Update on

[Guest guest]

That is great news. I am happy to hear that.

Did she have an original RVAD? with the 37 degree curve?When was that diagnosed?

Robin Wasserman and Goldberg <RAWnHDG@...> wrote:

Hey Everyone,As you know, yesterday, we went to see Dr. D'Astous at the Shriner's Hospital in Salt Lake City, UT.We went there thinking that had idiopathic scoliosis and was progressing in her brace as the current in-brace x-ray taken in our orthopedist's office showed a progression from 16-degrees to 23-degrees. Also troubling was that the curve was apparently at T12-L4 instead of the earlier curve indicated around T7-L1. We thought this may have something to do with a possible tethered spinal cord. In addition, when we take the brace off , her curve seemed so much better than before, not worse.Interestingly enough, Dr. D'Astous and his team felt strongly that 's scoliosis is neither idiopathic nor progressing! In their experience, they see many children that have had thoracotomy-induced

scoliosis. 's mature teratoma (she had a tumor at 6 months old) required a thoractomy incision as evidence by an upper scar between 2 ribs. The apex of her curve is located at the scar. In brace, that curve measures 10-degrees (down from the original 37 degrees). Out of brace, that curve measures 15-degrees. It is located somewhere around the T6/7-T12 area. Where is the 23-degree curve? That 23-degree curve is a compensentory curve caused by an ill-placed trochanteric pad on the brace itself. When the brace is removed, that 23-degree curve is no longer there, her lumbar area is actually quite straight.We had already been in the process of getting a new brace as she has seriously outgrown the current brace. We will be taking new in-brace x-rays when we receive the brace (on oct 21st)and sending them to Dr. D'Astous.We were especially pleased to hear that there is a

connection between her current scoliosis and her earlier surgery. They said there haven't been any 'formal' studies that they know of regarding the thoracotomy-induced scoliosis but that is commonly what they find in their practice - children with previous heart surgeries, children with other surgeries, etc. - all seem to later develop a scoliosis in that area. There was no question of the link in their mind. Interestingly enough, they see that some of these curves actually spontaneously correct themselves. Given that 's RVAD angle approaches zero - 's curve could be correcting itself!! (there is no RVAD angle from her brace-induced curve as I mentioned earlier because it is in the lumbar region - too low in relation to her ribs to measure) However, the brace does diminish the curve at present from 15 degrees to 10 degrees and there are no compliance issues regarding wearing it - they all

felt it was a good idea to continue brace treatment and watch it closely - particularly more so when she reaches age 12-13. They felt she could get the same probably permanent correction with the brace at this point than casting would give her. They made it a point to say that casting works incredibly well for idiopathic infantile scoliosis and that 's is neither idiopathic nor infantile. Casting also works for more rigid curves, and is extremely flexible.I have to say - that team in SLC, UT is INCREDIBLE! They spent 3 solid hours - 3 HOURS! - pouring over all of her x-rays, taking a few more x-rays, thoroughly investigating every aspect - explaining every single thing - and they put the pieces of 's crazy puzzle together - something 13 other doctors have been unable to do. Despite the fact they do not recommend casting in her case, we were all very pleased with the outcome. I

still am in shock that her curve is correcting - although - as I may have mentioned before - she did look straighter when we looked at her in the bath at night - and given that the brace itself was causing a secondary curve - of course she was straight without the brace!!!That team is one of the most intelligent, unbiased, non-egotistical set of doctors I have EVER met! They were not pushing any agenda at all - they took a seriously look and came up with an intelligent cohesive picture!Robin __________________________________________________

[Guest guest]

Hi Robin.

Thanks for your note. My daughter has a 46 degree curve and

just started in a Boston Brace from Shriners in Philly. What city in

TX did you have 's brace made? We need to possibly have

adjustments made or get a different brace soon and we live in Austin,

TX.

Thanks.

Kipperman

Robin Wasserman and Goldberg wrote:

Hi,

Just wanted to update everyone on 's new TLSO.

Quick reminder of who we are: is 6 years old, had an original 37

degree curve, went to Shriners in SLC, UT for casting because we

thought she

had idiopathic scoliosis and was progressing in brace - Dr. D'Astous

fantastic phenomenal team discovered that her thoracic incision during

her

surgery to remove a tumor at 6 months was the cause of her current

scoliosis

and that she was not progressing in her brace, her brace was causing a

new

curve in her lumbar region. He did not recommend casting as she was

not

idiopathic, not infantile, and not progressing. Her original curve is

now

15 degrees (out of brace) 10-degrees in her old brace - we don't know

what

it is in her new brace yet. Her RVAD approaches zero out of brace.

I'm writing about her new brace because it is SO completely different

from

her old Boston brace. Her new brace LOOKS SO MUCH LIKE THE CASTS that

you

are all talking about! It closes in the front, it has a big hole for

her

belly, and when I was describing it to the doctors in SLC, UT they were

very

pleased and said that it is exactly how it should be. It stabilizes

her

pelvis - locks it into place straight (solving the problem of the old

brace

creating a curve in her lumbar region). I'm told the brace place here

in TX

(Dynamic Orthotics and Prosthetics) is on the 'cutting edge' of the new

brace technology. It's made of a different material than her old brace

(thinner and more flexible). As was described to me - thinking of the

pelvis

area as the ground floor of a building - it is important that this part

be

extremely level before putting on the next floor and the next and the

next.

