RE: [JRA]'s diagnosis

[Guest guest]

's fatigue and pain have been severe enough that getting dressed/showered can leave her done for the day, forget any social life.She cannot do many simple daily tasks with her hands anymore. On her last labs, showed positive for Crohn's and was sent by the rheumy to see a gastro... I pointed out that she is asymptomatic, but agreed to consult. Friday, the rheumy was surprised what she observed - was visibly stiff and in pain from sitting while waitng for the dr. Her ROM was noticeably decreased in hips, knees, etc. Her hands showed increased deformity, as they had at the previous visit. Her elbow (new development) was visibly swollen. She said we need to move to stronger meds (she had been on Celebrex max dose) - but she wants to consult with the gastro (in case of crohn's) to see what would be a good fit for both (since both are autoimmune). She gave me a pamphlet on Juvenile Rheumatoid

Arthritis Medications. She turned to and apologized to her...that she is now fully seeing the signs of what has been feeling all along. She is ordering MRI to track progression of hands, hips, elbows, and check neck to see if there is arthritis connection to migraines. She relocated and doubled aqua therapy/OT/PT at the Children's Hospital near us... and a prescription for a wheel chair when we go places....Although she still has never said " has jra..." - her diagnosis codes are now "polyarticular jra". So, I guess we have the answers to 's constant pain we have been seeking the past 18 months (she's had pain since she was 3...it became intolerable after the meningitis)...I thought I'd feel a sense of relief, having an answer, but, among my present emotions, relief does not seem to be one of them. Sad....because I guess this extinguishes any silly sense of hope

perhaps she will be able to play water polo again...(in my heart of hearts, I think I already realized that when the scholarship letter arrived a couple of weeks ago...)I have more questions now...and new worries....helping her get through this moment (her accepting she won't play polo this year, especially since all her friends are athletes... the PT says she might make it to a full day school in 6-8 months, and she wants to graduate on time, but fell behind this summer), the meds....me being her constant strength (her Dad has been in denial and "inconvenienced by her being sick, and somehow, I doubt a diagnosis will change that) - I know we will get through this...but I struggle accepting that I cannot fix this for her...I know we are all at different places on this path...I hope that I may continue to ask and learn from those with experience - I

know as meds and treatment are changed, questions will arise...and I too, hope I too can help others by passing it on as I learn.Thank you for allowing me to share and vent here. I am working on my positive attitude...lol...This is truly the only place I know where I can come with certainty and know someone is going to get what I am talking about.Thank you, my friends.nancy (amanda, 17, poly)

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[Guest guest]

im sorry things are rotton..

just some fast words before i go to sleep

- there is a chance that she can still play water polo... or some other type of water sport... never know.... esp with good meds that help her

- Remicade is a biologic drug that was originaly used for Chrons disease and still is... and useds for JRA too so possibly a good option for her

- hopefully now with PT, meds, etc... things will go in the right track and will improve

- dont give up hope!!

- There is WAY more hope in effectively treating/suppressing the disease process of JRA and the medications could help stop the damage.. and what swealling, decreased ROM, etc she has.... might change with meds and PT/OT

- I know its hard... but you never know with this disease.. there is more hope than there is doom.... a lot of the kids and young adults here are doing very well... some not... its hard to know... but now that she is in the right direction of treatment.. maybe things will get better! I hope they do!

Whatever the case.... at least we have this board here for support and its good her pediatrician was appologetic and proactive to help her... or rheumy versus priideful about the situation because i have met drs like that who thoiught i was faking it... or that it was nothing... and than when they found out it really was something, they couldnt bite their pride

okay.. take care

On 8/12/07, nancy barnes <nancyb315@...> wrote:

