Guest guest Posted October 21, 2006 Report Share Posted October 21, 2006 Hello, I was wondering how many parents w/ younger children w/ either poly or pauci articular JRA also have dealt with frequent bouts of strep? Lexi had vaginal strep starting in about July (with no fever or warning signs until I saw her skin while getting ready to go to the pool!!!), then had regular strep again about mid August, again no warning signs, another bout of strep in late sept. , and now I just brought her into the ped yesterday to double check why she was having a flare of her ankles hurting and low and behold - strep again!!!!!! She NEVER complains of her throat hurting, no fever, and we only find this out when we go in for a regular checkup or something else!!! Her tonsils are also HUGE , I can't believe her uvula can even move - but the rheumy conferred w/ the ped on the phone yesterday and he said that w/ taking immuno-suppressant meds (Enbrel), if we remove her tonsils that would leave her even more susceptible, so I'm not sure what to think! They put her on antibiotic again, and in 10-12 days we are to go back into the doc to have her re-swabbed to see if she still reports as positive, and if she does they will take blood work (AGAIN, POOR KIDDO!!) to see if she is just naturally a " strep carrier " . Does anyone know exactly what this means for her or have experience with this? Ontop of JRA and hypothyroidism, I'm not sure what else we're going to continue to find with her!!!! Arvada mom to Lexi, 5 (either pauci or polyarticular JRA dx 1/05) ________________________________________________________________________ Check out the new AOL. Most comprehensive set of free safety and security tools, free access to millions of high-quality videos from across the web, free AOL Mail and more. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2006 Report Share Posted October 24, 2006 Hi, Have definately had my fair share of strep with two kids bouncing off the walls. To have the tonsils removed does require some thinking and weighing the pros and cons. at age 4 1/2 -5 on MTX and Enbrel developed enlarged tonsils ,and every time he caught some mild cold, they would swell to the point of a dime size opening.He would have alot of trouble swallowing his food and oral meds. I took him to the largest ENT clinic in my city and the meds scared the Dr to death. Wound up at Vanderbilt Childrens Hospital with a wonderful Dr. 's ped rheumy at Vanderbilt did not want to rock the boat( was in remission with medication).Dr. Lovell at Cincinatti Children's(who did the Enbrel trials on kids)wanted the little boogers taken out.Anytime there is an infection the immune system could go crazy again.In his case it turned out his adnoids where chronicly infected and the root of all evil.The morning of surgery she could see them in his throat,which is not normal. Removing the tonsils will not prevent strep but should decrease the amount of strep. I haven't seen an increase in systemic wide infections since the operation.His issues are with his skin. Personaly,I think the whole thing about tonsils and how important they are is a mixed decision. Our visit with the second ENT was an hour alone with the Dr. just going over 's health history. For us it just felt like the right decision. Hugs Becki and 8 systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2006 Report Share Posted October 24, 2006 Thanks for that input. We also are looking into whether Lexi has sleep apnea possibly, and so that will also help us make a decision too! She had her adenoids removed about 2 and a half years ago (right before we got the dx of JRA), as well as ear tubes. They are concerned that her tonsils are so big, she wakes multiple times a night consistently, and she snores some, so we're really wondering about apnea. So the journey for answers goes on (sigh)... Re: strep carrier???? Hi, Have definately had my fair share of strep with two kids bouncing off the walls. To have the tonsils removed does require some thinking and weighing the pros and cons. at age 4 1/2 -5 on MTX and Enbrel developed enlarged tonsils ,and every time he caught some mild cold, they would swell to the point of a dime size opening.He would have alot of trouble swallowing his food and oral meds. I took him to the largest ENT clinic in my city and the meds scared the Dr to death. Wound up at Vanderbilt Childrens Hospital with a wonderful Dr. 