Guest guest Posted September 13, 2009 Report Share Posted September 13, 2009 Becki, Thanks for sharing about .? It is so encouraging to the many kids that struggle with so much.? I do not think of Jaye's flares as anything major but they are there on?a regular basis.? This past week she has had a ear infection and sinus infection that have caused even more trouble. This past week for the first time I can think of since we realized Jaye was traveling down the road with Arthur she actually began to grumble about it. At the age of 15 I think she has the right to grumble. Yet she will only complain to me when we are alone and that is quite alright with me.? I grumble and share my frustrations about her travels with Arthur then she does and I love this list to be able to do it.? And even more I love this list because parents like you are willing to stick around, give words of wisdom and encouragement to us.? I do not expect Jaye to ever play football but we do expect her to be able to walk more then a block or two at a time. She will get back to where she feels better soon. There are many kids on this list that are doing well and I am confident that Jaye will get there as well in time.? Thanks again for sharing. Veri & Jaye 15 poly Larson Hi all, ???? I know alot of heartbreaking things with our sisters have been happening but wanted to share a happy note.Old timers know Larson was diagnosed with SOJRA june of 2000.Newbies or ones that do not know little his SED rate was a 109 less then 14 days from the bike wreck at 2 yrs old.The first 5 days was a normal bike wreck.Things QUICKLY got much,much worse.We took him to our ped every day but then went to Nashville who had connections with Vanderbuilt Childrens Hospital.He was tentively(sp) diagnosed?with SoJRA.Put on large doses of Prelone.Three weeks later when his official 6 weeks were up they started MTX.Every month they increased the dose so by 3 1/2 he was takeing 25mg sub-q.They made him suffer with steroid tapers and flairs but it let them know the MTX was not doing it.At the time you couldn't get Enbrel due to a very long waiting list.They maxed him out on 200mg Plaquenil,still age 3 and he was also taking 300mg Ibuprofen 3x daily all at 3.The high doses of steroids put alot of weight on.The max MTX,Plaquenil and Ibuprofen helped get him finaly below 9 mg prelone but had resistant lft ankle.Had it drained and injected 2x at 4 yrs old.Still couldn't get below 6mg Prelone.Luckily all the nasty systemic symptoms had been gone since April 01.Finaly heard about?about a 3yr safety study for Enbrel. qualified and 9 days after the first shot he was walking/RUNNING for the first time.Due to the lack of systemic symptoms it was like a Poly child but is NOT Poly he is and always will be systemic onset.He went into a medicated remission and at age six they tapered him off his MTX only to flare 2 1/2 months on 2mg MTX.This at 6 and no more remission.Gained it back but the docs were slow cause he continued to improve. is on the same doses at 11 as he was on 6 and 30 months at least of nothing.1 yr of nothing to achieve medicated remission and come Oct 1 18 months of nothing.Shoot I have confused myself but 's dream since age 6 is to play football.He is playing football for the first time.He is a defensive tackle and nose tackle,and offensive tackle and guard and punter.He is 5 " 120 and got the crap beat out of him.Them 11-12 yr old 200+ boys ganged up on him and sent him flying through the air.He cried but demanded to go back out and made 3 defensive tackles.Football is his dream and he is living it.Yeah it is scarey but so far the worst was tonite getting hit in the side and back by giants and getting his hands and arms stepped on by giants.HE IS LOVEING IT and his new head coach is going to teach him how to take down a monster man Mon. at practice.GO bEAST!!! PROBABLY NEEDING A NICE,HOT,LONG SHOWER IN THE AM ?bECKI AND dAVID 11 SOJRA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2009 Report Share Posted September 14, 2009 Love the update! As an " old-timer " I do well remember many of 's struggles. Thanks for sharing his triumphs! Glad to hear he is living his dream even though I can well imagine how mom feels watching from the stands! Michele ( 22, spondy) ________________________________ From: [mailto: ] On Behalf Of Becki Larson Sent: Sunday, September 13, 2009 1:13 AM Subject: Larson Hi all, I know alot of heartbreaking things with our sisters have been happening but wanted to share a happy note.Old timers know Larson was diagnosed with SOJRA june of 2000.Newbies or ones that do not know little his SED rate was a 109 less then 14 days from the bike wreck at 2 yrs old.The first 5 days was a normal bike wreck.Things QUICKLY got much,much worse.We took him to our ped every day but then went to Nashville who had connections with Vanderbuilt Childrens Hospital.He was tentively(sp) diagnosed with SoJRA.Put on large doses of Prelone.Three weeks later when his official 6 weeks were up they started MTX.Every month they increased the dose so by 3 1/2 he was takeing 25mg sub-q.They made him suffer with steroid tapers and flairs but it let them know the MTX was not doing it.At the time you couldn't get Enbrel due to a very long waiting list.They maxed him out on 200mg Plaquenil,still age 3 and he was also taking 300mg Ibuprofen 3x daily all at 3.The high doses of steroids put alot of weight on.The max MTX,Plaquenil and Ibuprofen helped get him finaly below 9 mg prelone but had resistant lft ankle.Had it drained and injected 2x at 4 yrs old.Still couldn't get below 6mg Prelone.Luckily all the nasty systemic symptoms had been gone since April 01.Finaly heard about about a 3yr safety study for Enbrel. qualified and 9 days after the first shot he was walking/RUNNING for the first time.Due to the lack of systemic symptoms it was like a Poly child but is NOT Poly he is and always will be systemic onset.He went into a medicated remission and at age six they tapered him off his MTX only to flare 2 1/2 months on 2mg MTX.This at 6 and no more remission.Gained it back but the docs were slow cause he continued to improve. is on the same doses at 11 as he was on 6 and 30 months at least of nothing.1 yr of nothing to achieve medicated remission and come Oct 1 18 months of nothing.Shoot I have confused myself but 's dream since age 6 is to play football.He is playing football for the first time.He is a defensive tackle and nose tackle,and