Guest guest Posted April 17, 2003 Report Share Posted April 17, 2003 Ok,Ya'll, Get ready for a big vent. We went to the rheumy on Monday. They are so frustratingly stupid !! They think that since Logan doesn't have any swollen joints,his arthritis is under control. I told them that he was still having pain,,and he even complained when they moved his foot around,BUT,,I guess they are just a bunch of IDIOTS,,and they can't comprehend,when a child is in pain. They think that all his pain is from the hypermobility. I could just scream. They told me that if he had swollen joints,then they would consider changing his meds. I told them that when he did have swollen joints,,they couldn't get him in to see him. I'm so sick of this crap. I just called about his labs,and his ASO Titre is 659,,so that is better (normal is 1-200) but his SED rate is still 51 !! I can't believe it is that high and those idiots still think the pain is due to hypermobility. I know the SED rate isn't totally accurate,,like if he has had a cold or something,it will be high,,but he hasn't had a cold,strep,,nothing !! He had a program at school the other night,,and when we got home he told me that his feet were hurting from standing so long. Does that sound like hypermobility to you ?? So,on to the next thing. We went and got the braces.(I'm not sure if I told ya'll about them,,they are for his ankles,,because he turns his feet in,when he walks,,) They are inserts that go in the shoe,,and then they come up,and go over his ankles. Kinda like hard white plastic. He had such a heart attack when they put them on him. I thought the child would pass out !LOL He fell to the ground,swore he couldn't straighten his legs,he couldn't walk,move,breathe,,,etc. Talk about dramatic. The lady was very nice and had a lot of patience. She said he is to wear them for 30 min on 30 min off the first day. Then slowly increase it till he is wearing them for the whole day. After he calmed down (after a trip to Target,to buy Pokemon cards) he was OK with them. He starts wearing them to school on Monday. He will have to take them off after 4 hours,and leave them off for 30 min,in the middle of the day,at school. I guess they can take them off of him,at naptime. I hope that doesn't embarrass him. He told me that he hopes none of his friends see them. I had to convince him that they were cool,,and it was OK for his friends to see them. So,,thats about it. Oh yeah,,he had also lost another pound,,so he is back down to 38 lbs,,,and he grew an inch. At 5 & 1/2 that is still pretty small. I'm trying to fatten him up,,,I'd be glad to share some of my tummy with him ! LOL Kim and Logan 5 poly ________________________________________________________________ The best thing to hit the internet in years - Juno SpeedBand! Surf the web up to FIVE TIMES FASTER! Only $14.95/ month - visit www.juno.com to sign up today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2003 Report Share Posted April 17, 2003 Teri, No,,the nearest ped rheumy is in Houston,which is 5 hours away Kim and Logan 5 poly On Wed, 17 Apr 2002 14:44:49 -0400 " Teri Hepworth " <thepwort@...> writes: > Kim, > Is the another ped rheumy in your area for a second opinion? > > Teri and Age 5 pauci JRA > Logan update > > > Ok,Ya'll, > Get ready for a big vent. We went to the rheumy on Monday. They > are so > frustratingly stupid !! They think that since Logan doesn't have > any > swollen joints,his arthritis is under control. I told them that he > was > still having pain,,and he even complained when they moved his foot > around,BUT,,I guess they are just a bunch of IDIOTS,,and they > can't > comprehend,when a child is in pain. They think that all his pain > is from > the hypermobility. I could just scream. They told me that if he > had > swollen joints,then they would consider changing his meds. I told > them > that when he did have swollen joints,,they couldn't get him in to > see > him. I'm so sick of this crap. I just called about his labs,and > his ASO > Titre is 659,,so that is better (normal is 1-200) but his SED rate > is > still 51 !! I can't believe it is that high and those idiots still > think > the pain is due to hypermobility. I know the SED rate isn't > totally > accurate,,like if he has had a cold or something,it will be > high,,but he > hasn't had a cold,strep,,nothing !! He had a program at school the > other > night,,and when we got home he told me that his feet were hurting > from > standing so long. Does that sound like hypermobility to you ?? > So,on to the next thing. We went and got the braces.