Re: Jaye update

[Guest guest]

YAY....great news!

& , 7, poly...SPD...Nystagmus

Sent from my iPhone

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[Guest guest]

Fabulous news!!! Woohoo!!!!! (n,22,systemic)

Sent from my iPhone

On Apr 25, 2011, at 5:49 PM, veristroud@... wrote:

>

>

> We had our visit to the Rheumy and Opth today. Good reports from both. The

Opth appointment was first and she said due to some new findings of studies we

will have to do some tests less often. Jaye has never has a problem with

inflamation in her eyes, but due to being on plaquinil she has to have tests

done regularly to make sure there is not any damage done as well as to watch for

the inflamation. Our Opth is very good and if she errs it is on the side of

caution. We see her every six months and will continue to see her that often.

She said that we will only do the Field Vision Test once a year now. Of course

she has only another year about to see Jaye before they kids us out of

the Pediatric into the Adult world of doctors. She also said that there is a new

test that can be done that is supposed to find issues earlier then the Field

Vision Test and other tests we have been doing. It is called OCT. I did not

write down what it is because she wrote it down and told me to ask to be

scheduled for it when we schedule our next appt in six months. They are supposed

to be getting the new machine to start testing soon, they just do not know when

they will get it. So since I did not write out what OCT means I can not even

research it. I tried google and webmd but all I can come up with is 24 million

sites to look at and most of them start out with the date being in October and

having nothing to do with a test. Jaye does need a new script for her

glasses so tomorrow we will go to Walmart to see what they have available that

she likes.

>

> After the Opth appt we had a nice visit with the Rheumy and that report was

very good as well. He did not find any swelling or fluid on any joints.

has been sick with a virus for over two weeks and has had some aches and pains

but I think it is more related to the virus then anything else. He did suggest

we start to wein her off of the methotrexate so we will. He gave us the ok that

if we sense it is not a good thing to drop the dosage we can go right back up to

the full dose and let him know. I will be optimistic and think that this is a

positive thing and that it is going to be ok. I know that alot of kids are on

just Enbrel and do not need all the other arthritis meds to go along. I pray

that we can get her off of some of hers with out seeing a flare. Tomorrow we

will go to the clinic here in town and get her labs drawn and then fax the

results to him. We were ready to come home after we saw him and they can not

draw labs in their new clinc so we would have had to go back to Children's Mercy

and sit and wait. So he gave us the orders and I will have her come to the

clinic after school tomorrow and I can get her in without much of a wait. This

way we go ahead and fax all her results to the neurologist as well as her Ped

gets them. I like making sure everyone is on top of what is going on with my

girl. One of the benefits of working in the clinic where the Ped is located.

>

> Veri & Jaye 17 poly

>

>

[Guest guest]

Glad to hear everything is going so well!!! With they just got rid of the

Plaquenil first and foremost before even tapering the pred or NSAIDS. MTX is

such a better drug that your ped rheumy has me confused.Again I am SO HAPPY for

the way things have turned around for Jaye.

Hugs and prayers toward her first medicated remission.

Becki and 12 Systemic Onset

________________________________

From: " veristroud@... " <veristroud@...>

Sent: Mon, April 25, 2011 7:49:17 PM

Subject: Jaye update

We had our visit to the Rheumy and Opth today. Good reports from both. The Opth

appointment was first and she said due to some new findings of studies we will

have to do some tests less often. Jaye has never has a problem with

inflamation in her eyes, but due to being on plaquinil she has to have tests

done regularly to make sure there is not any damage done as well as to watch for

the inflamation. Our Opth is very good and if she errs it is on the side of

caution. We see her every six months and will continue to see her that often.

She said that we will only do the Field Vision Test once a year now. Of course

she has only another year about to see Jaye before they kids us out of

the Pediatric into the Adult world of doctors. She also said that there is a

new test that can be done that is supposed to find issues earlier then the Field

Vision Test and other tests we have been doing. It is called OCT. I did not

write down what it is because she wrote it down and told me to ask to be

scheduled for it when we schedule our next appt in six months. They are supposed

to be getting the new machine to start testing soon, they just do not know when

they will get it. So since I did not write out what OCT means I can not even

research it. I tried google and webmd but all I can come up with is 24 million

sites to look at and most of them start out with the date being in October and

having nothing to do with a test. Jaye does need a new script for her

glasses so tomorrow we will go to Walmart to see what they have available that

she likes.