offensive tackle and guard and punter.He is 5 " 120 and got the crap beat out of him.Them 11-12 yr old 200+ boys ganged up on him and sent him flying through the air.He cried but demanded to go back out and made 3 defensive tackles.Football is his dream and he is living it.Yeah it is scarey but so far the worst was tonite getting hit in the side and back by giants and getting his hands and arms stepped on by giants.HE IS LOVEING IT and his new head coach is going to teach him how to take down a monster man Mon. at practice.GO bEAST!!! PROBABLY NEEDING A NICE,HOT,LONG SHOWER IN THE AM bECKI AND dAVID 11 SOJRA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2009 Report Share Posted September 15, 2009 Hi Becky, I am so happy to hear that is able to play football! My healthy son plays football, and sometimes I have to close my eyes b/c I am so fearful he is going to get hurt. I always say a prayer before that no one gets hurt! I love hearing stories about systemic kids that are now doing well! It gives me hope. Sophie 's mom, systemic jra > > Hi all, > I know alot of heartbreaking things with our sisters have been happening but wanted to share a happy note.Old timers know Larson was diagnosed with SOJRA june of 2000.Newbies or ones that do not know little his SED rate was a 109 less then 14 days from the bike wreck at 2 yrs old.The first 5 days was a normal bike wreck.Things QUICKLY got much,much worse.We took him to our ped every day but then went to Nashville who had connections with Vanderbuilt Childrens Hospital.He was tentively(sp) diagnosed with SoJRA.Put on large doses of Prelone.Three weeks later when his official 6 weeks were up they started MTX.Every month they increased the dose so by 3 1/2 he was takeing 25mg sub-q.They made him suffer with steroid tapers and flairs but it let them know the MTX was not doing it.At the time you couldn't get Enbrel due to a very long waiting list.They maxed him out on 200mg Plaquenil,still age 3 and he was also taking 300mg Ibuprofen 3x > daily all at 3.The high doses of steroids put alot of weight on.The max MTX,Plaquenil and Ibuprofen helped get him finaly below 9 mg prelone but had resistant lft ankle.Had it drained and injected 2x at 4 yrs old.Still couldn't get below 6mg Prelone.Luckily all the nasty systemic symptoms had been gone since April 01.Finaly heard about about a 3yr safety study for Enbrel. qualified and 9 days after the first shot he was walking/RUNNING for the first time.Due to the lack of systemic symptoms it was like a Poly child but is NOT Poly he is and always will be systemic onset.He went into a medicated remission and at age six they tapered him off his MTX only to flare 2 1/2 months on 2mg MTX.This at 6 and no more remission.Gained it back but the docs were slow cause he continued to improve. is on the same doses at 11 as he was on 6 and 30 months at least of nothing.1 yr of nothing to achieve medicated remission and come Oct 1 18 months of > nothing.Shoot I have confused myself but 's dream since age 6 is to play football.He is playing football for the first time.He is a defensive tackle and nose tackle,and offensive tackle and guard and punter.He is 5 " 120 and got the crap beat out of him.Them 11-12 yr old 200+ boys ganged up on him and sent him flying through the air.He cried but demanded to go back out and made 3 defensive tackles.Football is his dream and he is living it.Yeah it is scarey but so far the worst was tonite getting hit in the side and back by giants and getting his hands and arms stepped on by giants.HE IS LOVEING IT and his new head coach is going to teach him how to take down a monster man Mon. at practice.GO bEAST!!! PROBABLY NEEDING A NICE,HOT,LONG SHOWER IN THE AM > bECKI AND dAVID 11 SOJRA > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2011 Report Share Posted February 14, 2011 Thank you for giving us all hope! (n, 22, systemic and MAS survivor and never in a remission Sent from my iPhone On Feb 14, 2011, at 8:47 PM, Becki Larson <sojramom@...> wrote: > Hi everyone, > I don't post often anymore but read a lot and pray for our new comers. > Just a brief script is 12 1/2 and was tentatively diagnosed with SoJRA a > month before his 3rd birthday after only 3 weeks. The whole kit and kaboodle > came on fast and strong.His SED was over 120 and WBC over 30,0000. His first > visit he was contracted in the chair position,burning up with a fever and the > description of the stills rash was nothing compared to his whole body being > covered in hives and welts. > Fast forward to age 4 you could't get Enbrel due to such a high demand and a > huge shortage.From this list I heard of a phase 4 clinical study at Cincinnati > Childrens and went for it.He met the criteria and got to start Enbrel when > thousands could not. After 9 days the miracle happened. Maxed out on the anti > Malaria drug Plaquenil we dropped it, a long 18 months of pred very slowely > discontinued.His maxed out dose of NSAID weaned away and then the 25mg MTX > slowly tapered. He made it to 2.5mg MTX sub q for 2 months and 2 weeks and both > wrists lost almost all ROM and some ankle involvement.OH,the resistant lft ankle > got drained and injected twice in 2 1/2 months before Enbrel. > We started our journey all over again putting once again in the hands > of Dr. Lovell at Cincinnati Childrens.Never left him until Dr Graham from > Cincy came home to Nashville.After about 2 yrs Dr. Graham had see a PA and > once dad found out it was NO MORE we are going back to Cinci.Vanderbilt did get > him off the MTX so last July we thought Dr.Lovell woul'd take him off the > Enbrel. Should have known Dr. Lovell is always in charge of some sort of > research through the NIH and sure enough there was a study on the better > understanding of TNF " S. The study is looking for any kind of markers in the > blood that willl someday let doctors know if a child can come off a TNF > inhibitor or not.We had to wait 6 more months due to protocol after being in a > medicated remission for almost 5 yrs. > Well today was the day. no longer has to take Enbrel shots,he looks > great and feels great and to top it all off I noticed how dirty his jeans were > at the appointment.I questioned him about it and due to having to get up at 4am > he went out side and did summer salts(SP) in the front yard to wake up.He ALSO > gave up 9 vials of blood for research,pictures to prove it. > Please pray and knock on wood because we could no longer pay