Guest guest Posted September 21, 2004 Report Share Posted September 21, 2004 Hi Deb: I know your hope was that it was a mistake, I am sorry it wasn't. We have all experienced many of the feelings that I am sure you are now experiencing. Please ask questions, vent, share happy stories, etc. We are all here for you and yours. You will learn a lot very quickly and then, perhaps, see things in a different light. When you get her labs, ask for copies of them to keep in your file at home for her. When you see those nasty little asterisks next to some of the labs you will have questions. There are a lot of people here that can explain them or offer sites to explain them. When Sami gets repeat labs and the asterisks are less it will be a great feeling for you. I hope and pray that the meds will bring quick relief to little Sami. You will notice a difference and know you are on the right track. Take care. Patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2004 Report Share Posted September 21, 2004 Who is Sami's doctor at LPCH? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2004 Report Share Posted September 21, 2004 Grandma Deb, Although it may not seem like good news to you right now, a diagnosis is actually a good thing. It is far more unsettling to not know what is going on with you child/grandchild. At least there are clear paths to follow and more information is available every day about this disease. The shock is strong, but I believe early education can take away the fear of the unknown. I've recently posted a bunch of places to go to on the web for more info about the disease. If you'd like me to repeat it, just let me know. Start out with www.arthritis.org. We're here for you. Stacia and Hunter 8 systemic, iritis > Yesterday was our first visit with the pediatric rheumatology department at LPCH. It was a very long day. Sami's initial diagnosis is polyarticular JRA. She has three meds Oraped, Zantac and Naproxen. They said once they get the labs and x-rays back, they may add another one. At this point, they see evidence of JRA in every joint except for her spine and hips. > > We go back in a month. Right now we are sort of numb. We were hoping that perhaps this was a mistake. It seems it is not a mistake. > > Gramma Deb (Sami, 2, poly) > California > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2004 Report Share Posted September 21, 2004 Sorry to hear of Sami's JRA, yet having a diagnosis is a good thing that will allow her to be on the right meds and getting the right care. I well remember the numbness. When I called for my son's first blood work results, I did not really understand that he had JRA. The rheumy talked on the phone with me until she was sure I understood. She said, " Didn't I tell you this in the office? " and I said " Yes, but I didn't think it was true. I thought the blood work would prove something else. " Which, of course, it did not. Good luck to you and Sami and feel free to vent here, as that is what we are here for. Support! Michele ( 17, pauci & spondy) Sami's Diagnosis Yesterday was our first visit with the pediatric rheumatology department at LPCH. It was a very long day. Sami's initial diagnosis is polyarticular JRA. She has three meds Oraped, Zantac and Naproxen. They said once they get the labs and x-rays back, they may add another one. At this point, they see evidence of JRA in every joint except for her spine and hips. We go back in a month. Right now we are sort of numb. We were hoping that perhaps this was a mistake. It seems it is not a mistake. Gramma Deb (Sami, 2, poly) California Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2004 Report Share Posted September 21, 2004 Dear Deb, I remember feeling like I was struck by lightning when n was diagnosed. We all know and understand what you are feeling. We have all been there. That is what is so great about this group. No one can really understand what you are feeling, unless they have walked in your shoes, and we all have. It is great that your Sami was diagnosed so fast. That is a blessing, it truly is. The medicines now are fantastic for this disease. I hope she is put on a dmard quickly to stop the progression of the disease. It might not make you feel any better, but I will tell you a story about when n was diagnosed. She has only been hospitalized once and that was at diagnosis. My husband was in the elevator and saw the woman that we bought our new Volvo from, and he asked what she was doing at the Children's Hospital. Her daughter was in the hospital too. Her daughter was 5 at the time, and our daughter was 10. She proceeded to tell him that her only daughter had a rare cancer and was in for chemo. Her daughter lived another two years, and then tragically passed away. So when I am feeling sorry for myself or have a chip on my shoulder saying " Why me? " , my husband reminds me that we still have n. That doesn't make the diagnosis any easier, but we are here for you. I always say that this disease has made me a much better person, but I wish God had done it a different way. It doesn't mean that you might not cry everyday for Sami. But the delight you will feel when she rides her bike , runs across the yard pulling the dog's tail, go ice skating, or playing ball will be immeasurable. You will not take anything