Guest guest Posted June 16, 2000 Report Share Posted June 16, 2000 n sounds so much like Karl with her symptoms. He started on 40 mg. And he is being weaned down weekly. We are at 15 now. I haven't seen the rash again yet. I will just have to see how he did last week to decide how well it is going. Aimee Moles Karl Good news about Karl. n is supposed to go to an all week outdoor camp next October with school, and we will just wait to see if she could handle it. How much steroids is Karl taking, and how fast is he being weaned off of them? n had to go up to 20mg, and we weaned her down to 2mg. Now the doctor wants us to stay at 2mg. She has been on 2mg for about 6 weeks now. She has no fever, but a few dots on her legs every night representing the rash. When n weaned down, occasionally a joint would hurt here or there. Right now she has no joint pain at all, but some stiffness in her hands in the morning. She still fatigues easier than a normal 11 year old. Her bedtime is 7:30, and she is plenty tired by then. Good luck. ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com ------------------------------------------------------------------------ Missing old school friends? Find them here: 1/5534/2/_/524922/_/961168958/ ------------------------------------------------------------------------ For links to websites with JRA info visit: http://www.geocities.com/Heartland/Village/8414/Links.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2000 Report Share Posted June 20, 2000 Hi Aimee, I hope Karl continues to do well with the prednisone tapers. As he gets down lower on the med, it may be important for him to taper even more gradually. I know this is something we want to happen fast but there's usually a better, more successful outcome if it's done very slowly. Good luck. And please keep us posted on how he's doing. Take care, Georgina " MOLES,AIMEE H " wrote: > > n sounds so much like Karl with her symptoms. He started on 40 mg. And > he is being weaned down weekly. We are at 15 now. I haven't seen the rash > again yet. I will just have to see how he did last week to decide how well > it is going. > > Aimee Moles > > Karl > > Good news about Karl. n is supposed to go to an all week > outdoor camp > next October with school, and we will just wait to see if she could > handle > it. How much steroids is Karl taking, and how fast is he being > weaned off > of them? n had to go up to 20mg, and we weaned her down to > 2mg. Now > the doctor wants us to stay at 2mg. She has been on 2mg for about 6 > weeks > now. She has no fever, but a few dots on her legs every night > representing > the rash. When n weaned down, occasionally a joint would hurt > here or > there. Right now she has no joint pain at all, but some stiffness > in her > hands in the morning. She still fatigues easier than a normal 11 > year old. > Her bedtime is 7:30, and she is plenty tired by then. Good luck. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2000 Report Share Posted June 27, 2000 Aimee, not much to tell you about the blood test especially about the stick. My daughter just graduated to being stuck after 8 yrs of different types of blood work.One day she just went in and asked for the biggest needle they had and was actually stuck with it and didn't cry it was very surprising to all that knew her in the lab dept. When she would go have lab work done they would have to pull off the white lab jackets first before the could get near her. when they saw use coming they would flip a coin to see who would draw the blood from her. she now runs to get her lab work done, but they still only get one stick.She to has had jra for years and was just diagnosed last august when we switched peds. so until he's comfortable with the needles just keep cuddling him like i did for years with my daughter. now she doesn't even allow me in the room when she's having the lab work done. she's 9 1/2 years old. ywellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2000 Report Share Posted June 27, 2000 Hi, Glad to hear that Karl had a nice time at camp Too much fun does the same thing to , sometimes. If he's overactive or too busy, he has an increase in symptoms and achiness for a few days. And is more tired than usual. But sometimes it's worth it, to him. Aimee, I'm looking forward to seeing if you get any replies to your note. My son doesn't like the way the actual blood drawing feels, either. And he also doesn't like the feeling of the tourniquet tied tightly around his arm, to help the veins stick out better. He says it's sore and throbs and is uncomfortable. Not the actual needle poke, itself. We tried Emla cream a few years ago. For him, it didn't really help much. I thought perhaps it was an emotional wariness, like some people just have a phobia of needles, but as he's gotten older and better able to verbalize he's described the two parts mentioned above as being the worst thing about a blood test. I'm glad it's only once a month, now. He used to need labs twice a month, sometimes more often, when he was younger. Take care, Georgina