Update on

[Guest guest]

Hi , how are you? It's great news that s curve has remained

the same!

I've read your post and want to respond, but I feel so emotional I

hope it doesn't come across the wrong way!

I know for the short term a brace may be easier for your beautiful

little boy. My little boy didn't walk or talk or even crawl

until he was two as well, and I completely understand your reasons

for this.

If I had at two again like little , I would advocate for

casting. I never got that chance and now is four years old.

A cast like Dr Mehtas cast will allow for proper chest expansion.

has only half a heart and his cardiologist can still check his

chest and perform an echo in his cast.

Although it seems hard for these percious babies to be in the cast

(although loves his, it's really quite odd) it is honestly the

best and kindest thing for your baby.

Have you read Dr Mehtas longitudinal study? We all know casting can

resolve a progressive scoliosis, and I do know has another

condition which means it may be a syndrome. The casts would however,

effectively stop the curve from progressing further and reduce

s rib hump. Bracing will only maintain partial correction.

Growing rods could be delayed further, giving more time to

develop. When was two, his curve was at 40 degrees, and they

wanted to fuse him at age six. They wanted to put growing rods in

now. With casting, Dr Mehta believes could get to 10 without

major surgery! Casting buys our kids time where as bracing doesn't.

I know I am not coming across very tactful, and I am so sorry for

that. I only have you and s best interests at heart. I made a

mistake and didn't act quick enough for , and that golden

window of opportunity has gone.

Also, a brace is not effective for rigid curves. s curve is a

rigid curve, so no matter how much he wore his brace, even 24/7 would

not had made a difference for him.

I hope you can see I am not trying to attack you, rather, trying very

hard to help!

I think you are a very compassionate mummy and is lucky to

have you as his mum!

Take care ,

(Mum to , 4 years, Hypoplastic left heart syndrome, Dyspraxia,

Progressive infantile scoliosis)

>

> Hi guys

>

> We went to ¹s back appointment last Friday and found out what

the

> probable plan for is.

>

> His back has roughly stayed the same in his cast. About 30

degrees. The dr

> said it looks likely that will have growing rods put in his

back when

> he is about 4. The cast is keeping his scoliosis in check but it

is not

> really getting any better (and I thought it was!). He said when

kids have

> something else wrong as well ( has Pierre Robyn Sequence)

this is

> sometimes the case. There is a small chance his scoliosis may

improve but

> it is better to know all the facts and plan for the future.

>

> With this in mind I have written to the doctor to ask if we can go

back to

> the first brace that had.

>

> It came from Belgium and was a little jacket that had zips down the

side so

> it could be removed. got okay correction in that the first

3 months

> he wore it. It is fitted while he is asleep and plaster is put in

the

> middle of the jacket. I didn¹t like it first time round, but

compared to

> the POP cast that has now, I think it would make his life so

much

> better.

>

> He, unlike any of your children, (I think) is still unable to sit,

crawl and

> obviously walk, due to being in and out of hospital so much for his

first

> year. His weight is very poor and he has a very bad cough which

makes him

> sick a lot. I feel he would have a better life in a jacket that

could be

> removed for a very quick bath and also enable the doctors to listen

to his

> chest if he was poorly. I am now an old pro at all this scoliosis

lark (!)

> and would definitely keep the jacket on, as I know that is the main

reason

> that brace¹s fail because parents take them off. I would just like

to give

> his poor skin a chance and also the last cast changed showed 2

horrible

> pressure sores that made me feel awful.

>

> is coming up to 2 in February, and I just want to do the

best for my

> little man.

>

> Hugs to you all

>

> x

>

>

>

>

[Guest guest]

You might also ask about making the cast into a brace. It doesn't hold up for a

long time but maybe they could do that for a week before the change to have

something on and let him have time for baths and fresh air. Also some people

have had waterproof casts that would allow your son to take a bath with the

cast on.

I too know how you feel about the delay in doing things, but I would ask a

therapist about it. My daughter was delayed in many ways, but she wasn't in a

brace or cast at the time (she was first casted a 2 1/2). We were worried that

she would lose ground but she didn't.

Just some things to think about.

E

________________________________

From: infantile scoliosis treatment

[mailto:infantile scoliosis treatment ] On Behalf Of Harvey

Sent: Wednesday, January 10, 2007 3:01 AM

infantile scoliosis treatment

Subject: Update on

Hi guys

We went to ¹s back appointment last Friday and found out what the

probable plan for is.

His back has roughly stayed the same in his cast. About 30 degrees. The dr

said it looks likely that will have growing rods put in his back when

he is about 4. The cast is keeping his scoliosis in check but it is not

really getting any better (and I thought it was!). He said when kids have

something else wrong as well ( has Pierre Robyn Sequence) this is

sometimes the case. There is a small chance his scoliosis may improve but

it is better to know all the facts and plan for the future.