the $856 a month > for insurance knowing come April 1st it would be over $1000 a month. It is not > Medicaid but TN has a program called Cover Kids BUT you have to be without > insurance for 3 moths.We have until March 31st and it's through BCBS of TN. We > will not have to pay premiums but there are co pays but nothing like the $40 to > see a Dr and the lab demanding $500. > WE have to go back in March,April,May,June,Sept and November and it's a hard > trip at 314 miles each way. > Love to all and always remember things can get better but IT takes time. > Becki and 12 SoJRA aka The Barefoot TN Flash. > > __________________________________________________________ > It's here! Your new message! > Get new email alerts with the free Toolbar. > http://tools.search./toolbar/features/mail/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2011 Report Share Posted February 14, 2011 , I remember when n had MAS and it was a day to day situation. Everyday we took a deep breath and said a prayer.That was a very horrific time for all of us and we were all on pins and needles.I remember crying every day that you reported but the best tears of joy came when n was breathing on her own and starting to stabilize. We have lost so many children from this list due to complications but thinking back on it they go back around 6-8 YRS ago and some even longer then that. I have noticed the list getting smaller and smaller,with less posts so that tells me the treatment is much better and not so many desperate moms and dads,which is a GREAT thing. Becki and 12 yrs sojra 1st week drug free ________________________________ From: Price <bc.price@...> " " < > Sent: Mon, February 14, 2011 11:06:31 PM Subject: Re: Larson Thank you for giving us all hope! (n, 22, systemic and MAS survivor and never in a remission Sent from my iPhone On Feb 14, 2011, at 8:47 PM, Becki Larson <sojramom@...> wrote: > Hi everyone, > I don't post often anymore but read a lot and pray for our new comers. > Just a brief script is 12 1/2 and was tentatively diagnosed with SoJRA a > month before his 3rd birthday after only 3 weeks. The whole kit and kaboodle > came on fast and strong.His SED was over 120 and WBC over 30,0000. His first > visit he was contracted in the chair position,burning up with a fever and the > description of the stills rash was nothing compared to his whole body being > covered in hives and welts. > Fast forward to age 4 you could't get Enbrel due to such a high demand and a > huge shortage.From this list I heard of a phase 4 clinical study at Cincinnati > Childrens and went for it.He met the criteria and got to start Enbrel when > thousands could not. After 9 days the miracle happened. Maxed out on the anti > Malaria drug Plaquenil we dropped it, a long 18 months of pred very slowely > discontinued.His maxed out dose of NSAID weaned away and then the 25mg MTX > slowly tapered. He made it to 2.5mg MTX sub q for 2 months and 2 weeks and both > > wrists lost almost all ROM and some ankle involvement.OH,the resistant lft >ankle > > got drained and injected twice in 2 1/2 months before Enbrel. > We started our journey all over again putting once again in the hands > of Dr. Lovell at Cincinnati Childrens.Never left him until Dr Graham >from > > Cincy came home to Nashville.After about 2 yrs Dr. Graham had see a PA >and > > once dad found out it was NO MORE we are going back to Cinci.Vanderbilt did get > > him off the MTX so last July we thought Dr.Lovell woul'd take him off the > Enbrel. Should have known Dr. Lovell is always in charge of some sort of > research through the NIH and sure enough there was a study on the better > understanding of TNF " S. The study is looking for any kind of markers in the > blood that willl someday let doctors know if a child can come off a TNF > inhibitor or not.We had to wait 6 more months due to protocol after being in a > medicated remission for almost 5 yrs. > Well today was the day. no longer has to take Enbrel shots,he looks > great and feels great and to top it all off I noticed how dirty his jeans were > at the appointment.I questioned him about it and due to having to get up at 4am > > he went out side and did summer salts(SP) in the front yard to wake up.He ALSO > gave up 9 vials of blood for research,pictures to prove it. > Please pray and knock on wood because we could no longer pay the $856 a month > for insurance knowing come April 1st it would be over $1000 a month. It is not > Medicaid but TN has a program called Cover Kids BUT you have to be without > insurance for 3 moths.We have until March 31st and it's through BCBS of TN. We > will not have to pay premiums but there are co pays but nothing like the $40 to > > see a Dr and the lab demanding $500. > WE have to go back in March,April,May,June,Sept and November and it's a hard > trip at 314 miles each way. > Love to all and always remember things can get better but IT takes time. > Becki and 12 SoJRA aka The Barefoot TN Flash. > > __________________________________________________________ > It's here! Your new message! > Get new email alerts with the free Toolbar. > http://tools.search./toolbar/features/mail/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2011 Report Share Posted February 15, 2011 Prayers and Praises coming your way for your family and especially for the Barefoot Tennessee Flash. Veri & Jaye 17 poly Larson Hi everyone, I don't post often anymore but read a lot and pray for our new comers. Just a brief script is 12 1/2 and was tentatively diagnosed with SoJRA a month before his 3rd birthday after only 3 weeks. The whole kit and kaboodle came on fast and strong.His SED was over 120 and WBC over 30,0000. His first visit he was contracted in the chair position,burning up with a fever and the description of the stills rash was nothing compared to his whole body being covered in hives and welts. Fast forward to age 4 you could't get Enbrel due to such a high demand and a huge shortage.From this list I heard of a phase 4 clinical study at Cincinnati Childrens and went for it.He met the criteria and got to start Enbrel when thousands could not. After 9 days the miracle happened. Maxed out on the anti Malaria drug Plaquenil we dropped it, a long 18 months of pred very slowely discontinued.His maxed out dose of NSAID weaned away and then the 25mg MTX slowly tapered. He made it to 2.5mg MTX sub q for 2 months and 2 weeks and both wrists lost almost all ROM and some ankle involvement.OH,the