Guest guest Posted February 7, 2011 Report Share Posted February 7, 2011 Glad you had the eyes checked - like I said, I do like to mention it to anyone new to the disease. We have had quite a few here on the list with uveitis over the years. " additional joint involvement is highly unlikely " - Yikes!!! How many of us have gone in with a child seeming to have only one area inflamed and then it quickly is determined that more and more areas become involved? A child with JA will often have quite a few joints involved not to mention the possibility of tendons and sometimes even organs, as in the eyes. I am so glad you are getting in to someone else for a second opinion. I hope you get the answers your daughter is needing. Michele ( 23, spondy) From: [mailto: ] On Behalf Of Sent: Monday, February 07, 2011 12:45 PM Subject: Update on is First of all, thank to all that have commented on my post. What a huge help you have been! I prayed Friday afternoon for God to send me " a " mother of a child with JA. By midnight Saturday I had 5 and now more than 15!!! What a blessing! I've called four different peds rheumy's in the area and either no one called me back or they're not taking new patients. I found a peds rheumy about 3 hours from our house that will be seeing us Tuesday, 2/15 at 12:30 pm. Lexi has also started complaining about her hips hurting and no longerr sits " criss cross applesauce " for me. I spoke with her current (should say " previous " - I fired him today) peds rheumy about it this morning and he totally blew me off, saying additional joint involvement at this point is highly unlikely and to " keep an eye on it. " Thank you to for the " junkyard dog " comment - I'm going from kitty to barking Rotweiler!!! Thank you for the comment about the eyes. Thankfully, we already see a pediatric opthamologist for Lexi's brother and she had seen the optho last year because I thought she needed glasses (she walks into walls and trips over her feet). I had her in about a month ago for her JA eye exam and we go back again in July. Everything looks good there, except she always complains of light sensitivity, but its most likely from the MTX because the eye exam was normal. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2011 Report Share Posted February 7, 2011 the Rotweiler Update on is First of all, thank to all that have commented on my post. What a huge help you have been! I prayed Friday afternoon for God to send me " a " mother of a child with JA. By midnight Saturday I had 5 and now more than 15!!! What a blessing! I've called four different peds rheumy's in the area and either no one called me back or they're not taking new patients. I found a peds rheumy about 3 hours from our house that will be seeing us Tuesday, 2/15 at 12:30 pm. Lexi has also started complaining about her hips hurting and no longerr sits " criss cross applesauce " for me. I spoke with her current (should say " previous " - I fired him today) peds rheumy about it this morning and he totally blew me off, saying additional joint involvement at this point is highly unlikely and to " keep an eye on it. " Thank you to for the " junkyard dog " comment - I'm going from kitty to barking Rotweiler!!! Thank you for the comment about the eyes. Thankfully, we already see a pediatric opthamologist for Lexi's brother and she had seen the optho last year because I thought she needed glasses (she walks into walls and trips over her feet). I had her in about a month ago for her JA eye exam and we go back again in July. Everything looks good there, except she always complains of light sensitivity, but its most likely from the MTX because the eye exam was normal. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2011 Report Share Posted February 7, 2011 the Rotweiler, I hate it when this computer sends a message before I am ready, grrrr. I am glad to hear that you have moved to seeing a different rheumy. I so disagree with the " highly unlikely " comment as well. My Jaye was actually originally diagnosed pauci and then when she moved from ankles and knee involvement to nearly all joints in her arms, legs, hands, feet and jaw, her diagnosis was changed to polyarticular. I did not realize that it is rare for the rheumy to change the diagnosis but since then have been told it is. I remember the nurse being very surprised that the rheumy had actually changed it but at that time it did not mean anything to me. I will pray that this new rheumatologist will look at is and help to get her on the right medications quickly. I know that some rheumys have a long wait list so am glad that you will be seen next week. Please let us know what you find out. If this rheumy is good then the three hour drive will be more then worth it. We saw our rhuemy today and we make a weekend of it. Went to Kansas City on Saturday and shopped all day on Sunday, then home today. The three hour drive is so worth it to us, and we do it every two or three months unless we have to make adjustment trips because of a flare or something. The first rheumatologist we used was one that actually comes to our area 5 times each year so every 2 or 3 months and we only had to drive 30 minutes to see her. We did not click so I chose to travel to see a doctor that gives us the time and attention we need. Veri & Jaye 17 poly Update on is First of all, thank to all that have commented on my post. What a huge help you have been! I prayed Friday afternoon for God to send me " a " mother of a child with JA. By midnight Saturday I had 5 and now more than 15!!! What a blessing! I've called four different peds rheumy's in the area and either no one called me back or they're not taking new patients. I found a peds rheumy about 3 hours from our house that will be seeing us Tuesday, 2/15 at 12:30 pm. Lexi has also started complaining about her hips hurting and no longerr sits " criss cross applesauce " for me. I spoke with her current (should say " previous " - I fired him today) peds rheumy about it this morning and he totally blew me off, saying additional joint involvement at this point is highly unlikely and to " keep an eye on it. " Thank you to for the " junkyard dog " comment - I'm going from kitty to barking Rotweiler!!! Thank you for the comment about the eyes. Thankfully, we already see a pediatric opthamologist for Lexi's brother and she had seen the optho last year because I thought she needed glasses (she walks into walls and trips over her feet). I had her in about a month ago for her JA eye exam and we go back again in July. Everything looks good there, except she always complains of light sensitivity, but its most likely from the MTX because the eye exam was normal. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2011 Report Share Posted February 7, 2011 Veri - I need to change my signature for posts on here to " the Rotweiler! " So great to hear the update on Amadan Jaye from today. What a wonderful feeling that must be! I keep hearing great things about Enbrel. I'm definitely asking about it next week. Lexi had a bad day today. When she's in pain she just gets really grumpy and cranky. Its so difficult. I ask her " are you having pain? " and she says " stop asking me that!!! " I try to keep her dosed with tylenol on those days, but she even gives me a hard time about taking the meds. Once she takes the tylenol and gets a little nap she's usually herself again, but not today. She woke up just as grumpy. So glad my hubby came home from work and I got to go Wal-marting for about 30 min. Really looking forward to next week! > > > > > the Rotweiler, > I hate it when this computer sends a message before I am ready, grrrr. > > I am glad to hear that you have moved to seeing a different rheumy. I so disagree with the " highly unlikely " comment as well. My Jaye was actually originally diagnosed pauci and then when she moved from ankles and knee involvement to nearly all joints in her arms, legs, hands, feet and jaw, her diagnosis was changed to polyarticular. I did not realize that it is rare for the rheumy to change the diagnosis but since then have been told it is. I remember the nurse being very surprised that the rheumy had actually changed it but at that time it did not mean anything to me. I will pray that this new rheumatologist will look at is and help to get her on the right medications quickly. I know that some rheumys have a long wait list so am glad that you will be seen next week. Please let us know what you find out. If this rheumy is good then the three hour drive will be more then worth it. We saw our rhuemy today and we make a weekend of it. Went to Kansas City on Saturday and shopped all day on Sunday, then home today. The three hour drive is so worth it to us, and we do it every two or three months unless we have to make adjustment trips because of a flare or something. The first rheumatologist we used was one that actually comes to our area 5 times each year so every 2 or 3 months and we only had to drive 30 minutes to see her. We did not click so I chose to travel to see a doctor that gives us the time and attention we need. > > Veri & Jaye 17 poly > > > > > > > > Update on is > > > > > First of all, thank to all that have commented on my post. What a huge help you have been! I prayed Friday afternoon for God to send me " a " mother of a child with JA. By midnight Saturday I had 5 and now more than 15!!! What a blessing! > I've called four different peds rheumy's in the area and either no one called me back or they're not taking new patients. I found a peds rheumy about 3 hours from our house that will be seeing us Tuesday, 2/15 at 12:30 pm. Lexi has also started complaining about her hips hurting and no longerr sits " criss cross applesauce " for me. I spoke with her current (should say " previous " - I fired him today) peds rheumy about it this morning and he totally blew me off, saying additional joint involvement at this point is highly unlikely and to " keep an eye on it. " Thank you to for the " junkyard dog " comment - I'm going from kitty to barking Rotweiler!!! > Thank you for the comment about the eyes. Thankfully, we already see a pediatric opthamologist for Lexi's brother and she had seen the optho last year because I thought she needed glasses (she walks into walls and trips over her feet). I had her in about a month ago for her JA eye exam and we go back again in July. Everything looks good there, except she always complains of light sensitivity, but its most likely from the MTX because the eye exam was normal. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2011 Report Share Posted February 7, 2011 , I am sorry that is had such a rough day today. Another of the normal things you will get used to is that she will not want to talk about it all the time. Be prepared for her to just start telling you " I'm fine " , it is not easy but she will say it. Jaye figured out that I would accept " I'm fine " and not ask more questions. I got to where i would watch her and so knew by how she moved how she was doing. I hate " I'm fine " . Today we had a " I'm ok " when the rheumy asked and it was with a smile on her face. We have been on this road for a long time. I was one of those moms that resisted anything other then the nsaids. It was 16 months ago that we started methotrexate and we saw improvement, but not enough. I continued to resist anything more and wish now I had agreed to a more agressive treatment long ago. Jaye is older then is and I let her help with alot of the decisions we make. I am not to the point of saying that Enbrel is out miracle drug yet but I am sure hoping that it is. Veri & Jaye 17 poly Update on is > > > > > First of all, thank to all that have commented on my post. What a huge help you have been! I prayed Friday afternoon for God to send me " a " mother of a child with JA. By midnight Saturday I had 5 and now more than 15!!! What a blessing! > I've called four different peds rheumy's in the area and either no one called me back or they're not taking new patients. I found a peds rheumy about 3 hours from our house that will be seeing us Tuesday, 2/15 at 12:30 pm. Lexi has also started complaining about her hips hurting and no longerr sits " criss cross applesauce " for me. I spoke with her current (should say " previous " - I fired him today) peds rheumy about it this morning and he totally blew me off, saying additional joint involvement at this point is highly unlikely and to " keep an eye on it. " Thank you to for the " junkyard dog " comment - I'm going from kitty to barking Rotweiler!!! > Thank you for the comment about the eyes. Thankfully, we already see a pediatric opthamologist for Lexi's brother and she had seen the optho last year because I thought she needed glasses (she walks into walls and trips over her feet). I had her in about a month ago for her JA eye exam and we go back again in July. Everything looks good there, except she always complains of light sensitivity, but its most likely from the MTX because the eye exam was normal. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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