(I'm not > sure if I > told ya'll about them,,they are for his ankles,,because he turns > his feet > in,when he walks,,) They are inserts that go in the shoe,,and then > they > come up,and go over his ankles. Kinda like hard white plastic. He > had > such a heart attack when they put them on him. I thought the child > would > pass out !LOL He fell to the ground,swore he couldn't straighten > his > legs,he couldn't walk,move,breathe,,,etc. Talk about dramatic. The > lady > was very nice and had a lot of patience. She said he is to wear > them for > 30 min on 30 min off the first day. Then slowly increase it till > he is > wearing them for the whole day. After he calmed down (after a trip > to > Target,to buy Pokemon cards) he was OK with them. He starts > wearing them > to school on Monday. He will have to take them off after 4 > hours,and > leave them off for 30 min,in the middle of the day,at school. I > guess > they can take them off of him,at naptime. I hope that doesn't > embarrass > him. He told me that he hopes none of his friends see them. I had > to > convince him that they were cool,,and it was OK for his friends to > see > them. > So,,thats about it. Oh yeah,,he had also lost another pound,,so > he is > back down to 38 lbs,,,and he grew an inch. At 5 & 1/2 that is still > pretty > small. I'm trying to fatten him up,,,I'd be glad to share some of > my > tummy with him ! LOL > > Kim and Logan 5 poly > > > ________________________________________________________________ > The best thing to hit the internet in years - Juno SpeedBand! > Surf the web up to FIVE TIMES FASTER! > Only $14.95/ month - visit www.juno.com to sign up today! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2003 Report Share Posted April 17, 2003 Kim - I'm sorry to hear you are dealing with so much frustration! It's bad enough to deal with things when your child is in pain, but to deal with ignorance is unacceptable. I would suggest looking for another doctor...at least for a second opinion. About the ankle braces - how long do they expect Logan will have to wear them? My niece has worn one on her left leg from the knee down since she began to walk (complications of cerebal palsy)- she is now 9 years old. We also were worried about how other kids would treat her when she began school. Kindergarten went okay, but by first grade, she was starting to deal with some remarks by other kids. It amazed us at how cruel kids could be - I sure don't remember it like that in elementary school! About halfway thru the first grade, the Shrine Hospital gave her a choice of a colorful design on her brace, rather than the plain white plastic. She gets a new one each year and just this past month she received a new one in a patriotic design. The other kids think the braces with designs are cool and always look forward to seeing the new one. Perhaps you could ask the doctor if they offer such a thing? Good luck to you. I hope you get all your needed answers soon! Jana (mom to Jake, 5) _________________________________________________________________ MSN 8 with e-mail virus protection service: 2 months FREE* http://join.msn.com/?page=features/virus Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2003 Report Share Posted April 17, 2003 Kim - I'm sorry to hear you are dealing with so much frustration! It's bad enough to deal with things when your child is in pain, but to deal with ignorance is unacceptable. I would suggest looking for another doctor...at least for a second opinion. About the ankle braces - how long do they expect Logan will have to wear them? My niece has worn one on her left leg from the knee down since she began to walk (complications of cerebal palsy)- she is now 9 years old. We also were worried about how other kids would treat her when she began school. Kindergarten went okay, but by first grade, she was starting to deal with some remarks by other kids. It amazed us at how cruel kids could be - I sure don't remember it like that in elementary school! About halfway thru the first grade, the Shrine Hospital gave her a choice of a colorful design on her brace, rather than the plain white plastic. She gets a new one each year and just this past month she received a new one in a patriotic design. The other kids think the braces with designs are cool and always look forward to seeing the new one. Perhaps you could ask the doctor if they offer such a thing? Good luck to you. I hope you get all your needed answers soon! Jana (mom to Jake, 5) _________________________________________________________________ MSN 8 with e-mail virus protection service: 2 months FREE* http://join.msn.com/?page=features/virus Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2003 Report Share Posted April 17, 2003 Kim, I'm sorry you are going thru such a frustrating time with Logan and his docs. About the