's ped rheumy at Vanderbilt did not want to rock the boat( was in remission with medication).Dr. Lovell at Cincinatti Children's(who did the Enbrel trials on kids)wanted the little boogers taken out.Anytime there is an infection the immune system could go crazy again.In his case it turned out his adnoids where chronicly infected and the root of all evil.The morning of surgery she could see them in his throat,which is not normal. Removing the tonsils will not prevent strep but should decrease the amount of strep. I haven't seen an increase in systemic wide infections since the operation.His issues are with his skin. Personaly,I think the whole thing about tonsils and how important they are is a mixed decision. Our visit with the second ENT was an hour alone with the Dr. just going over 's health history. For us it just felt like the right decision. Hugs Becki and 8 systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2006 Report Share Posted October 25, 2006 If she is a strep carrier, she will always swab positive and no amount of antibiotics are going to get rid of it, from what I understand, cause I am a strep carrier too. When tonsils are so full of disease like that, they really need to go. One it will make your daughter feel better, many have had them removed and no worse for it but actually healthier, and if she is a carrier she has potential to make others sick and then she can get a secondary infection. I would get an appt with an ENT to have them check them out. My daughter had hers out before she was diagnosed with JRA so I can't tell you anything on the JRA side, but it certainly made her sleep better. You just can't get good rest when you have huge tonsils blocking your airway. Poor kid! e, mom to joe 19 poly + lupus redfeather03@... wrote: Hello, I was wondering how many parents w/ younger children w/ either poly or pauci articular JRA also have dealt with frequent bouts of strep? Lexi had vaginal strep starting in about July (with no fever or warning signs until I saw her skin while getting ready to go to the pool!!!), then had regular strep again about mid August, again no warning signs, another bout of strep in late sept. , and now I just brought her into the ped yesterday to double check why she was having a flare of her ankles hurting and low and behold - strep again!!!!!! She NEVER complains of her throat hurting, no fever, and we only find this out when we go in for a regular checkup or something else!!! Her tonsils are also HUGE , I can't believe her uvula can even move - but the rheumy conferred w/ the ped on the phone yesterday and he said that w/ taking immuno-suppressant meds (Enbrel), if we remove her tonsils that would leave her even more susceptible, so I'm not sure what to think! They put her on antibiotic again, and in 10-12 days we are to go back into the doc to have her re-swabbed to see if she still reports as positive, and if she does they will take blood work (AGAIN, POOR KIDDO!!) to see if she is just naturally a " strep carrier " . Does anyone know exactly what this means for her or have experience with this? Ontop of JRA and hypothyroidism, I'm not sure what else we're going to continue to find with her!!!! Arvada mom to Lexi, 5 (either pauci or polyarticular JRA dx 1/05) __________________________________________________________ Check out the new AOL. Most comprehensive set of free safety and security tools, free access to millions of high-quality videos from across the web, free AOL Mail and more. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2006 Report Share Posted October 25, 2006 My oldest one (no JRA) had recurrent bouts of strep until we had her tonsils removed. She was 4 at the time and has had only one case of strep since, when she was about 13. Taking the tonsils out really helped, as she also got scarlet fever every time she had strep. She had a case every month for nearly a year before the operation. Hope Lexi is feeling better, Michele (19,spondy) ________________________________ From: [mailto: ] On Behalf Of bound for london Sent: Wednesday, October 25, 2006 4:33 AM Subject: Re: strep carrier???? If she is a strep carrier, she will always swab positive and no amount of antibiotics are going to get rid of it, from what I understand, cause I am a strep carrier too. When tonsils are so full of disease like that, they really need to go. One it will make your daughter feel better, many have had them removed and no worse for it but actually healthier, and if she is a carrier she has potential to make others sick and then she can get a secondary infection. I would get an appt with an ENT to have them check them out. My daughter had hers out before she was diagnosed with JRA so I can't tell you anything on the JRA side, but it certainly made her sleep better. You just can't get good rest when you have huge tonsils blocking your airway. Poor kid! e, mom to joe 19 poly + lupus