 4 hours waiting at Shriners

this morning for the Dr. to tell me that

A) Shriners will not help us because there is already a plan

in place with Dr.'s doing something (even if it might suddenly fail due to

insurance problems, though they have already denied us access to the UCLA

Dr.'s and Skylers mom possibly getting fired) but if he has serious

orthopedic surgery needed at a later date - say age 14 or later - that we

can probably get that taken care of.

Shriners is not simply a drug dispensing

organization.......

C) Enbrel (a very expensive drug that Skyler needs) has been

limited by the Shriners foundation in Los Angeles to only 5 patients due to

cost issues and they have already allocated the 5 patients and there are no

available funds (none of the five live in the U.S.)

D) based on her visual review of Skylers condition this

morning she says she does not agree that he needs any orthopedic equipment

and would not approve any for him.

E) and " Phoenix/Arizona Govt. programs should be in place to

help in this case. "

In her words our problem is a " Social Problem " and that our

best solution at this point is probably the news station.

I told her we are looking for some way to get him on a plan

that would guarantee his treatment with no interruption and get us away from

the idiots at the insurance co. Some sort of a safety net. I told her that

I have several references of other kids with this condition at Shriners and

mentioned Dr.' Emery up in Sacramento as encouraged by so many of you, she

said Dr. Emery could not help either and that I should try to get state aid

as I have been unemployed so long. I told her I can't as the state looks at

Skyler's mom as being the primary care parent, regardless of how much time

he spends with me. She say's I should go to court (pay the cost) to file

and sue for position as primary custodian - causing grief with Skylers mom -

taking lord knows how long to resolve - so I can get him on Access. I told

her I spoke with several medical practitioners about Access and was told

that they would not be capable of providing Skyler the specialized treatment

due to the need for a Board Certified Pediatric Rheumatologist (of which

there is not one in the state). She said, " See, it is a social problem " .

No kidding.

Then I spent an hour driving across LA another 4 hours at

UCLA. where I am told our Rheumi has left UCLA and has moved to Washington

State. The new Rheumi says Skyler looks very good and blood tests look

good. She adjusted some of the medications and sent us on our way.

Financial department does not have a clue what is going on with the

insurance payment problems and can not figure out how much we owe them or

for what visits. Good news is by the time I got out of the Dr.'s room the

Finance people have gone home and I did not have to make a payment for that

trip! Well, guess the billing is in the mail.

I am going to sleep on this and gather my wits in the

morning.

~ [ & Skyler]

shriners

, I was so glad to read that you are going to be

getting help from the Shriners. I am sure that must ease your mind a little.

I hope that they will cover everything but if not then what help they can

give will be a great blessing I am sure. I am sorry for what the insurance

company is doing to you. Why do companies like this have to crap on

everybody. I sure hope tha tyou get things worked out soon. Keep fighting,

you are good with words and you will get things taken care of. How is Skyler

doing these days? My kids and I think about him and you all the time. Hang

in ther man things will get better.

~~I HOPE YOU DANCE~~

crimsons@...

[Guest guest]

What is the " MA " originating from? I have looked into the " Katy Beckett "

program instituted during the Reagan administration and an attorney that was

researching financial programs like this did extensive research locally - we

both found that though there are funds that go to Arizona for children with

chronic conditions such as RA - there is no apparent outlet for these funds. We

have called every local regulatory group and medical branch of the govt. asking

about this and have found nothing.

If Skyler had even the slightest amount of mental retardation he would instantly

qualify for several programs.

I would give my left arm to find even one local source such as what you have

mentioned. When I start calling I usually end up going in a circle of about 30

phone calls where one support group sends me to another, then so on, until I end

up back where I started.

When I have found a group that will accept Skyler into their program it has been

fully dependant on income and if Skylers mom is not at poverty level there is no

appreciable coverage.

Please, please, please... send me the name of the program that supplies your

local benefit program and I will continue to make calls. It looks really

suspicious that there are funds going to this state to help but no outlet.