for granted, and people will think you are crazy when you have tears in your eyes at those moments. We won't think you are crazy, we know that you are thrilled. (n, 15, systemic) Sami's Diagnosis > Yesterday was our first visit with the pediatric rheumatology department at LPCH. It was a very long day. Sami's initial diagnosis is polyarticular JRA. She has three meds Oraped, Zantac and Naproxen. They said once they get the labs and x-rays back, they may add another one. At this point, they see evidence of JRA in every joint except for her spine and hips. > > We go back in a month. Right now we are sort of numb. We were hoping that perhaps this was a mistake. It seems it is not a mistake. > > Gramma Deb (Sami, 2, poly) > California > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2004 Report Share Posted September 21, 2004 Well put, . Re: Sami's Diagnosis Dear Deb, I remember feeling like I was struck by lightning when n was diagnosed. We all know and understand what you are feeling. We have all been there. That is what is so great about this group. No one can really understand what you are feeling, unless they have walked in your shoes, and we all have. It is great that your Sami was diagnosed so fast. That is a blessing, it truly is. The medicines now are fantastic for this disease. I hope she is put on a dmard quickly to stop the progression of the disease. It might not make you feel any better, but I will tell you a story about when n was diagnosed. She has only been hospitalized once and that was at diagnosis. My husband was in the elevator and saw the woman that we bought our new Volvo from, and he asked what she was doing at the Children's Hospital. Her daughter was in the hospital too. Her daughter was 5 at the time, and our daughter was 10. She proceeded to tell him that her only daughter had a rare cancer and was in for chemo. Her daughter lived another two years, and then tragically passed away. So when I am feeling sorry for myself or have a chip on my shoulder saying " Why me? " , my husband reminds me that we still have n. That doesn't make the diagnosis any easier, but we are here for you. I always say that this disease has made me a much better person, but I wish God had done it a different way. It doesn't mean that you might not cry everyday for Sami. But the delight you will feel when she rides her bike , runs across the yard pulling the dog's tail, go ice skating, or playing ball will be immeasurable. You will not take anything for granted, and people will think you are crazy when you have tears in your eyes at those moments. We won't think you are crazy, we know that you are thrilled. (n, 15, systemic) Sami's Diagnosis > Yesterday was our first visit with the pediatric rheumatology > department at LPCH. It was a very long day. Sami's initial diagnosis is polyarticular JRA. She has three meds Oraped, Zantac and Naproxen. They said once they get the labs and x-rays back, they may add another one. At this point, they see evidence of JRA in every joint except for her spine and hips. > > We go back in a month. Right now we are sort of numb. We were hoping that perhaps this was a mistake. It seems it is not a mistake. > > Gramma Deb (Sami, 2, poly) > California > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2004 Report Share Posted September 21, 2004 Wow . I got chills from reading that! Alia and Caroline, age 2, poly and uveitis Re: Sami's Diagnosis Dear Deb, I remember feeling like I was struck by lightning when n was diagnosed. We all know and understand what you are feeling. We have all been there. That is what is so great about this group. No one can really understand what you are feeling, unless they have walked in your shoes, and we all have. It is great that your Sami was diagnosed so fast. That is a blessing, it truly is. The medicines now are fantastic for this disease. I hope she is put on a dmard quickly to stop the progression of the disease. It might not make you feel any better, but I will tell you a story about when n was diagnosed. She has only been hospitalized once and that was at diagnosis. My husband was in the elevator and saw the woman that we bought our new Volvo from, and he asked what she was doing at the Children's Hospital. Her daughter was in the hospital too. Her daughter was 5 at the time, and our daughter was 10. She proceeded to tell him that her only daughter had a rare cancer and was in for chemo. Her daughter lived another two years, and then tragically passed away. So when I am feeling sorry for myself or have a chip on my shoulder saying " Why me? " , my husband reminds me that we still have n. That doesn't make the diagnosis any easier, but we are here for you. I always say that this disease has made me a much better person, but I wish God had done it a different way. It doesn't mean that you might not cry everyday for Sami. But the delight you will feel when she rides her bike , runs across the yard pulling the dog's tail, go ice skating, or playing ball will be immeasurable. You will not take anything for granted, and people will think you are crazy when you have tears in your eyes at those moments. We won't think you are crazy, we know that you are thrilled. (n, 15, systemic) Sami's Diagnosis > Yesterday was our first visit with the pediatric rheumatology