Otherwise we end up with the leaning and curving tower of Pisa!! Just

as we

had with the old brace. The doctor that designs it - all I know him by

is

- he used to be a trauma surgeon until his daughter was born 20

years

ago with infantile scoliosis. Despite being a surgeon, he was

determined

that surgery was NOT the only way to solve the problem. Even with the

old

technology of 20 years ago - he was able to stabilize his daughter's

original 57-degree and 30-degree S-curves to a slightly less than

20-degree

curve today (she's 20 and no longer wears a brace). Apparently, he

travels

all over the country/world.

Anyway - I KNOW this group is for casting as an alternative and casting

is

important for infantile, idiopathic, and progressing curves! I just

wanted

to put it out there that bracing, even according to the big casting guy

Dr.

D'Astous! can work for other cases (flexible, older children) and be

effective (actually, Dr. D'Astous did say 'just as effective as

casting' but

I'm waiting for 's new x-rays to see if I agree or not). Each

case is

individual and needs to be evaluated individually. I just wanted to

put

this info out there just in case there was a remote chance that someone

else

in a similar boat as us!

Robin

[Guest guest]

One more thing...Is it possible to see a picture of 's brace?

Kipperman wrote:

Hi Robin.

Thanks for your note. My daughter has a 46 degree curve and

just started in a Boston Brace from Shriners in Philly. What city in

TX did you have 's brace made? We need to possibly have

adjustments made or get a different brace soon and we live in Austin,

TX.

Thanks.

Kipperman

Robin Wasserman and Goldberg wrote:

Hi,

Just wanted to update everyone on 's new TLSO.

Quick reminder of who we are: is 6 years old, had an original 37

degree curve, went to Shriners in SLC, UT for casting because we

thought she

had idiopathic scoliosis and was progressing in brace - Dr. D'Astous

fantastic phenomenal team discovered that her thoracic incision during

her

surgery to remove a tumor at 6 months was the cause of her current

scoliosis

and that she was not progressing in her brace, her brace was causing a

new

curve in her lumbar region. He did not recommend casting as she was

not

idiopathic, not infantile, and not progressing. Her original curve is

now

15 degrees (out of brace) 10-degrees in her old brace - we don't know

what

it is in her new brace yet. Her RVAD approaches zero out of brace.

I'm writing about her new brace because it is SO completely different

from

her old Boston brace. Her new brace LOOKS SO MUCH LIKE THE CASTS that

you

are all talking about! It closes in the front, it has a big hole for

her

belly, and when I was describing it to the doctors in SLC, UT they were

very

pleased and said that it is exactly how it should be. It stabilizes

her

pelvis - locks it into place straight (solving the problem of the old

brace

creating a curve in her lumbar region). I'm told the brace place here

in TX

(Dynamic Orthotics and Prosthetics) is on the 'cutting edge' of the new

brace technology. It's made of a different material than her old brace

(thinner and more flexible). As was described to me - thinking of the

pelvis

area as the ground floor of a building - it is important that this part

be

extremely level before putting on the next floor and the next and the

next.

Otherwise we end up with the leaning and curving tower of Pisa!! Just

as we

had with the old brace. The doctor that designs it - all I know him by

is

- he used to be a trauma surgeon until his daughter was born 20

years

ago with infantile scoliosis. Despite being a surgeon, he was

determined

that surgery was NOT the only way to solve the problem. Even with the

old

technology of 20 years ago - he was able to stabilize his daughter's

original 57-degree and 30-degree S-curves to a slightly less than

20-degree

curve today (she's 20 and no longer wears a brace). Apparently, he

travels

all over the country/world.

Anyway - I KNOW this group is for casting as an alternative and casting

is

important for infantile, idiopathic, and progressing curves! I just

wanted

to put it out there that bracing, even according to the big casting guy

Dr.

D'Astous! can work for other cases (flexible, older children) and be

effective (actually, Dr. D'Astous did say 'just as effective as

casting' but

I'm waiting for 's new x-rays to see if I agree or not). Each

case is

individual and needs to be evaluated individually. I just wanted to

put

this info out there just in case there was a remote chance that someone

else

in a similar boat as us!

Robin

[Guest guest]

Dear Gail

Good to hear that still has his sense of humour with him. Hoping everthing goes well and wishing you and your family all the best for the holiday season. Praying that the New Year brings a turn of good luck and fortune to you.

All the best JenniGail Forbes <charade799@...> wrote:

Just got in from the hospital a few minutes ago. They have a bed for in the morning. If all goes well he will have a new unit tomorrow and 3 leads. He asked since this unit still has battery left in it can he get a credit. At least his humor is there. Going to bed shortly. Will keep everyone posted as Soon as I get back to the pc.

GailPlease visit the Zapper homepage athttp://www.ZapLife.org

Find local movie times and trailers on Movies.