~

shriners

, I was so glad to read that you are going to be

getting help from the Shriners. I am sure that must ease your mind a little.

I hope that they will cover everything but if not then what help they can

give will be a great blessing I am sure. I am sorry for what the insurance

company is doing to you. Why do companies like this have to crap on

everybody. I sure hope tha tyou get things worked out soon. Keep fighting,

you are good with words and you will get things taken care of. How is Skyler

doing these days? My kids and I think about him and you all the time. Hang

in ther man things will get better.

~~I HOPE YOU DANCE~~

crimsons@...

[Guest guest]

,

I am so sorry that things have not worked out for you at Shriners....

In fact, I have to wonder at some of the information that was given to

you.

I'm thinking that they could have helped you in one way or another.

Was the doctor that you saw a pediatric rheumy? If not I have to wonder

where her expertise in Skylers needs are. I am sure that she is a wonderful

doctor but sometimes the rhuemies see something that orthopedics don't.

I remember once asking about her getting a lift and was told oh no she

doesn't need one unless her discrepancy is more than 2 inches. Then I

talked to the ped rheumy and her PT and the next thing I know she has an

outside shoe lift.

The meds I am not surprised about. We have insurance that pays for

Meghann's. I realize that is no consolation to you.

Meghann has had contractures since she was two, but outside of

splinting, casting, and a 5 week stay for PT, this surgery that she had in

May of this year is her first surgical intervention. However I don't think

this is why Meghann was first seen....maybe I am wrong, or maybe they have

tightened their criterions for acceptance since Meghann was first accepted.

I am also surprised that they did not offer you the services of their

social worker. (Maybe they did and I missed that). Social workers often

can get the foot in the doorway for you.

Did I understand your Rheumy has left also now?

Here is a long shot..........but since you and the phone seem to make

the rounds. Have you thought of contacting Dr Emery about your case....she

may or may not be able to help you. But I know her as a very compassionate

person. She also has close ties with the Arthritis Foundation and I have

to figure other resources.....Ibelieve she even has an email address...it's

on the web somewhere....

My Heart goes out to you....and I truly understand the financial

stuff.....we have no credit or rather we have a sub zero credit

rating....But after 14 years of this I think we have gotten use to it. Not

that we don't wish for a change in our financial abilities but I think we

are resigned to the fact that it isn't going to happen for us any time soon.

My thoughts and prayers are with you,

Sharon and Meghann

JRA and PRS

[Guest guest]

Hi ,

I have been meaning to write for the past week or so but have been waiting

to see how your appointments went. I am so sorry to hear about Shiners. It

makes me second guess filling out all the paper work and also being

rejected. It seems to have been such a waste of time. I also spend hours

on the phone looking for help being sent from place to place and end up with

nothing. Our insurance keeps finding new ways to deny and soon we too will

run out of options.

I have spoke to Dr Emery and her group of doctors about Sklyer and the

familiarities of r and him. I would give it a try.

How is Skyler doing? We went 2 weeks ago to UCSF and r gained 1 1/2lb.

After over a year with no gain we were so happy. I think he also grew a

tiny bit. Of course this made me wonder about the connection of cyclosporin

and the weight gain. I remember reading a post of Skyler also having a gain

and after so long it just makes me wonder. r had his first level taken

I think it was (45). They increased his cyclosporin to .4 this makes me a

little nervous upping it so quickly. Of course it is too soon to tell if it

has had any affect and with the level being low. We have been out of town

and I think the weather did not help at all.

We are going to UCSF again tomorrow and I will see what I can do. I am not

sure we will see Dr Emery but usually a doc comes down to the outpatient.

You and Skyler are in our prayers,

Pamela,r 3 systemic

\>From: " V. " <chivalry@...>

>Reply-

> " Red " <crimsons@...>, <Stillsdisease >,

> " " < >, <blackrose@...>

>Subject: Re: shriners

>Date: Tue, 22 May 2001 23:57:15 -0700

>

>Hello , and everyone else.....

