Fwd: questions again -

[Guest guest]

I have a few questions to maybe help me with this waiting on a

diagnosis thing, if i asked these before please forgive me! LOL I

am a little nutso right now. LOL

1.) since your childs first sign that there was something wrong how

long before you got a diagnosis------8 yrs for

2.) were they sure of this diagnosis right away or change their minds - It

started off as Growing Pains, Went to Lupus then finally JRA then related

issues.

3.) has anyone thought of seeing if St Jude did any research for jra

and has anyone tried getting in there if so.- I would contact St. Judes as I

have thought about that place since Commercials I see a lot lately. It does

not hurt to call for information

4.) has anyone been treated at the Cleveland clinc - has been

treated only in Georgia area. As we have 3 Great Childrens Hospitals here.

5.) do you encourage sencond opinions? 0 Yes, I encourage a Second Opinion

on anything. With my child I have always had a Second opinion and if it takes

it I would go for a 3rd and 4th and 5th Opinion if needed Until I felt that

Mom gut feeling with content.

6.) with jra does your child at times seem ok them the next 5

minutes they are in alot of pain - Yes, goes through periods like

this as well. Just Document it and hope for better days.

7.) during a flare how long before you chils is up and moving during

the day? Caleb on friday it was 130pm before he could walk then it

was with a severe limp and today is a repeat of yesterday. now they

want to try him off the naproxyn and this is what is happening i

feel horrible for him and as a parent.---- you should not feel like

this but to most of us Parent's we have been there and felt that. has

had days when it took her hours to get to moving around. Then times when it

would take days or weeks. Each child is different but theres a pattern to each

child.

I guess I am just getting upset with all of the road blocks and are

looking to my jra moms and dads and grandmas for help. please give

me any advise. I am just having a hard time with stress and the not

knowing right now!

, Take a DEEP Breathe and let it out. I know it is hard right now to

see a light at the end of the Tunnel. There is one though. There will be

easier days ahead. There will be harder days ahead and every day will not be

the

same as yesterday. Something different will happen. Honestly I am a patient

person and I do not let much get to me. I sit out the storm most of the time

now. But believe me I was the Storm those ER's and Dr's did not like. lolol I

have been looked at like I was not doing something right for my child. But

the only thing that kept me going was . Plus this group many years ago.

:-). Starting out on this road it is new to you. No matter if your a Dr with

a child with JA. I think about each Mom and child in this group everyday. I

know someone is struggling. No question is to big or small here

Robbin

Thanks in advance for all of your responses.

and Caleb 7 ? systemic JRA

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