's rheumy appt today

[Guest guest]

Kathy - glad the visit was productive although not quite what you wanted to

hear - (wish the news would have been better). Your husband is a good dad

for wanting to help with the treatment process. Ken would probably do more but

I am such a control freak. Although I think I will suggest he do more in

case I have to be gone or something. Good luck with the shot this weekend.

Did your doc give you folic acid? Gotta get Hunter's chicken out of stove -

take care Sandi

[Guest guest]

had her rheumy appointment today. We had lots of questions for her dr.

During her exam, he said that he's not happy at all with how her ankles are

responding (rather not responding) to the Naprosyn. He is going to up the

Naprosyn to 5 ml and 4 ml daily doses. He also explained to us that his goal is

for her to have 51 good weeks a year. I thought that was rather optimistic, but

he really feels we should expect the same. Based on that, and the fact that he

doesn't feel the Naprosyn is going to do much more for her beyond where she is

now, he recommended Methotrexate. We discussed with him the risks and benefits

of the oral, pill, and injection and have decided to go with the weekly

injection. My husband actually volunteered to do it when the dr. asked. So

we both were trained in how to administer the injection, but we decided Mark

would actually do the shot, and I can keep still. Her methotrexate dose

is .2 ml. I'll still be the one to give her the Naprosyn and Zantac.

The rheumy also wrote us a script for physical therapy for at least her right

knee, as he noticed that her range of motion is still limited despite the fact

that the inflammation is way down. He said that the physical therapist should

also pay attention to her other joints, but only if they're not too inflammed.

She needs to have more blood work done this week, as she's probably due anyway,

then we'll have blood work done every 6 weeks while she's on the Methotrexate.

He told us what to look out for with the Methotrexate and will see us in another

2 months.

She did fairly well with the visit. She used to scream from the time we got

into the exam room until she left, so only one of us would be in talking to the

dr. after and before the exam while the other stayed with in the waiting

room. Today, she still screamed while they were messing with her, but she

stayed in the exam room the entire time, in her stroller with her bottle and she

was fine. We'll probably start the Methotrexate this weekend, so we can get her

on a schedule with it on a day that we're not so crazy and rushed.

Take care and we'll update you on her progress!

Kathy

mom to , 21 months, poly

and Luke, 4-1/2

[Guest guest]

Kathy,

Sorry to hear the naprosyn wasn't doing the trick on it's own. I

think the mtx injections are working better for Madi than the oral

was-glad to see you opted for that right off the bat. My husband

does the injections also-I get to hold her down. It really works out

quite well, we tell her it's time for her shot and she lays down and

takes it. We had the ped's nurse do the first couple ones while we

were learning and she hated it, but she doesn't fuss much with us-I

think it's a trust thing. Glad to hear was better at the dr.

office too-that can really be nerve racking. I'm with Sandi on the

folic acid-Madi takes 1mg daily to counter-balance the side effects

of the mtx, it definitely helps. Glad to see you are still on the

board and thanks for updating.

Tracey and Madi (16mo systemic)

-

>

> had her rheumy appointment today. We had lots of questions

for her dr. During her exam, he said that he's not happy at all with

how her ankles are responding (rather not responding) to the

Naprosyn. He is going to up the Naprosyn to 5 ml and 4 ml daily

doses. He also explained to us that his goal is for her to have 51

good weeks a year. I thought that was rather optimistic, but he

really feels we should expect the same. Based on that, and the fact

that he doesn't feel the Naprosyn is going to do much more for her

beyond where she is now, he recommended Methotrexate. We discussed

with him the risks and benefits of the oral, pill, and injection and

have decided to go with the weekly injection. My husband actually

volunteered to do it when the dr. asked. So we both were trained in

how to administer the injection, but we decided Mark would actually

do the shot, and I can keep still. Her methotrexate dose

is .2 ml. I'll still be the one to give her the Naprosyn and Zantac.