>

>I just got home from the airport after our whirlwind trip to LA and am not

>doing too well right now. Spent 4 hours waiting at Shriners this morning

>for the Dr. to tell me that

>A) Shriners will not help us because there is already a plan in place with

>Dr.'s doing something (even if it might suddenly fail due to insurance

>problems, though they have already denied us access to the UCLA Dr.'s and

>Skylers mom possibly getting fired) but if he has serious orthopedic

>surgery needed at a later date - say age 14 or later - that we can

>probably get that taken care of.

> Shriners is not simply a drug dispensing organization.......

>C) Enbrel (a very expensive drug that Skyler needs) has been limited by the

>Shriners foundation in Los Angeles to only 5 patients due to cost issues

>and they have already allocated the 5 patients and there are no available

>funds (none of the five live in the U.S.)

>D) based on her visual review of Skylers condition this morning she says

>she does not agree that he needs any orthopedic equipment and would not

>approve any for him.

>E) and " Phoenix/Arizona Govt. programs should be in place to help in this

>case. "

>In her words our problem is a " Social Problem " and that our best solution

>at this point is probably the news station.

>

>I told her we are looking for some way to get him on a plan that would

>guarantee his treatment with no interruption and get us away from the

>idiots at the insurance co. Some sort of a safety net. I told her that I

>have several references of other kids with this condition at Shriners and

>mentioned Dr.' Emery up in Sacramento as encouraged by so many of you, she

>said Dr. Emery could not help either and that I should try to get state aid

>as I have been unemployed so long. I told her I can't as the state looks

>at Skyler's mom as being the primary care parent, regardless of how much

>time he spends with me. She say's I should go to court (pay the cost) to

>file and sue for position as primary custodian - causing grief with Skylers

>mom - taking lord knows how long to resolve - so I can get him on Access.

>I told her I spoke with several medical practitioners about Access and was

>told that they would not be capable of providing Skyler the specialized

>treatment due to the need for a Board Certified Pediatric Rheumatologist

>(of which there is not one in the state). She said, " See, it is a social

>problem " . No kidding.

>

>Then I spent an hour driving across LA another 4 hours at UCLA. where I am

>told our Rheumi has left UCLA and has moved to Washington State. The new

>Rheumi says Skyler looks very good and blood tests look good. She adjusted

>some of the medications and sent us on our way. Financial department does

>not have a clue what is going on with the insurance payment problems and

>can not figure out how much we owe them or for what visits. Good news is

>by the time I got out of the Dr.'s room the Finance people have gone home

>and I did not have to make a payment for that trip! Well, guess the

>billing is in the mail.

>

>I am going to sleep on this and gather my wits in the morning.

>

>~ [ & Skyler]

> shriners

>

>

> , I was so glad to read that you are going to be getting help from

>the Shriners. I am sure that must ease your mind a little. I hope that they

>will cover everything but if not then what help they can give will be a

>great blessing I am sure. I am sorry for what the insurance company is

>doing to you. Why do companies like this have to crap on everybody. I sure

>hope tha tyou get things worked out soon. Keep fighting, you are good with

>words and you will get things taken care of. How is Skyler doing these

>days? My kids and I think about him and you all the time. Hang in ther man

>things will get better.

> ~~I HOPE YOU DANCE~~

> crimsons@...

>

>

>

[Guest guest]

Sharon,

Thanks for the thoughts.

This Dr. stated that she was the " only Rheumatologist at the hospital " and that

she used to be a physical therapist. As she was specifically a pediatric Dr. I

can only assume that she treats only pediatric Rheumatology. Yet I did not ask

if she was Board Certified so truly can not say.

~

Re: Re: shriners

,

I am so sorry that things have not worked out for you at Shriners....

In fact, I have to wonder at some of the information that was given to

you.

