first visit

[Guest guest]

Lynne,

I live day to day. And some times minute to minute. And stay close to this group. We all feel the way you do. And getting family and friends support. You will do better here. And good luck.

gayle/trans.6-99

galye@... @`

\I/

[Guest guest]

Lynne,

I remember those days well. I've been on prednisone & Imuran and then latter

Cellcept in place of the Imuran for 2 years. Now down to 2.5 mg's of

prednisone and trying to slowly taper off. Everytime I do LFT's go back up

but this time things seem to be going well. Doing it much slower than

before.

All the advise I can give you is to hang in there. We all feel like this.

It does get better though. I take 16 pills in the AM and 6 at night. I hate

to take them but this is what keeps me off the transplant list so I take them

and try not to complain too much.

I know how you feel. It will get better. Just take one day at a time.

That's all any of us can do. Stay with the group. They are a valuable

source of knowledge and inspiration. This has been as big a help to me as

any pill I take. Hang in there. It does get better.

in VA

[Guest guest]

Hi all!

Thanks so much for all the info I have received from everyone so far.

We have our first visit with the plastic surgeon this Friday. We have

been referred to UAB (Birmingham, AL). What can I expect from this

first visit?

Thanks,

[Guest guest]

Thanks so much.  We have already thought about the wheelchair option.  She is

resistant, because she doesn't want to be " different " .  She is a teenager.  But

I think she will be okay with it if she realizes it may be the only way she can

go.  When she went to 5th grade camp, I   pushed her around for three days after

she had a severe ankle injury.  I will be there as a chaperone, and her twin

brother will be there too.  She has a wonderful class, and parents too, and I

know they will help in any way they can. I agree that Dr. is really great,

and so thorough.   Jeanette

First visit

 

Thanks to everyone on you good wishes and thoughts on our first appointment. I

thought Dr. was great, and extremely knowledgable. She said Amelia had

arthritic changes in her knees and ankles. She also has scoliosis and a leg

length discrepancy. She also has some decreased muscle mass in one of her legs,

which can go along with the arthritis. She ordered a lot more blood work, and

started her on Clinoril. I am praying this works for her. We have another

appointment in 2 weeks, right before her 8th grade trip to Washington D.C.,

which I am hoping she can go on. I am a chaperone, so I will be there. The

appointment and blood work took a lot out of her, though. She is still in bed

and had to miss another day of school. Anybody out there dealing with severe

fatigue, and misssing school?

                       

[Guest guest]

My daughter Rose (11) definitely gets very fatigued. She has some liver issues

as well, so I'm not exactly sure what to attribute the fatigue to, since that is

a hallmark of liver problems as well. She doesn't usually miss school for this,

but on one occassion she did fall asleep in class and sometimes it's like

pulling teeth to get her to do her homework if she is very tired. On the

weekends, she occassionally takes naps or falls asleep in the car.

Jo

>

> Thanks to everyone on you good wishes and thoughts on our first appointment.

I thought Dr. was great, and extremely knowledgable. She said Amelia had

arthritic changes in her knees and ankles. She also has scoliosis and a leg

length discrepancy. She also has some decreased muscle mass in one of her legs,

which can go along with the arthritis. She ordered a lot more blood work, and

started her on Clinoril. I am praying this works for her. We have another

appointment in 2 weeks, right before her 8th grade trip to Washington D.C.,

which I am hoping she can go on. I am a chaperone, so I will be there. The

appointment and blood work took a lot out of her, though. She is still in bed

and had to miss another day of school. Anybody out there dealing with severe

fatigue, and misssing school?

>

[Guest guest]

So glad you liked the rheumy...that is so vital in this journey.

, only 7 and showing no signs of active disease, also gets fatigued easily.

He is only in first grade, but we have it worked into his IEP (for his speech,

vision, & JIA). Plus he has a great teacher and an overall wonderful

school...which helps immensely.

I agree about the wheelchair... used a toddler stroller until he was 6...now

has a wheelchair for those places where he needs to walk for long periods of

time.

All the best,

& , 7, poly...nystagmus...SPD

Sent from my iPhone

[Guest guest]

I am so glad that you had a good visit. It sounds like you are headed in the

right direction.

My son has more fatigue than my daughter. The Enbrel and Humira have been the

only things that help that. Yes, we have missed school. We homeschool and we

still miss school. When the kids have physical therapy, tons of dr. appts, and

painful days, it is hard to keep it all together. I wish I had advice. I guess

it would be, make sure she gets plenty of rest. I wish I had school advice, but

I don't. I do know to make sure you fill out and IEP (individualized education

P?) and they have to make accomodations for her. You'll need an experienced mom

for this!

My kids hate the wheelchair. They hate having to use it, and now it is very

rare. But, I have found that if they are " injured " , it is more acceptable than

having a disease. I am usually the one that deflects the comments, and I just

say, " He hurt his ankle. " or " Her knee is hurt. " In fact, I will put a wrap on

the joint hurting at the time, to make it look injured. Crazy, I know.

The kids cringe if I have to explain anything. I have had to explain to the

Walmart greeter that my kids NEED the chair, and they aren't just " playing " with

them.

As far as the class is concerned, I would probably just tell them the truth as a

group. I have found that my kids' homeschool group mates are very understanding

and actually helpful. Many will want to push the chair. Many will want a ride.

I remember being at the zoo with 2 tiny kids sitting in my son's lap. They

wanted a ride, too. Too cute.

Now, there are mean kids in the world, mean grown-ups for that matter. I try to

be the bad guy and just protect them from the meanness. It sometimes works, and

sometimes not. Unfortunately, that is a life lesson. I just thank God that we

don't need it often.

I am keeping you guys in my prayers. Hopefully, this med will work and start

her on the way to pain free days.

Audra

14 poly 07

Peyton 13 poly 08

>

> Thanks to everyone on you good wishes and thoughts on our first appointment.

I thought Dr. was great, and extremely knowledgable. She said Amelia had

arthritic changes in her knees and