With this in mind I have written to the doctor to ask if we can go back to

the first brace that had.

It came from Belgium and was a little jacket that had zips down the side so

it could be removed. got okay correction in that the first 3 months

he wore it. It is fitted while he is asleep and plaster is put in the

middle of the jacket. I didn¹t like it first time round, but compared to

the POP cast that has now, I think it would make his life so much

better.

He, unlike any of your children, (I think) is still unable to sit, crawl and

obviously walk, due to being in and out of hospital so much for his first

year. His weight is very poor and he has a very bad cough which makes him

sick a lot. I feel he would have a better life in a jacket that could be

removed for a very quick bath and also enable the doctors to listen to his

chest if he was poorly. I am now an old pro at all this scoliosis lark (!)

and would definitely keep the jacket on, as I know that is the main reason

that brace¹s fail because parents take them off. I would just like to give

his poor skin a chance and also the last cast changed showed 2 horrible

pressure sores that made me feel awful.

is coming up to 2 in February, and I just want to do the best for my

little man.

Hugs to you all

x

[Guest guest]

Hi ,

Thanks for the update on . Glad to hear his

spine is holding and not progressing right now.

That's always good news.

<<The dr said it looks likely that will have

growing rods put in his back when he is about 4.>>

Have they considered the VEPTR rods instead of growing

rods? I ask because the growing rods have some risks

that damage already compromised spines (ie, fusing the

top and bottom of the rods into place, stopping the

growth of the spine prematurely, etc.). Both

surgeries are a huge committment. I would hope they

can explain ALL your options before making a single

recommendation. You need to have the pros and cons of

everything (not just growing rods, VEPTR rods,

casting, bracing, waiting, etc.) to make an informed

decision. I know his underlying condition

(Pierre-Robin) makes the decision that much harder.

Good luck.

Carmell

Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 16, GERD, and

Braydon 11, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR patient

#137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib anomalies,

missing coccyx, fatty filum/TC (released 4/99 & 12/06), 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, dysplastic right leg w/right clubfoot with 8 toes (repaired 2/96, 3/96,

1/97, 3/04), tibial torsion, 4cm length discrepancy-wears 3cm lift, pes cavus,

SUA, GERD, Gastroparesis, etc. http://carmellb-ivil.tripod.com/myfamily/

Congenital scoliosis support group

CongenitalScoliosisSupport/

________________________________________________________________________________\

____

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[Guest guest]

, I am glad to hear that was able to go to school but saddened she then is flaring. Yes, strong fatigue is a sign of flare, at least in my child. You mention the PMS and migraines and such, I was wondering if they ever threw out the idea of placing on a low dose birth control pill. My daughter started them because she had a side effect from the Enbrel of cycles that would not stop. She might stop flowing for a day or two and then it was back. And of course the fatigue and anemia that go with it. She started on two pills a day to get things under control and then went on the regular schedule. It has helped with her flares as well. She went off of them when she switched to Remicade but she found that they were helping her quite a bit with her arthritis symptoms. Her rheumy said that JRA/RA has a hormonal component, hence it is seen more frequently is women and they are prescribing birth control pills more frequently

because of this. I know the thought of one more pill is not a fun one, and many have problems seeing their child on "the pill" but the reason she takes it is for medical purposes and it does have a benefit for my daugther. Just thought I would throw that out there as a thought. I have a friend who has migraines who had her tubes tied after her last child but she takes "the pill" to help with the hormone shifts and her migraines. Hoping today is a better day. e, mom to "joe" 20 poly/lupusnancy barnes <nancyb315@...> wrote: Well, finally made it to school on Wednesday last week...and it was great! She finally was able to see how much her friends had been mising her and her fears of no longer fitting in were relieved...Thursday she could not attend because she had a trip to Children's L.A and Friday she woke, I guess, in a flare? First, her migraine was/is bad... (it is pms time again) and her joints hurt her so much she can hardly move...it has been that way all weekend, and she keeps falling asleep...even while eating!! She is in awful pain, and she cannot stay awake...it this NORMAL? I thought I'd read how some of your kids tend to sleep though a flare?? Does this sound like a flare? This morning, her hip is so bad she can barely move...she doesn't see the rheumy til next week...and we are supposed to be in

NY for 6 days startig Wednesday...don't know what to do to help her...It hurts to see her like this...she is so discouraged with her body... ( 16) Ahhh...imagining that irresistible "new car" smell?Check out new cars at Autos.

Ahhh...imagining that irresistible "new car" smell? Check out

new cars at Autos.