resistant lft ankle got drained and injected twice in 2 1/2 months before Enbrel. We started our journey all over again putting once again in the hands of Dr. Lovell at Cincinnati Childrens.Never left him until Dr Graham from Cincy came home to Nashville.After about 2 yrs Dr. Graham had see a PA and once dad found out it was NO MORE we are going back to Cinci.Vanderbilt did get him off the MTX so last July we thought Dr.Lovell woul'd take him off the Enbrel. Should have known Dr. Lovell is always in charge of some sort of research through the NIH and sure enough there was a study on the better understanding of TNF " S. The study is looking for any kind of markers in the blood that willl someday let doctors know if a child can come off a TNF inhibitor or not.We had to wait 6 more months due to protocol after being in a medicated remission for almost 5 yrs. Well today was the day. no longer has to take Enbrel shots,he looks great and feels great and to top it all off I noticed how dirty his jeans were at the appointment.I questioned him about it and due to having to get up at 4am he went out side and did summer salts(SP) in the front yard to wake up.He ALSO gave up 9 vials of blood for research,pictures to prove it. Please pray and knock on wood because we could no longer pay the $856 a month for insurance knowing come April 1st it would be over $1000 a month. It is not Medicaid but TN has a program called Cover Kids BUT you have to be without insurance for 3 moths.We have until March 31st and it's through BCBS of TN. We will not have to pay premiums but there are co pays but nothing like the $40 to see a Dr and the lab demanding $500. WE have to go back in March,April,May,June,Sept and November and it's a hard trip at 314 miles each way. Love to all and always remember things can get better but IT takes time. Becki and 12 SoJRA aka The Barefoot TN Flash. __________________________________________________________ It's here! Your new message! Get new email alerts with the free Toolbar. http://tools.search./toolbar/features/mail/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2011 Report Share Posted February 15, 2011 Even though this list is smaller and has less posts it is so very important to keep this going. Mom's & Dad's are still just as devastated when they get the diagnosis as we were years ago. We have to share the hope and positive outcomes along with all the advice they need. Thank you so much Becki for staying with us adn you both have been and continue to be awesome contributors to this list. Veri & Jaye 17 poly Re: Larson Thank you for giving us all hope! (n, 22, systemic and MAS survivor and never in a remission Sent from my iPhone On Feb 14, 2011, at 8:47 PM, Becki Larson <sojramom@...> wrote: > Hi everyone, > I don't post often anymore but read a lot and pray for our new comers. > Just a brief script is 12 1/2 and was tentatively diagnosed with SoJRA a > month before his 3rd birthday after only 3 weeks. The whole kit and kaboodle > came on fast and strong.His SED was over 120 and WBC over 30,0000. His first > visit he was contracted in the chair position,burning up with a fever and the > description of the stills rash was nothing compared to his whole body being > covered in hives and welts. > Fast forward to age 4 you could't get Enbrel due to such a high demand and a > huge shortage.From this list I heard of a phase 4 clinical study at Cincinnati > Childrens and went for it.He met the criteria and got to start Enbrel when > thousands could not. After 9 days the miracle happened. Maxed out on the anti > Malaria drug Plaquenil we dropped it, a long 18 months of pred very slowely > discontinued.His maxed out dose of NSAID weaned away and then the 25mg MTX > slowly tapered. He made it to 2.5mg MTX sub q for 2 months and 2 weeks and both > > wrists lost almost all ROM and some ankle involvement.OH,the resistant lft >ankle > > got drained and injected twice in 2 1/2 months before Enbrel. > We started our journey all over again putting once again in the hands > of Dr. Lovell at Cincinnati Childrens.Never left him until Dr Graham >from > > Cincy came home to Nashville.After about 2 yrs Dr. Graham had see a PA >and > > once dad found out it was NO MORE we are going back to Cinci.Vanderbilt did get > > him off the MTX so last July we thought Dr.Lovell woul'd take him off the > Enbrel. Should have known Dr. Lovell is always in charge of some sort of > research through the NIH and sure enough there was a study on the better > understanding of TNF " S. The study is looking for any kind of markers in the > blood that willl someday let doctors know if a child can come off a TNF > inhibitor or not.We had to wait 6 more months due to protocol after being in a > medicated remission for almost 5 yrs. > Well today was the day. no longer has to take Enbrel shots,he looks > great and feels great and to top it all off I noticed how dirty his jeans were > at the appointment.I questioned him about it and due to having to get up at 4am > > he went out side and did summer salts(SP) in the front yard to wake up.He ALSO > gave up 9 vials of blood for research,pictures to prove it. > Please pray and knock on wood because we could no longer pay the $856 a month > for insurance knowing come April 1st it would be over $1000 a month. It is not > Medicaid but TN has a program called Cover Kids BUT you have to be without > insurance for 3 moths.We have until March 31st and it's through BCBS of TN. We > will not have to pay premiums but there are co pays but nothing like the $40 to > > see a Dr and the lab demanding $500. > WE have to go back in March,April,May,June,Sept and November and it's a hard > trip at 314 miles each way. > Love to all and always remember things can get better but IT takes time. > Becki and 12 SoJRA aka The Barefoot TN Flash. > > __________________________________________________________ > It's here! Your new message! > Get new email alerts with the free Toolbar. > http://tools.search./toolbar/features/mail/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2011 Report Share Posted February 15, 2011 Thanks so much for sharing 's story...and for offering those of us who are still new to this the greatest gift...hope Wishing you and all the best! & , 7, poly...SPD...nystagmus Sent from my iPhone ________________________________________________________________________________\ ____ Get your own web address. Have a HUGE year through Small Business. http://smallbusiness./domains/?p=BESTDEAL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2011 Report Share Posted February 15, 2011 Becki: So very happy for you and ! That is awesome news.  