Re: Riley update... revised(Liz)

[Guest guest]

Thank you Liz, That means a lot. She is still doing quite well, I just wish I hadn't even tried to take her off of the Vioxx now. I hate to see her in pain again. Thank you for the prayers. Wishing you a pain free new year. I hope the enbrel proves to be a miracle drug for , you and she are always in my thoughts and prayers.

xoxo, Ellie and Riley 5 poly

[Guest guest]

Hi Ellie

Don't feel badly for having taken Riley off the vioxx. As you know, the only way to find out if she can manage without it is to take her off of it. And naturally we all want to get our kids on as little medication as possible as soon as it's safe to try. Believe me, though~~ I understand how you feel. In Dec'98 we finally had off of ALL meds and we were in heaven. Unfortunately, we only had 3 drug free weeks before things began going downhill. In some ways, I think the guilt was greater then than it was at diagnosis. That said, I still firmly believe that we did the right thing and I believe that you did, too.

Hang in there,

Liz

Re: Riley update... revised(Liz)

Thank you Liz, That means a lot. She is still doing quite well, I just wish I hadn't even tried to take her off of the Vioxx now. I hate to see her in pain again. Thank you for the prayers. Wishing you a pain free new year. I hope the enbrel proves to be a miracle drug for , you and she are always in my thoughts and prayers. xoxo, Ellie and Riley 5 poly

[Guest guest]

Hi Liz,

Wow, that must have been a blissful 3 weeks. The week that Riley was off the Vioxx before the pain began again was so great. I thought "Ha! We beat this thing!" You're right, the guilt is almost greater then at diagnosis. It's like, at the beginning, you feel guilty but logically know that there was nothing that you could have done to prevent it. I remember wishing that I had taken Riley out of her preschool earlier, I had been planning on taking her out of the school because we weren't happy with some changes in the staff. Anyway, we stuck it out and then she got a virus that was going around the school and that is when this all started. But of course there was no way I could have known and the next virus probably would have kicked it in anyway. But now, with weaning the meds you feel guilt because you know the meds helped and you make the decision to take them off. Wow, the choices that we as parents have to make, it is overwhelming sometimes isn't it!? Anyway, enough rambling from me, I do feel that I did the right thing, thank you for your vote of confidence, it means a lot. You did the right thing in 98' too. And we will both be doing the right thing the next time....our very best as parents.

Please keep us posted on how things go with the Enbrel, you and are in our prayers.

xoxo, Ellie and Riley 5 poly

[Guest guest]

Hi, Ellie. Just want to chime in about the Vioxx thing. We are now trying to get off of his Celebrex. He has been able to really reduce it - down to 200 mgs a day, from his 800. He tries to go as long as possible without it. He can make about 4 to 5 days before he starts with some stiffness again. So believe me, you are not alone in trying this. takes his MTX still - I figure that is what is controlling the disease for him. Good luck with Riley and I'm sure she will again be able to stop the Vioxx. It really is just trial and error with this disease. Good luck! Michele (15, pauci & spondy)

-----Original Message-----From: skyley8@... [mailto:skyley8@...] Sent: Sunday, January 05, 2003 3:30 PM Subject: Re: Riley update... revised(Liz)Hi Liz, Wow, that must have been a blissful 3 weeks. The week that Riley was off the Vioxx before the pain began again was so great. I thought "Ha! We beat this thing!" You're right, the guilt is almost greater then at diagnosis. It's like, at the beginning, you feel guilty but logically know that there was nothing that you could have done to prevent it. I remember wishing that I had taken Riley out of her preschool earlier, I had been planning on taking her out of the school because we weren't happy with some changes in the staff. Anyway, we stuck it out and then she got a virus that was going around the school and that is when this all started. But of course there was no way I could have known and the next virus probably would have kicked it in anyway. But now, with weaning the meds you feel guilt because you know the meds helped and you make the decision to take them off. Wow, the choices that we as parents have to make, it is overwhelming sometimes isn't it!? Anyway, enough rambling from me, I do feel that I did the right thing, thank you for your vote of confidence, it means a lot. You did the right thing in 98' too. And we will both be doing the right thing the next time....our very best as parents. Please keep us posted on how things go with the Enbrel, you and are in our prayers. xoxo, Ellie and Riley 5 poly

[Guest guest]

Hi Ellie

It was most definitely a blissful 3 weeks! I hope and pray that we someday are able to try life without meds again.

Is Riley feeling any better yet? I hope the pain is short lived.

Are you planning on attending any of the regional AJAO conferences this year? We'll be at the one in Wiliamsburg, VA. loves the conferences and looks forward to them every year. Just to give you an idea of how important they are to her, she has stressed that even if/when a cure is found we still need to have the AJAO conferences because, after all, even with a cure the kids will still have dealt with arthritis.

