Stills Disease

[Guest guest]

Thank you . I understand about the ''inch by inch'' part. Ciara just

started walking on her own again after not walking at all for two weeks.

But she is doing relatively well. Her hands & feet are a little swollen but

other than that she is ok.

Stills Disease

>Date: Wed, 8 Aug 2001 16:44:23 -0700

>

>Hi everyone My name is Eddens, my daughter Ciara(pronounced sierra)

>was diagnosed with Stills disease back in March. Pretty much from the

>time

>she was born she would spike a fever of 103 or higher, we would take her to

>the doctor and they would never find anything wrong.( they probably thought

>I was nuts or somethingLOL). Well finally in march after a week of going

>to

>the doctor everyday because she had this mysterious rash and a fever and

>was

>hurting. We were originally told that it was roseola, then it was a viral

>infection, finally at the localchildrens hospital here in Utah they

>admitted

>her to run tests to figure out what was wrong. After ruling out numerous

>diseases they finally diagnosed Stills. They put her on prednisone and

>naprosyn, she couldn't keep the naprosyn down so her rheumatologist took

>her off that. The pred. worked until they started tapering her off of it.

>They have just started her on Methotrexate so we are crossing our fingers

>that this medication will do the trick. Well I think I have taken enough

>time telling my story. I am so glad I finally found people I can talk to

>who know what I am talking about.;-)... Thank you~~ Eddens

>

>

>

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>

>

>For links to websites about JRA:

>http://www.geocities.com/Heartland/Village/8414/Links.html

>

>

[Guest guest]

Hi Tonya,

Ciara is currently down to2 1/2 cc's in the morning and 2 cc's at night.

Her doctor wants to get her off the prednisone but it has been a long

process. She Started at 3 cc's while in the hospital months ago. Something

I've noticed that helps my baby when she is hurting is putting her in a

lukewarm bath or taking her swimming. I hope things get better for both you

and Terah. Sincerely

Re: Stills Disease

Hi ,

My name is Tonya and my daughter Terah was just diagnosed with

systemic JRA (stills) in June of this year.

She is also having trouble coming off of Prednisone

and she is currently taking 20MG in AM and 15MG in PM.

She does not look like the same child anymore and it is

so hard to watch her in pain. She has been on Methotrexate

for 5 weeks now and we are hoping it kicks in soon.

I truly understand what you are going through except I can

not imagine having a toddler with this disease.

We have a wonderful doctor that Terah loves, she just lights

up when he comes in the room and that makes me feel better.

Hang in there I know that is easier said then done.

I have not yet learned to cope but every day is a little

easier!

Sincerely,

Tonya

> Hi everyone My name is Eddens, my daughter Ciara(pronounced

sierra)

> was diagnosed with Stills disease back in March. Pretty much from

the time

> she was born she would spike a fever of 103 or higher, we would

take her to

> the doctor and they would never find anything wrong.( they probably

thought

> I was nuts or somethingLOL). Well finally in march after a week of

going to

> the doctor everyday because she had this mysterious rash and a

fever and was

> hurting. We were originally told that it was roseola, then it was

a viral

> infection, finally at the localchildrens hospital here in Utah they

admitted

> her to run tests to figure out what was wrong. After ruling out

numerous

> diseases they finally diagnosed Stills. They put her on prednisone

and

> naprosyn, she couldn't keep the naprosyn down so her

rheumatologist took

> her off that. The pred. worked until they started tapering her off

of it.

> They have just started her on Methotrexate so we are crossing our

fingers

> that this medication will do the trick. Well I think I have taken

enough

> time telling my story. I am so glad I finally found people I can

talk to

> who know what I am talking about.;-)... Thank you~~ Eddens

To manage your subscription settings, please visit:

For links to websites about JRA:

http://www.geocities.com/Heartland/Village/8414/Links.html

[Guest guest]

Hi everyone! Ciara had an appointment yesterday with the

rheumatologist. He seemed to be concerned with her hands because her first

two fingers on both hands are quite swollen. Other than that he says she is

looking better that she did at her last appointment.