Beth & Hannah, 14, OA, HMJS, asthma etc.... Life is one grand, sweet song, so start the music. ~ Reagan ________________________________ From: Becki Larson <sojramom@...> Sent: Mon, February 14, 2011 10:47:11 PM Subject: Larson  Hi everyone, I don't post often anymore but read a lot and pray for our new comers. Just a brief script is 12 1/2 and was tentatively diagnosed with SoJRA a month before his 3rd birthday after only 3 weeks. The whole kit and kaboodle came on fast and strong.His SED was over 120 and WBC over 30,0000. His first visit he was contracted in the chair position,burning up with a fever and the description of the stills rash was nothing compared to his whole body being covered in hives and welts. Fast forward to age 4 you could't get Enbrel due to such a high demand and a huge shortage.From this list I heard of a phase 4 clinical study at Cincinnati Childrens and went for it.He met the criteria and got to start Enbrel when thousands could not. After 9 days the miracle happened. Maxed out on the anti Malaria drug Plaquenil we dropped it, a long 18 months of pred very slowely discontinued.His maxed out dose of NSAID weaned away and then the 25mg MTX slowly tapered. He made it to 2.5mg MTX sub q for 2 months and 2 weeks and both wrists lost almost all ROM and some ankle involvement.OH,the resistant lft ankle got drained and injected twice in 2 1/2 months before Enbrel. We started our journey all over again putting once again in the hands of Dr. Lovell at Cincinnati Childrens.Never left him until Dr Graham from Cincy came home to Nashville.After about 2 yrs Dr. Graham had see a PA and once dad found out it was NO MORE we are going back to Cinci.Vanderbilt did get him off the MTX so last July we thought Dr.Lovell woul'd take him off the Enbrel. Should have known Dr. Lovell is always in charge of some sort of research through the NIH and sure enough there was a study on the better understanding of TNF " S. The study is looking for any kind of markers in the blood that willl someday let doctors know if a child can come off a TNF inhibitor or not.We had to wait 6 more months due to protocol after being in a medicated remission for almost 5 yrs. Well today was the day. no longer has to take Enbrel shots,he looks great and feels great and to top it all off I noticed how dirty his jeans were at the appointment.I questioned him about it and due to having to get up at 4am he went out side and did summer salts(SP) in the front yard to wake up.He ALSO gave up 9 vials of blood for research,pictures to prove it. Please pray and knock on wood because we could no longer pay the $856 a month for insurance knowing come April 1st it would be over $1000 a month. It is not Medicaid but TN has a program called Cover Kids BUT you have to be without insurance for 3 moths.We have until March 31st and it's through BCBS of TN. We will not have to pay premiums but there are co pays but nothing like the $40 to see a Dr and the lab demanding $500. WE have to go back in March,April,May,June,Sept and November and it's a hard trip at 314 miles each way. Love to all and always remember things can get better but IT takes time. Becki and 12 SoJRA aka The Barefoot TN Flash. __________________________________________________________ It's here! Your new message! Get new email alerts with the free Toolbar. http://tools.search./toolbar/features/mail/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2011 Report Share Posted February 15, 2011 That is very awesome news!! Hooray for and thank God for all of you on this list who offer your endless prayers and support and much needed wisdom! Us new to this disease would be lost without you! , 12, poly From: aokmom67@... Date: Tue, 15 Feb 2011 06:50:37 -0800 Subject: Re: Larson Becki: So very happy for you and ! That is awesome news. Beth & Hannah, 14, OA, HMJS, asthma etc.... Life is one grand, sweet song, so start the music. ~ Reagan ________________________________ From: Becki Larson <sojramom@...> Sent: Mon, February 14, 2011 10:47:11 PM Subject: Larson Hi everyone, I don't post often anymore but read a lot and pray for our new comers. Just a brief script is 12 1/2 and was tentatively diagnosed with SoJRA a month before his 3rd birthday after only 3 weeks. The whole kit and kaboodle came on fast and strong.His SED was over 120 and WBC over 30,0000. His first visit he was contracted in the chair position,burning up with a fever and the description of the stills rash was nothing compared to his whole body being covered in hives and welts. Fast forward to age 4 you could't get Enbrel due to such a high demand and a huge shortage.From this list I heard of a phase 4 clinical study at Cincinnati Childrens and went for it.He met the criteria and got to start Enbrel when thousands could not. After 9 days the miracle happened. Maxed out on the anti Malaria drug Plaquenil we dropped it, a long 18 months of pred very slowely discontinued.His maxed out dose of NSAID weaned away and then the 25mg MTX slowly tapered. He made it to 2.5mg MTX sub q for 2 months and 2 weeks and both wrists lost almost all ROM and some ankle involvement.OH,the resistant lft ankle got drained and injected twice in 2 1/2 months before Enbrel. We started our journey all over again putting once again in the hands of Dr. Lovell at Cincinnati Childrens.Never left him until Dr Graham from Cincy came home to Nashville.After about 2 yrs Dr. Graham had see a PA and once dad found out it was NO MORE we are going back to Cinci.Vanderbilt did get him off the MTX so last July we thought Dr.Lovell woul'd take him off the Enbrel. Should have known Dr. Lovell is always in charge of some sort of research through the NIH and sure enough there was a study on the better understanding of TNF " S. The study is looking for any kind of markers in the blood that willl someday let doctors know if a child can come off a TNF inhibitor or not.We had to wait 6 more months due to protocol after being in a medicated remission for almost 5 yrs. Well today was the day. no longer has to take Enbrel shots,he looks great and feels great and to top it all off I noticed how dirty his jeans were at the appointment.I questioned him about it and due to having to get up at 4am he went out side and did summer salts(SP) in the front