Re: welcome Joy

[Guest guest]

,

I am so sorry to hear that n is not doing well. I'm sending two big

cyber hugs, one for each of you! Sometimes when our children seem to be

making progress, all of a sudden it seems that they're suddenly right

back where they started again. I remember how worried and sad I was,

when Josh was having a really rough time. It can be very exhausting for

a parent, emotionally, the stress of seeing our child in discomfort and

trying our best to help, sometimes with little or very slow improvement.

I hope that, despite your daughter's current situation, you're

remembering to take time outs for yourself. That's hard to do when we

have young children needing our time and attention, and one who is not

feeling well, but it's very important. Be sure to have some special time

just for you too, to recharge your batteries. It's really hard, all of

the ups and downs, until the right combination and dosages of medicines

are found and the arthritis is better controlled. Thinking back to my

early days on the still's list, I used to write that I was so happy that

Josh finally had a good day. Or a good couple of days in a row. And CAT

told me that one day, I'll be measuring it more in terms of Josh had a

really good month, except for those couple of bad days. Sure enough,

that's the way it's become.

After two weeks, I guess it was a good idea to try a different NSAID. I

hope n has better results with Voltaren than she did with the

indomethacin and that her headaches and stomache aches, at least, have

subsided. Did the doctor have any suggestion on what to try next to help

with the itchiness? That must be driving her crazy. The pediatrician

suggested that we give liquid Benadryl at one time, which helped

with his itchiness (which fortunately, was only temporary) and also

helped him to sleep.

I know how you must feel about considering using steroids. Despite

possible side effects from long term use, prednisone can be extremely

helpful in treating the symptoms of flares. If the plan is to use it on

a short term decreasing schedule, that sounds very reasonable.

Especially if n will be starting MTX injections, soon. It might be

just what's needed to tide her over until then. Often, like Jane

mentioned, the results are amazing. It acts very quickly. The doctor is

aware of your hesitancy to use it and seems cooperative. If there isn't

a great deal of improvement soon, and they suggest using a course of

steroids, maybe you should reconsider. Just be sure to reiterate that

it's for the short term and if possible, try alternate day dosing

instead of every day. Same effectiveness, less chance of any unwanted

side effects.

I hope things start looking up soon. n, and the whole family, will

be in our thoughts.

Aloha,

Georgina

> From: " WILLIAM PRICE " <william.e.price@...>

>

> Dear Joy, Welcome to the list. As I tell any newcomer, you have come

> to the right place. Our 11 year old daughter, n was diagnosed

> with Still's in November. She had the rash, fever, joint pains, etc.

> She was first put on naprocyn 3x a day. We decided to get a second

> opinion in Seattle last month, and they said that n still had too

> much inflamation and they switched her to indomethacin. She took that

> for two weeks, had severe headaches, and now she just started another

> nsaid called Voltaren. n originally had fever all of November

> and part of December even on the naprosyn. She has always had the

> rash, and originally it was extremely itchy, and then by January the

> itchiness lessened. Some times n would be pretty good, and other

> times she would have big black circles under her eyes. We have never

> found any relation to anything on how she feels. There is no rhyme or

> reason. She missed most of November and December in school, and

> returned pretty much full time in January. This last week we have hit

> a downturn. I guess we are in a first flare since diagnosis. Every

> night the itching would get a bit worse, and she started complaining

> of headache and stomachache all of the time this week. We thought it

> was the indomethacin and called the doctor. We did some playing

> around with the dose, but by Friday the doctor switched meds again.

> By last night she was as bad as when she was hospitalized in

> November. She now has fever again, rash everywhere, and she couldn't

> walk last night. One of the toughest things about this disease are

> the decisions the parents have to make on what direction to go to cure

> this disease. We hesitate to put n on steroids, though the

> doctor wanted us to start last Friday on a one month descending dose

> to get the disease in check. (We see the good doctors in Seattle. We

> see the new one , Dr Morashima.) As soon as we can get her into

> Seattle, it looks like 2 more weeks, we will start the mtx shots.

> This is a bit of our history and how the disease has begun with us,

> and I hope this helps. We are at the beginning of the disease like

> you. I would recommend that you see a ped. rheumatologist. Very few

> doctors see JRA, much less the systemic type. It is a complicated

> disease and manifests itself different ways in different children.

> You have the fevers, rash, joint problems, headaches , stomachaches,

> and organ enlargement. Good luck. in Portland

[Guest guest]

Joy, welcome. You will love this forum. There is a wealth of information here.

I too had not known for many many years. I was over 30 when I found out. I was

much more happy to finally find out what was wrong with me then I was scared

about CMT. Also of course once you know that you have it, you can take any

preventative measures necessary to help your self.

Do you have Type 1A? Was it confirmed with a DNA test? Welcome again, and I

hope you enjoy it here. I know I do.

[Guest guest]

Joy,

Hi! Welcome to the group. My name is Christa Hartman. I live in ville PA.

I am 27 yrs old. I was diagnosed when I was in

second grade. I have a sister and three nieces. I have had surgeries to correct

it. I have had ankle fusions and tendon transfers. As

a child I was very clumsy and I still am. I have sprained both ankles. I have

hip displashia. I have bulging discs in my lower back

brought on by the way I walk. I have a little hand weakness. I was diagnosed in

second grade. I like to bowl, read, play on the

computer. I am currently working and wear braces. I work as a cashier at

Wal-Mart. I had my first surgery when I was 13 or 14.

Hope to hear from you soon.

Christa

[Guest guest]

Hi Joy,

Glad you found us.

[Guest guest]

Hi Joy -

Welcome! I love your name...

I also feel relieved to have a " reason " for being clumsy for so

long... I'm currently waiting for the results of the DNA test to see

what type I have.

Are you getting fitted for an AFO brace to help the symptoms? I'm

using a cane now, but should be getting the brace soon. That, and

seeing a physical therapist are my current " treatments. "

This group is really great! I'm mostly a lurker, but wanted to let you know I

understand how you feel. There is great support here.

Take care,

Juli

[Guest guest]

Welcome Joy, so glad you are with us.

Geri