's fatigue and pain have been severe enough that getting dressed/showered can leave her done for the day, forget any social life.She cannot do many simple daily tasks with her hands anymore. On her last labs, showed positive for Crohn's and was sent by the rheumy to see a gastro... I pointed out that she is asymptomatic, but agreed to consult. Friday, the rheumy was surprised what she observed - was visibly stiff and in pain from sitting while waitng for the dr. Her ROM was noticeably decreased in hips, knees, etc. Her hands showed increased deformity, as they had at the previous visit. Her elbow (new development) was visibly swollen. She said we need to move to stronger meds (she had been on Celebrex max dose) - but she wants to consult with the gastro (in case of crohn's) to see what would be a good fit for both (since both are autoimmune). She gave me a pamphlet on Juvenile Rheumatoid Arthritis Medications. She turned to and apologized to her...that she is now fully seeing the signs of what has been feeling all along. She is ordering MRI to track progression of hands, hips, elbows, and check neck to see if there is arthritis connection to migraines. She relocated and doubled aqua therapy/OT/PT at the Children's Hospital near us... and a prescription for a wheel chair when we go places....Although she still has never said " has jra... " - her diagnosis codes are now " polyarticular jra " .

So, I guess we have the answers to 's constant pain we have been seeking the past 18 months (she's had pain since she was 3...it became intolerable after the meningitis)...I thought I'd feel a sense of relief, having an answer, but, among my present emotions, relief does not seem to be one of them. Sad....because I guess this extinguishes any silly sense of hope perhaps she will be able to play water polo again...(in my heart of hearts, I think I already realized that when the scholarship letter arrived a couple of weeks ago...)

I have more questions now...and new worries....helping her get through this moment (her accepting she won't play polo this year, especially since all her friends are athletes... the PT says she might make it to a full day school in 6-8 months, and she wants to graduate on time, but fell behind this summer),

the meds....me being her constant strength (her Dad has been in denial and " inconvenienced by her being sick, and somehow, I doubt a diagnosis will change that) - I know we will get through this...but I struggle accepting that I cannot fix this for her...

I know we are all at different places on this path...I hope that I may continue to ask and learn from those with experience - I know as meds and treatment are changed, questions will arise...and I too, hope I too can help others by passing it on as I learn.

Thank you for allowing me to share and vent here. I am working on my positive attitude...lol...This is truly the only place I know where I can come with certainty and know someone is going to get what I am talking about.

Thank you, my friends.nancy (amanda, 17, poly)

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-- " I am not sick. I am broken. But I am happy as long as I can paint. " --Frida Kahlo

[Guest guest]

With good meds she can definitely play

sports. As I write this is trying out for volleyball and has been

playing soccer for 5 yrs and dancing for 3. Don’t ever give up. I know

that right now things look bleak, however; now that they know what you have

known all along they can get going on putting her on the right meds and

hopefully feeling better than she does right now. I know what you mean about

not sure if you wanted the dx or not. It pains you to know that this isn’t

a simple thing that can be taken care of in a couple weeks/months etc. Give

dad some time to adjust and hopefully he will see the light, or you could hit

him over the head I hear that causes lights to flash hehe. My prayers and

thoughts are with you.

[Guest guest]

, I am so sorry and am sending lots of cyber hugs. Many of us here

do know exactly where you are. I know you wanted a sense of relief and yet the sadness

is overwhelming. I remember how we felt when we knew would not play

baseball or volleyball. At the time, if his meds had him in better control, it

might have been possible for him to play high school sports. I know that after

about 2 years on the meds, he was in a better spot, but he had lost those first

years and it is tough. However, now that she is diagnosed, now that you have a

dr aggressively fighting on your side, may get back to where she needs

to be quickly. These are the toughest days right now and I am sorry that you

all have to go through this. I wish I could think of something better to say. Please

vent when you need to, and know that we are all here when you need us, Michele

( 20, spondy)

From: [mailto: ] On Behalf Of nancy

barnes

Sent: Monday, August 13, 2007 1:49

AM

Subject: Re: 's

diagnosis

's fatigue and pain have been severe enough that

getting dressed/showered can leave her done for the day, forget any social

life.She cannot do many simple daily tasks with her hands anymore. On her last

labs, showed positive for Crohn's and was sent by the rheumy to see a

gastro... I pointed out that she is asymptomatic, but agreed to consult.

Friday, the rheumy was surprised what she observed - was visibly stiff

and in pain from sitting while waitng for the dr. Her ROM was noticeably

decreased in hips, knees, etc. Her hands showed increased deformity, as

they had at the previous visit. Her elbow (new development) was

visibly swollen. She said we need to move to stronger meds (she had been

on Celebrex max dose) - but she wants to consult with the gastro (in case

of crohn's) to see what would be a good fit for both (since both are

autoimmune).