yard to wake up.He ALSO gave up 9 vials of blood for research,pictures to prove it. Please pray and knock on wood because we could no longer pay the $856 a month for insurance knowing come April 1st it would be over $1000 a month. It is not Medicaid but TN has a program called Cover Kids BUT you have to be without insurance for 3 moths.We have until March 31st and it's through BCBS of TN. We will not have to pay premiums but there are co pays but nothing like the $40 to see a Dr and the lab demanding $500. WE have to go back in March,April,May,June,Sept and November and it's a hard trip at 314 miles each way. Love to all and always remember things can get better but IT takes time. Becki and 12 SoJRA aka The Barefoot TN Flash. __________________________________________________________ It's here! Your new message! Get new email alerts with the free Toolbar. http://tools.search./toolbar/features/mail/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2011 Report Share Posted February 15, 2011 Wonderful news about ! I remember when you first came to the list and to read where he is now does give such hope to all the new parents who are really struggling. This list has been, and continues to be, such a source of inspiration! Michele ( 23, spondy) From: [mailto: ] On Behalf Of Becki Larson Sent: Monday, February 14, 2011 10:47 PM Subject: Larson Hi everyone, I don't post often anymore but read a lot and pray for our new comers. Just a brief script is 12 1/2 and was tentatively diagnosed with SoJRA a month before his 3rd birthday after only 3 weeks. The whole kit and kaboodle came on fast and strong.His SED was over 120 and WBC over 30,0000. His first visit he was contracted in the chair position,burning up with a fever and the description of the stills rash was nothing compared to his whole body being covered in hives and welts. Fast forward to age 4 you could't get Enbrel due to such a high demand and a huge shortage.From this list I heard of a phase 4 clinical study at Cincinnati Childrens and went for it.He met the criteria and got to start Enbrel when thousands could not. After 9 days the miracle happened. Maxed out on the anti Malaria drug Plaquenil we dropped it, a long 18 months of pred very slowely discontinued.His maxed out dose of NSAID weaned away and then the 25mg MTX slowly tapered. He made it to 2.5mg MTX sub q for 2 months and 2 weeks and both wrists lost almost all ROM and some ankle involvement.OH,the resistant lft ankle got drained and injected twice in 2 1/2 months before Enbrel. We started our journey all over again putting once again in the hands of Dr. Lovell at Cincinnati Childrens.Never left him until Dr Graham from Cincy came home to Nashville.After about 2 yrs Dr. Graham had see a PA and once dad found out it was NO MORE we are going back to Cinci.Vanderbilt did get him off the MTX so last July we thought Dr.Lovell woul'd take him off the Enbrel. Should have known Dr. Lovell is always in charge of some sort of research through the NIH and sure enough there was a study on the better understanding of TNF " S. The study is looking for any kind of markers in the blood that willl someday let doctors know if a child can come off a TNF inhibitor or not.We had to wait 6 more months due to protocol after being in a medicated remission for almost 5 yrs. Well today was the day. no longer has to take Enbrel shots,he looks great and feels great and to top it all off I noticed how dirty his jeans were at the appointment.I questioned him about it and due to having to get up at 4am he went out side and did summer salts(SP) in the front yard to wake up.He ALSO gave up 9 vials of blood for research,pictures to prove it. Please pray and knock on wood because we could no longer pay the $856 a month for insurance knowing come April 1st it would be over $1000 a month. It is not Medicaid but TN has a program called Cover Kids BUT you have to be without insurance for 3 moths.We have until March 31st and it's through BCBS of TN. We will not have to pay premiums but there are co pays but nothing like the $40 to see a Dr and the lab demanding $500. WE have to go back in March,April,May,June,Sept and November and it's a hard trip at 314 miles each way. Love to all and always remember things can get better but IT takes time. Becki and 12 SoJRA aka The Barefoot TN Flash. __________________________________________________________ It's here! Your new message! Get new email alerts with the free Toolbar. http://tools.search./toolbar/features/mail/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2011 Report Share Posted February 15, 2011 Becki, thanks so much for sharing this wonderful news! And, thanks for sharing the details of the journey as well. As a new mom in this it gives me SO much hope and comfort to hear 's story. I'll pray that continues to do well. He certainly is an inspiration. nn (, 9, systemic since Oct 2009) > > Hi everyone, > I don't post often anymore but read a lot and pray for our new comers. > Just a brief script is 12 1/2 and was tentatively diagnosed with SoJRA a > month before his 3rd birthday after only 3 weeks. The whole kit and kaboodle > came on fast and strong.His SED was over 120 and WBC over 30,0000. His first > visit he was contracted in the chair position,burning up with a fever and the > description of the stills rash was nothing compared to his whole body being > covered in hives and welts. > Fast forward to age 4 you could't get Enbrel due to such a high demand and a > huge shortage.From this list I heard of a phase 4 clinical study at Cincinnati > Childrens and went for it.He met the criteria and got to start Enbrel when > thousands could not. After 9 days the miracle happened. Maxed out on the anti > Malaria drug Plaquenil we dropped it, a long 18 months of pred very slowely > discontinued.His maxed out dose of NSAID weaned away and then the 25mg MTX > slowly tapered. He made it to 2.5mg MTX sub q for 2 months and 2 weeks and both > wrists lost almost all ROM and some ankle involvement.OH,the resistant lft ankle > got drained and injected twice in 2 1/2 months before Enbrel. > We started our journey all over again putting once again in the hands > of Dr. Lovell at Cincinnati Childrens.Never left him until Dr Graham from > Cincy came home to Nashville.After about 2 yrs Dr. Graham had see a PA and > once dad found out it was NO MORE we are going back to Cinci.Vanderbilt did get > him off the MTX so last July we thought Dr.Lovell woul'd