Re: [JRA]e

[Guest guest]

e:

It is the Arthritis Prevention, Control and Cure Act of 2004 and it's

currently in Congress awaiting approval. We need to all write our

senators and congressmen to make sure that they support this bill. To

read more about it, go to www.arthritis.org and click on the advocacy

tab.

Maybe with more funding we can change the face of the disease. Treatment

has come a long way in the last few years, but in my opinion, we are

still light years away from the possibilities for easier treatment for

arthritis. In 's case, it is thought that the arthritis meds led to

the ulcer that caused her death.

You aren't stirring any waters! I am so glad that you asked.

and Rob 15 Spondy

On Tue, 10 Aug 2004 23:06:02 +0200 chrisandbrandie@... writes:

I don't mean to stir any waters. But what do you mean by legislation to

CHANGE the treatment of arthritis.

Really, Im clueless, and I just want to know. If it's a controversy you

can respond off list to me. LOL

~e

Re: sad

I am so sorry to hear about . Although I didn't know her, my heart

goes out to her family and I am praying that they find comfort

somehow...

This should energize us all to do what we can to fight for legislation

to

CHANGE the treatment of arthritis.

and Rob 15 Spondy

On Mon, 9 Aug 2004 22:22:03 EDT faces1999@... writes:

Let me try again with the last message...hugs! donna

It is with great sadness that I pass this information along to all of

you.

Ankeney, 16 years old with JRA, died over the weekend. Many of

you

will

remember, and her family have attended many AJAO

Conferences in the past years. s family have been very active

Arthritis Foundation members, and 's Mom was the Director of the

Missouri Arthritis Program for 5 or 6 years, until this past spring.

Following is part of the email from AJAO chair, Ann Kunkel:

It is with a very sad heart that I write to let you know that

Ankeney passed away on Saturday, August 7. She awoke not feeling well

and asked her mom to call 911. They had to insert a trach to help her

breath and put her on life support at the hospital. She died Saturday

afternoon while on life support. had an ulcer that ruptured and

the family was not aware that she had an ulcer.

Visitation is at Woodcrest Chapel in Columbia, Missouri on Tuesday

evening from 6-8 pm. The funeral will be at 1:00 pm on Wednesday at

Woodcrest Chapel. Woodcrest Chapel is located at 2201 W. Nifong.

(Across

from the Millcreek Elementary School.)

A memorial fund has been established in Ankeney's name for the

Joint Arthritis Camp that is held annually in Lee's Summit, Missouri.

Contributions can be sent to Memorial Funeral Home, Attn: Kent

Knudsen,

1217 Business Loop 70 West, Columbia, Missouri 65202. The phone number

is 573-443-3173.

If you have any questions please feel free to contact Ann or myself.

Janalee

[Guest guest]

e,I do think it would be quite helpful for to meet with someone her age who also has jra and is successfully dealing with it. At this point, to my surprise, her dr is planning to put her on methotrexate, along with her current celebrex..I have learned this dr begins conservatively/cautiously with everything.It has been tough as at this age, so many plans and goals have been forfeited...but she is a fighter, and she will get her spunk back once she is feeling better.And I do appreciate having a place to share, vent, and ask questions - I am finding myself with many questions now.How did it go at the ER visit with Joe? I had assumed she was all better until I saw your post (I'm trying to get caught up after a few days away). Did she get the IV antibiotics? I hope it is getting better.Thanks for your support e - let me know about Joe. (amanda, 17, poly)bound for london

<boundforlondon@...> wrote: ,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. Shape in your own image. Join our Network Research Panel today!

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[Guest guest]

,I am hopeful that this is the trick for to get her on the road to feeling much better and to be able to enjoy the things that she enjoys. I don't know if I have told you about my daughter's history. She was a very active and dedicated dancer prior to diagnosis. In fact, we thought she had been injured dancing since her knee gave out and was swollen, so that was our first thought. But sadly, that was not the problem we finally realized. She tried to dance, to keep up her routine but sadly was unable to do so. So, now what? This was her life and her dreams. She was also a musician, played the violin and she found she could still do this, not easy but easier than dance. She focused on this more, and changed her instrument to the viola. This was in 9th grade. As a senior in high school, with much struggle, emergency surgery etc. she was able to go to New York from our home in the Seattle area to play with her youth symphony (which she now had time to join

since she was no longer dancing) in Carnegie Hall. It was not an easy trip for her, but was such an adventure. So, sometimes one door closes and another opens (I'm not saying this that won't be able to do her beloved water polo but there are sometimes other things that develop when we can't participate in our first love). joe still loves dance. Her first year in college she decided to join her school's swing dance team, but she found that she couldn't. They were disappointed that she did not do the team because she has the talent, but she occasionally goes to learn new steps and things.It is hard to have to shift your focus, to shift your dreams. joe has suffered with depression with everything and was started on anti-depressants. When she went away to college she decided she did not need all these medicines and her anti-depressant was one of them, but things went rapidly down hill with all the changes, the stressors etc. She learned that she really needed

to stay on this medicine and others that she quit. But she had to learn this.Her ER visit was a very long one--it was a very busy place that day. The doctor decided to x-ray the thumb to see if part of the kitten's tooth was left in the thumb. Nope. They decided to just restart her oral antibiotics, the same as before, and put her in a splint. That was not what her doctor wanted at all-he wanted the IV. It is finally showing some progress, and I hope this is in the end. But who knows. It really flared up again after her last Remicade. I found out that the ER staff does not understand what type of serious medicines MTX and Remicade are. They were only concerned about her steroid use. I hope that this takes care of it this time. It took us about 5 hours to get out of the ER. joe has met a couple others with jra, but found there stories so different than hers that it was a bit harder to relate. But she really wants to meet some YAs with job experience to help

her with the transition from student to employee. I am leaning towards taking her to the new YA conference once I hear some more details. If not, we may try the LA one next year. Have to see how the family budget is doing first, not an easy thing with medical bills and all, but perhaps. I hope returns to school quickly and to all that she loves.enancy barnes <nancyb315@...> wrote: e,I do think it would be quite helpful for to meet with someone her age who also has jra

and is successfully dealing with it. At this point, to my surprise, her dr is planning to put her on methotrexate, along with her current celebrex..I have learned this dr begins conservatively/cautiously with everything.It has been tough as at this age, so many plans and goals have been forfeited...but she is a fighter, and she will get her spunk back once she is feeling better.And I do appreciate having a place to share, vent, and ask questions - I am finding myself with many questions now.How did it go at the ER visit with Joe? I had assumed she was all better until I saw your post (I'm trying to get caught up after a few days away). Did she get the IV antibiotics? I hope it is getting better.Thanks for your support e - let me know about Joe. (amanda, 17, poly)bound for london <boundforlondon > wrote: ,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. Shape in your own image. Join our Network Research Panel today! Park yourself in front of a world of choices in alternative vehicles.Visit the Auto Green Center.

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