She gave me a pamphlet on Juvenile Rheumatoid Arthritis Medications. She

turned to and apologized to her...that

she is now fully seeing the signs of what has been feeling all along.

She is ordering MRI to track progression of hands, hips, elbows, and check neck

to see if there is arthritis connection to migraines. She relocated and

doubled aqua therapy/OT/PT at the Children's Hospital near us... and a

prescription for a wheel chair when we go places....Although she still has

never said " has jra... " - her diagnosis codes are now

" polyarticular jra " .

So, I guess we have the answers to 's constant pain we have been seeking

the past 18 months (she's had pain since she was 3...it became intolerable

after the meningitis)...I thought I'd feel a sense of relief, having

an answer, but, among my present emotions, relief does not seem to be one

of them. Sad....because I guess this extinguishes any silly sense of hope

perhaps she will be able to play water polo again...(in my heart of hearts, I

think I already realized that when the scholarship letter arrived a couple of

weeks ago...)

I have more questions now...and new worries....helping her get through this

moment (her accepting she won't

play polo this year, especially since all her friends are athletes... the PT

says she might make it to a full day school in 6-8 months, and she wants to

graduate on time, but fell behind this summer), the meds....me being

her constant strength (her Dad has been in denial and " inconvenienced by

her being sick, and somehow, I doubt a diagnosis will change that) - I know we

will get through this...but I struggle accepting that I cannot fix this for

her...

I know we are all at different places on this path...I hope that I may continue

to ask and learn from those with experience - I know as meds and treatment are

changed, questions will arise...and I too, hope I too can help others by passing

it on as I learn.

Thank you for allowing me to share and vent here. I am working on my

positive attitude...lol...

This is truly the only place I know where I can come with certainty and know

someone is going to get what I am talking about.

Thank you, my friends.

nancy

(amanda, 17, poly)

Got a little couch potato?

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activities for kids.

[Guest guest]

Sorry – just one more thought –

Crohn’s is associated with spondylitis. They did test but he was

negative. Just some info you may want to keep in mind or look into. Ok, I’m

off my spondy soap box, Michele

From: [mailto: ] On Behalf Of nancy

barnes

Sent: Monday, August 13, 2007 1:49

AM

Subject: Re: 's

diagnosis

's fatigue and pain have been severe enough that

getting dressed/showered can leave her done for the day, forget any social

life.She cannot do many simple daily tasks with her hands anymore. On her last

labs, showed positive for Crohn's and was sent by the rheumy to see a

gastro... I pointed out that she is asymptomatic, but agreed to consult.

Friday, the rheumy was surprised what she observed - was visibly stiff

and in pain from sitting while waitng for the dr. Her ROM was noticeably

decreased in hips, knees, etc. Her hands showed increased deformity, as

they had at the previous visit. Her elbow (new development) was

visibly swollen. She said we need to move to stronger meds (she had been

on Celebrex max dose) - but she wants to consult with the gastro (in case

of crohn's) to see what would be a good fit for both (since both are

autoimmune).

She gave me a pamphlet on Juvenile Rheumatoid Arthritis Medications. She

turned to and apologized to her...that

she is now fully seeing the signs of what has been feeling all along.

She is ordering MRI to track progression of hands, hips, elbows, and check neck

to see if there is arthritis connection to migraines. She relocated and

doubled aqua therapy/OT/PT at the Children's Hospital near us... and a

prescription for a wheel chair when we go places....Although she still has

never said " has jra... " - her diagnosis codes are now

" polyarticular jra " .

So, I guess we have the answers to 's constant pain we have been seeking

the past 18 months (she's had pain since she was 3...it became intolerable

after the meningitis)...I thought I'd feel a sense of relief, having

an answer, but, among my present emotions, relief does not seem to be one

of them. Sad....because I guess this extinguishes any silly sense of hope

perhaps she will be able to play water polo again...(in my heart of hearts, I

think I already realized that when the scholarship letter arrived a couple of

weeks ago...)

