Guest guest Posted January 19, 2011 Report Share Posted January 19, 2011 , I don't have advice other then follow your rheumy. He sounds like he is on top of things. It is hard for me to see if the puffyness is inflamation or not. I trust the rheumy. If yours tells you that there is inflamation and damage is beign done then you need to listen. I have found that for Jaye there is many times that she has no pain when it is inflamed. I am not sure if that is because it gives her knee some cushon or what. Right now Jaye is doing well and I do not think she has any inflamation and very little joint pain since we started the enbrel. We are six weeks into enbrel and I think this is wonderful for her. Veri & Jaye 16 poly How to tell.... Hi again all, I am wondering about something and hope maybe you can help. While Madison has had time periods where the affected joints are painful, there have also been times when there is no pain. After her other knee flared in August and we decided to do the steroid injections, we chose to wait till we were in Houston for other care in November. While our rheumy agreed to this, he cautioned that even when she is not in pain, the inflammation is still doing damage and we should not wait any longer than absolutely necessary. That thought had not really occurred to me at the time. I was hung up on controlling the pain, understandably, but had not been considering how the joints were affected even when pain was controlled. We are now about 6 weeks out from her steroid injections and we¹ve not had any pain in the affected joints, but I am not sure how I can tell if the inflammation has been controlled!! She has rather ³puffy² knee¹s anyway, so it¹s hard for me to tell when they are swollen, and for parts of the last year, they have only been ³mildly² puffy, meaning I cannot see it at all. So my question for you all..... How do you monitor their inflammation? What process do you use to determine when it¹s being controlled? Thanks so much!! BIG hugs, , proud mom to Chance(17-Mito), Madison(14-Mito/JIA), and Abigail(12-Mito) http://www.ourexceptionallife.blogspot.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2011 Report Share Posted January 19, 2011 , I like your comment about how your ped first looks at your kids as " kids " before looking at them with the " mito " . Ours is the same way. Our ped tells us that Jaye writes her own book for a medical journal. She is not typical for anything. The ped we had before this one said the same thing. It is so important for our pediatricians to look at our kids as just kids and then dig into the symptoms. I know the rheumy is going to look at her as a " JIA Kid " , and the neuro is going to see her seizure disorder first and go from there. Her opthomologist certainly takes into consideration the JIA and the meds she is on, but also looks at the family history of glaucoma and other eye diseases. I just love that the ped treats her as a " normal " kid first. We love all of Jaye's " ologists " but her ped is quite special. We see her more often and she has to look at all of the health issues each time we see her and consider them along with the allergies and such. Veri & Jaye 16 poly How to tell.... Hi again all, I am wondering about something and hope maybe you can help. While Madison has had time periods where the affected joints are painful, there have also been times when there is no pain. After her other knee flared in August and we decided to do the steroid injections, we chose to wait till we were in Houston for other care in November. While our rheumy agreed to this, he cautioned that even when she is not in pain, the inflammation is still doing damage and we should not wait any longer than absolutely necessary. That thought had not really occurred to me at the time. I was hung up on controlling the pain, understandably, but had not been considering how the joints were affected even when pain was controlled. We are now about 6 weeks out from her steroid injections and we¹ve not had any pain in the affected joints, but I am not sure how I can tell if the inflammation has been controlled!! She has rather ³puffy² knee¹s anyway, so it¹s hard for me to tell when they are swollen, and for parts of the last year, they have only been ³mildly² puffy, meaning I cannot see it at all. So my question for you all..... How do you monitor their inflammation? What process do you use to determine when it¹s being controlled? Thanks so much!! BIG hugs, , proud mom to Chance(17-Mito), Madison(14-Mito/JIA), and Abigail(12-Mito) http://www.ourexceptionallife.blogspot.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2011 Report Share Posted January 19, 2011 Hi , I just wanted to say hello and welcome. Sorry I didn't respond to your initial email - your daughter's story is just amazing and you sound amazingly strong with all you are managing. Regarding the inflammation, my daughter has systemic JIA, and had very high labs for ESR and CRP even while on methotrextae and prednisone. It was only when we started Kineret that the inflammation levels went down. Before things were under control would have labs every 4-6 weeks to monitor. Sometimes she would have pain and swelling, but sometimes she would be doing really and we'd be surprised to see in the lab results that there was still so much inflammation. And, of course her Rheumy can always notice inflammation and swelling upon exam, even if we don't see it. Take care, nn (, 9, systemic) > > Hi again all, > > I am wondering about something and hope maybe you can help. > > While Madison has had time periods where the affected joints are painful, > there have also been times when there is no pain. After her other knee > flared in August and we decided to do the steroid injections, we chose to > wait till we were in Houston for other care in November. While our rheumy > agreed to this, he cautioned that even when she is not in pain, the > inflammation is still doing damage and we should not wait any longer than > absolutely necessary. > > That thought had not really occurred to me at the time. I was hung up on > controlling