After the Opth appt we had a nice visit with the Rheumy and that report was very

good as well. He did not find any swelling or fluid on any joints. has

been sick with a virus for over two weeks and has had some aches and pains but I

think it is more related to the virus then anything else. He did suggest we

start to wein her off of the methotrexate so we will. He gave us the ok that if

we sense it is not a good thing to drop the dosage we can go right back up to

the full dose and let him know. I will be optimistic and think that this is a

positive thing and that it is going to be ok. I know that alot of kids are on

just Enbrel and do not need all the other arthritis meds to go along. I pray

that we can get her off of some of hers with out seeing a flare. Tomorrow we

will go to the clinic here in town and get her labs drawn and then fax the

results to him. We were ready to come home after we saw him and they can not

draw labs in their new clinc so we would have had to go back to Children's Mercy

and sit and wait. So he gave us the orders and I will have her come to the

clinic after school tomorrow and I can get her in without much of a wait. This

way we go ahead and fax all her results to the neurologist as well as her Ped

gets them. I like making sure everyone is on top of what is going on with my

girl. One of the benefits of working in the clinic where the Ped is located.

Veri & Jaye 17 poly

[Guest guest]

That is great I will pray she is able to wean off it!

Amy mom to Avery 17 systemic

________________________________

From: " veristroud@... " <veristroud@...>

Sent: Monday, April 25, 2011 7:49 PM

Subject: Re: Jaye update

 

We had our visit to the Rheumy and Opth today. Good reports from both. The Opth

appointment was first and she said due to some new findings of studies we will

have to do some tests less often. Jaye has never has a problem with

inflamation in her eyes, but due to being on plaquinil she has to have tests

done regularly to make sure there is not any damage done as well as to watch for

the inflamation. Our Opth is very good and if she errs it is on the side of

caution. We see her every six months and will continue to see her that often.

She said that we will only do the Field Vision Test once a year now. Of course

she has only another year about to see Jaye before they kids us out of

the Pediatric into the Adult world of doctors. She also said that there is a

new test that can be done that is supposed to find issues earlier then the Field

Vision Test and other tests we have been doing. It is called OCT. I did not

write down what it is

because she wrote it down and told me to ask to be scheduled for it when we

schedule our next appt in six months. They are supposed to be getting the new

machine to start testing soon, they just do not know when they will get it. So

since I did not write out what OCT means I can not even research it. I tried

google and webmd but all I can come up with is 24 million sites to look at and

most of them start out with the date being in October and having nothing to do

with a test. Jaye does need a new script for her glasses so tomorrow we

will go to Walmart to see what they have available that she likes.

After the Opth appt we had a nice visit with the Rheumy and that report was very

good as well. He did not find any swelling or fluid on any joints. has

been sick with a virus for over two weeks and has had some aches and pains but I

think it is more related to the virus then anything else. He did suggest we

start to wein her off of the methotrexate so we will. He gave us the ok that if

we sense it is not a good thing to drop the dosage we can go right back up to

the full dose and let him know. I will be optimistic and think that this is a

positive thing and that it is going to be ok. I know that alot of kids are on

just Enbrel and do not need all the other arthritis meds to go along. I pray

that we can get her off of some of hers with out seeing a flare. Tomorrow we

will go to the clinic here in town and get her labs drawn and then fax the

results to him. We were ready to come home after we saw him and they can not

draw labs in their new

clinc so we would have had to go back to Children's Mercy and sit and wait. So

he gave us the orders and I will have her come to the clinic after school

tomorrow and I can get her in without much of a wait. This way we go ahead and

fax all her results to the neurologist as well as her Ped gets them. I like

making sure everyone is on top of what is going on with my girl. One of the

benefits of working in the clinic where the Ped is located.

Veri & Jaye 17 poly

[Guest guest]

Glad to read the good news! I hope the reducing of the mtx goes well. One less

med is always a good thing! Michele ( 23, spondy)

From: [mailto: ] On Behalf Of

veristroud@...

Sent: Monday, April 25, 2011 7:49 PM

Subject: Jaye update

We had our visit to the Rheumy and Opth today. Good reports from both. The Opth

appointment was first and she said due to some new findings of studies we will

have to do some tests less often. Jaye has never has a problem with

inflamation in her eyes, but due to being on plaquinil she has to have tests

done regularly to make sure there is not any damage done as well as to watch for

the inflamation. Our Opth is very good and if she errs it is on the side of

caution. We see her every six months and will continue to see her that often.