trip to Houston~~ We used to live in Corpus Christi and it took me just over 4 hours to get to Houston. I can tell you that it was well worth the time spent traveling. The care at Texas Children's is outstanding! We saw Dr Barry Myones. Dr also came highly recommended. From your note I am gathering that Logan's current rheumatologist is not a pediatric specialist. Is that correct? If so, that is all the more reason to reconsider that trip to Houston. Having a board certified pediatric rheumatologist can make all the difference in the world! The reception staff at Texas Children's was always very good about appointment times for ~~ I made sure to always remind them that I was traveling a fair distance and wanted to make it a one day trip and they would work to give me a time of day that would work for me. If you'd rather stay the night there are many hotels near the hospital that offer discounted rates when you are there for medical visits. You can get more info on that from the hospital. Liz and - 9- poly JRA Logan update > > > > > > Ok,Ya'll, > > Get ready for a big vent. We went to the rheumy on Monday. They > > are so > > frustratingly stupid !! They think that since Logan doesn't have > > any > > swollen joints,his arthritis is under control. I told them that he > > was > > still having pain,,and he even complained when they moved his foot > > around,BUT,,I guess they are just a bunch of IDIOTS,,and they > > can't > > comprehend,when a child is in pain. They think that all his pain > > is from > > the hypermobility. I could just scream. They told me that if he > > had > > swollen joints,then they would consider changing his meds. I told > > them > > that when he did have swollen joints,,they couldn't get him in to > > see > > him. I'm so sick of this crap. I just called about his labs,and > > his ASO > > Titre is 659,,so that is better (normal is 1-200) but his SED rate > > is > > still 51 !! I can't believe it is that high and those idiots still > > think > > the pain is due to hypermobility. I know the SED rate isn't > > totally > > accurate,,like if he has had a cold or something,it will be > > high,,but he > > hasn't had a cold,strep,,nothing !! He had a program at school the > > other > > night,,and when we got home he told me that his feet were hurting > > from > > standing so long. Does that sound like hypermobility to you ?? > > So,on to the next thing. We went and got the braces.(I'm not > > sure if I > > told ya'll about them,,they are for his ankles,,because he turns > > his feet > > in,when he walks,,) They are inserts that go in the shoe,,and then > > they > > come up,and go over his ankles. Kinda like hard white plastic. He > > had > > such a heart attack when they put them on him. I thought the child > > would > > pass out !LOL He fell to the ground,swore he couldn't straighten > > his > > legs,he couldn't walk,move,breathe,,,etc. Talk about dramatic. The > > lady > > was very nice and had a lot of patience. She said he is to wear > > them for > > 30 min on 30 min off the first day. Then slowly increase it till > > he is > > wearing them for the whole day. After he calmed down (after a trip > > to > > Target,to buy Pokemon cards) he was OK with them. He starts > > wearing them > > to school on Monday. He will have to take them off after 4 > > hours,and > > leave them off for 30 min,in the middle of the day,at school. I > > guess > > they can take them off of him,at naptime. I hope that doesn't > > embarrass > > him. He told me that he hopes none of his friends see them. I had > > to > > convince him that they were cool,,and it was OK for his friends to > > see > > them. > > So,,thats about it. Oh yeah,,he had also lost another pound,,so > > he is > > back down to 38 lbs,,,and he grew an inch. At 5 & 1/2 that is still > > pretty > > small. I'm trying to fatten him up,,,I'd be glad to share some of > > my > > tummy with him ! LOL > > > > Kim and Logan 5 poly > > > > > > ________________________________________________________________ > > The best thing to hit the internet in years - Juno SpeedBand! > > Surf the web up to FIVE TIMES FASTER! > > Only $14.95/ month - visit www.juno.com to sign up today! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2004 Report Share Posted April 12, 2004 Kim, I have to agree with you here. I think there is more to arthritis than swelling, there is pain, fatigue, rash, fever, etc. Absence of observable swelling can not be the only sign that states you are in remission or not. Georgina posted an article not too long ago about how there was a study that showed that many had no observable swelling but when they did ultrasounds there was fluid present. Makes me wonder if they looked at Logan's joints under ultrasound if they would find swelling present. Hypermobility seems to come up a lot with the docs but I wonder if it truly be the cause of pain and difficulties for so many. Seems odd to me. Perhaps the mobility is because of the arthritis not that the mobility is the cause of the problems. I really don't know. How frustrating for you. Has Logan seen a PT for strengthening? That can help with pain. Does he hurt all over or certain joints? Sounds like you have a great ped. Sorry to hear about your frustrating day. Also, a SED rate of 40 is not in the normal range (from what I can remember) so how can that be considered ok. Strange! e, mom to joe 17 poly > So,,we had Logan's rheumy appointment a while back,,,and I'm just > now letting ya'll know about it. UUGGHHHHH,,,I just can't stand those > people. She examined him,,then she casually said that he didn't have > arthritis anymore. Umm,,hellooo,,since when ? I asked her what she meant > and she said that since he didn't have any swelling,,that he was in > remission. I asked her why he was in pain every single day,then and if he > was in remission,,then why did he still have to take the penicillin,,and > she said his pain is from the hypermobility,,and he is to take the > penicillin throughout all his childhood,to keep the strep from coming > back. Is anyone else confused,,or is it just me ? I talked to his ped > and he basically said Bulls***. He sees Logan on the days he is in > pain,and swollen,,and the rheumy can't seem to get him in. He said Logan > DOES still have arthritis,,and that the rheumy didn't know what she was > talking about. He said I could take him to an ortho Dr,if I wanted > to,,and see if they had an opinion about the pain in his feet everyday. > I'm not sure if I will or not. What do ya'll think ? > Also,,I got his lab results and everything looks pretty good. His SED > is still 40,,but its been higher,,and his ASO is down from 1400,to > 650,,still way too high,,but nobody seems to think much about that. I > don't know what exactly this penicillin is supposed to be doing,but I > would think it would bring the ASO down,,at some point. Also,,Logan is > covered in bruises. I'm a little concerned about it,,,especially since he > hasn't been on the Naprosyn,,for about a month,now. He has about 15 on > his legs,alone. Anyone have any thoughts or feelings on that ?? > > > Kim and Logan 6 poly,,connective tissue disorder & etc,etc > > ________________________________________________________________ > The best thing to hit the Internet in years - Juno SpeedBand! > Surf the Web up to FIVE TIMES FASTER! > Only $14.95/ month - visit www.juno.com to sign up today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2004 Report Share Posted April 12, 2004 Hey I am in remission then! I have no swelling!!!!!Oooops! but what about the stiffness and extreme joint pain! This rhuemy is CRAZY! Where did she get her medical degree, from a 'Cracker Jacks Box????' or a mail order correspondance course?????! She is an IDIOT! " no swelling today, no Arthritis! Ooops swelling again, arthritis is back!!! I think seeing the ortho would probably be a good idea! if the ped thinks it worthy of having his feet checked by them... Hey Logan! was Minie Mouse a good kisser?!! hehehe...Many Hugs! Your Uncle Rusty Limbs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2004 Report Share Posted April 14, 2004 Kim, Go to the Ortho, go to anyone that will see him. It took a full two years of going from doctor to dctor todoctor for my JRA to have a definite diagnosis. The whole time my sedrate was over 100 but sometimes as low as 40 my ANA was very high and I had developed my own special style of walking. We had doc. to tell us I had a condition only seen in 13 yr. old boys , we were told I had cartledge growing in between the bones of my foot that wasn't suppose to be growing there (not true), we were told that when I went thru puberty then my hip structure would change and I would have to be retaught how to walk but nothing could be done till then, Finally My mother was told that there was nothing wrong with me and that if I were his child I would get a sound spanking everytime I walked like that because I was creating that walk for attention. So what ever it takes , however many it takes , what ever it cost, don't stop honey you know better than any that something is wrong and It's just a matter of timing to find the doctor that knows. It took me being examined by the teaching head of Orthopedics at a local university to be diagnosed.....I was examined in a class room of University of Louisville for 15 minutes and he knew what it was. He wasn't even practicing at the time ...was