[Guest guest]

-I'm so glad s day at school went well, its so important that

she knows she still " belongs "

I am sad though, that she is now flaring. I hope its short lived and

she can enjoy more days at school before the end of the school year.

hugs Helen and (9,systemic)

-- In , nancy barnes <nancyb315@...> wrote:

>

> Well, finally made it to school on Wednesday last week...and

it was great! She finally was able to see how much her friends had

been mising her and her fears of no longer fitting in were relieved...

>

> Thursday she could not attend because she had a trip to Children's

L.A and Friday she woke, I guess, in a flare?

>

> First, her migraine was/is bad... (it is pms time again) and her

joints hurt her so much she can hardly move...it has been that way

all weekend, and she keeps falling asleep...even while eating!! She

is in awful pain, and she cannot stay awake...it this NORMAL? I

thought I'd read how some of your kids tend to sleep though a

flare?? Does this sound like a flare? This morning, her hip is so

bad she can barely move...

>

> she doesn't see the rheumy til next week...and we are supposed to

be in NY for 6 days startig Wednesday...don't know what to do to help

her...

>

> It hurts to see her like this...she is so discouraged with her

body...

>

> ( 16)

>

>

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

> Ahhh...imagining that irresistible " new car " smell?

> Check outnew cars at Autos.

>

[Guest guest]

e,someone else posed this question to me recently, and frankly, I have wondered why it has never been mentioned - possibly because until her last cycle, PMS was not a component. She still has her daily migraines, but they seem to be coming under fairly good control with her new meds...I worry a bit about the potential side effects of the pill, but perhaps with a low dose, it's not a problem. Did your daughter have any trouble?She seems to be having more of these "flares" and her body just seems to practically shut down for 4-5 days or so..it makes sense that there could be some hormonal component there too, as your daughter's rheumy says...'s "flares" don't exactly coincide with her cycle, but they are too close to ignore.Thank you for your input. I don't think her neurologist would be open to the bcp but I will e-mail her pain dr and see what he thinks, as he oversees her meds anyway. (,

16)bound for london <boundforlondon@...> wrote: , I am glad to hear that was able to go to school but saddened she then is flaring. Yes, strong fatigue is a sign of flare, at least in my child. You mention the PMS and migraines and such, I was wondering if they ever threw out the idea of placing on a low dose birth control pill. My daughter started them because she had a side effect from the Enbrel of cycles that would not stop. She might stop flowing for a day or two

and then it was back. And of course the fatigue and anemia that go with it. She started on two pills a day to get things under control and then went on the regular schedule. It has helped with her flares as well. She went off of them when she switched to Remicade but she found that they were helping her quite a bit with her arthritis symptoms. Her rheumy said that JRA/RA has a hormonal component, hence it is seen more frequently is women and they are prescribing birth control pills more frequently because of this. I know the thought of one more pill is not a fun one, and many have problems seeing their child on "the pill" but the reason she takes it is for medical purposes and it does have a benefit for my daugther. Just thought I would throw that out there as a thought. I have a friend who has migraines who had her tubes tied after her last child but she takes "the pill" to help with the hormone shifts and her migraines. Hoping today is a

better day. e, mom to "joe" 20 poly/lupusnancy barnes <nancyb315 > wrote: Well, finally made it to school on Wednesday last week...and it was great! She finally was able to see how much her friends had been mising her and her fears of no longer fitting in were relieved...Thursday she could not attend because she had a trip to Children's L.A and Friday she woke, I guess, in a flare? First, her migraine was/is bad... (it is pms time again) and her joints hurt her so much she can hardly move...it has been that way all weekend, and she keeps falling asleep...even while eating!! She is in awful pain, and she cannot stay awake...it this NORMAL? I thought I'd read how some of your

kids tend to sleep though a flare?? Does this sound like a flare? This morning, her hip is so bad she can barely move...she doesn't see the rheumy til next week...and we are supposed to be in NY for 6 days startig Wednesday...don't know what to do to help her...It hurts to see her like this...she is so discouraged with her body... ( 16) Ahhh...imagining that irresistible "new car" smell?Check out new cars at Autos. Ahhh...imagining that irresistible "new car" smell? Check out new cars at Autos.

Ahhh...imagining that irresistible "new car" smell? Check out

new cars at Autos.