[Guest guest]

To all of you that have been keeping up on my son, , and his

basketball. Well, if you remember before I reported that he was

showing signs of aggressiveness (in a good way)on the court. Well,

the season is about half way over and his coach says he's the best

player on the team. I ask every week to see what he needs to work

on. I haven't told the coach what I doing only that I'm working

with him on his game, especailly the mental side of it. He is

amazed at Tom's skill " for only a third grader " were his exact

words. One of the things I have worked with him is the free

throws. This came in handy last week when he made both of his

shots!!! This week we worked more on stealing the ball from the

other team. Although Tom holds the record for the most steals, he

proved himself again this week with a record 6 steals. His team put

8 points on the board, 6 of them were from Tom.

Yes, some of the tone you hear in this post is from a proud mom, I'm

so proud of all my children. So much of the tone you hear is from a

practitioner who is ever amazed at the success of EFT.

Thank you all for allowing me to share and learn from each of you.

Sincerely,

Jewelie Weaver

[Guest guest]

Hi Robyn

No comment on the SSEP test???? But great news for and her

brace. Good on you for seeking a second opinion with Dr D'Astous too.

Jacki

> Hi All,

> Here's a quick update on my 7 year old daughter, . I am

HAPPY to

> report that 's original 37-degree curve is down to 12-

degrees!!!!

>

> She's been in a brace that looks very much like the casts since

October (a

> picture is posted on this forum). Dr. D'Astous from SLC, UT said

that this

> particular brace was the most appropriate course of action for

's

> specific case (again, just to make the disclaimer - I know this

site is for

> casting, but Dr. D'Astous said that, in his opinion, for 's

case, the

> brace will be just as effective as a cast would be). AND IT IS!!!

>

> I have to say that visually, I can see the difference - her spine

looks

> really straight - but I waited to post until after I got the x-

rays

> yesterday to have real data to confirm. She looks great.

>

> As for her possible tethered spinal cord. I would love to hear

from any

> others who have had a SSEP (somatosensory electrode potential)

test. We

> have been following 's 'functionality' via this test becuase

her MRI is

> undeniably unclear (7 independent pediatric neuroradiologist

cannot decide

> whether or not her cord is tethered). Our neurologist is using

SSEPs as a

> way to measure functionality since, besides scoliosis and a 'funky

MRI -

> really low lying conus, but not definitively low enough to call it

> tethered " , she has no other known symptoms for a tethered cord.

The doctor

> who read this latest report read the raw data differently than the

doctor

> who read it 6 months ago and came up with a different conclusion.

He

> concluded that her spinal cord reaction was assymmetrically

delayed

> (indicating possible tethered cord), whereas 6 months ago she was

deemed

> symmetrical and normal. Our neurologist then read the raw data

and also

> gave it to another independent neurologist who also read the raw

data and

> the two of them decided that she was actually 'unchanged' from 6

months ago.

> I just wanted to let people know that SSEP testing is most

accurate

> comparing one person's test to the same person's test taken at a

different

> time rather than just looking at the raw numbers and comparing it

to some

> 'general population'. In other words, what we learned from

this 'scare' was

> that it is far more important to look and compare 's data

from various

> time points to see if it is changing, than it is to compare

's current

> test results to some 'theoretical' number. I'd love to hear any

one else's

> experience with this.

>

> Regards,

> Robin

[Guest guest]

Hi Robin,

Great news on the good correction has gotten. I

hope she keeps going in the right direction.

My Braydon had a tethered cord release surgery just

before his 4th birthday. For him, it was a very good

thing we did it. He had some subtle, but obvious

symptoms that the cord was indeed tethered. Within 6

weeks of his release surgery, he grew 3 inches and

gained 3 pounds. He is doing very well and we are

confident he had surgery in time to avoid any

permanent nerve damage (i.e., he has full bowel and

bladder sensation, etc.).

I don't have any experience with the SSEP monitoring

that you mentioned. I'm sure its very confusing to

get so many opinions and to not know what's going on.

Where's that crystal ball when we need it? is

at an age where she's going to be growing again, in

spurts. Maybe you will know for certain if the cord

is tethered if she begins to show symptoms (i.e.,

occasional leg/foot pain/weakness, occasional

bladder/bowel changes, occasional lower back pain,

etc.). When I say occasional, I mean occasional -

could be once a month, or once every few weeks, or

whatver. Very subtle in the beginning.

I hope everything continues to go well. Hopefully Dr.

D'Astous will continue his " plan " for her.

Carmellmom to Kara 18, idiopathic scoliosis, Blake 13, GERD and Braydon 9,

VACTERL, GERD, DGE, Titanium Rib Project patient #137 (dbl implant 8/01),

thoracic insufficiency, rib anomalies, congenital scoliosis (fusion surgery

5/96), missing coccyx, fatty filum/TC (released 4/99), 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, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion,

clubfoot with 8 toes (reconstructed 2/96, 3/96, 1/97, 3/04), pes cavus, single

umblilical artery, tonsil-adnoidectomy and ear tubes (3/98), etc.

http://carmellb-ivil.tripod.com/myfamily/

__________________________________________________

[Guest guest]

Great News Robin...