department at LPCH. It was a very long day. Sami's initial diagnosis is polyarticular JRA. She has three meds Oraped, Zantac and Naproxen. They said once they get the labs and x-rays back, they may add another one. At this point, they see evidence of JRA in every joint except for her spine and hips. > > We go back in a month. Right now we are sort of numb. We were hoping that perhaps this was a mistake. It seems it is not a mistake. > > Gramma Deb (Sami, 2, poly) > California > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2004 Report Share Posted September 21, 2004 Thanks for the various words of support. Everyone has such touching stories. I have never once thought, " why me? " I think it is because we took in our grandchildren and fought so hard for them that every day of this time we have together is special. I just hope and pray we get to keep them long enough to make a difference with their various challenges. Both children now have confirmed medical challenges and both will most likely have them the rest of their lives. My hope is that they are comfortable, achieve and DO whatever it is that they want to do in life. I know, at times, it will be frustrating for them. In Sami's case, I kept hoping that everyone's suspicions were wrong and that it was something more temporary. However, I am relieved to know " what " this is and feast on every story (positive and disappointing) that you all share as treasures to build upon in the future....where ever it leads us. Gramma Deb (Sami, 2, poly) California Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2004 Report Share Posted September 21, 2004 -HUGS grandma Deb.. it is so overwelming in the begining, even when you kinda already know what they are going to say. It still hits you like a ton of bricks. Hang in there, it will get better. I will say though that i was very suprised they didnt start Sami on MTX seeing as how all her joints are involved. I hope once the labs are back this is what they are planning. HUgs Helen and (7,systemic) -- In , " Gramma Lala " <gramma_lala@h...> wrote: > Yesterday was our first visit with the pediatric rheumatology department at LPCH. It was a very long day. Sami's initial diagnosis is polyarticular JRA. She has three meds Oraped, Zantac and Naproxen. They said once they get the labs and x-rays back, they may add another one. At this point, they see evidence of JRA in every joint except for her spine and hips. > > We go back in a month. Right now we are sort of numb. We were hoping that perhaps this was a mistake. It seems it is not a mistake. > > Gramma Deb (Sami, 2, poly) > California > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2004 Report Share Posted September 21, 2004 Well Sammi does have the best doctor! She is amazing at treating poly kids.. shes just an amazing doctor.. I know the diagnosis is always hard but it gets eaiser. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2004 Report Share Posted September 21, 2004 Dr. Sandborg Gramma Deb (Sami, 2, poly) California Re: Sami's Diagnosis Who is Sami's doctor at LPCH? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2004 Report Share Posted September 21, 2004 Thanks Helen. They said they may add it after they review the labs and x-rays. Actually, they said, " expect a call from us in a couple of days. " Sami is not a medicine taker and today has been an interesting one. I stayed home from work to make sure there are no negative reactions, etc. Gramma Deb (Sami, 2, poly) California Re: Sami's Diagnosis -HUGS grandma Deb.. it is so overwelming in the begining, even when you kinda already know what they are going to say. It still hits you like a ton of bricks. Hang in there, it will get better. I will say though that i was very suprised they didnt start Sami on MTX seeing as how all her joints are involved. I hope once the labs are back this is what they are planning. HUgs Helen and (7,systemic) -- In , " Gramma Lala " <gramma_lala@h...> wrote: > Yesterday was our first visit with the pediatric rheumatology department at LPCH. It was a very long day. Sami's initial diagnosis is polyarticular JRA. She has three meds Oraped, Zantac and Naproxen. They said once they get the labs and x-rays back, they may add another one. At this point, they see evidence of JRA in every joint except for her spine and hips. > > We go back in a month. Right now we are sort of numb. We were hoping that perhaps this was a mistake. It seems it is not a mistake. > > Gramma Deb (Sami, 2, poly) > California > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2004 Report Share Posted September 21, 2004 Gramma Deb, Did you like her? (except about the part when she said Sami has JRA) I live in Boise ID and met her in Wash. DC in June when we were out advocating for the Arthritis Prevention, Control and Cure Act of 2004. She seems very caring, very involved and highly intelligent. She's a very active member in CARRA (the rheumy. research network). She was also the keynote speaker at the AJAO Conference in July. She seems like she has an awesome bedside manner as well as all the smart stuff upstairs (hard to find them both in the same doc.). She's on a pedastal for me and she's never even examined my son. I know you're in good hands. Stacia and Hunter, systemic, 8 , iritis > Dr. Sandborg > > Gramma Deb (Sami, 2, poly) > California > Re: Sami's Diagnosis > > > Who is Sami's doctor at LPCH? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2004 Report Share Posted September 21, 2004 The doctor is wonderful. She seems like she will be great to work with. We only got a short time with her because we were squeezed in. I am hoping that next time she will get to take a few more minutes with us. It could have been she spent a long time but we have been filled with so many questions that I would have liked more. I would have liked to better understand the treatment process. She did give us her card and I thought I would call her next week with my questions. 4 weeks is a long time for them to fester.... I am hoping they call us with the lab results. I'll have them fax them to the house so I can examine them (with all of you) ::chuckles:: Gramma Deb (Sami, 2, poly) California Re: Sami's Diagnosis > > > Who is Sami's doctor at LPCH? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2004 Report Share Posted September 22, 2004 Gramma Deb. You are obviously an amazing person and a very loving grandmother! Your grandkids are soo lucky to have you. We all know the stages that you are going through, the denial, then the questions of why and how, and eventually acceptance. That last part is the hardest. Caroline was diagnosed in January and I still find myself wandering back to the why and how so often. What could we have done differently? How did we miss the signs?etc. etc. What I have learned is that one: nothing we did or didn't do caused this. Two: that we have a wonderful girl with an amazing spirit who is going to rise above this and become an even more amazing adult. And lastly, that we are going to beat this! Arthur is not going to get the best of this family and we are going to fight on until we find a cure! Stay strong. We are keeping you in our prayers! Alia and Caroline, age 2, poly and uveitis Re: Sami's Diagnosis Thanks for the various words of support. Everyone has such touching stories. I have never once thought, " why me? " I think it is because we took in our grandchildren and fought so hard for them that every day of this time we have together is special. I just hope and pray we get to keep them long enough to make a difference with their various challenges. Both children now have confirmed medical challenges and both will most likely have them the rest of their lives. My hope is that they are comfortable, achieve and DO whatever it is that they want to do in life. I know, at times, it will be frustrating for them. In Sami's case, I kept hoping that everyone's suspicions were wrong and that it was something more temporary. However, I am relieved to know " what " this is and feast on every story (positive and disappointing) that you all share as treasures to build upon in the future....where ever it leads us. Gramma Deb (Sami, 2, poly) California Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2004 Report Share Posted September 22, 2004 Gramma Deb to Sami, (2, poly) Encouragement and positive attitude's is the best weapon against this, or any other type of chronic condition a child or adult may be faced with in their lives. Reading from your posts I can already see the the children already have a strong support system in their lives. Its going to be a rough and bumpy road along the way, but through this disease I have become, I hope a btter person than I would have been other wise. It stop a wreck in progress from coming about and most assuredly I would have ended up! who knows where? All the kids with this disease need to do what they can, so let them PUSH them selfs to their limitaions. They'll knows how far they can go. Activity! keep those muscles moving! hplta Rusty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2004 Report Share Posted September 22, 2004 What incredible, loving grandparents you are. Your grandchildren are blesses to have you in their lives. One recommendatin I would make is to check with your local school district about birth to three programs. They are set up to offer physical, occupational and speech therapy at no cost to you. They can help to teach you exercises and to help your granddaughter to overcome her challenges. I am so sorry to hear of your granddaughters diagnosis but glad you were able to find this incredibly supportive group. e, mom to joe 17 poly Gramma Lala <gramma_lala@...> wrote: Thanks for the various words of support. Everyone has such touching stories. I have never once thought, " why me? " I think it is because we took in our grandchildren and fought so hard for them that every day of this time we have together is special. I just hope and pray we get to keep them long enough to make a difference with their various challenges. Both children now have confirmed medical challenges and both will most likely have them the rest of their lives. My hope is that they are comfortable, achieve and DO whatever it is that they want to do in life. I know, at times, it will be frustrating for them. In Sami's case, I kept hoping that everyone's suspicions were wrong and that it was something more temporary. However, I am relieved to know " what " this is and feast on every story (positive and disappointing) that you all share as treasures to build upon in the