Re: To Robbin

[Guest guest]

Robbin -- we got a great teacher packets from the JRA association. It is a

small booklet that explain JRA completely and even has a test for the teacher

to take on evaulating a child. I always get a copy each year for my

daughters new teachers.

God Blees,

Sandi A. (Ashli's mom)

[Guest guest]

Sandi

great

Robbin

[Guest guest]

Robbin: me, Ashli and her two friends we carpool with always play the

question game on the way home. Me and Ashli have been playing this since she

was 3 years old and went to preschool a few hours a week. When they start

" not remembering " then I throw out some really crazy/goofy answer and they

all start to laugh and then they remember!

Ashli's first day was yesterday and she survived wonderfully...me, not so

great! I miss her so much when school starts again. She's our only miracle

and we have so much fun when we are together! She sits in the back of the

room (in a big desk) and she told me she got to sharpen pencils, clean the

chalkboard, take papers to office, etc. (The teacher's way of having her

move around every hour.) Her girlfriends are jealous that the teacher always

picks Ashli to do this things -- any ideas on how to avoid this one? Always

a problem.... Already did a post to everyone today about this blisters she

has on the back of her heel, worrisome.

Thanks for the concern and help,

Sandi A. (Ashli's mom)

[Guest guest]

Too tight shoes? I don't have arthritis but I do jog often. I have to be

careful of the shoes I wear because of the irritation they give. Tally, who

does have arthritis, wears alot of sandles because normal shoes and sneakers

often become tight as the day wears on.

Speaking of Tally... I have noticed that when I give him milk products,

he becomes extremely sore. I have thus given them up completely and went to

soy and rice products and he appears to be doing well even with the

prednisone taper. When he does get dairy though, it's almost as though he's

back to where he was before. My professor said that it will take another

month or so to see the benefits of perna but so far I'm optimistic.

All it is is taking life one day at a time and going with the flow. He

goes to his rheumatologist on Tuesday and then to the Shriners Hospital the

second week of September. Wish us luck.

kathy and tally

[Guest guest]

Sandi

great she made it through the first week

this is great

the girls will adjust to the teacher asking her to do special things

if it gets worse just talk with the teacher

and maybe on show and tell

you and your daughter can bring something about JRA

this will help the kids understand alot

they will see your daughter as herself a great young woman

and friend

melissa told me wednesday that the teacher called on her alot and she wish

the teacher didnt i told melissa that not to worry she just likes her and

she does what shes told really i dont know why the teacher did it cause i

didnt say anything other than melissa has JRA and i would have a 504 done on

her

maybe this teacher understands what it is

you can take a pack of cookies to the class every week

this is what i use to do when melissa started school

this also helped melissa not feel so out of place you might say

due to melissa was the size of a 2 year old she was 5 at the time

the teachers use to carry her back then

lets see how this comeing week goes

talk to her everyday about how her day went and what she did

lolol i understand how you and your daughter is a special bond with that

special time

melissa and me do it and still can make the kids laugh

turn on the radio and dance the dance lolol

even to brittany spears lolol

the kids see a special bond with you and your daughter they will be cool

about it

calm down honey its her time

and your time to i know you miss her being right there

but do something in the time you have alone

melissa is our mirical also and its hard on us but make her something special

before she gets home maybe a cake or some cookies

something she likes

let me know how things are doing

Robbin

[Guest guest]

Kathy

dairy products i know produce more mucus i found out since melissa has

asthma

it could be that more fluids build up due to his intake of milk

i know kids need milk but melissa cant tolerate it but can tolerate cheese

and eggs

if he can tolerate eggs and cheese this is calcium and has just as much

vitamins in it but a calcium tablet may be better than trying milk

try eggs and cheese then try ice cream see if this causes pain

if it dont then let your child eat ice cream instead of milk

you might try powder milk also

you have to kinda wean out what causes this and be sure to tell the doctor

when you find out

let me know what you find out

Robbin

[Guest guest]

Hi Kathy,

I know there's a lot of heated debate over whether or not certain foods

may increase symptoms of arthritis but it makes sense that what we put

into our bodies affects how we feel. If people, like yourself, are able

to identify certain food products that seem to relate to increased

symptoms of their child's arthritis, it definitely makes sense to

eliminate or at least try to limit these products. Did you have Tally

tested for allergies? If so, did lactose show up as something his body

is sensitive too? Just curious

Good luck at the rheumy visit! I hope it turns out well.