[Guest guest]

Thank you, Helen. sounds like a bundle of fun...and energy!I was wondering....does the mtx shot burn a lot? Could that be why he is dreading that compared to the IV sticks? gets subQ infusions (previously IV) and she would prefer that to some of the migraine shots she gets..because they burn instantly...just a thought...poor guy.I hope it gets better! (, 16)hburger64 <hburger64@...> wrote: -I'm so glad s day at school went well, its so important that

she knows she still "belongs" I am sad though, that she is now flaring. I hope its short lived and she can enjoy more days at school before the end of the school year. hugs Helen and (9,systemic) -- In , nancy barnes <nancyb315@...> wrote: > > Well, finally made it to school on Wednesday last week...and it was great! She finally was able to see how much her friends had been mising her and her fears of no longer fitting in were relieved... > > Thursday she could not attend because she had a trip to Children's L.A and Friday she woke, I guess, in a flare? > > First, her migraine was/is bad... (it is pms time again) and her joints hurt her so much she can hardly move...it has been that way all weekend, and she keeps falling asleep...even while eating!! She is

in awful pain, and she cannot stay awake...it this NORMAL? I thought I'd read how some of your kids tend to sleep though a flare?? Does this sound like a flare? This morning, her hip is so bad she can barely move... > > she doesn't see the rheumy til next week...and we are supposed to be in NY for 6 days startig Wednesday...don't know what to do to help her... > > It hurts to see her like this...she is so discouraged with her body... > > ( 16) > > > --------------------------------- > Ahhh...imagining that irresistible "new car" smell? > Check outnew cars at Autos. >

Ahhh...imagining that irresistible "new car" smell? Check out

new cars at Autos.

[Guest guest]

Wonderful! So glad to hear that there has been some improvement.

(drea 11 systemic jra/gerd)-

-- In , nancy barnes <nancyb315@...> wrote:

>

> We can see ankles today...YEAH!!!!

>

> I am hoping the pics we took turn out for the rheumy visit Wed.

>

> Her rash looked like the ones in the pics of ...

>

> Thank you for your support. I will let you all know what they

rheumy says.

>

> (, 16)

>

>

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

> Ahhh...imagining that irresistible " new car " smell?

> Check outnew cars at Autos.

>

[Guest guest]

Poor . I will definitely be praying

for better relief. You are right, moving in the pool will help but it is not

the only answer. I’m sorry – I can’t remember – is

only on an anti inflammatory? If so this dr needs to get her on a DMARD. I

would be saying to this dr that this is not an ok condition for a 16 year old!

I don’t blame you for wanting to scream and cry. How frustrating! I

sincerely hope you can get into the new rheumy soon. Is the new rheumy attached

to a teaching/university hospital? Sometimes they are more aggressive sooner in

treatment. Michele ( 19, spondy)

From: [mailto: ] On Behalf Of nancy

barnes

Sent: Monday, May 07, 2007 3:10 PM

Subject: update on

I don't know whether to scream, or cry, or

both....

we are back from Ct/NY...and went to see the rheumy on Wed. I have

been so frustrated/upset that I have been avoiding phone calls and this

forum...dumb, I know..

as some of you know, she had ankle pain for about a week, followed by a rash

and severe swelling of her ankles and toes. The swelling returned again, for two days this time, but no

rash.

My frustration is, the rhuemy did her physical exam and 's elbow,

hips, knees, ankles, big toes, and low back were all stiff and highly tender;

her ankles still had observable swelling. The rheumy said, let's

have her moving..get in the pool 2-3 days a week and give her Relafen...

I don't mind encouraging her to get in the pool, but she has been so much worse

I feel at this point, it is going to take something more.

Mind you, this will be her 4th anit-inflammatory...and she has been

forcing herself to get moving and walk a little every day, even with the

swelling.

Michele - I read what you wrote to Meissa about rheumy's going more on physical

findings than labs...I only wish I could get this rheumy to do that!

's labs have positive ANA, sometimes eleveted CRP, neg RF...and I get the

distinct impression that she puts more weight on the labs than the physical

findings.

I asked the dr, how does she explain the swelling and rash? She said

either arthritis or tendonitis...and that was that..!?!? I

feel so badly for - she is so discouraged. I am trying to get her

on the wait list for another rheumy at a different hospital...

I would appreciate positive thoughts for , both for her spirits, and that

she will be able to get into this new rheumy sooner than later...oh - and that

he is more proactive than this rheumy.

(, 16, cvid, spondy, fibro, migraines)

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[Guest guest]

,

Scream, holler, yell all you like, we are here for you.

I would be frustrated too. It is time to be more aggressive, has way too much going on NOT to start on something more powerful. There is NO reason a child should be suffering like this, its not right.

Nicks rheumy doesn't go by labs alone, or physical findings alone. She listens to ME and Nick as to what's going on, how his arthritis affects his daily life and we go from there. Labs are only a piece of the puzzle not the whole picture. Nick has had high SED and CRP and been feeling fine and he's had swelling in fingers and toes and SED has been 5, CRP negative.