Hugs to Riley,

Liz

Re: Riley update... revised(Liz)

Hi Liz, Wow, that must have been a blissful 3 weeks. The week that Riley was off the Vioxx before the pain began again was so great. I thought "Ha! We beat this thing!" You're right, the guilt is almost greater then at diagnosis. It's like, at the beginning, you feel guilty but logically know that there was nothing that you could have done to prevent it. I remember wishing that I had taken Riley out of her preschool earlier, I had been planning on taking her out of the school because we weren't happy with some changes in the staff. Anyway, we stuck it out and then she got a virus that was going around the school and that is when this all started. But of course there was no way I could have known and the next virus probably would have kicked it in anyway. But now, with weaning the meds you feel guilt because you know the meds helped and you make the decision to take them off. Wow, the choices that we as parents have to make, it is overwhelming sometimes isn't it!? Anyway, enough rambling from me, I do feel that I did the right thing, thank you for your vote of confidence, it means a lot. You did the right thing in 98' too. And we will both be doing the right thing the next time....our very best as parents. Please keep us posted on how things go with the Enbrel, you and are in our prayers. xoxo, Ellie and Riley 5 poly

[Guest guest]

Hi Ellie

It was most definitely a blissful 3 weeks! I hope and pray that we someday are able to try life without meds again.

Is Riley feeling any better yet? I hope the pain is short lived.

Are you planning on attending any of the regional AJAO conferences this year? We'll be at the one in Wiliamsburg, VA. loves the conferences and looks forward to them every year. Just to give you an idea of how important they are to her, she has stressed that even if/when a cure is found we still need to have the AJAO conferences because, after all, even with a cure the kids will still have dealt with arthritis.

Hugs to Riley,

Liz

Re: Riley update... revised(Liz)

Hi Liz, Wow, that must have been a blissful 3 weeks. The week that Riley was off the Vioxx before the pain began again was so great. I thought "Ha! We beat this thing!" You're right, the guilt is almost greater then at diagnosis. It's like, at the beginning, you feel guilty but logically know that there was nothing that you could have done to prevent it. I remember wishing that I had taken Riley out of her preschool earlier, I had been planning on taking her out of the school because we weren't happy with some changes in the staff. Anyway, we stuck it out and then she got a virus that was going around the school and that is when this all started. But of course there was no way I could have known and the next virus probably would have kicked it in anyway. But now, with weaning the meds you feel guilt because you know the meds helped and you make the decision to take them off. Wow, the choices that we as parents have to make, it is overwhelming sometimes isn't it!? Anyway, enough rambling from me, I do feel that I did the right thing, thank you for your vote of confidence, it means a lot. You did the right thing in 98' too. And we will both be doing the right thing the next time....our very best as parents. Please keep us posted on how things go with the Enbrel, you and are in our prayers. xoxo, Ellie and Riley 5 poly

[Guest guest]

Hi Liz,

Riley is still on the Vioxx daily. The mornings are still stiffer then they were before we took her off but she is definitely having less pain thank God. How is ? What a sweetie she is! I think that is just wonderful that she has gotten so much out of the AJAO conferences. I would just love to go to one. I live in Southern California and I haven't heard of any in my area. If I had tons of money I would just fly all over the place with Riley and we would attend them all....lol, although I don't think my husband would be to thrilled with the absentee wife thing..lol. I do read with envy the posts after a conference, however. Maybe one of these days. I would love for Riley to meet some kids who have gone through this, and I would love to meet some of the wonderful people that I have met here in person. I am thinking that when she is old enough I might let her go to Camp Esperanza. Her rheumy is a counselor out there. He is such a great guy. We are very lucky to have him. Hugs to you and .

xoxo, Ellie and Riley 5 poly

[Guest guest]

Hi Ellie,

So nice to get on and see messages from you : ) When I spoke with Kim by phone recently, she told me that Riley was in remission. I guess I really did miss quite a bit that has been going on here with our JRA kids, while our computer was out being serviced. What you said about flying all over to attend all the conferences ... that's exactly what Josh said he'd like to do, after attending the Summer 2002 AJAO conference in MN. And that was the first and only one he'd been to! He really did enjoy himself and seemed to get a lot out of the programs and activities. Wonderful to meet others who share and can relate to their life experiences. He loves the annual weekend JRA Camp on Oahu, too. I bet Riley would have a great time at Camp Esperanza. Are parents and other family members invited to attend too or is it just for the kids? Here, Josh goes by himself. I worried when he was younger about flying alone and not knowing others in attendance but the staff and volunteers seem to have everything in place. He's in good hands. Plus, by now, he's had several years experience. He looks forward to it all year long.

Aloha,

Georgina

----- Original Message -----

From: skyley8@...

Hi Liz, Riley is still on the Vioxx daily. The mornings are still stiffer then they were before we took her off but she is definitely having less pain thank God. How is ? What a sweetie she is! I think that is just wonderful that she has gotten so much out of the AJAO conferences. I would just love to go to one. I live in Southern California and I haven't heard of any in my area. If I had tons of money I would just fly all over the place with Riley and we would attend them all....lol, although I don't think my husband would be to thrilled with the absentee wife thing..lol. I do read with envy the posts after a conference, however. Maybe one of these days. I would love for Riley to meet some kids who have gone through this, and I would love to meet some of the wonderful people that I have met here in person. I am thinking that when she is old enough I might let her go to Camp Esperanza. Her rheumy is a counselor out there. He is such a great guy. We are very lucky to have him. Hugs to you and . xoxo, Ellie and Riley 5 poly