take him off the > Enbrel. Should have known Dr. Lovell is always in charge of some sort of > research through the NIH and sure enough there was a study on the better > understanding of TNF " S. The study is looking for any kind of markers in the > blood that willl someday let doctors know if a child can come off a TNF > inhibitor or not.We had to wait 6 more months due to protocol after being in a > medicated remission for almost 5 yrs. > Well today was the day. no longer has to take Enbrel shots,he looks > great and feels great and to top it all off I noticed how dirty his jeans were > at the appointment.I questioned him about it and due to having to get up at 4am > he went out side and did summer salts(SP) in the front yard to wake up.He ALSO > gave up 9 vials of blood for research,pictures to prove it. > Please pray and knock on wood because we could no longer pay the $856 a month > for insurance knowing come April 1st it would be over $1000 a month. It is not > Medicaid but TN has a program called Cover Kids BUT you have to be without > insurance for 3 moths.We have until March 31st and it's through BCBS of TN. We > will not have to pay premiums but there are co pays but nothing like the $40 to > see a Dr and the lab demanding $500. > WE have to go back in March,April,May,June,Sept and November and it's a hard > trip at 314 miles each way. > Love to all and always remember things can get better but IT takes time. > Becki and 12 SoJRA aka The Barefoot TN Flash. > > > > ________________________________________________________________________________\ ____ > It's here! Your new message! > Get new email alerts with the free Toolbar. > http://tools.search./toolbar/features/mail/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2011 Report Share Posted February 15, 2011 Becki, such a long journey, with you by his side. So glad that he is doing so well. Hope the monster is gone forever and ever... and Rob Re: Larson > Becki, thanks so much for sharing this wonderful news! > And, thanks for sharing the details of the journey as > well. As a new mom in this it gives me SO much hope and > comfort to hear 's story. I'll pray that > continues to do well. He certainly is an inspiration. > nn (, 9, systemic since Oct 2009) > > > > > > > Hi everyone, > > I don't post often anymore but > read a lot and pray for our new comers. > > Just a brief script is 12 1/2 and was > tentatively diagnosed with SoJRA a > > month before his 3rd birthday after only 3 weeks. The whole > kit and kaboodle > > came on fast and strong.His SED was over 120 and WBC over > 30,0000. His first > > visit he was contracted in the chair position,burning up with > a fever and the > > description of the stills rash was nothing compared to his > whole body being > > covered in hives and welts. > > Fast forward to age 4 you could't get Enbrel due > to such a high demand and a > > huge shortage.From this list I heard of a phase 4 clinical > study at Cincinnati > > Childrens and went for it.He met the criteria and got to start > Enbrel when > > thousands could not. After 9 days the miracle happened. Maxed > out on the anti > > Malaria drug Plaquenil we dropped it, a long 18 months of pred > very slowely > > discontinued.His maxed out dose of NSAID weaned away and then > the 25mg MTX > > slowly tapered. He made it to 2.5mg MTX sub q for 2 months and > 2 weeks and both > > wrists lost almost all ROM and some ankle involvement.OH,the > resistant lft ankle > > got drained and injected twice in 2 1/2 months before Enbrel. > > We started our journey all over again > putting once again in the hands > > of Dr. Lovell at Cincinnati Childrens.Never left him > until Dr Graham from > > Cincy came home to Nashville.After about 2 yrs Dr. Graham had > see a PA and > > once dad found out it was NO MORE we are going back to > Cinci.Vanderbilt did get > > him off the MTX so last July we thought Dr.Lovell woul'd take > him off the > > Enbrel. Should have known Dr. Lovell is always in charge of > some sort of > > research through the NIH and sure enough there was a study on > the better > > understanding of TNF " S. The study is looking for any kind of > markers in the > > blood that willl someday let doctors know if a child can come > off a TNF > > inhibitor or not.We had to wait 6 more months due to protocol > after being in a > > medicated remission for almost 5 yrs. > > Well today was the day. no longer has to > take Enbrel shots,he looks > > great and feels great and to top it all off I noticed how > dirty his jeans were > > at the appointment.I questioned him about it and due to having > to get up at 4am > > he went out side and did summer salts(SP) in the front yard to > wake up.He ALSO > > gave up 9 vials of blood for research,pictures to prove it. > > Please pray and knock on wood because we could no > longer pay the $856 a month > > for insurance knowing come April 1st it would be over $1000 a > month. It is not > > Medicaid but TN has a program called Cover Kids BUT you have > to be without > > insurance for 3 moths.We have until March 31st and it's > through BCBS of TN. We > > will not have to pay premiums but there are co pays but > nothing like the $40 to > > see a Dr and the lab demanding $500. > > WE have to go back in > March,April,May,June,Sept and November and it's a hard > > trip at 314 miles each way. > > Love to all and always remember things can get better but IT > takes time. > > Becki and 12 SoJRA aka The Barefoot TN Flash. > > > > > > > > > ________________________________________________________________________________\ ____> It's here! Your new message! > > Get new email alerts with the free Toolbar. > > http://tools.search./toolbar/features/mail/ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2011 Report Share Posted February 16, 2011 Wow! Thanks for sharing! I truly hope he stays as healthy and happy as he is right now forever! Kirsten, mom to , 6, spondy > > Hi everyone, > I don't post often anymore but read a lot and pray for our new comers. > Just a brief script is 12 1/2 and was tentatively diagnosed with SoJRA a > month before his 3rd birthday after only 3 weeks. The whole kit and kaboodle > came on fast and strong.His SED was over 120 and WBC over 30,0000. His first > visit he was contracted in the chair position,burning up with a fever and the > description of the stills rash was nothing compared to his whole body being > covered in hives and welts. > Fast forward to age 4 you could't