RE: Finally a diagnosis for Sadie

[Guest guest]

Glad you found a diagnosis what a rough ride to get to where you are know, I

hope you can find out more on this and fill us in ...................Your in our

thoughts and prayers.//////////Terri

Finally a diagnosis for Sadie

Sadie has been diagnosed with Juvenile Dermatomyositis and

Vasculitis. This is an inflamation of skin, blood vessles and

muscles. This is a form of arthritis and muscular dystropy.

We are releieved to finally have a diagnosis after five years of

trying to figure it out. However, her disease is in moderate form

since it took so long to diagnose. The only thing that confirmed

diagnosis was the muscle biopsy. Every lab work that was done was

always inconculsive. We decided we would start meds on Wed, the

day after her birthday.

Thank all your for your thoughts and prayers, now begins the road of

getting her into remission.

Jeanine

[Guest guest]

I'm glad you finally got a diagnosis for Sadie. It's been a long search

for answers. Now, finally, you can begin treatment. I like your idea of

waiting until after her birthday. Is Sadie 11 today? A very happy

birthday to Sadie!

Liz

Finally a diagnosis for Sadie

Sadie has been diagnosed with Juvenile Dermatomyositis and

Vasculitis. This is an inflamation of skin, blood vessles and

muscles. This is a form of arthritis and muscular dystropy.

We are releieved to finally have a diagnosis after five years of

trying to figure it out. However, her disease is in moderate form

since it took so long to diagnose. The only thing that confirmed

diagnosis was the muscle biopsy. Every lab work that was done was

always inconculsive. We decided we would start meds on Wed, the

day after her birthday.

Thank all your for your thoughts and prayers, now begins the road of

getting her into remission.

Jeanine

[Guest guest]

Jeanine. What a long road your family has been down. I am so glad to hear

that you FINALLY have a diagnosis for Sadie. I hope she is able to find some

relief now!

Alia and Caroline, age 2, poly and Uveitis

Finally a diagnosis for Sadie

Sadie has been diagnosed with Juvenile Dermatomyositis and

Vasculitis. This is an inflamation of skin, blood vessles and

muscles. This is a form of arthritis and muscular dystropy.

We are releieved to finally have a diagnosis after five years of

trying to figure it out. However, her disease is in moderate form

since it took so long to diagnose. The only thing that confirmed

diagnosis was the muscle biopsy. Every lab work that was done was

always inconculsive. We decided we would start meds on Wed, the

day after her birthday.

Thank all your for your thoughts and prayers, now begins the road of

getting her into remission.

Jeanine

[Guest guest]

Jeanine,

I can't even imagine going through five years of trying to figure out

what was wrong...you must be a strong person. In your post you

mentioned that all lab work came up inconclusive. I am just

wondering if the creatinine phosphokinase (CPK) or the aldolase

levels were always normal too? When I read your post I immediately

referred to the book by Dr. Lehman to learn more about what your

daughter's disease. He mentions that these levels are usually

abnormal in children with dermatomyositis. Was the muscle biopsy

painful for your daughter?

I hope her treatment greatly improves her condition and bright days

are ahead of her, and you.

( 12 systemic)

> Sadie has been diagnosed with Juvenile Dermatomyositis and

> Vasculitis. This is an inflamation of skin, blood vessles and

> muscles. This is a form of arthritis and muscular dystropy.

>

> We are releieved to finally have a diagnosis after five years of

> trying to figure it out. However, her disease is in moderate form

> since it took so long to diagnose. The only thing that confirmed

> diagnosis was the muscle biopsy. Every lab work that was done was

> always inconculsive. We decided we would start meds on Wed, the

> day after her birthday.

>

> Thank all your for your thoughts and prayers, now begins the road

of

> getting her into remission.

>

> Jeanine

[Guest guest]

-Wow Jeanine,

An answer finally after 5 years.. I can't even begin to imagine what

you have been though all these years. At least now you know whats

going on and treatment can start.

Could you tell me a little more about JD and how its affected Sadie.

After I read your post, I went and read up on it, but it always makes

more sense to me to hear of others real experiences with whatever

they have. If that makes any sense. What are the treatments they will

use for Sadie?.. it sounds like its pretty similar to JRA medications

etc.

Im very interested with the vasculitis... Nicks rheumy had mentioned

this word when she found a sore on his ankle and told me to watch it

closely... well last month he got another one on his hand and now

last night ive noticed a 3rd one on the inside of his upper arm, just

above his elbow. The rheumy is unaware of sores #2 and #3. We see her

on Thursday, so she will be able to see #3. Ive tried to read about

vasculitis but it doesnt make much sense to me.

Hugs to you and to Sadie and a HAPPY BIRTHDAY from us all....

Hugs Helen and (6,systemic)

-- In , " maldomaldo " <maldomaldo@y...> wrote:

> Sadie has been diagnosed with Juvenile Dermatomyositis and

> Vasculitis. This is an inflamation of skin, blood vessles and

> muscles. This is a form of arthritis and muscular dystropy.

>

> We are releieved to finally have a diagnosis after five years of

> trying to figure it out. However, her disease is in moderate form

> since it took so long to diagnose. The only thing that confirmed

> diagnosis was the muscle biopsy. Every lab work that was done was

> always inconculsive. We decided we would start meds on Wed, the

> day after her birthday.

>

> Thank all your for your thoughts and prayers, now begins the road

of

> getting her into remission.

>

> Jeanine

[Guest guest]

Jeanine,

I'm so glad you have finally gotten a dx. I know you must be so

relieved to finally have a name for it. I'm curious about the muscle

biopsy. Logan is scheduled for one in July,,and I'm wondering if you can

tell me what to expect. How was it done,,is it painful,,what is the

recovery time? Etc,,etc. Also,,how soon did you get results after it was

done?

What will Sadie's treatment plan be,now? Is this a progressive

disease,,or is there a chance of remission? Hope I didn't overwhelm you

with questions

Kim and Logan 6

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[Guest guest]

Hey that's my doctor!!! She is so awesome!!!

[Guest guest]

Hi Jeanine,

I'm so happy for you to have a diagnosis -- not happy that you have

to have one though. We went almost 4 years before we got a

diagnosis and I thought that was the longest I had heard of. My

husband and I were actually relieved to have a diagnosis because at

least it could then be properly treated. Best of luck with good

response to the meds, quickly.

Stacia and Hunter,8,systemic,iritis

[Guest guest]

Jeanine,

Are you planning to attend the AJAO conference in San Diego? One of the

Friday morning sessions is on dermatomyositis. Dr Christy Sandborg is

listed as the presenter.

Liz

Finally a diagnosis for Sadie

Sadie has been diagnosed with Juvenile Dermatomyositis and

Vasculitis. This is an inflamation of skin, blood vessles and

muscles. This is a form of arthritis and muscular dystropy.

We are releieved to finally have a diagnosis after five years of

trying to figure it out. However, her disease is in moderate form

since it took so long to diagnose. The only thing that confirmed

diagnosis was the muscle biopsy. Every lab work that was done was

always inconculsive. We decided we would start meds on Wed, the

day after her birthday.

Thank all your for your thoughts and prayers, now begins the road of

getting her into remission.

Jeanine