Can we talk again on the phone

I have a bunch of questions for you

Thanks

I can call you If that is OK???or the other way around

Robin Wasserman and Goldberg <RAWnHDG@...> wrote:

Hi All,Here's a quick update on my 7 year old daughter, . I am HAPPY to report that 's original 37-degree curve is down to 12-degrees!!!!She's been in a brace that looks very much like the casts since October (a picture is posted on this forum). Dr. D'Astous from SLC, UT said that this particular brace was the most appropriate course of action for 's specific case (again, just to make the disclaimer - I know this site is for casting, but Dr. D'Astous said that, in his opinion, for 's case, the brace will be just as effective as a cast would be). AND IT IS!!!I have to say that visually, I can see the difference - her spine looks really straight - but I waited to post until after I got the x-rays yesterday to have real data to confirm. She looks great.As for her possible tethered

spinal cord. I would love to hear from any others who have had a SSEP (somatosensory electrode potential) test. We have been following 's 'functionality' via this test becuase her MRI is undeniably unclear (7 independent pediatric neuroradiologist cannot decide whether or not her cord is tethered). Our neurologist is using SSEPs as a way to measure functionality since, besides scoliosis and a 'funky MRI - really low lying conus, but not definitively low enough to call it tethered", she has no other known symptoms for a tethered cord. The doctor who read this latest report read the raw data differently than the doctor who read it 6 months ago and came up with a different conclusion. He concluded that her spinal cord reaction was assymmetrically delayed (indicating possible tethered cord), whereas 6 months ago she was deemed symmetrical and normal. Our neurologist then read the raw data and also

gave it to another independent neurologist who also read the raw data and the two of them decided that she was actually 'unchanged' from 6 months ago. I just wanted to let people know that SSEP testing is most accurate comparing one person's test to the same person's test taken at a different time rather than just looking at the raw numbers and comparing it to some 'general population'. In other words, what we learned from this 'scare' was that it is far more important to look and compare 's data from various time points to see if it is changing, than it is to compare 's current test results to some 'theoretical' number. I'd love to hear any one else's experience with this.Regards,Robin __________________________________________________

[Guest guest]

Robin,

Congratulations on the decrease of 's curve!

The Shriners Hospital, its doc's, and the entire staff are out of this

world!

Thanks for updating us on her great progress.

Sincerely,

HRH

Update on

>

> Hi All,

> Here's a quick update on my 7 year old daughter, . I am HAPPY to

> report that 's original 37-degree curve is down to 12-degrees!!!!

>

> She's been in a brace that looks very much like the casts since October (a

> picture is posted on this forum). Dr. D'Astous from SLC, UT said that

> this

> particular brace was the most appropriate course of action for 's

> specific case (again, just to make the disclaimer - I know this site is

> for

> casting, but Dr. D'Astous said that, in his opinion, for 's case, the

> brace will be just as effective as a cast would be). AND IT IS!!!

>

> I have to say that visually, I can see the difference - her spine looks

> really straight - but I waited to post until after I got the x-rays

> yesterday to have real data to confirm. She looks great.

>

> As for her possible tethered spinal cord. I would love to hear from any

> others who have had a SSEP (somatosensory electrode potential) test. We

> have been following 's 'functionality' via this test becuase her MRI

> is

> undeniably unclear (7 independent pediatric neuroradiologist cannot decide

> whether or not her cord is tethered). Our neurologist is using SSEPs as a

> way to measure functionality since, besides scoliosis and a 'funky MRI -

> really low lying conus, but not definitively low enough to call it

> tethered " , she has no other known symptoms for a tethered cord. The

> doctor

> who read this latest report read the raw data differently than the doctor

> who read it 6 months ago and came up with a different conclusion. He

> concluded that her spinal cord reaction was assymmetrically delayed

> (indicating possible tethered cord), whereas 6 months ago she was deemed

> symmetrical and normal. Our neurologist then read the raw data and also

> gave it to another independent neurologist who also read the raw data and

> the two of them decided that she was actually 'unchanged' from 6 months

> ago.

> I just wanted to let people know that SSEP testing is most accurate

> comparing one person's test to the same person's test taken at a different

> time rather than just looking at the raw numbers and comparing it to some

> 'general population'. In other words, what we learned from this 'scare'

> was

> that it is far more important to look and compare 's data from

> various

> time points to see if it is changing, than it is to compare 's

> current

> test results to some 'theoretical' number. I'd love to hear any one

> else's

> experience with this.

>

> Regards,

> Robin

>

>

>

>

>

>

>

[Guest guest]

Hi Robin,

I was interested to hear about the success you have had with the brace and am happy to hear about 's progress.

You wrote that you had a picture posted of the brace but I can't seem to find it. Is it attached to your email? If not, where do I find it? My son's brace seems to wiggle down after a day of running around and I'm thinking there must be a better device with shoulder straps to prevent this??? Is this what has?

Anyway, really glad to hear is doing so well. it gives me inspiration!!

Thanks.