She said that we will only do the Field Vision Test once a year now. Of course

she has only another year about to see Jaye before they kids us out of

the Pediatric into the Adult world of doctors. She also said that there is a new

test that can be done that is supposed to find issues earlier then the Field

Vision Test and other tests we have been doing. It is called OCT. I did not

write down what it is because she wrote it down and told me to ask to be

scheduled for it when we schedule our next appt in six months. They are supposed

to be getting the new machine to start testing soon, they just do not know when

they will get it. So since I did not write out what OCT means I can not even

research it. I tried google and webmd but all I can come up with is 24 million

sites to look at and most of them start out with the date being in October and

having nothing to do with a test. Jaye does need a new script for her

glasses so tomorrow we will go to Walmart to see what they have available that

she likes.

After the Opth appt we had a nice visit with the Rheumy and that report was very

good as well. He did not find any swelling or fluid on any joints. has

been sick with a virus for over two weeks and has had some aches and pains but I

think it is more related to the virus then anything else. He did suggest we

start to wein her off of the methotrexate so we will. He gave us the ok that if

we sense it is not a good thing to drop the dosage we can go right back up to

the full dose and let him know. I will be optimistic and think that this is a

positive thing and that it is going to be ok. I know that alot of kids are on

just Enbrel and do not need all the other arthritis meds to go along. I pray

that we can get her off of some of hers with out seeing a flare. Tomorrow we

will go to the clinic here in town and get her labs drawn and then fax the

results to him. We were ready to come home after we saw him and they can not

draw labs in their new clinc so we would have had to go back to Children's Mercy

and sit and wait. So he gave us the orders and I will have her come to the

clinic after school tomorrow and I can get her in without much of a wait. This

way we go ahead and fax all her results to the neurologist as well as her Ped

gets them. I like making sure everyone is on top of what is going on with my

girl. One of the benefits of working in the clinic where the Ped is located.

Veri & Jaye 17 poly

[Guest guest]

Veri, such great news!! We are weaning Methotrexate too, with the goal of only

being on Kineret. It all moves so fast for me sometimes - first adding in all

the meds, and now trying to take them out one at a time. But, I'm with you on

being optimistic that she'll be able to wean the MTX. I hope it goes well.

nn (, 10, systemic)

>

>

>

> We had our visit to the Rheumy and Opth today. Good reports from both. The

Opth appointment was first and she said due to some new findings of studies we

will have to do some tests less often. Jaye has never has a problem with

inflamation in her eyes, but due to being on plaquinil she has to have tests

done regularly to make sure there is not any damage done as well as to watch for

the inflamation. Our Opth is very good and if she errs it is on the side of

caution. We see her every six months and will continue to see her that often.

She said that we will only do the Field Vision Test once a year now. Of course

she has only another year about to see Jaye before they kids us out of

the Pediatric into the Adult world of doctors. She also said that there is a

new test that can be done that is supposed to find issues earlier then the Field

Vision Test and other tests we have been doing. It is called OCT. I did not

write down what it is because she wrote it down and told me to ask to be

scheduled for it when we schedule our next appt in six months. They are supposed

to be getting the new machine to start testing soon, they just do not know when

they will get it. So since I did not write out what OCT means I can not even

research it. I tried google and webmd but all I can come up with is 24 million

sites to look at and most of them start out with the date being in October and

having nothing to do with a test. Jaye does need a new script for her

glasses so tomorrow we will go to Walmart to see what they have available that

she likes.

>

> After the Opth appt we had a nice visit with the Rheumy and that report was

very good as well. He did not find any swelling or fluid on any joints.

has been sick with a virus for over two weeks and has had some aches and pains

but I think it is more related to the virus then anything else. He did suggest

we start to wein her off of the methotrexate so we will. He gave us the ok that

if we sense it is not a good thing to drop the dosage we can go right back up to

the full dose and let him know. I will be optimistic and think that this is a

positive thing and that it is going to be ok. I know that alot of kids are on

just Enbrel and do not need all the other arthritis meds to go along. I pray

that we can get her off of some of hers with out seeing a flare. Tomorrow we

will go to the clinic here in town and get her labs drawn and then fax the

results to him. We were ready to come home after we saw him and they can not

draw labs in their new clinc so we would have had to go back to Children's Mercy

and sit and wait. So he gave us the orders and I will have her come to the

clinic after school tomorrow and I can get her in without much of a wait. This

way we go ahead and fax all her results to the neurologist as well as her Ped

gets them. I like making sure everyone is on top of what is going on with my

girl. One of the benefits of working in the clinic where the Ped is located.

>

> Veri & Jaye 17 poly

>

>

>

>

>