I wish you luck in getting into the new rheumy ASAP, ask to be put on their cancelation list, if possible. In the mean time we will keep in our thoughts and prayers and hope she's feeling better soon.hugs Helen and (9,systemic)

From: nancyb315@...Date: Mon, 7 May 2007 13:09:51 -0700Subject: update on

I don't know whether to scream, or cry, or both....we are back from Ct/NY...and went to see the rheumy on Wed. I have been so frustrated/upset that I have been avoiding phone calls and this forum...dumb, I know..as some of you know, she had ankle pain for about a week, followed by a rash and severe swelling of her ankles and toes. The swelling returned again, for two days this time, but no rash.My frustration is, the rhuemy did her physical exam and 's elbow, hips, knees, ankles, big toes, and low back were all stiff and highly tender; her ankles still had observable swelling. The rheumy said, let's have her moving..get in the pool 2-3 days a week and give her Relafen... I don't mind encouraging her to get in the pool, but she has been so much worse I feel at this point, it is going to take something more.Mind you, this will be her 4th anit-inflammatory...and she has been forcing herself to get moving and walk a little every day, even with the swelling. Michele - I read what you wrote to Meissa about rheumy's going more on physical findings than labs...I only wish I could get this rheumy to do that! 's labs have positive ANA, sometimes eleveted CRP, neg RF...and I get the distinct impression that she puts more weight on the labs than the physical findings. I asked the dr, how does she explain the swelling and rash? She said either arthritis or tendonitis...and that was that..!?!? I feel so badly for - she is so discouraged. I am trying to get her on the wait list for another rheumy at a different hospital...I would appreciate positive thoughts for , both for her spirits, and that she will be able to get into this new rheumy sooner than later...oh - and that he is more proactive than this rheumy. (, 16, cvid, spondy, fibro, migraines)

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[Guest guest]

HI -I am so sorry.... and I can totally feel and understand your frustration. I wish I had something great to offer.....I know that CHLA is booked beyond measure. I think I remember that you were trying to get in to see Dr. Reiff (that's Caitlin's doc as well....) I did ask him how a new patient gets in when the receptionist just tells you they are totally booked, and he said that sometimes you can get in to see somebody for a "second opinion". I don't know if that gets you on to a permanent rotation or just in for one visit.I think I also mentioned that he does clinic down at Children's Hospital in Long Beach once or twice a month. I know that is even farther for you... but I think they are slightly less impacted. I called about a month ago to ask that question for somebody else on the board, and the NP there told me it was about a 30 day wait. I don't blame you for wanting some fresh

eyes.... and I think that is the best thing you can do for right now. It certainly won't hurt! I hope things turn around soon.....Colleen (mom to Caitlin, 9, systemic)nancy barnes <nancyb315@...> wrote: I don't know whether to scream, or cry, or both....we are back from Ct/NY...and went to see the rheumy on Wed. I have been so frustrated/upset that I have been avoiding phone calls and this forum...dumb, I know..as some of you know, she had ankle pain for about a week,

followed by a rash and severe swelling of her ankles and toes. The swelling returned again, for two days this time, but no rash.My frustration is, the rhuemy did her physical exam and 's elbow, hips, knees, ankles, big toes, and low back were all stiff and highly tender; her ankles still had observable swelling. The rheumy said, let's have her moving..get in the pool 2-3 days a week and give her Relafen... I don't mind encouraging her to get in the pool, but she has been so much worse I feel at this point, it is going to take something more.Mind you, this will be her 4th anit-inflammatory...and she has been forcing herself to get moving and walk a little every day, even with the swelling. Michele - I read what you wrote to Meissa about rheumy's going more on physical findings than labs...I only wish I could get this rheumy to do that! 's labs have positive

ANA, sometimes eleveted CRP, neg RF...and I get the distinct impression that she puts more weight on the labs than the physical findings. I asked the dr, how does she explain the swelling and rash? She said either arthritis or tendonitis...and that was that..!?!? I feel so badly for - she is so discouraged. I am trying to get her on the wait list for another rheumy at a different hospital...I would appreciate positive thoughts for , both for her spirits, and that she will be able to get into this new rheumy sooner than later...oh - and that he is more proactive than this rheumy. (, 16, cvid, spondy, fibro, migraines) Never miss an email again! Toolbar alerts you the instant new Mail arrives. Check it out.