future....where ever it leads us. Gramma Deb (Sami, 2, poly) California Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2004 Report Share Posted September 23, 2004 In a message dated 9/22/2004 3:33:47 PM Pacific Daylight Time, boundforlondon@... writes: One recommendatin I would make is to check with your local school district about birth to three programs. They are set up to offer physical, occupational and speech therapy at no cost to you. The Headstart program does the same thing if you can't find anything through local schools Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2004 Report Share Posted September 23, 2004 In a message dated 9/23/04 7:19:28 PM Eastern Daylight Time, gramma_lala@... writes: > - waiting doesn't seem to bother the kids at all.... but it's making me > antsy. > Hi Deb: LOL it never bothers the kids, they have their own great world to live in:) Let us know when you get them. Reading and learning more about your grandchildren and their situations before, saddens me. They are so fortunate that their grandparents were able to step in and give them the love and care they need and deserve. Take care. Patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2004 Report Share Posted September 23, 2004 In a message dated 9/23/04 5:19:25 PM Central Standard Time, gramma_lala@... writes: > BTW - Out here headstart has a two year waiting list. sheesh. > > Hi Deb, The birth to 3 program has nothing to do with head start.It is Part H of the IDEA Act,it provides funds to states that identify infants and toddlers with developmental disabilitis and to offer early intervention services until they reach the age of three. Something to look into.Very young children with JRA can lose out on alot of gross and fine motor skills.Hopefuly Sami will not suffer for long and will develop right on track but with her past family situation she might not have had the oppurtunities to develop normaly. She is so lucky to have you, Hugs Becki and 6systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2004 Report Share Posted September 23, 2004 Thanks. At this time, we would have PT and OT through LPCH. (At least that is what they told us at LPCH on Monday.) Sami does not need speech therapy. She is an avid and advanced talker -- even Dr. Sandborg commented on this aspect. lol We have our grandson in special ed preschool, offered through the school district so that he can get caught up socially, etc. He was locked in a bedroom for a couple of years so his social skills and speech needed help. 11 months ago, he was not potty trained, only grunted or whined for what he wanted and was a terror on wheels. Now he is a " good helper " , is working on speech and concepts (groupings, relationships, etc.). Everyone can understand most of what he says now and he is potty trained. He will start kindergarten next year (only one year late). I'm very proud of his progress. He like others mentioned here has asthma. It's never dull here that's for sure! But we don't limit or prevent any activity. I think some of them help build up his strength and lungs over time. We bought one of the bouncy houses a while back. He can go about 15 minutes and then needs a short rest. He has learned to tell when he needs to take a break. I think this is very important for him to learn and assess for himself. I can't be with him 24 x 7 and I believe in assisting positive independence learning when ever possible. BTW - Out here headstart has a two year waiting list. sheesh. Thanks for the info though....more info is always better. I have just left a message to see if they have any lab info back yet. tick tock tick tock -- waiting doesn't seem to bother the kids at all.... but it's making me antsy. Gramma Deb (Sami, 2, poly) California Re: Sami's Diagnosis In a message dated 9/22/2004 3:33:47 PM Pacific Daylight Time, boundforlondon@... writes: One recommendatin I would make is to check with your local school district about birth to three programs. They are set up to offer physical, occupational and speech therapy at no cost to you. The Headstart program does the same thing if you can't find anything through local schools Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2004 Report Share Posted September 24, 2004 In a message dated 9/23/04 9:39:41 PM Eastern Daylight Time, Arthurnator@... writes: > > Hi Deb, > The birth to 3 program has nothing to do with head start.It is Part H of the > > IDEA Act,it provides funds to states that identify infants and toddlers with > > developmental disabilitis and to offer early intervention services until > they > reach the age of three. > Something to look into.Very young children with JRA can lose out on alot of > gross and fine motor skills.Hopefuly Sami will not suffer for long and will > develop right on track but with her past family situation she might not have > had > the oppurtunities to develop normaly. > She is so lucky to have you, > Hugs > My daughter, , attended special ed preschool at the age of 3. She receieved home services at the age of 15 months. Both programs were awesome. Deb, if you can get these services for Sami, do. They offer everything, OT, PT, speech, etc. Take care. Patty Quote Link to comment Share on other sites More sharing options...
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