redfeather03@... <mailto:redfeather03%40aol.com> wrote: Hello, I was wondering how many parents w/ younger children w/ either poly or pauci articular JRA also have dealt with frequent bouts of strep? Lexi had vaginal strep starting in about July (with no fever or warning signs until I saw her skin while getting ready to go to the pool!!!), then had regular strep again about mid August, again no warning signs, another bout of strep in late sept. , and now I just brought her into the ped yesterday to double check why she was having a flare of her ankles hurting and low and behold - strep again!!!!!! She NEVER complains of her throat hurting, no fever, and we only find this out when we go in for a regular checkup or something else!!! Her tonsils are also HUGE , I can't believe her uvula can even move - but the rheumy conferred w/ the ped on the phone yesterday and he said that w/ taking immuno-suppressant meds (Enbrel), if we remove her tonsils that would leave her even more susceptible, so I'm not sure what to think! They put her on antibiotic again, and in 10-12 days we are to go back into the doc to have her re-swabbed to see if she still reports as positive, and if she does they will take blood work (AGAIN, POOR KIDDO!!) to see if she is just naturally a " strep carrier " . Does anyone know exactly what this means for her or have experience with this? Ontop of JRA and hypothyroidism, I'm not sure what else we're going to continue to find with her!!!! Arvada mom to Lexi, 5 (either pauci or polyarticular JRA dx 1/05) __________________________________________________________ Check out the new AOL. Most comprehensive set of free safety and security tools, free access to millions of high-quality videos from across the web, free AOL Mail and more. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2006 Report Share Posted October 25, 2006 Just read this one - sorry! With my youngest, she had sleep apnea. When we went in for our first appointment with the ENT for her the ped suggested we bring a sleep tape. I recorded her when she was in her deepest sleep (she too woke up frequently during the night and it caused problems in school even. She was in first grade at the time.) and when the ENT heard it she had no doubt that Jenn had sleep apnea and took out tonsils and adenoids. It helped immediately and she began to sleep through the night and felt better in school and everything. All I did to make the tape was use a kid's tape recorder and a cassette, nothing fancy. Good luck, Michele ( 19, spondy) ________________________________ From: [mailto: ] On Behalf Of redfeather03@... Sent: Tuesday, October 24, 2006 10:52 PM Subject: Re: strep carrier???? Thanks for that input. We also are looking into whether Lexi has sleep apnea possibly, and so that will also help us make a decision too! She had her adenoids removed about 2 and a half years ago (right before we got the dx of JRA), as well as ear tubes. They are concerned that her tonsils are so big, she wakes multiple times a night consistently, and she snores some, so we're really wondering about apnea. So the journey for answers goes on (sigh)... Re: strep carrier???? Hi, Have definately had my fair share of strep with two kids bouncing off the walls. To have the tonsils removed does require some thinking and weighing the pros and cons. at age 4 1/2 -5 on MTX and Enbrel developed enlarged tonsils ,and every time he caught some mild cold, they would swell to the point of a dime size opening.He would have alot of trouble swallowing his food and oral meds. I took him to the largest ENT clinic in my city and the meds scared the Dr to death. Wound up at Vanderbilt Childrens Hospital with a wonderful Dr. 's ped rheumy at Vanderbilt did not want to rock the boat( was in remission with medication).Dr. Lovell at Cincinatti Children's(who did the Enbrel trials on kids)wanted the little boogers taken out.Anytime there is an infection the immune system could go crazy again.In his case it turned out his adnoids where chronicly infected and the root of all evil.The morning of surgery she could see them in his throat,which is not normal. Removing the tonsils will not prevent strep but should decrease the amount of strep. I haven't seen an increase in systemic wide infections since the operation.His issues are with his skin. Personaly,I think the whole thing about tonsils and how important they are is a mixed decision. Our visit with the second ENT was an hour alone with the Dr. just going over 's health history. For us it just felt like the right decision. Hugs Becki and 8 systemic Quote Link to comment Share on other sites More sharing options...
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