Judy

Update on

Hi All,Here's a quick update on my 7 year old daughter, . I am HAPPY to report that 's original 37-degree curve is down to 12-degrees!!!!She's been in a brace that looks very much like the casts since October (a picture is posted on this forum). Dr. D'Astous from SLC, UT said that this particular brace was the most appropriate course of action for 's specific case (again, just to make the disclaimer - I know this site is for casting, but Dr. D'Astous said that, in his opinion, for 's case, the brace will be just as effective as a cast would be). AND IT IS!!!I have to say that visually, I can see the difference - her spine looks really straight - but I waited to post until after I got the x-rays yesterday to have real data to confirm. She looks great.As for her possible tethered spinal cord. I would love to hear from any others who have had a SSEP (somatosensory electrode potential) test. We have been following 's 'functionality' via this test becuase her MRI is undeniably unclear (7 independent pediatric neuroradiologist cannot decide whether or not her cord is tethered). Our neurologist is using SSEPs as a way to measure functionality since, besides scoliosis and a 'funky MRI - really low lying conus, but not definitively low enough to call it tethered", she has no other known symptoms for a tethered cord. The doctor who read this latest report read the raw data differently than the doctor who read it 6 months ago and came up with a different conclusion. He concluded that her spinal cord reaction was assymmetrically delayed (indicating possible tethered cord), whereas 6 months ago she was deemed symmetrical and normal. Our neurologist then read the raw data and also gave it to another independent neurologist who also read the raw data and the two of them decided that she was actually 'unchanged' from 6 months ago. I just wanted to let people know that SSEP testing is most accurate comparing one person's test to the same person's test taken at a different time rather than just looking at the raw numbers and comparing it to some 'general population'. In other words, what we learned from this 'scare' was that it is far more important to look and compare 's data from various time points to see if it is changing, than it is to compare 's current test results to some 'theoretical' number. I'd love to hear any one else's experience with this.Regards,Robin

[Guest guest]

Hi ,

<<I've heard about but he doesn't think she's a

canditate for that but is willing to send her Films to

doctor who came up with this to see so that's

a plus. But you have to be aproved for this does

anyone know about how we find out about that.>>

I agree that you need to wait until the MRI results

are in. That may or may not change the plans for

.

Dr. was my son's VEPTR implant surgeon. We

now stay local in SLC for expansion surgeries. I

attribute Braydon's good outcome to our local doc (now

a VEPTR surgeon, Dr. ) to helping get

Braydon into the program when he did. Braydon was

6yrs old at the time of his VEPTR implant surgery.

Yes, you have to be approved to be a VEPTR patient.

There is an evaluation process that each patient must

go through. All of the medical background needs to be

clarified. If there are underlying issues (i.e.,

tethered spinal cord, etc.) those things need to be

addressed before being accepted into the VEPTR

program. If there are other medical issues that need

to be taken care of, they usually need to be done

prior to implant surgery too. For example, Braydon

had to get his GERD under control and have the

urologist release him from accute care before he could

be accepted as a patient. They don't want anything to

interfere with the recovery process. Surgery anytime

is huge. The VEPTR surgery is huge. The child needs

to be overall healthy and as strong as possible.

Obviously, if the child is critical and this would be

an immediate life-saving procedure, those things are

taken into consideration, but that's not the norm.

Carmell

__________________________________________________

[Guest guest]

I am sorry you are having bad experiences with Drs. Our pediatrician learned a

lot through my 9 year old. She went through a lot and it took us years to

figure it out. With my youngest one the same pediatrician has be very careful

with every fever she has had she ran tests that normally would not be run and on

the 4th or 5th cyclical fever she made us an appointment with a ID so we have

truly been blessed.

Holly White

Update on

Hi Everyone,

I don't post much anymore, but try to read posts.

Fran I'm so sorry to hear about your school struggles with re to

ph. It's terrible that any child could be treated that poorly.

I must admit over this past year (Kindergarten) I've found 's

school experience less than satisfactory at times. has an IEP

and even her own EA (eduactional assistant)yet still I find alot of

minimizing of what is going through. gets very weepy, and

has the noice, and low tolerance for commotion others have posted

about recently around and during her cycle as well. Her grades are

fine! LOL

's FMF test came back negative a month ago. She is on the list to

see Dr Kastner, Beverly hopes before the summer is out.

's extremity pain is more seemingly chronic, her abdominal pain

over the past few months has been severe, I've feared it was her

appendix.... I don't take her to the ER or MD often. She doesn't

deserve the experience, and I can't handle cold,indifferent medical

staff. I'm just grateful after a few days things get better and the

severe pain seems to come in waves, if it were persistent I'd have to

succumb to medical assistance. I find it shocking when I read about

good clinical experiences on the board. I this week took in to

beg our GP for a pediatric referal, he feels she doesn't need one, I

won with the excuse that in the fall she'll need an updated letter

for school. ( There's a 4-5 month wait list to see the pediatrician

here.)I'm soooo tired of begging for medical care for my child. More

tired of hearing her moan in her sleep, watching her use her arms to

lift her legs out of the car,yell that everything is to loud, or cry

when she misses out because she doen't feel well! Her Rashes and

shooting eye pain are much less frequent, but she has a lot of

headaches.

As a practicing medical professional I can safely say I went into my

career to help people, pride should not be involved. If you don't

know what to do, be honest and work with me, don't turn us away, or

poo-poo my concerns. " Listen " (As much as possible in the alotted

10min) I learned in nursing school that pain was and is what a

patient says it is, but maybe that wasn't taught in the classes of

every helping profession.

I'd send you all cheese to go with my whine, but thanks for listening.

May we all have a decent night and enjoy some sleep, it can improve

outlook.

Best wishes,

Walton

(6) ?