Ahhh...imagining that irresistible "new car" smell? Check out

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[Guest guest]

hi Colleen,thank you for your words of encouragement.I had talked of trying to see Dr. Reiff, but we had a positive appt and I foolishly postponed the second opinion - now I regret it.It is Dr. Reiff we are trying to get an appt with now. I phoned CHLA, but Dr. Reiff isn't taking new patients, but the secretary for rheumatology at 's is a patient of my husbands...she is supposed to be getting us in contact with the nurse that books for Dr. Reiff at 's. Don't know if my husband being a social worker on staff there for many years will speed the process or not...the nurse and my husband know

of one another...I can only hope. 's pain dr is at CHLA, and actually, 's is a few miles closer for us, but being as we are in Orange County and drive to UCLA, either is worth it.Do I remember you saying (I hope) that Dr. Reiff tends to be proactive? Because I believe that is what she needs at this time. Colleen <bookissmom@...> wrote: HI

-I am so sorry.... and I can totally feel and understand your frustration. I wish I had something great to offer.....I know that CHLA is booked beyond measure. I think I remember that you were trying to get in to see Dr. Reiff (that's Caitlin's doc as well....) I did ask him how a new patient gets in when the receptionist just tells you they are totally booked, and he said that sometimes you can get in to see somebody for a "second opinion". I don't know if that gets you on to a permanent rotation or just in for one visit.I think I also mentioned that he does clinic down at Children's Hospital in Long Beach once or twice a month. I know that is even farther for you... but I think they are slightly less impacted. I called about a month ago to ask that question for somebody else on the board, and the NP there told me it was about a 30 day wait. I don't blame you for wanting some fresh eyes.... and I think that is the best thing you can do for right now. It certainly won't hurt! I hope things turn around soon.....Colleen (mom to Caitlin, 9, systemic)nancy barnes <nancyb315 > wrote: I don't know whether to scream, or cry, or both....we are back from Ct/NY...and went to see the rheumy on Wed. I have been so frustrated/upset that I have been avoiding phone calls and this forum...dumb, I know..as some of you know, she had ankle pain for about a week, followed by a rash and severe swelling of her ankles and toes. The swelling returned again, for two days this time, but no rash.My frustration is, the rhuemy did her physical exam and 's

elbow, hips, knees, ankles, big toes, and low back were all stiff and highly tender; her ankles still had observable swelling. The rheumy said, let's have her moving..get in the pool 2-3 days a week and give her Relafen... I don't mind encouraging her to get in the pool, but she has been so much worse I feel at this point, it is going to take something more.Mind you, this will be her 4th anit-inflammatory...and she has been forcing herself to get moving and walk a little every day, even with the swelling. Michele - I read what you wrote to Meissa about rheumy's going more on physical findings than labs...I only wish I could get this rheumy to do that! 's labs have positive ANA, sometimes eleveted CRP, neg RF...and I get the distinct impression that she puts more weight on the labs than the physical findings. I asked the dr, how does she explain the swelling and rash? She said either

arthritis or tendonitis...and that was that..!?!? I feel so badly for - she is so discouraged. I am trying to get her on the wait list for another rheumy at a different hospital...I would appreciate positive thoughts for , both for her spirits, and that she will be able to get into this new rheumy sooner than later...oh - and that he is more proactive than this rheumy. (, 16, cvid, spondy, fibro, migraines) Never miss an email again! Toolbar alerts you the instant new Mail arrives. Check it out. Ahhh...imagining that irresistible "new car"

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[Guest guest]

tHANKS FOR THE UPDATE DOUGLAS-TELL JULIE WE ARE THINKING OF HER AND

HOPE SHE GETS UP AND AROUND SOON.

HUGS-TONIA

>

> Hello Everyone,

>

>

>

> Just thought I'd let everyone know that is at home and

resting. The

> surgery went very well. They were able to take her gall bladder

> laparoscopically. She was in and out of surgery in less than an

hour. Her

> gall bladder WAS diseased so it was a good thing we went ahead and

had the

> surgery. The doctor said she did have adhesions from her previous

surgeries

> but nothing too serious (we have photos).

>

>

>

> I'm sure she'll post further when she is feeling up to it.

>

>

>

> I want to thank everyone for the well wishes and for the support.

>

>

>

> - Husband of

>

[Guest guest]

L. Warren wrote:

The surgery went very well.

Glad to hear it. Thanks for the update.

notan

[Guest guest]

, Thanks for letting us know how is. I'm sure you are taking wonderful care of her. Give a hug from Tia and . Take care! " L. Warren" <LWarren@...> wrote: Hello

Everyone, Just thought I’d let everyone know that is at home and resting. The surgery went very well. They were able to take her gall bladder laparoscopically. She was in and out of surgery in less than an hour. Her gall bladder WAS diseased so it was a good thing we went ahead and had the surgery. The doctor said she did have adhesions from her previous surgeries but nothing too serious (we have photos). I’m sure she’ll post further when she is feeling up to it. I want to thank everyone for the well wishes and for the support. – Husband of

Don't get soaked. Take a quick peak at the forecast with the Search weather shortcut.

[Guest guest]

Thank you for letting us know

That's great to hear that the surgeon managed to do it the lap way and the surgery was quick.