>

> The rheumy also wrote us a script for physical therapy for at least

her right knee, as he noticed that her range of motion is still

limited despite the fact that the inflammation is way down. He said

that the physical therapist should also pay attention to her other

joints, but only if they're not too inflammed. She needs to have

more blood work done this week, as she's probably due anyway, then

we'll have blood work done every 6 weeks while she's on the

Methotrexate.

>

> He told us what to look out for with the Methotrexate and will see

us in another 2 months.

>

> She did fairly well with the visit. She used to scream from the

time we got into the exam room until she left, so only one of us

would be in talking to the dr. after and before the exam while the

other stayed with in the waiting room. Today, she still

screamed while they were messing with her, but she stayed in the exam

room the entire time, in her stroller with her bottle and she was

fine. We'll probably start the Methotrexate this weekend, so we can

get her on a schedule with it on a day that we're not so crazy and

rushed.

>

> Take care and we'll update you on her progress!

> Kathy

> mom to , 21 months, poly

> and Luke, 4-1/2

>

[Guest guest]

Yep...still here, but so darn busy I can't see straight!

We knew this was coming, just didn't know when....I can honestly say

that if we hadn't attended the conference in Atlanta, there would have

been very little chance that hubby would have gone along with this (the

methotrexate). He would have had serious issues with the medication.

However, after seeing so many kids doing so well on it, he was convinced

and even was the one who brought it up in our conversations with the

rheumy. Tracey, how is Madi doing?

Take care,

Kathy

_____

From: [mailto: ] On

Behalf Of ztaimw

Sent: Wednesday, July 26, 2006 8:12 PM

Subject: Re: 's rheumy appt today

Kathy,

Sorry to hear the naprosyn wasn't doing the trick on it's own. I

think the mtx injections are working better for Madi than the oral

was-glad to see you opted for that right off the bat. My husband

does the injections also-I get to hold her down. It really works out

quite well, we tell her it's time for her shot and she lays down and

takes it. We had the ped's nurse do the first couple ones while we

were learning and she hated it, but she doesn't fuss much with us-I

think it's a trust thing. Glad to hear was better at the dr.

office too-that can really be nerve racking. I'm with Sandi on the

folic acid-Madi takes 1mg daily to counter-balance the side effects

of the mtx, it definitely helps. Glad to see you are still on the

board and thanks for updating.

Tracey and Madi (16mo systemic)

-

>

> had her rheumy appointment today. We had lots of questions

for her dr. During her exam, he said that he's not happy at all with

how her ankles are responding (rather not responding) to the

Naprosyn. He is going to up the Naprosyn to 5 ml and 4 ml daily

doses. He also explained to us that his goal is for her to have 51

good weeks a year. I thought that was rather optimistic, but he

really feels we should expect the same. Based on that, and the fact

that he doesn't feel the Naprosyn is going to do much more for her

beyond where she is now, he recommended Methotrexate. We discussed

with him the risks and benefits of the oral, pill, and injection and

have decided to go with the weekly injection. My husband actually

volunteered to do it when the dr. asked. So we both were trained in

how to administer the injection, but we decided Mark would actually

do the shot, and I can keep still. Her methotrexate dose

is .2 ml. I'll still be the one to give her the Naprosyn and Zantac.

>

> The rheumy also wrote us a script for physical therapy for at least

her right knee, as he noticed that her range of motion is still

limited despite the fact that the inflammation is way down. He said

that the physical therapist should also pay attention to her other

joints, but only if they're not too inflammed. She needs to have

more blood work done this week, as she's probably due anyway, then

we'll have blood work done every 6 weeks while she's on the

Methotrexate.

>

> He told us what to look out for with the Methotrexate and will see

us in another 2 months.

>

> She did fairly well with the visit. She used to scream from the

time we got into the exam room until she left, so only one of us

would be in talking to the dr. after and before the exam while the

other stayed with in the waiting room. Today, she still

screamed while they were messing with her, but she stayed in the exam

room the entire time, in her stroller with her bottle and she was

fine. We'll probably start the Methotrexate this weekend, so we can

get her on a schedule with it on a day that we're not so crazy and

rushed.

>

> Take care and we'll update you on her progress!

> Kathy

> mom to , 21 months, poly

> and Luke, 4-1/2

>