I have more questions now...and new worries....helping her get through this

moment (her accepting she won't

play polo this year, especially since all her friends are athletes... the PT

says she might make it to a full day school in 6-8 months, and she wants to

graduate on time, but fell behind this summer), the meds....me being

her constant strength (her Dad has been in denial and " inconvenienced by

her being sick, and somehow, I doubt a diagnosis will change that) - I know we

will get through this...but I struggle accepting that I cannot fix this for

her...

I know we are all at different places on this path...I hope that I may continue

to ask and learn from those with experience - I know as meds and treatment are

changed, questions will arise...and I too, hope I too can help others by

passing it on as I learn.

Thank you for allowing me to share and vent here. I am working on my

positive attitude...lol...

This is truly the only place I know where I can come with certainty and know

someone is going to get what I am talking about.

Thank you, my friends.

nancy

(amanda, 17, poly)

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activities for kids.

[Guest guest]

Hi :

I've been sitting trying to of think of something to say to you. First and foremost know that I 'm sending you extra prayers and extra happy thoughts (and some hugs too). While I know it is hard to hear the diagnosis, the good new is now you can concentrate on a treatment plan. Hopefully you will find the right combination of meds quickly to help enjoy life again. Don't rule out water polo yet, you never know what will happen once they finds the meds.

I don't have any words of wisdom beyond that. I am thankful however it may sound, that you found a diagnosis. I think its much harder not knowing what is wrong with your child when she is in obvious pain.

Beth (Hannah, 10, unspecified arthritis; asthma; gerd; migraines)

Sending prayers & happy thoughts,

Beth :-)

Re: 's diagnosis

's fatigue and pain have been severe enough that getting dressed/showered can leave her done for the day, forget any social life.She cannot do many simple daily tasks with her hands anymore. On her last labs, showed positive for Crohn's and was sent by the rheumy to see a gastro... I pointed out that she is asymptomatic, but agreed to consult. Friday, the rheumy was surprised what she observed - was visibly stiff and in pain from sitting while waitng for the dr. Her ROM was noticeably decreased in hips, knees, etc. Her hands showed increased deformity, as they had at the previous visit. Her elbow (new development) was visibly swollen. She said we need to move to stronger meds (she had been on Celebrex max dose) - but she wants to consult with the gastro (in case of crohn's) to see what would be a good fit for both (since both are autoimmune). She gave me a pamphlet on

Juvenile Rheumatoid Arthritis Medications. She turned to and apologized to her...that she is now fully seeing the signs of what has been feeling all along. She is ordering MRI to track progression of hands, hips, elbows, and check neck to see if there is arthritis connection to migraines. She relocated and doubled aqua therapy/OT/PT at the Children's Hospital near us... and a prescription for a wheel chair when we go places....Although she still has never said " has jra..." - her diagnosis codes are now "polyarticular jra".So, I guess we have the answers to 's constant pain we have been seeking the past 18 months (she's had pain since she was 3...it became intolerable after the meningitis). ..I thought I'd feel a sense of relief, having an answer, but, among my present emotions, relief does not seem to be one of them. Sad....because I guess this

extinguishes any silly sense of hope perhaps she will be able to play water polo again...(in my heart of hearts, I think I already realized that when the scholarship letter arrived a couple of weeks ago...)I have more questions now...and new worries....helping her get through this moment (her accepting she won't play polo this year, especially since all her friends are athletes... the PT says she might make it to a full day school in 6-8 months, and she wants to graduate on time, but fell behind this summer), the meds....me being her constant strength (her Dad has been in denial and "inconvenienced by her being sick, and somehow, I doubt a diagnosis will change that) - I know we will get through this...but I struggle accepting that I cannot fix this for her...I know we are all at different places on this path...I hope that I may

continue to ask and learn from those with experience - I know as meds and treatment are changed, questions will arise...and I too, hope I too can help others by passing it on as I learn.Thank you for allowing me to share and vent here. I am working on my positive attitude...lol. ..This is truly the only place I know where I can come with certainty and know someone is going to get what I am talking about.Thank you, my friends.nancy (amanda, 17, poly)

Got a little couch potato? Check out fun summer activities for kids.