ssahm@... wrote: > > Hi from Karl's mom,(systemic JRA, age 9) > > I am so grateful for the info I have been getting here. Karl went to > camp and had a great time but as I expected it wore him out and he > spiked high fevers and a rash for three days after his return. We > raised his steroid dosage again for a week and now we are bringing it > back down. What a juggling act. His Doctor (in New Orleans) wants > to raise the methotrexate rather than the steroids. Waiting for > blood tests. He is tired all of the time and stiff everywhere. > > I need some advice regarding blood tests. Karl hates them and throws > a fit everytime we have to have blood drawn. We tried EMLA and that > helped the stick but he doesn't like the feeling of the blood being > drawn out, says it burns. > > Any advice? > > Aimee Moles Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2001 Report Share Posted January 1, 2001 Hi Aimee, I didn't get to read this message till just now. I just wanted to tell you that I'm really happy that Karl has been able to reduce the prednisone to just 4mgs! I know how hard it can be, so I just wanted to say .... that's terrific. Josh takes 15mgs of MTX a week, too. Does Karl need to take any NSAIDs? Just wondering. Take care, Georgina PS ... Happy New Year Aimee Moles wrote: > > Merry Christmas to everyone! Welcome to . I have a son with > systemic JRA also. He was nine when diagnosed almost a year ago. He > is probably a medium level of severity. He also started with high > fevers spiking 2X a day and had the pink rash on his legs that came > and went with the fever. The joint pain traveled almost daily. > > We were lucky though and the pediatricians and an E.R. doc recognized > it within a week and sent him to a pediatric rheumatologist who > immediately put him on prednisone and methotrexate. We are gradually > decreasing the prednisone and are down to 4 mg (yeah!!) We are > increasing the methotrexate and he takes six tablets now. He has > some mild hair loss (had a whole lot of hair anyhow) and a lot of > fatigue but almost no pain these days. He goes to bed early and > tires before other kids but rarely misses school and any other fun > activities. > > Karl did have and still does have some anemia. That is often part of > the disease and in fact is sort of a hallmark of systemic JRA. > > This group has been a godsend to us. i am almost never surprised by > anything that occurs because I have read it here before. I worry a > lot less than I might have if I had no information. > > We are still hopefull for even a medicated remission soon. > > Aimee (Karl's mom) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2001 Report Share Posted January 25, 2001 Hi Aimee, Sorry I haven't written sooner. I'm finally getting all caught up again. I know how you must have felt when Karl started getting sick again. Same here. I sure hope things are settling down a little by now. How's he feeling? Sorry. I have no idea what that I:t ratio means. Have you found out yet? If so, let us all know, okay? Take care, Georgina Aimee Moles wrote: > > , > > Thanks for the reminder about the doctors. You are right, they are > being paid. Got Karl's bloodwork back today. Unfortunately the > fever was the beginning of a flare not a virus. Yuck. Sed rate up > again as is the white count and all of the other ugly stuff. Haven't > heard from the doctor yet but I'm sure we will be on pred for a while > longer. > > Anyone know what an I:t ratio is? Does it have something to do with > infection? Saw it on the CBC but haven't talked to the doctor yet. > > As I have said before, I'm probably less devastated for having heard > that this is typical. Bob, vent away. So sorry to hear that things > are so rough. I am ever grateful for the more moderate symptoms we > have and the great response to medication. > > Aimee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2001 Report Share Posted January 26, 2001 -Georgina, Thanks for the reply. We are keeping you very busy these days! I:T ratio has to do with symptoms of infection in the blood work but I never found out what it is a ratio of. Our lab always assumes that karl has infection because of his high white count and sed rate. Therefore they are looking for s/s of infection I guess. Thinking of you from one worn out mom to another. Aimee -- In @y..., Georgina <gmckin@g...