Vancouver Island Canada

------------------------------------------------------------------------------

[Guest guest]

Hi ,

has the same symptoms as Shane. The rashes (very infrequent),

shooting eye pain, abdominal pain, leg pain where he needed assistance

walking . All of these symptoms were in-between his fever cycles. It used

to be that he would only be sick when he was fevering. This is no longer

true. The whole thing just breaks my heart.

Shane is 7. When he was 2 he was diagnosed with . But last year his

symptoms started changing. Rashes began periodically. They seemed to show

up after prednisone was administered. They tell me he is not allergic to

Orapred. However, during his last episode I consciously gave him

prednislone (sp?) (generic form of prednisone) and a rash did not develope.

Maybe it was coincidence, I'm not sure. Then, this past January, he had a

really BAD month. His legs really hurt, could hardly get out of bed and he

began missing a lot of school. He also had shooting eye pain and

sensitivity to light and complained almost daily of abdominal pain. I took

him to see his pediatric rehummy, and she said that she wasn't sure what he

had but it wasn't JRA, still probably .

I wasn't satisfied with her response and I felt like she was " blowing me

off " . I wanted a second opinion. Shane saw a doctor at Stanford and she

thought with the new developing symptoms that it may be JRA. She put him on

Naproxen twice daily and his pain has stopped. He doesn't complain of

stomach pain anymore (that was a daily occurance every day for months) and

he doesn't complain that his legs hurt. No more eye pain either.

I'm still not 100% convinced that he has JRA as he doesn't fit the profile

perfectly. We're scheduled to see Dr. Kastner in September. I am so

looking forward to seeing what he thinks he may have. After reading you

post, I thought, yes, this could be . Sooooo frustrating not knowing

what it is.

Because shares alot of Shane's symptoms, I thought you might want to

know what we did.

Take care,

Beverly Dettis

Roseville, CA

Update on

> Hi Everyone,

> I don't post much anymore, but try to read posts.

>

> Fran I'm so sorry to hear about your school struggles with re to

> ph. It's terrible that any child could be treated that poorly.

> I must admit over this past year (Kindergarten) I've found 's

> school experience less than satisfactory at times. has an IEP

> and even her own EA (eduactional assistant)yet still I find alot of

> minimizing of what is going through. gets very weepy, and

> has the noice, and low tolerance for commotion others have posted

> about recently around and during her cycle as well. Her grades are

> fine! LOL

>

> 's FMF test came back negative a month ago. She is on the list to

> see Dr Kastner, Beverly hopes before the summer is out.

>

> 's extremity pain is more seemingly chronic, her abdominal pain

> over the past few months has been severe, I've feared it was her

> appendix.... I don't take her to the ER or MD often. She doesn't

> deserve the experience, and I can't handle cold,indifferent medical

> staff. I'm just grateful after a few days things get better and the

> severe pain seems to come in waves, if it were persistent I'd have to

> succumb to medical assistance. I find it shocking when I read about

> good clinical experiences on the board. I this week took in to

> beg our GP for a pediatric referal, he feels she doesn't need one, I

> won with the excuse that in the fall she'll need an updated letter

> for school. ( There's a 4-5 month wait list to see the pediatrician

> here.)I'm soooo tired of begging for medical care for my child. More

> tired of hearing her moan in her sleep, watching her use her arms to

> lift her legs out of the car,yell that everything is to loud, or cry

> when she misses out because she doen't feel well! Her Rashes and

> shooting eye pain are much less frequent, but she has a lot of

> headaches.

>

> As a practicing medical professional I can safely say I went into my

> career to help people, pride should not be involved. If you don't

> know what to do, be honest and work with me, don't turn us away, or

> poo-poo my concerns. " Listen " (As much as possible in the alotted

> 10min) I learned in nursing school that pain was and is what a

> patient says it is, but maybe that wasn't taught in the classes of

> every helping profession.

>

> I'd send you all cheese to go with my whine, but thanks for listening.

> May we all have a decent night and enjoy some sleep, it can improve

> outlook.

> Best wishes,

>

> Walton

> (6) ?

> Vancouver Island Canada

>

>

>

>

>

>

[Guest guest]

This is very frustrating, I am happy that We ruled out the really bad things it could be but, I still do not know what is causing the pain so I can get rid of it. Sat. will be 3 months. I would appreciate continued prayers in this issue. I certainly will add U 2 my prayers Connie.... you might want to check into seeing a neurologist... could be something with your back~ which can create pain in hips and throughout the legs amoung many other places. Might have something benched up~ Happy 2 hear at least your hip is in good shape. I hope how soon your feeling better though sweetie! Take care of yourself your in my thoughts~

[Guest guest]

Hi Jen,

Sorry to hear about your bad week...good for you on

getting some super sunscreen!

Donna

--- Dahlstrom <volleyjen0416@...>

wrote:

> Hi Everyone, well I haven't been having a very good

> week

>

> Sunday, I got sunburned, then Wednesday night after

> bowling I didn't feel well.....upset stomach &

> headache.

>

__________________________________

Mobile

Take with you! Check email on your mobile phone.

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[Guest guest]

Oh Jen....sorry to hear about the sunburn. Aloe vera juice or gel

and cool compresses is really the best thing for it after the fact.

I am also so glad to hear you bought some super duper suncreen.