the pain, understandably, but had not been considering how the > joints were affected even when pain was controlled. > > We are now about 6 weeks out from her steroid injections and we¹ve not had > any pain in the affected joints, but I am not sure how I can tell if the > inflammation has been controlled!! She has rather ³puffy² knee¹s anyway, so > it¹s hard for me to tell when they are swollen, and for parts of the last > year, they have only been ³mildly² puffy, meaning I cannot see it at all. > > So my question for you all..... > > How do you monitor their inflammation? What process do you use to determine > when it¹s being controlled? > > Thanks so much!! > > BIG hugs, > , proud mom to Chance(17-Mito), Madison(14-Mito/JIA), and > Abigail(12-Mito) > http://www.ourexceptionallife.blogspot.com > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2011 Report Share Posted January 19, 2011 Hi I agree the rheumatologist is the one who monitors inflamation. One time Rose was acting totally normal and the rheumatologist did not see any inflamation. The only way we could tell were her labs (ESR rate is non-specific for inflamation and there are some other markers that get more elevated I believe when the disease is active). A few days later she did have leg pain. Since the ESR can indicate inflamation any where in the body it does not necessarilly mean its the JRA, however. I would ask her rheumatologist this question and about the labs in general. Jo > > Hi again all, > > I am wondering about something and hope maybe you can help. > > While Madison has had time periods where the affected joints are painful, > there have also been times when there is no pain. After her other knee > flared in August and we decided to do the steroid injections, we chose to > wait till we were in Houston for other care in November. While our rheumy > agreed to this, he cautioned that even when she is not in pain, the > inflammation is still doing damage and we should not wait any longer than > absolutely necessary. > > That thought had not really occurred to me at the time. I was hung up on > controlling the pain, understandably, but had not been considering how the > joints were affected even when pain was controlled. > > We are now about 6 weeks out from her steroid injections and we¹ve not had > any pain in the affected joints, but I am not sure how I can tell if the > inflammation has been controlled!! She has rather ³puffy² knee¹s anyway, so > it¹s hard for me to tell when they are swollen, and for parts of the last > year, they have only been ³mildly² puffy, meaning I cannot see it at all. > > So my question for you all..... > > How do you monitor their inflammation? What process do you use to determine > when it¹s being controlled? > > Thanks so much!! > > BIG hugs, > , proud mom to Chance(17-Mito), Madison(14-Mito/JIA), and > Abigail(12-Mito) > http://www.ourexceptionallife.blogspot.com > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2011 Report Share Posted January 19, 2011 I have to agree with everyone who's posted - I would go by what the rheumy is telling you. Sometimes you can tell there is inflammation by the way a joint looks, or if the SED rate is elevated, but many times there is inflammation you cannot see and many kids have a SED rate that is not elevated out of a " normal " range. There can be inflammation of tendons and of the eyes and you cannot see that for sure. That is why the rheumy actually laying his or her hands on the child is so important. They can feel what cannot be seen. Sure sometimes there is a swollen appearance and the inflammation is obvious, but not always. For example with my son, the rheumy was able to feel inflammation in his pelvic rim - I definitely never saw that! Also for the eyes, that is why it is so important for kids diagnosed to go to the eye dr and have their eyes checked for uveitis. The slit lamp test can see inflammation that may be present. Hope this helps somewhat, Michele ( 23, spondy) From: [mailto: ] On Behalf Of Kass Sent: Wednesday, January 19, 2011 1:05 AM Subject: How to tell.... Hi again all, I am wondering about something and hope maybe you can help. While Madison has had time periods where the affected joints are painful, there have also been times when there is no pain. After her other knee flared in August and we decided to do the steroid injections, we chose to wait till we were in Houston for other care in November. While our rheumy agreed to this, he cautioned that even when she is not in pain, the inflammation is still doing damage and we should not wait any longer than absolutely necessary. That thought had not really occurred to me at the time. I was hung up on controlling the pain, understandably, but had not been considering how the joints were affected even when pain was controlled. We are now about 6 weeks out from her steroid injections and we¹ve not had any pain in the affected joints, but I am not sure how I can tell if the inflammation has been controlled!! She has rather ³puffy² knee¹s anyway, so it¹s hard for me to tell when they are swollen, and for parts of the last year, they have only been ³mildly² puffy, meaning I cannot see it at all. So my question for you all..... How do you monitor their inflammation? What process do you use to determine when it¹s being controlled? Thanks so much!! BIG hugs, , proud mom to Chance(17-Mito), Madison(14-Mito/JIA), and Abigail(12-Mito) http://www.ourexceptionallife.blogspot.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2011 Report Share Posted January 20, 2011 Thanks so much to everyone for your wise words!!! We will be seeing Madison¹s rheumy for the first time since her steroid injections on 2/2, so we will see how things look!!! In the meantime, I am praying hard things will be improved and we can stop and rest here for a bit from this aspect of her care. The MTX shots would continue, as well as the other meds she is taking, but at least maybe we can smile for a few minutes thinking we managed to get some control finally. A girl can hope right!!?? If nothing else, it¹s good to know I am not the only one that just cannot tell from looking at her!!! BIG hugs, , proud mom to Chance(17-Mito), Madison(14-Mito/JIA) & Abigail(13 in 5 days-Mito) http://www.ourexceptionallife.blogspot.com On 1/19/11 11:25 AM, " Tepper, Michele " <MTepper@...