Please give her my best wishes and hope to hear from her soon

Pippa x

[Guest guest]

Dear , Please say hello from me too and give her my best wishes. Thank you for the news. I am pleased that it is so good. With love from Ann XXPippa <kevin.brown150@...> wrote: Thank you for letting us know That's great to hear that the surgeon managed to do it the lap way and the surgery was quick. Please give her my best wishes and hope to hear from her soon Pippa x

What kind of emailer are you? Find out today - get a free analysis of your email personality. Take the quiz at the Championship.

[Guest guest]

Hi , Thanks for letting us know! Good to hear is doing OK!!! Isabella" L. Warren" <LWarren@...> wrote: Hello Everyone, Just thought I’d let everyone know that is at home and resting. The surgery went very well. They were able to take her gall bladder laparoscopically. She was in and out

of surgery in less than an hour. Her gall bladder WAS diseased so it was a good thing we went ahead and had the surgery. The doctor said she did have adhesions from her previous surgeries but nothing too serious (we have photos). I’m sure she’ll post further when she is feeling up to it. I want to thank everyone for the well wishes and for the support. – Husband of

oneSearch: Finally, mobile search that gives answers, not web links.

[Guest guest]

Aw Helen,

what else can I say but {{HUGS}}!

packing some extra to bring to Hershey for you, too! ;-)

Jo

>

> We saw the rheumy today and she doesnt think its his systemic JRA

> causing his issues. She is concerned that he had dental work on

> Thrusday and all this started right after that.

>

> We are running blood cultures to see if hes got an infection in his

> blood and re-doing the strep test. She did start him on anti-

biotics.

>

> The poor kid is either alseep or screaming in pain, he lay there

> fists clenched just punching the bed at the doctors office. He has

> not eaten in 2 days and barely drinks. hes lost weight.

>

> I made a mixture of warm water and baby oragel and had him gargle

and > swallow. That helped and he was able to take his meds finally

and he> ate about 4 french fries and a popsicle.

> > At the rheumys we also talked about his IV starts and she is

> recommending a port. She said to talk to people who have had them

> while we are in Hershey and then call her when we get back to

> schedule it. She has one and LOVES it... of course we had to draw

> another set of labs today which meant another poke into his black

and > blue arms. But he sat still and sobbed the whole time.

>

> Hes sleeping again and his fevers are still persisting.

>

> what a week...

>

> Hugs Helen and (9,systemic)

[Guest guest]

Hi Helen,I wanted to mention that you should make sure that it isn't mono.  Some of his symptoms sound similar to mono.  Remember, mono can throw a systemic into MAS.  That is what happened with n.  Take care, (n, 18, systemic)On Jun 20, 2007, at 6:00 PM, hburger64 wrote:We saw the rheumy today and she doesnt think its his systemic JRA causing his issues. She is concerned that he had dental work on Thrusday and all this started right after that.We are running blood cultures to see if hes got an infection in his blood and re-doing the strep test. She did start him on anti-biotics.The poor kid is either alseep or screaming in pain, he lay there fists clenched just punching the bed at the doctors office. He has not eaten in 2 days and barely drinks. hes lost weight.I made a mixture of warm water and baby oragel and had him gargle and swallow. That helped and he was able to take his meds finally and he ate about 4 french fries and a popsicle.At the rheumys we also talked about his IV starts and she is recommending a port. She said to talk to people who have had them while we are in Hershey and then call her when we get back to schedule it. She has one and LOVES it... of course we had to draw another set of labs today which meant another poke into his black and blue arms. But he sat still and sobbed the whole time.Hes sleeping again and his fevers are still persisting.what a week...Hugs Helen and (9,systemic)

[Guest guest]

Helen,

I was thinking the same thing as . I had Mono a few years ago

and had a sore throat that had me in tears for days. It felt exactly

as you described and I was sure that I had strep throat - and shocked

when the doc said mono.

Hopes and prayers that will be better soon.

Jo Anne (Lianna, almost 5)enthesitis related arthritis

>

> > We saw the rheumy today and she doesnt think its his systemic JRA

> > causing his issues. She is concerned that he had dental work on

> > Thrusday and all this started right after that.

> >

> > We are running blood cultures to see if hes got an infection in

his

> > blood and re-doing the strep test. She did start him on anti-

biotics.

> >

> > The poor kid is either alseep or screaming in pain, he lay there

> > fists clenched just punching the bed at the doctors office. He has

> > not eaten in 2 days and barely drinks. hes lost weight.

> >

> > I made a mixture of warm water and baby oragel and had him gargle

and

> > swallow. That helped and he was able to take his meds finally and

he

> > ate about 4 french fries and a popsicle.

> >

> > At the rheumys we also talked about his IV starts and she is

> > recommending a port. She said to talk to people who have had them

> > while we are in Hershey and then call her when we get back to

> > schedule it. She has one and LOVES it... of course we had to draw

> > another set of labs today which meant another poke into his black

and

> > blue arms. But he sat still and sobbed the whole time.