get Enbrel due to such a high demand and a > huge shortage.From this list I heard of a phase 4 clinical study at Cincinnati > Childrens and went for it.He met the criteria and got to start Enbrel when > thousands could not. After 9 days the miracle happened. Maxed out on the anti > Malaria drug Plaquenil we dropped it, a long 18 months of pred very slowely > discontinued.His maxed out dose of NSAID weaned away and then the 25mg MTX > slowly tapered. He made it to 2.5mg MTX sub q for 2 months and 2 weeks and both > wrists lost almost all ROM and some ankle involvement.OH,the resistant lft ankle > got drained and injected twice in 2 1/2 months before Enbrel. > We started our journey all over again putting once again in the hands > of Dr. Lovell at Cincinnati Childrens.Never left him until Dr Graham from > Cincy came home to Nashville.After about 2 yrs Dr. Graham had see a PA and > once dad found out it was NO MORE we are going back to Cinci.Vanderbilt did get > him off the MTX so last July we thought Dr.Lovell woul'd take him off the > Enbrel. Should have known Dr. Lovell is always in charge of some sort of > research through the NIH and sure enough there was a study on the better > understanding of TNF " S. The study is looking for any kind of markers in the > blood that willl someday let doctors know if a child can come off a TNF > inhibitor or not.We had to wait 6 more months due to protocol after being in a > medicated remission for almost 5 yrs. > Well today was the day. no longer has to take Enbrel shots,he looks > great and feels great and to top it all off I noticed how dirty his jeans were > at the appointment.I questioned him about it and due to having to get up at 4am > he went out side and did summer salts(SP) in the front yard to wake up.He ALSO > gave up 9 vials of blood for research,pictures to prove it. > Please pray and knock on wood because we could no longer pay the $856 a month > for insurance knowing come April 1st it would be over $1000 a month. It is not > Medicaid but TN has a program called Cover Kids BUT you have to be without > insurance for 3 moths.We have until March 31st and it's through BCBS of TN. We > will not have to pay premiums but there are co pays but nothing like the $40 to > see a Dr and the lab demanding $500. > WE have to go back in March,April,May,June,Sept and November and it's a hard > trip at 314 miles each way. > Love to all and always remember things can get better but IT takes time. > Becki and 12 SoJRA aka The Barefoot TN Flash. > > > > ________________________________________________________________________________\ ____ > It's here! Your new message! > Get new email alerts with the free Toolbar. > http://tools.search./toolbar/features/mail/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2011 Report Share Posted March 15, 2011 Becki, I love, love hearing about and how well he is doing! Thank you. Prayers for your husband! nn (mom to , 9, systemic) > > Short and sweet and 2 the point. 5 weeks off his Enbrel, 3 weeks into baseball > and way overthrowing my star pitcher,catcher and 1st baseman. Biggie being > throwing over 80 fastballs a day almost every day that his arm got what he > called stiff.Seen Dr. Lovell today at Cincinnati Children's and he found > nothing. wears his boxer shorts ,then puts on those awful paper > shorts,that he HATES.He lays flat on his back then pulls his knees to his > chest.Right leg....RIP lft leg ....RIP then pulls a Hulk move and destroys > them more.Last month he didn't rip them but stretched fine. > I brought up the small article about kids with JIA developing puberty sooner > but finishing later.Dave is 12 and has pit hair, starting belly hair and for > years has had hair down yonder.Dr. Lovell told me that in s case the > puberty is all natural and not caused by meds. Right after the talk Dr.Lovell > touched his leg and THIS child jumped 2 " off the table.It was sooo funny even > got hilarious after he realized no one was going to check his privates. > We are so close to 10 yrs into this please don't give up..... The beginning is > the hardest and it really just takes time to find the right drug combo and a ped > rhuemy you love.WE travel just over 600 miles rd trip in one day but my retired > mom is also taking us so dad can work. > Please say a prayer for my husband because today he had his cervical spine > plate covering 3 discs removed and they cut your neck almost ear to ear. > Love and pray 4 all of u > Becki and the Barefoot TN. Flash 12 SoJRA > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2011 Report Share Posted March 15, 2011 Oh, Becki, I bet he'd be furious if he knew that you shared some of that info!! Of course, a parent is supposed to embarrass a child. J It is wonderful to hear that continues to do so well! Liz From: [mailto: ] On Behalf Of Becki Larson Sent: Monday, March 14, 2011 11:39 PM Subject: Larson Short and sweet and 2 the point. 5 weeks off his Enbrel, 3 weeks into baseball and way overthrowing my star pitcher,catcher and 1st baseman. Biggie being throwing over 80 fastballs a day almost every day that his arm got what he called stiff.Seen Dr. Lovell today at Cincinnati Children's and he found nothing. wears his boxer shorts ,then puts on those awful paper shorts,that he HATES.He lays flat on his back then pulls his knees to his chest.Right leg....RIP lft leg ....RIP then pulls a Hulk move and destroys them more.Last month he didn't rip them but stretched fine. I brought up the small article about kids with JIA developing puberty sooner but finishing later.Dave is 12 and has pit hair, starting belly hair and for years has had hair down yonder.Dr. Lovell told me that in s case the puberty is all natural and not caused by meds. Right after the talk Dr.Lovell touched his leg and THIS child jumped 2 " off the table.It was sooo funny even got hilarious after he realized no one was going to check his privates. We are so close to 10 yrs into this please don't give up..... The beginning is the hardest and it really just takes time to find the right drug combo and a ped rhuemy you love.WE travel just over 600 miles rd trip in one day but my retired mom is also taking us so dad can work. Please say a prayer for my husband because today he had his cervical spine plate covering 3 discs removed and they cut your neck almost ear to ear. Love and pray 4 all of u Becki and the Barefoot TN. Flash 12 SoJRA Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.