Living in Texas I have to be careful too, and I don't leave home

without slathering it on my face in the morning (Gawd, I hate those

wrinkles...LOL).

Robin

> Hi Everyone, well I haven't been having a very good week

>

> Sunday, I got sunburned, then Wednesday night after bowling I

didn't feel well.....upset stomach & headache.

>

> Today (Thursday) I finally felt better so I went and played

volleyball inside for 3 hours! WOW....it was 90 degrees outside and

even hotter inside but I didn't want to burn again so I played.....

My skin will start to peel soon and it finally feels better so I

guess I will live LOL Don't worry I went out and bought spf 48

sunscreen -- sweatproof, waterproof, and it's not suppose to run in

my eyes so I'll find out. I'm hoping to be back in my pool by

tomorrow or Saturday at the latest.

>

> So my exercise so far this week has been:

>

> Monday - Swim class - 45 minutes

>

> Wednesday - Bowling - 2 hours

>

> Thursday - Volleyball - 3 hours

>

> I hope that I will have a better weekend!

>

>

>

>

>

>

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

> Discover

> Have fun online with music videos, cool games, IM & more. Check

it out!

[Guest guest]

cathy,

what a lot of information you've had to digest in the last couple of months.

i'm

glad that you have a good team working for lauren now, and most importantly, you

feel that this is the best direction for her. please let us know when her

surgeries are so that we can send good vibes your way.

how is lauren doing emotionally and physically with all of these changes? it

always seems like kids are much more adaptable than we adults are.

all my best,

deshea

We returned late last night from Philly.The appt was very productive. The Shriner's are going to take care of her Scoliosis and they referred her to a peds surgeon and an neurosurgeon at the Children's temple hospital which is hooked to them. What it seems is that what ever Tricare doesn't cover the Shriner's are going to cover. We have to get and send the operative report from her biopsy surgery. Then they are going to get back to us within a week and schedule surgery to remove the tumor. This Surgery should be done with in the next 3-4 weeks. They want her to have at least a month recovery time before going any surgeries for her Scoliosis Dr Betz from the Shriner's will be trying to get a Veptr approval for her case and she should be scheduled for that Surgery within 3-4 months if the Veptr isn't approved by the time She has a surgery date then they will be putting in the growing rods. She'll have extension surgeries the first time around 4 months then after that around ever 6 months. Dr Betz's agreed with us that fusing her spine was not a good idea right now and that's what the Naval Hospital wanted to do. As for folowing her NF1 disease I believe they are going to follow that to but I'm not totally sure my head was reeling by the time we talked with everyone. I will let you'll know when we get the surgery date scheduled.

[Guest guest]

I don't even think she knows what is going on really all she realizes is that she has a problem with her back and everyone wants to look at it. Soon as I know dates I'll let everyone know.

Re: Update on

cathy,what a lot of information you've had to digest in the last couple of months. i'mglad that you have a good team working for lauren now, and most importantly, youfeel that this is the best direction for her. please let us know when hersurgeries are so that we can send good vibes your way.how is lauren doing emotionally and physically with all of these changes? italways seems like kids are much more adaptable than we adults are.all my best,deshea

[Guest guest]

,

Glad to

hear that things are finally going in your favor. Just a quick question, have

the docs make any comments about once the tumor is out, that the spine may

straighten itself out on it’s own? Was curious about that.

Betty

Madison, WI

[Guest guest]

Hopefully my reply will come through. I am having problems with all of my messages either taking 24 hours to post or they bounce back to me entirely.

Anyway, I was just thinking recently about and was wondering how she was doing. It sure sounds like she is in good hands with Dr. Betz. Be sure to post when you get surgery dates.

-------------- Original message --------------

We returned late last night from Philly.The appt was very productive. The Shriner's are going to take care of her Scoliosis and they referred her to a peds surgeon and an neurosurgeon at the Children's temple hospital which is hooked to them. What it seems is that what ever Tricare doesn't cover the Shriner's are going to cover. We have to get and send the operative report from her biopsy surgery. Then they are going to get back to us within a week and schedule surgery to remove the tumor. This Surgery should be done with in the next 3-4 weeks. They want her to have at least a month recovery time before going any surgeries for her Scoliosis Dr Betz from the Shriner's will be trying to get a Veptr approval for her case and she should be scheduled for that Surgery within 3-4 months if the Veptr isn't approved by the time She has a surgery date then they will be putting in the growing rods. She'll have extension surgeries the first time around 4 months then after that around ever 6 months. Dr Betz's agreed with us that fusing her spine was not a good idea right now and that's what the Naval Hospital wanted to do. As for folowing her NF1 disease I believe they are going to follow that to but I'm not totally sure my head was reeling by the time we talked with everyone. I will let you'll know when we get the surgery date scheduled.

[Guest guest]

Betty

No nothing was said about that. It sure would be nice if her spine did go back some. They did some check yesterday and said there is no bent to her spine it was rigged which he said was not a good thing and more reason to get her going quickly.

RE: Update on

,

Glad to hear that things are finally going in your favor. Just a quick question, have the docs make any comments about once the tumor is out, that the spine may straighten itself out on it’s own? Was curious about that.