> wrote: > Hi Aimee, > > Sorry I haven't written sooner. I'm finally getting all caught up again. > I know how you must have felt when Karl started getting sick again. Same > here. I sure hope things are settling down a little by now. How's he > feeling? > > Sorry. I have no idea what that I:t ratio means. Have you found out yet? > If so, let us all know, okay? > > Take care, > Georgina > > Aimee Moles wrote: > > > > , > > > > Thanks for the reminder about the doctors. You are right, they are > > being paid. Got Karl's bloodwork back today. Unfortunately the > > fever was the beginning of a flare not a virus. Yuck. Sed rate up > > again as is the white count and all of the other ugly stuff. Haven't > > heard from the doctor yet but I'm sure we will be on pred for a while > > longer. > > > > Anyone know what an I:t ratio is? Does it have something to do with > > infection? Saw it on the CBC but haven't talked to the doctor yet. > > > > As I have said before, I'm probably less devastated for having heard > > that this is typical. Bob, vent away. So sorry to hear that things > > are so rough. I am ever grateful for the more moderate symptoms we > > have and the great response to medication. > > > > Aimee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2001 Report Share Posted March 13, 2001 Aimee did have bad teeth so bad she had abcesses bad we had to go to a special dentist and she set up melissa to go through surgery ASAP had all her teeth taken out at the age of 4 or 5 i think once those teeth were out 2 hours later she was running and playing and was FINALLY eating lolololol she has never had a cavity since and her teeth came in all straight shes 13 now and i am very happy we did this Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2001 Report Share Posted March 21, 2001 Hi Aimee, Sorry to hear about this setback. Hope the appt goes okay and that the lab results are still within a decent range. And I hope that Karl starts to feel better soon, too. So often, as soon as things start looking up, there it is: another reminder that the JRA is still lingering in the shadows. What a way to pass the one year anniversary : ( Take care, Georgina Thanks for the reply. We have a doctors appt. tommorrow in New Orleans. I was expecting another " everything looks great, lets reduce the meds " but Karl broke out in that awful rash again last night and is having some joint pain and fatigue again. He looks a little anemic to me. I guess the blood work will show that. The Stills rash is so funny the way it comes and goes. Last night it was all over his thighs, wrists, and arms and this morning it had disappeared. It always seems to pop up at night. I haven't seen it on him since last July though so I am worried and dissapointed. I hope his blood work shows only a little increase in inflammation. It has been exactly a year since he first got sick. I will let you know how it goes. Many good thoughts to everyone. Aimee Moles Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2003 Report Share Posted May 28, 2003 Aimee- Excellent news!! I hope it continues. Diane (, 4, pauci) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2003 Report Share Posted May 28, 2003 Hi Aimee, Incredible news!!! I hope it lasts forever. Becki and 4systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2003 Report Share Posted May 28, 2003 What wonderful news. That gives us all hope. We have always found that n tires easily for her age. (n, 14, systemic since age 10) Karl Just wanted to share our news! Karl (12, systemic since age 9) is in unmedicated remission. oo! We are off of everything. He still seems to get tired more often than his friends. Not sure what that is about but we beat the odds.His Dr. said that once he had been ill for over a year, it usually doesn't go away. The Dr. is excited too.Aimee (Karl's mom)To leave this mailing list, send request to: -unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2003 Report Share Posted May 28, 2003 Aimee (Karl's mom) ALL RIGHT! it is always so great to hear news like that! Go Karl! HPTA Uncle Rusty Limbs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2003 Report Share Posted August 30, 2003 What wonderful news. I'm so happy for you and Patty. My prayers are with both of you as well as the donors family. What a precious gift they have given. I know that they are suffering now but only hope that they will understand what a special person received their precious gift. Tell Patty I am thinking of her. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2003 Report Share Posted September 7, 2003 Thank you so much for adding the new pictures. She looks great. I hope all continues to go well for her. You take care and let her know I am thinking of her. Again, thanks for taking the time to keep us posted. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2007 Report Share Posted December 20, 2007 being a rare poster but reader mostly, i dare say it is a pity Karl (or Ken) would not take part to this group. I often do not have the time to read the large no of posts but will never miss reading posts from Karl (and Ken and Lori). Their posts over the years have offered info on latest developments that can hardly be found in one place like this one. This has helped me at times having a more informed standpoint when discussing new treatment alternatives with the ENT and immunology doctors treating my case. all the best. Anne Karl Karl, I for one think it's a huge loss for you to leave this group. But if you need a break you know I understand that.I hope you'll consider coming back at a later date.Lori Support the World Aids Awareness campaign this month with for Good Quote Link to comment Share on other sites More sharing options...
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