Guest guest Posted February 14, 2004 Report Share Posted February 14, 2004 In a message dated 2/14/04 12:22:49 AM Eastern Standard Time, smithkim@... writes: << Logan was dx with reactive arthritis,,at first. Then the pain continued longer than the expected time,,,so they changed it to poly. He had an ASO Titre of 1250,at the beginning of all this(normal is 1-200)so thats why they thought he had reactive. He kept testing positive for strep,,even though they had him on peniccillin prophalaxis,,so they removed his tonsils. He has now been seen by a rheumy,an ortho,,and a genetics. >> Hi Kim: Caitlin's illness started with an undiagnosed strep. There is a certain strain (rare) that causes strep, but shows no symptoms to the person with it. Sneaks in and does it's damage:( She is still not officially dx'd. Initially they were thinking Rheumatic Fever, Strep Induce Arthritis (Reactive Arthritis) or Systemic Onset JRA. What was the amount of time that passed when they thought it had gone beyond the Reactive Arthritis? What is his ASO Titer now? How long did it take to come down from 1250? Did they initially thought he had Acute Rheumatic Fever? If so, how did they rule that out? How long was he on prophylactic antibiotics? How often and what dose? Is he still on prophylactic antibiotics? If so, what type, how much of a dosage and how many times during the day? Did he ever have the Penicillin injections? Why did they decide to take his tonsils out? How is your son today? Any information would be greatly appreciated. Thank you. Take care. Patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2004 Report Share Posted February 16, 2004 What was the amount of time that passed when they thought it had gone beyond the Reactive Arthritis? What is his ASO Titer now? How long did it take to come down from 1250? Did they initially thought he had Acute Rheumatic Fever? If so, how did they rule that out? How long was he on prophylactic antibiotics? How often and what dose? Is he still on prophylactic antibiotics? If so, what type, how much of a dosage and how many times during the day? Did he ever have the Penicillin injections? Why did they decide to take his tonsils out? How is your son today? ******************************************************* I believe the amount of time was 6 months. He was dx in Nov. of 2001. He was 4. I'm not sure what his ASO is right now,,,the last time they checked it was 900. He has another rheumy appoint on March 24,,so maybe they will check it again. His sed rate finally went down to 10,,after 3 years of it being elevated. No,,they didn't think he had rheumatic fever. He is still on prophylactic antibiotics. I'm not sure how long he will be on those. He is on Penicillin,,3 times a day. He has never had the penicillin injection,,,and I have never even heard of it. They decided to take out his tonsils,because even on the antibiotic,,he kept getting strep,,and with every strep infection,,his arthritis would flare. It was a very long year,last year,,and I just glad that it is behind us. Today,Logan is doing so-so,,,. I feel like the majority of his pain comes from his connective tissue disorder. His pains follow a particular pattern,,pain in his feet every morning,,pain in his hands every day,,while doing his writing,,and pain in his feet and knees every night,,with the occasional back ache here and there. Whenever the pain is so bad that he can't actually function,,then I think it is the arthritis. I don't know if that is the case or not,,but I just have a feeling that most days,the pain is from the connective tissue disorder. I am going to call the genetics Dr,tomorrow,,and see if we can get in to see her. Hopefully they can do something for Logan,,because his quality of life isn't real great,right now. Logan has always had special needs. He has hypotonia,,mild cp,,and he has Aspergers,,so this is just another one of those bumps in the road. I hate this stupid disease,,and I feel like Logan has gotten a raw deal,,,but I just have to try to accept that this is his life,,and live it to the best that we know how. I hope this helped you,,,and I hope I wasn't too long winded. Good luck Kim and Logan 6 poly and connective tissue disorder,,etc. etc Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2004 Report Share Posted February 17, 2004 Hi Kim, It was encouraging to hear that Logan's SED rate is down in the normal ranges nowadays. I am so sorry, though, to hear that he is continuing to have some pain just about every day! I hope that when you guys see the rheumatologist that you'll be able to come up with a plan to address this. You probably saw all the posts here in recent weeks about parrafin wax baths. I wonder if that might help Logan any? His hands and feet could be dipped and it might provide some relief. Josh loves using his. Maybe cold works better for him, though? Oh, I just hope you find something that works for your little guy. What meds is he taking for arthritis, right now? Hugs for you and Logan, Aloha, Georgina Kim D wrote: > I believe the amount of time was 6 months. He was dx in Nov. of 2001. He > was 4. I'm not sure what his ASO is right now,,,the last time they > checked it was 900. He has another rheumy appoint on March 24,,so maybe > they will check it again. His sed rate finally went down to 10,,after 3 > years of it being elevated. No,,they didn't think he had rheumatic fever. > He is still on prophylactic antibiotics. I'm not sure how long he > will be on those. He is on Penicillin,,3 times a day. He has never had > the penicillin injection,,,and I have never even heard of it. > They decided to take out his tonsils,because even on the antibiotic,,he > kept getting strep,,and with every strep infection,,his arthritis would > flare. It was a very long year,last year,,and I just glad that it is > behind us. > Today,Logan is doing so-so,,,. I feel like the majority of his pain > comes from his connective tissue disorder. His pains follow a particular > pattern,,pain in his feet every morning,,pain in his hands every > day,,while doing his writing,,and pain in his feet and knees every > night,,with the occasional back ache here and there. Whenever the pain > is so bad that he can't actually function,,then I think it is the > arthritis. I don't know if that is the case or not,,but I just have a > feeling that most days,the pain is from the connective tissue disorder. > I am going to call the genetics Dr,tomorrow,,and see if we can get in to > see her. Hopefully they can do something for Logan,,because his quality > of life isn't real great,right now. > Logan has always had special needs. He has hypotonia,,mild cp,,and > he has Aspergers,,so this is just another one of those bumps in the > road. I hate this stupid disease,,and I feel like Logan has gotten a raw > deal,,,but I just have to try to accept that this is his life,,and live > it to the best that we know how. > I hope this helped you,,,and I hope I wasn't too long winded. Good > luck > > Kim and Logan 6 poly and connective tissue disorder,,etc. etc Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 I am so sorry, though, to hear that he is continuing to have some pain just about every day! You probably saw all the posts here in recent weeks about parrafin wax baths. I wonder if that might help Logan any? ******************************* Georgina, Thanks for your concern. There is no way on earth that Logan would agree to a paraffin wax. He is very sensory defensive. He recently got fitted for some new braces,,(for his feet) and I thought it was going to drive him crazy. He told the PT,that " he felt like she was pouring hot glue on his feet,,and he really did not like it one bit ! " Then today we went back to pick them up,,and all of a sudden he can't walk,,this feels weird,,its too tight,,too narrow,,too hard,,too everything. We just have to tell him to just walk around a little bit and he will get used to them. Same way with new glasses. I always plan a trip to the Science museum,right after he gets new glasses,,so he'll forget about them. ANYWAY,,,whew went off on a rabbit trail,huh? I'm hoping the rheumy appointment will bring him some relief,,although it usually doesn't,,,they are NOT aggressive at all. Right now he is just on the Naproxen,,and the penicillin prophylaxis. I don't even know what to make of his pain,,,my pediatrician says that kids never fake pain,,but sometimes,,I do wonder. Then those are the times,,that he will go into a huge flare,,and then I feel really bad. So,,anyway,,,enough about us,,how is Josh doing? Is his sister still taller than him,,or not? I know that must be hard on him. I think being shorter is harder on boys,than girls,,,for some reason. Love ya, 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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