Betty

Madison, WI

[Guest guest]

Thanks for the thoughts. The only bad thing we found out that Dr Betz will do the first surgery but will be turning her over to another doctor there at Shriner's as he can't keep up with all the expansions of the new kids coming in he did say if it was alright with us what could we really say. If they work with him I'm sure they are great too.

Re: Update on

Hopefully my reply will come through. I am having problems with all of my messages either taking 24 hours to post or they bounce back to me entirely.

Anyway, I was just thinking recently about and was wondering how she was doing. It sure sounds like she is in good hands with Dr. Betz. Be sure to post when you get surgery dates.

-------------- Original message --------------

We returned late last night from Philly.The appt was very productive. The Shriner's are going to take care of her Scoliosis and they referred her to a peds surgeon and an neurosurgeon at the Children's temple hospital which is hooked to them. What it seems is that what ever Tricare doesn't cover the Shriner's are going to cover. We have to get and send the operative report from her biopsy surgery. Then they are going to get back to us within a week and schedule surgery to remove the tumor. This Surgery should be done with in the next 3-4 weeks. They want her to have at least a month recovery time before going any surgeries for her Scoliosis Dr Betz from the Shriner's will be trying to get a Veptr approval for her case and she should be scheduled for that Surgery within 3-4 months if the Veptr isn't approved by the time She has a surgery date then they will be putting in the growing rods. She'll have extension surgeries the first time around 4 months then after that around ever 6 months. Dr Betz's agreed with us that fusing her spine was not a good idea right now and that's what the Naval Hospital wanted to do. As for folowing her NF1 disease I believe they are going to follow that to but I'm not totally sure my head was reeling by the time we talked with everyone. I will let you'll know when we get the surgery date scheduled.

[Guest guest]

I agree that if they work with Dr. Betz that they are probably very good. I think all of the Shriner's docs are top notch. It worked out the same for us with the Erie Shriners. I ended up with Dr. Khoury because Dr. is so busy, but I am okay with that.

--------- Re: Update on

Hopefully my reply will come through. I am having problems with all of my messages either taking 24 hours to post or they bounce back to me entirely.

Anyway, I was just thinking recently about and was wondering how she was doing. It sure sounds like she is in good hands with Dr. Betz. Be sure to post when you get surgery dates.

-------------- Original message --------------

We returned late last night from Philly.The appt was very productive. The Shriner's are going to take care of her Scoliosis and they referred her to a peds surgeon and an neurosurgeon at the Children's temple hospital which is hooked to them. What it seems is that what ever Tricare doesn't cover the Shriner's are going to cover. We have to get and send the operative report from her biopsy surgery. Then they are going to get back to us within a week and schedule surgery to remove the tumor. This Surgery should be done with in the next 3-4 weeks. They want her to have at least a month recovery time before going any surgeries for her Scoliosis Dr Betz from the Shriner's will be trying to get a Veptr approval for her case and she should be scheduled for that Surgery within 3-4 months if the Veptr isn't approved by the time She has a surgery date then they will be putting in the growing rods. She'll have extension surgeries the first time around 4 months then after that around ever 6 months. Dr Betz's agreed with us that fusing her spine was not a good idea right now and that's what the Naval Hospital wanted to do. As for folowing her NF1 disease I believe they are going to follow that to but I'm not totally sure my head was reeling by the time we talked with everyone. I will let you'll know when we get the surgery date scheduled.

[Guest guest]

Gail,

So glad to hear about things going better for . I bet the boating made him feel so much better. I know that when I can go and do something that I haven't been able to do for a while due to my heart stuff it makes me feel so much more alive and grateful for what I do have.

Hugz to you both,

Yesterday (seems like it was last month) went in to have his unit (Contrek Renewal/3 lead) checked by the EP. Most of the nurses did not know what a NIPS was. Oh well. he got it checked and set 6 ways to Sunday until they found the right set. After he came back to his room they let him relax for 3 hours then put a camera down his throat and into his heart, checking his atrium for clots that may have formed while his unit was messed up. No clots! Took a weight off all (including his EP) shoulders. The whole day from start to finish was 15 hours. Got in last night and we just went to bed. Totally wiped out, but feeling better knowing things were better.About 6 PM we went out on our friends boat. at the helm feeling like a person again. It really felt good watching him do something he loves that he hasn't even been able to think about for so long. His color is good, breathing is good and his hands were warm!!!I told the EP I was going with a class action because of the way we were treated. He understood after I stated a few things and he checked with a nurse in his office about the way the billing went. As I informed the EP, if Guidant knew the unit was bad why was it sent to the EP to put into someone? The fact that Guidant groosley (SP) failed to inform, neglected to correct, and just handled things so badly that I had no faith in them. We were offered a new unit if we wanted but with all the meds that is on he probably would not make it through surgery. will be monitored closely for a while to make sure the adjustment remains safe for him.Like I said earlier, it has been a long road, but with luck we will do good. The group hug really helped. Shortly after 9:30 the other night he got very calm and said "everything will be fine, I can feel it". I never told him about the group hug that night, so for those who do not believe - believe it does happen.Gail

M in CA

[Guest guest]

Hi Gail:

How is doing? I hope all is well or at least better. Everyone please check in every once in a while. Love TURKcharade799@... wrote:

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