[Guest guest]

,I can't remember, where do you live? Perhaps there is someone on the list who can meet up with you and and talk with her. Now that you have a diagnosis you can get on the right treatment plan. Things can improve much quicker than the PT mentioned with proper aggressive medications. Crohn's is an autoimmune too and as someone mentioned is treated with Remicade so there is great hope. It is hard to not know and it is also hard to know. Come here any time you need to talk, to vent, to cry or to celebrate. Tell to hang tight and hang tough. She can accomplish her life goals-some may need to be modified but she can go far. Don't let the JRA win! e, mom to "joe" 20 poly+nancy barnes <nancyb315@...> wrote: 's fatigue and pain have been severe enough that getting dressed/showered can leave her done for the day, forget any social life.She cannot do many simple daily tasks with her hands anymore. On her last labs, showed positive for Crohn's and was sent by the rheumy to see a gastro... I pointed out that she is asymptomatic, but agreed to consult. Friday, the rheumy was surprised what she observed - was visibly stiff and in pain from sitting while waitng for the dr. Her ROM was noticeably decreased in hips, knees, etc. Her hands showed increased deformity, as they had at the previous visit. Her elbow (new development) was visibly swollen. She said we need to move to stronger meds (she had been on Celebrex

max dose) - but she wants to consult with the gastro (in case of crohn's) to see what would be a good fit for both (since both are autoimmune). She gave me a pamphlet on Juvenile Rheumatoid Arthritis Medications. She turned to and apologized to her...that she is now fully seeing the signs of what has been feeling all along. She is ordering MRI to track progression of hands, hips, elbows, and check neck to see if there is arthritis connection to migraines. She relocated and doubled aqua therapy/OT/PT at the Children's Hospital near us... and a prescription for a wheel chair when we go places....Although she still has never said " has jra..." - her diagnosis codes are now "polyarticular jra". So, I guess we have the answers to 's constant pain we have been seeking the past 18 months (she's had pain since she was 3...it became intolerable after the

meningitis)...I thought I'd feel a sense of relief, having an answer, but, among my present emotions, relief does not seem to be one of them. Sad....because I guess this extinguishes any silly sense of hope perhaps she will be able to play water polo again...(in my heart of hearts, I think I already realized that when the scholarship letter arrived a couple of weeks ago...)I have more questions now...and new worries....helping her get through this moment (her accepting she won't play polo this year, especially since all her friends are athletes... the PT says she might make it to a full day school in 6-8 months, and she wants to graduate on time, but fell behind this summer), the meds....me being her constant strength (her Dad has been in denial and "inconvenienced by her being sick, and somehow, I doubt a diagnosis will change that) -

I know we will get through this...but I struggle accepting that I cannot fix this for her...I know we are all at different places on this path...I hope that I may continue to ask and learn from those with experience - I know as meds and treatment are changed, questions will arise...and I too, hope I too can help others by passing it on as I learn.Thank you for allowing me to share and vent here. I am working on my positive attitude...lol...This is truly the only place I know where I can come with certainty and know someone is going to get what I am talking about.Thank you, my friends.nancy (amanda, 17, poly) Got a little couch potato? Check out fun summer activities for kids.

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[Guest guest]

,I guess I should clarify - when I spoke of not playing polo again, I was referring to her high school polo, and her scholarship solicitations. There are other venues that will be available to her. Patience - we have been learning lots of that...lol...Thank you for your prayers and good thoughts - I appreciate it.nancy Skinner <luvmylineman1@...> wrote: With good meds she can definitely play sports. As I write this is trying out for volleyball and has been playing soccer for 5 yrs and dancing for 3. Don’t ever give up. I know that right now things look bleak, however; now that they know what you have known all along they can get going on putting her on the right meds and hopefully feeling better than she does right now. I know what you mean about not sure if you wanted the dx or not. It pains you to know that this isn’t a simple thing that can be taken care of in a couple weeks/months etc. Give dad some time to adjust and hopefully he will see the light, or you could hit him over the head I hear that causes lights to flash hehe. My prayers and thoughts are with you.

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