Re: New to Group. Questions about Still's

[Guest guest]

Welcome to the group and please know that my thoughts and prayers are with you

and your sweet little baby.

 

I have personally known one other child who has had Still's.  She was around 9

when she had her flare.  The parents found a good Rheumatologist, she underwent

about a year of medication, and after that was doing great.  Their pediatrician

told them that sometimes when Still's strikes in children, it can be

" outgrown " ...?  She is now in high school and still doing great, playing

softball even!

 

Hopefully this will be the way it is with your child. Feel free to ask questions

or vent with this group. 

 

Keep us posted,

Gail (KY)

Subject: New to Group. Questions about Still's

To: Stillsdisease

Date: Wednesday, January 7, 2009, 1:03 AM

Dear All,

Hi! Just two weeks ago my daughter was diagnoised with Still's disease. She

is only 19mths. She is on steriods and an immune suppressant. She is well

but has not been able to walk since it started. She has inflammation in her

knees and ankles.

I read about about Still's but each time I get so emotional. I just don't

believe this is happening and I dont know enough about the disease to know

how much it will affect her daily life.

Thank you.

[Guest guest]

Dear Anielle,

I'm so sorry that your daughter has been affected by Still's. I'm glad to

hear that she is tolerating her medications. I wish I could take your fears

away. Children are so amazingly resilient,and your daughter will walk in her own

time. Her energy needs to go towards quieting her storming immune system. What I

can share with you after having Still's for 9 years,is that one day can be

dramatically different from another. Good and bad. Take the time to be kind to

yourself,in whatever form that takes. And try to let your daughter " just be a

kid " . Sometimes I need to take a break from all the information,because it can

make me feel overwhelmed. I wish you and your family well,and all the good karma

in the world.

Take Care,

Nissa Penland

To: Stillsdisease

From: aniellekumar@...

Date: Wed, 7 Jan 2009 17:03:51 +1100

Subject: New to Group. Questions about Still's

Dear All,

Hi! Just two weeks ago my daughter was diagnoised with Still's disease. She

is only 19mths. She is on steriods and an immune suppressant. She is well

but has not been able to walk since it started. She has inflammation in her

knees and ankles.

I read about about Still's but each time I get so emotional. I just don't

believe this is happening and I dont know enough about the disease to know

how much it will affect her daily life.

Thank you.

[Guest guest]

Hello Anielle -

I too am new to this group - however I am not new to Systemic JRA (AKA Still's

Disease)

I was diagnosed at about 18 months old - just like your daughter.

I would love to talk to you more about it, my experiences, and my life as an

adult. I am now 36 years old.  And have 2 wonderful children.

I havent really participated too much in this group - just basically reading the

other posts, because I just signed up last week. But I can tell you first hand

about what I have experienced throughout my life as a girl suffering from this

disease!

Lets talk - anytime -

le Lindoff

Subject: New to Group. Questions about Still's

To: Stillsdisease

Date: Wednesday, January 7, 2009, 6:03 AM

Dear All,

Hi! Just two weeks ago my daughter was diagnoised with Still's disease. She

is only 19mths. She is on steriods and an immune suppressant. She is well

but has not been able to walk since it started. She has inflammation in her

knees and ankles.

I read about about Still's but each time I get so emotional. I just don't

believe this is happening and I dont know enough about the disease to know

how much it will affect her daily life.

Thank you.