I'm thinking that they could have helped you in one way or another.

Was the doctor that you saw a pediatric rheumy? If not I have to wonder

where her expertise in Skylers needs are. I am sure that she is a wonderful

doctor but sometimes the rhuemies see something that orthopedics don't.

I remember once asking about her getting a lift and was told oh no she

doesn't need one unless her discrepancy is more than 2 inches. Then I

talked to the ped rheumy and her PT and the next thing I know she has an

outside shoe lift

[Guest guest]

I am from Tenn. and I know that the Shriners here do help the children or

try to find a way to help for things they need. Just ask that is all you

> Outwit! Outlast! We're ALL WINNERS at by sharing

> our CMT lives with each other in an upbeat, generous

> and positive manner! WINNERS Can Manage This(= CMT) only

> here at our 'one-of-a-kind' group! Research has shown

> us that 70% of CMT diagnosis is Type 1A. CMT affects children

> every 19 out of 100,000 and this disease has spread 62.5% in

> the last 50 years alone. is committed to bring you not

> only positive sharing and new resources, but research and

> regenerative medicine news about CMT as well!

>

>

>

>

[Guest guest]

Patti, that was a very good response to from a younger person's

perspective. Thanks.

Debbie

Patti <pattijohnson@...> wrote:

I am getting in on the tail end of your posts here on this site and I don't know

all the specifics of your case. But, as I have reported before, I wasn't

diagnosed with scoliosis until I was 28 years old. The curvature was mild at

that point. If they had done surgery when I was young, like you, I would not

have the deformity that I have now. However, the doctors always told me that I

was too old for surgery. I was finally referred to a surgeon who said that I was

facing a terribly miserable and painful old age if I did nothing.

I had my surgery last year and he was able to make some correction, but the

spine had pretty much fused itself and could not be straightened fully. He

improved my curvature from a 94 degree lumbar Cobb angle to a 59 degree angle.

That's still a significant curve; but it will not get worse because the rods and

screws will hold it in place. I have no pain and have returned to my pre-surgery

routine. Yes, I have some limitations. But my attitude is good and I'm looking

forward to an active future. I hike, and work out with a personal trainer. I

have been advised to not do contact sports, or running. You are young and you

will recover so much more quickly. Your parents are wise to do the research

before making a decision. But I would say that today's technology is light years

ahead of where it was in the 1960's. So do not go into this with fear and

trepidation.

The two books that I read before my surgery were, " Scoliosis Surgery: The

Definitive Patient's Reference (3rd Edition) (Paperback) " by Wohlpert, and

" The Scoliosis Source Book " by Neuwirth and Osborn (Paperback -

May 7, 2001). Both are great books and will be very helpful to you and your

parents as you decide what the best options are for your own situation. Have you

visited the Scoliosis Research Society web page. Maybe some useful information

can be gained for you there also.

I wish you the best future you can possibly have.

Patti

Re: Shriners

I would love to tell him when I go back and if he tells me I need it,

but my parents are doing research and all that crap to find alternate

options because they have heard only bad things about it, so they are

doing everything they can so that I do not have surgery. It really

irritates me, because I have heard of no horror stories anywhere I

look, but since they found some. Then that means they have to defend

me and are doing almost anything so that I do not.

>

>

> I've been reading the conversations with and I just want to

> mention one thing to Chris.

>

> I had surgery in 1997 at age 50. The results were far better than

I

> ever imagined they could be. I wish there had been technology for

me

> such as they have today way back when I was a young person.

>

> I know that the surgery is a real big deal, but it is far better to

> have as a teen than as an adult.

>

> Also, the teens who have surgery now are restored to an almost

> perfectly straight spine.

>

> Don't be afraid of the surgery. In fact, I would campaign for the

> surgery because it is far easier to recover as a teen, and the

> correction is so significant. It will wash away all those years

> spent struggling with the brace.

>

> Jeanne

>