just teaching. The next stop for me would have been going to be MAYO Clinic. So go with your gut hun you know best and he needs you to be his advocate Hugs to you both :):)Tree Logan update So,,we had Logan's rheumy appointment a while back,,,and I'm justnow letting ya'll know about it. UUGGHHHHH,,,I just can't stand thosepeople. She examined him,,then she casually said that he didn't havearthritis anymore. Umm,,hellooo,,since when ? I asked her what she meantand she said that since he didn't have any swelling,,that he was inremission. I asked her why he was in pain every single day,then and if hewas in remission,,then why did he still have to take the penicillin,,andshe said his pain is from the hypermobility,,and he is to take thepenicillin throughout all his childhood,to keep the strep from comingback. Is anyone else confused,,or is it just me ? I talked to his ped and he basically said Bulls***. He sees Logan on the days he is inpain,and swollen,,and the rheumy can't seem to get him in. He said LoganDOES still have arthritis,,and that the rheumy didn't know what she wastalking about. He said I could take him to an ortho Dr,if I wantedto,,and see if they had an opinion about the pain in his feet everyday.I'm not sure if I will or not. What do ya'll think ? Also,,I got his lab results and everything looks pretty good. His SEDis still 40,,but its been higher,,and his ASO is down from 1400,to650,,still way too high,,but nobody seems to think much about that. Idon't know what exactly this penicillin is supposed to be doing,but Iwould think it would bring the ASO down,,at some point. Also,,Logan iscovered in bruises. I'm a little concerned about it,,,especially since hehasn't been on the Naprosyn,,for about a month,now. He has about 15 onhis legs,alone. Anyone have any thoughts or feelings on that ??Kim and Logan 6 poly,,connective tissue disorder & etc,etc________________________________________________________________The best thing to hit the Internet in years - Juno SpeedBand!Surf the Web up to FIVE TIMES FASTER!Only $14.95/ month - visit www.juno.com to sign up today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2004 Report Share Posted April 14, 2004 Kim - I agree with your ped. That is crap! I can't believe that he is in remission if he still has such pain! Maybe he's systemic? Have they considered that? I would switch doctor's since yours is obviously in DENIAL! I am sad to hear Logan still has to endure such pain. A sed rate of 40 would tell me (and I am no expert) that something is still very wrong! Alia and Caroline, age 2, poly/uveitis > So,,we had Logan's rheumy appointment a while back,,,and I'm just > now letting ya'll know about it. UUGGHHHHH,,,I just can't stand those > people. She examined him,,then she casually said that he didn't have > arthritis anymore. Umm,,hellooo,,since when ? I asked her what she meant > and she said that since he didn't have any swelling,,that he was in > remission. I asked her why he was in pain every single day,then and if he > was in remission,,then why did he still have to take the penicillin,,and > she said his pain is from the hypermobility,,and he is to take the > penicillin throughout all his childhood,to keep the strep from coming > back. Is anyone else confused,,or is it just me ? I talked to his ped > and he basically said Bulls***. He sees Logan on the days he is in > pain,and swollen,,and the rheumy can't seem to get him in. He said Logan > DOES still have arthritis,,and that the rheumy didn't know what she was > talking about. He said I could take him to an ortho Dr,if I wanted > to,,and see if they had an opinion about the pain in his feet everyday. > I'm not sure if I will or not. What do ya'll think ? > Also,,I got his lab results and everything looks pretty good. His SED > is still 40,,but its been higher,,and his ASO is down from 1400,to > 650,,still way too high,,but nobody seems to think much about that. I > don't know what exactly this penicillin is supposed to be doing,but I > would think it would bring the ASO down,,at some point. Also,,Logan is > covered in bruises. I'm a little concerned about it,,,especially since he > hasn't been on the Naprosyn,,for about a month,now. He has about 15 on > his legs,alone. Anyone have any thoughts or feelings on that ?? > > > Kim and Logan 6 poly,,connective tissue disorder & etc,etc > > ________________________________________________________________ > The best thing to hit the Internet in years - Juno SpeedBand! > Surf the Web up to FIVE TIMES FASTER! > Only $14.95/ month - visit www.juno.com to sign up today! Quote Link to comment Share on other sites More sharing options...
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