> wrote: > I have to agree with everyone who's posted - I would go by what the rheumy is > telling you. Sometimes you can tell there is inflammation by the way a joint > looks, or if the SED rate is elevated, but many times there is inflammation > you cannot see and many kids have a SED rate that is not elevated out of a > " normal " range. There can be inflammation of tendons and of the eyes and you > cannot see that for sure. That is why the rheumy actually laying his or her > hands on the child is so important. They can feel what cannot be seen. Sure > sometimes there is a swollen appearance and the inflammation is obvious, but > not always. For example with my son, the rheumy was able to feel inflammation > in his pelvic rim - I definitely never saw that! > Also for the eyes, that is why it is so important for kids diagnosed to go to > the eye dr and have their eyes checked for uveitis. The slit lamp test can see > inflammation that may be present. > Hope this helps somewhat, Michele ( 23, spondy) > > From: <mailto: %40> > [mailto: <mailto: %40> ] On > Behalf Of Kass > Sent: Wednesday, January 19, 2011 1:05 AM > <mailto: %40> > Subject: How to tell.... > > Hi again all, > > I am wondering about something and hope maybe you can help. > > While Madison has had time periods where the affected joints are painful, > there have also been times when there is no pain. After her other knee > flared in August and we decided to do the steroid injections, we chose to > wait till we were in Houston for other care in November. While our rheumy > agreed to this, he cautioned that even when she is not in pain, the > inflammation is still doing damage and we should not wait any longer than > absolutely necessary. > > That thought had not really occurred to me at the time. I was hung up on > controlling the pain, understandably, but had not been considering how the > joints were affected even when pain was controlled. > > We are now about 6 weeks out from her steroid injections and we¹ve not had > any pain in the affected joints, but I am not sure how I can tell if the > inflammation has been controlled!! She has rather ³puffy² knee¹s anyway, so > it¹s hard for me to tell when they are swollen, and for parts of the last > year, they have only been ³mildly² puffy, meaning I cannot see it at all. > > So my question for you all..... > > How do you monitor their inflammation? What process do you use to determine > when it¹s being controlled? > > Thanks so much!! > > BIG hugs, > , proud mom to Chance(17-Mito), Madison(14-Mito/JIA), and > Abigail(12-Mito) > http://www.ourexceptionallife.blogspot.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2011 Report Share Posted January 20, 2011 Hi Veri, I really had no idea how much we were missing by not having a ped that looks at the kids like this before now. We have only had this ped for 2 years and our care has improved exponentially since we made the change. It¡¯s an understatement to say I LOVE HER....LOL. As often as we see her and talk to her, that¡¯s a good thing<grin>. BIG hugs, , proud mom to Chance(17-Mito), Madison(14-Mito/JIA), and Abigail(12-Mito) http://www.ourexceptionallife.blogspot.com On 1/19/11 7:13 AM, " veristroud@... " <veristroud@...> wrote: > , > > I like your comment about how your ped first looks at your kids as " kids " > before looking at them with the " mito " . Ours is the same way. Our ped tells us > that Jaye writes her own book for a medical journal. She is not > typical for anything. The ped we had before this one said the same thing. It > is so important for our pediatricians to look at our kids as just kids and > then dig into the symptoms. I know the rheumy is going to look at her as a > " JIA Kid " , and the neuro is going to see her seizure disorder first and go > from there. Her opthomologist certainly takes into consideration the JIA and > the meds she is on, but also looks at the family history of glaucoma and other > eye diseases. I just love that the ped treats her as a " normal " kid first. We > love all of Jaye's " ologists " but her ped is quite special. We see her > more often and she has to look at all of the health issues each time we see > her and consider them along with the allergies and such. > > Veri & Jaye 16 poly > > How to tell.... > > Hi again all, > > I am wondering about something and hope maybe you can help. > > While Madison has had time periods where the affected joints are painful, > there have also been times when there is no pain. After her other knee > flared in August and we decided to do the steroid injections, we chose to > wait till we were in Houston for other care in November. While our rheumy > agreed to this, he cautioned that even when she is not in pain, the > inflammation is still doing damage and we should not wait any longer than > absolutely necessary. > > That thought had not really occurred to me at the time. I was hung up on > controlling the pain, understandably, but had not been considering how the > joints were affected even when pain was controlled. > > We are now about 6 weeks out from her steroid injections and we©öve not had > any pain in the affected joints, but I am not sure how I can tell if the > inflammation has been controlled!! She has rather ©øpuffy©÷ knee©ös anyway, so > it©ös hard for me to tell when they are swollen, and for parts of the last > year, they have only been ©ømildly©÷ puffy, meaning I cannot see it at all. > > So my question for you all..... > > How do you monitor their inflammation? What process do you use to determine > when it©ös being controlled? > > Thanks so much!! > > BIG hugs, > , proud mom to Chance(17-Mito), Madison(14-Mito/JIA), and > Abigail(12-Mito) > http://www.ourexceptionallife.blogspot.com > > Quote Link to comment Share on other sites More sharing options...
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