> >

> > Hes sleeping again and his fevers are still persisting.

> >

> > what a week...

> >

> > Hugs Helen and (9,systemic)

> >

> >

> >

>

[Guest guest]

hmm, that was interesting that she felt it wasn't systemic related.

I will certainly know if something is up with Drea when we have her

3rd ortho appt later this month. If she has the same response the

following day I guess we will know its more that coincidence.

If the remicade is likely to remain a long term option for Nick then

maybe a port would be a good idea.

Sure hope that Nicky Noodle is doing much better by tomorrow. knives

and giant lump in throat...drea used the very same words. How

strange.

Praying for our little guy.

sonia (drea 11 systemic jra/gerd)

>

> We saw the rheumy today and she doesnt think its his systemic JRA

> causing his issues. She is concerned that he had dental work on

> Thrusday and all this started right after that.

>

> We are running blood cultures to see if hes got an infection in his

> blood and re-doing the strep test. She did start him on anti-

biotics.

>

> The poor kid is either alseep or screaming in pain, he lay there

> fists clenched just punching the bed at the doctors office. He has

> not eaten in 2 days and barely drinks. hes lost weight.

>

> I made a mixture of warm water and baby oragel and had him gargle

and

> swallow. That helped and he was able to take his meds finally and

he

> ate about 4 french fries and a popsicle.

>

> At the rheumys we also talked about his IV starts and she is

> recommending a port. She said to talk to people who have had them

> while we are in Hershey and then call her when we get back to

> schedule it. She has one and LOVES it... of course we had to draw

> another set of labs today which meant another poke into his black

and

> blue arms. But he sat still and sobbed the whole time.

>

> Hes sleeping again and his fevers are still persisting.

>

> what a week...

>

> Hugs Helen and (9,systemic)

>

[Guest guest]

)

>Hi Helen! I rarely post here but i just wanted to let you know that my

family is praying for your little . My son had a central line

in for a couple months and I loved it as well.Less pokes but they also

become more susceptible to infections by accessing it. Blood can be

drawn through it as well as meds. It made life easier for everyone

including my little Bubba. & Mauricio JR.18mo. systemic

[Guest guest]

Poor . I hope he starts feeling better soon.

Donna (Kailey 8, Poly)

>

> We saw the rheumy today and she doesnt think its his systemic JRA

> causing his issues. She is concerned that he had dental work on

> Thrusday and all this started right after that.

>

> We are running blood cultures to see if hes got an infection in

his

> blood and re-doing the strep test. She did start him on anti-

biotics.

>

> The poor kid is either alseep or screaming in pain, he lay there

> fists clenched just punching the bed at the doctors office. He has

> not eaten in 2 days and barely drinks. hes lost weight.

>

> I made a mixture of warm water and baby oragel and had him gargle

and

> swallow. That helped and he was able to take his meds finally and

he

> ate about 4 french fries and a popsicle.

>

> At the rheumys we also talked about his IV starts and she is

> recommending a port. She said to talk to people who have had them

> while we are in Hershey and then call her when we get back to

> schedule it. She has one and LOVES it... of course we had to draw

> another set of labs today which meant another poke into his black

and

> blue arms. But he sat still and sobbed the whole time.

>

> Hes sleeping again and his fevers are still persisting.

>

> what a week...

>

> Hugs Helen and (9,systemic)

>

[Guest guest]

Hi Helen:

I have no words of wisdom for you, I'm sure you find all of this very perplexing. Just know I am thinking you and Nicky Noodle and hope he feels better soon so you can enjoy the trip to Hershey!!!

Beth & Hannah, 10, unspecfied arthritis; asthma; gerd; migraines

Sending prayers & happy thoughts,

Beth :-)

Update on

We saw the rheumy today and she doesnt think its his systemic JRA causing his issues. She is concerned that he had dental work on Thrusday and all this started right after that.We are running blood cultures to see if hes got an infection in his blood and re-doing the strep test. She did start him on anti-biotics.The poor kid is either alseep or screaming in pain, he lay there fists clenched just punching the bed at the doctors office. He has not eaten in 2 days and barely drinks. hes lost weight.I made a mixture of warm water and baby oragel and had him gargle and swallow. That helped and he was able to take his meds finally and he ate about 4 french fries and a popsicle.At the rheumys we also talked about his IV starts and she is recommending a port. She said to talk to people who have had them while we are in Hershey and then call her when we get back to schedule it. She has one and LOVES it... of

course we had to draw another set of labs today which meant another poke into his black and blue arms. But he sat still and sobbed the whole time.Hes sleeping again and his fevers are still persisting.what a week...Hugs Helen and (9,systemic)