I just wish there was some kind of magic potion that would take away all

of her pain. ~~~~~~~~~~~~~~~~@)-----

[Guest guest]

,I am sorry to hear your son's symptoms are getting worse. It is always difficult to lose a good doctor, especially with a disease that is often complicated to treat. What part of the country are you in? Sometimes members have experience with or know of a doctor they have had success with they can share. You will find the people here to be warm, compassionate, and full of knowledge. I hope you find some answers to bring about improvement in your son's symptoms very soon.Welcome.mom to , 17, poly McNicholl <l.mcnicholl@...> wrote: Hi everyone I'm new to this group but have a son that was diagnosed with Stills Disease 3 years ago. Is there anyone else in the group that has a child with this? He has been backwards and forwards to the Hospital and Doctors ever since. He is now 5 but his symtoms are getting worse. We have tried changing his diet which has kind of helped. We haven't put him on steroids yet, I read about the side effects and choose to hold off as long as possible. He is now having problems with his legs, wrist, stomach, back and has extreme headaches. He is a very active boy, loves his sport but finds it really hard getting moving in the mornings and lacks the energy in the afternoon. I don't know where else to go as his specialist passed away 18 months ago. Any information would be greatly appreciated. __________________________________________________

[Guest guest]

Hi - Stills Disease is actually the adult form of systemic juvenile rheumatoid arthritis. Sometimes, docs refer to it as Stills - there are plenty of systemic families here on the board. My daughter was diagnosed with it at the age of 3 - that was over 6 years ago. I would be happy to share with you information on any of the number of possible medications - I know they are all scary - but aggressive treatment is the best opportunity for a good, long term outcome. I'm guessing based on the diagnosis of Stills that perhaps you saw an adult rheumatologist? I'm not sure where you live.... but it would be best to locate a board certified pediatric rheumatologist in your area. That can be challenging... but the American College of Rheumatology has a list on their web site. The local chapetr of the Arthritis Foundation can also be a great resource for referrals,

information on medications, school accomodations etc. I know that you'll find with the right treatment, your son will regain the energy he seems to ahve lost... and he will be able to play sports with great happiness and success! Please feel free to ask anything....I'm sorry your family has to deal with this awful disease - but I'm glad you found us! Best hopes- Colleen (mom to Caitlin, 9, systemic) McNicholl <l.mcnicholl@...> wrote: Hi everyoneI'm new to this group but have a son that was diagnosed with StillsDisease 3 years ago. Is there anyone else in the group that has achild with this? He has been backwards and forwards to the Hospitaland Doctors ever since. He is now 5 but his symtoms are getting worse.We have tried changing his diet which has kind of helped. We haven'tput him on steroids yet, I read about the side effects and choose tohold off as long as possible. He is now having problems with his legs,wrist, stomach, back and has extreme headaches. He is a very activeboy, loves his sport but finds it really hard getting moving in themornings and lacks the energy in the afternoon. I don't know whereelse to go as his specialist passed away 18 months ago. Anyinformation would be greatly appreciated. __________________________________________________

[Guest guest]

Hi Colleen,I met on the Still's board and sent her over here.  She is from New Zealand.  (n, systemic 18)On Oct 17, 2007, at 5:17 PM, Colleen wrote:Hi - Stills Disease is actually the adult form of systemic juvenile rheumatoid arthritis. Sometimes, docs refer to it as Stills - there are plenty of systemic families here on the board.   My daughter was diagnosed with it at the age of 3 - that was over 6 years ago.  I would be happy to share with you information on any of the number of possible medications - I know they are all scary - but aggressive treatment is the best opportunity for a good, long term outcome. I'm guessing based on the diagnosis of Stills that perhaps you saw an adult rheumatologist?  I'm not sure where you live.... but it would be best to locate a board certified pediatric rheumatologist in your area.  That can be challenging... but the American College of Rheumatology has a list on their web site.  The local chapetr of the Arthritis Foundation can also be a great resource for referrals, information on medications, school accomodations etc. I know that you'll find with the right treatment, your son will regain the energy he seems to ahve lost... and he will be able to play sports with great happiness and success! Please feel free to ask anything....I'm sorry your family has to deal with this awful disease - but I'm glad you found us! Best hopes-Colleen (mom to Caitlin, 9, systemic) McNicholl <l.mcnichollxtra (DOT) co.nz> wrote:Hi everyoneI'm new to this group but have a son that was diagnosed with StillsDisease 3 years ago. Is there anyone else in the group that has achild with this? He has been backwards and forwards to the Hospitaland Doctors ever since. He is now 5 but his symtoms are getting worse.We have tried changing his diet which has kind of helped. We haven'tput him on steroids yet, I read about the side effects and choose tohold off as long as possible. He is now having problems with his legs,wrist, stomach, back and has extreme headaches. He is a very activeboy, loves his sport but finds it really hard getting moving in themornings and lacks the energy in the afternoon. I don't know whereelse to go as his specialist passed away 18 months ago. Anyinformation would be greatly appreciated.__________________________________________________