Aloha,

Georgina

akally@... wrote:

>

> Too tight shoes? I don't have arthritis but I do jog often. I have to be

> careful of the shoes I wear because of the irritation they give. Tally, who

> does have arthritis, wears alot of sandles because normal shoes and sneakers

> often become tight as the day wears on.

> Speaking of Tally... I have noticed that when I give him milk products,

> he becomes extremely sore. I have thus given them up completely and went to

> soy and rice products and he appears to be doing well even with the

> prednisone taper. When he does get dairy though, it's almost as though he's

> back to where he was before. My professor said that it will take another

> month or so to see the benefits of perna but so far I'm optimistic.

> All it is is taking life one day at a time and going with the flow. He

> goes to his rheumatologist on Tuesday and then to the Shriners Hospital the

> second week of September. Wish us luck.

> kathy and tally

[Guest guest]

Robbin -- thank you so very very much for your wonderful letter. Your

support and understanding means a lot to me. I'll have to check with the

teacher on snacks and show-n-tell. I know usually 3rd graders don't have

show-n-tell anymore, but there is a science project coming up and if anyone

knows how Ashli could do a science project on JRA, that would be great!

Today Ashli woke up and both knees were slightly swollen and very painful --

it's been a while. But after about 2 hours and medication the pain was

pretty much gone, thank God. Teacher has a set of books for us, I pick them

up on Friday. Thanks to everyone for that suggestion. Ashli keeps telling

me all the jobs she is getting and seems to enjoy, will keep an eye on things

and see what happens. I know everyone understands my over-reacting and being

concerned!!!!

God Bless,

Sandi A. (Ashli's mom)

[Guest guest]

Georgina,

I'm glad to see Josh on a tapered prednisone dose. Tally's dose is being

held at 9mg a day. He hasn't been given any food sensitivity tests. Next

time I see his regular pediatrician, I'll ask.

Tally had an appointment today in ton. I normally travel the night

before (because it takes 4 hours to get there from Clemson) and stay in a

hotel. This time was the first time I used Priceline.com to name my own

price. I only paid $15 for a room at the Best Western. Not bad considering

they were offering rooms for $69. I also use it for gas where I pay $1.14 a

gallon.

His appointment was today and he has grown an inch. I'm very happy about

this. His RD isn't pleased with Tally's progress so he has added Embrel. He

doesn't want to raise his prednisone level back up nor up his mtx so he is

going to try Enbrel and see how he responds for 4 weeks.

We are still walking that tight rope between wonderful and miserable.

Knock on wood that even though his knees are swollen, he is much better than

he was at first onset of disease. I'm grateful for the aggressiveness that

his doctor is treating his disease. Dr. Silver is the pediatric

rheumatogist in South Carolina.

I'll keep you updated on how things are going here. So far Tally is

holding true to everything I have read about children who suffer from RA, and

that's that they have a remarkable ability for adapting and overcoming their

ailments.

kathy

[Guest guest]

Robbin: thanks for the help with the shoes. Never thought about her feet

swelling. I do know that in the past year we've had problems with possible

athelete's foot (Ashli was getting blisters in between toes and on bottom of

her feet). We used powder for about 1-2 weeks and changed socks often and

the blisters went away. Doctor didn't really know what the blisters were

from then either. I don't feel comfortable putting lotion on blisters,

though. Wouldn't it be better to clean foot and let them air out at night?

I've been putting band-aids over them when she goes to school.

Thanks again,

Sandi A. (Ashli's mom)

[Guest guest]

Sandi

you can try to just let them air but if the skin is broke then this is the

time to treat it

when shes not walking at all melissa will come out of her shoes when she

gets home socks are sometimes worn my hubbys feet will swell sometimes

thats how i know about it

let me know what works with her

Robbin

[Guest guest]

Robbin: Praying for all of you daily! The last minute surprises with this

disease is always hard for me, too. I know what you mean about them playing

one minute and then the next it hurt to even move an inch! Glad you had the

504 and school or prepared for this situation. You all hang in there!

God Bless,

Sandi A. (Ashli's mom)