Question for everyone

[Guest guest]

HI,

I'm not in USA, but i can understand how it's hard to keep the "good" doctor for our children.

I think the real matter with the children it's they are children. the dr. use to treat adult with RP . But is 19 isn't so young. i'm sure one of the group can give you the good answer.

Coralie and Ben have been on metho since 4 month. they began to decrease pred from 5 mg per month they was at 50mg on june.

I want to give you a lot of "courage" from a mother to a mother.

Marie-pia

[Guest guest]

Phyllis, I'm so sorry to hear that is in the hospital. When I was

on metho, they told me that it wouldn't start to work to its full extent

until I had been on it 3 months. I wasn't to lower my pred until the metho

was stable and then we did it in really small amounts and over a long

period. I was on 40 mg of pred when I started the metho. After 3 months I

lowered to 35mg and stayed there a 3-4 weeks and then went to 30mg. etc. I

wasn't able to get under 25mg on the pred in a year so they switched me to

Plaquenil. I then started to lower the pred and when I got to 10mg did just

1mg a month. I got to 7mg before my heart surgery and came home back on 7mg.

YEAAH!! But have had to up to 20 mg again. Think it is still from the

stress of the surgery.

I know what you mean about drs not agreeing. I have 2 like that now. Who

do you pick. I guess you just do your research and go with your heart.

Please know that , you and the rest of your family are in my daily

prayers.

Please keep us updated.

hugs to all of you

[Guest guest]

Thanks ,

The one doctor who wants to lower the Pred so quickly is the rheumy the other

wants to do it slow like you did. the rheumy says children are at much

greater risk for the bone problems with pred.( I know ecryone is but they are

still growing) I asked him what about the flaring he said we will jsut have

to up it/ you see he doesnt understand is still in a flare or he

doesn't believe it one or the other!

We may go to Mayo so we can have an opinion and show it to him! Our other

problem is so many rheumy around here will not take until he is 18/

so we only have 2 to choose from one here in my town and the one we use in

< ms about 3 hours away/ I have a friend who workds for a doctor and

they are close friend s he is an internis t and has agreed to take care of

and work close withthe rheumy so we willhave someone here too / for

they emergency nights

like we jsut went through

Phyllis

[Guest guest]

Hey Y'all,

I wanted to ask everyone a question. I was wondering

if PT for fine motor skills is normal for RSS babies.

My 3 1/2 month old is starting PT next week for her

fine motor skills. She's not grabbing for toys or

rolling over yet.

Hope everyone is well.. I have really enjoyed looking

at everyons pictures... I feel like we get to know

each other a bit better that way. I know ya'll meet

for the get together in Chicago... I hope to go one

year.

Chistine

__________________________________

Yahoo! Mail - PC Magazine Editors' Choice 2005

http://mail.yahoo.com

[Guest guest]

I thought OT was for fine motor and PT was for gross motor skill? But it is

normal for our kids to need it.

Mom to Jed (1/22/93)

and Liam (12/12/00)

Orlando Fl

" When you get to your wit's end, you'll find God lives there. "

" Today I will not worry...unless I see animals lining up two by two. "

Family and Breeding Website

[Guest guest]

,

I'm a special ed teacher, so I know a bit about PT, OT, ST and various

other therapies. Besides, even if I did not know about them

professionally, we've done it all with Max.

PT at a 3 1/2 month old's age is appropriate. The gross motor skills

have to be developed before the fine motor skills can be addressed.

At such a young age, OT is not appropriate and would not be

affective. The PT will work on rolling over, grabbing at toys and

toes, muscletone, etc. The OT works more with babies/toddlers who can

grasp objects and who have more dexterity. An infant does not have

that yet. You are on the right track.

Congratulations on getting started so early! Early intervention can

make a world of difference for an baby who is at risk.

Jodi Z

[Guest guest]

,

Tim had to have PT for lifting his head, sitting, and walking because of

his large head size compared to his shoulders. Thankfully, this problem

got much less noticeable over time.

Inga

At 05:46 PM 10/1/2005 -0700, you wrote:

>Hey Y'all,

>

>I wanted to ask everyone a question. I was wondering

>if PT for fine motor skills is normal for RSS babies.

>My 3 1/2 month old is starting PT next week for her

>fine motor skills. She's not grabbing for toys or

>rolling over yet.

>

>Hope everyone is well.. I have really enjoyed looking

>at everyons pictures... I feel like we get to know

>each other a bit better that way. I know ya'll meet

>for the get together in Chicago... I hope to go one

>year.

>

>Chistine

>

>

>

>__________________________________

>Yahoo! Mail - PC Magazine Editors' Choice 2005

>http://mail.yahoo.com

>

>

>

>

>

[Guest guest]

hi christine!!

any early intervention you can get the better!! also you can

exercise the legs and arms yourself at home. thats what i did with

christopher, he was very ridged.

jodie c

> Hey Y'all,

>

> I wanted to ask everyone a question. I was wondering

> if PT for fine motor skills is normal for RSS babies.

> My 3 1/2 month old is starting PT next week for her

> fine motor skills. She's not grabbing for toys or

> rolling over yet.

>

> Hope everyone is well.. I have really enjoyed looking

> at everyons pictures... I feel like we get to know

> each other a bit better that way. I know ya'll meet

> for the get together in Chicago... I hope to go one

> year.

>

> Chistine

>

>

>

> __________________________________

> Yahoo! Mail - PC Magazine Editors' Choice 2005

> http://mail.yahoo.com