Guest guest Posted January 31, 2004 Report Share Posted January 31, 2004 Hi Helen, The realization of having a chronicaly ill child is a hard hit.All this talk about kids having the ok syndrome,I had it as a mommy with my baby,until this list.I wanted things to be better so bad that I was happy to say that an hour or so after pred was up and moving.Never really dawning on me that it was the pred until my hubby brought it to my attention.I guess at the time I didn't really comprehend how bad the steroids were and how severe a child has to be to be put on them.I thought all kids with JRA were put on it. 10 mg is just over low doses ,so not so bad.You really shouldn't see to many side effects.My advice though is to give the pm dose right after dinner or a small snack about 1 hour before Nick has been having his cyclic pm fevers.It can stave off the fevers and help keep the jittery insomnia away. Nick is a few yrs older then was, so starting at 10 mg is a reasonable starting dose.Don't be surprised if it is increased along the way. started out on 7.5mg oral and moved on up to 25mg within 9 months.We reached the 4 month mark and up to 15mg and still nothing.I got his rheumies e-mail address and requested being switched to shots.He had been on it long enough to be working he just wasn't absorbing it properly.That first shot was like a miricle.His ped played very rough and puled on his arms and played fighting bear.We seen such a dramatic result from the results and called the rheumy.Unfortunately a 3mg steroid taper sent things spiraling and begged for another shot.It will take a minimum of 3 weeks if not more for results.Once you notice a differnace the results get better over a 3 month period. I am so proud of you for calling the rheumy.It sounds like they are too.It also sounds like you have a very concerned,compassionate rheumy. Another thing to remember is 10mg a day is not much. was more severe but not as severe as others.If the 10mg pred doesn't work please feel free to call the rheumy again.It's all one huge learning process for rheumies and parents. I wish now I had followed my hubbies advice about taking pictures of s rash and his many crooked joints but couldn't bring myself to it.It was just so severe and nasty looking that I never wanted to be reminded visualy of what it was like. I have seen Nicks rash pictures and was 100%worse.Luckily the systemic part never went beyond the severe rash and HUGE gland/lumph nodes,which the rheumy was very concerned about,You also have to remember was unofficialy diagnosed at 21 days from what semed like a sprained ankle from a bike wreck and a contact rash from fresh,wet cut grass.His rheumy has had kids much harder to terat but was one of the most aggressive onset.If we wouldn't have fought so hard taking him to differant doctors for second opinions he would have wound up in the hospital having all kinds of nasty tests.His ped rheumy knew what he had and begged us not to take him to the ER.Tword the second week he got scared for and said if we felt we needed to take him in go to Nashville to Vanderbilts ped ER. Enough about ,I just rarely talk about his history after being almost 14 months at 100% control. Just keep doing what you did at this last appointment and calling the rheumy with any concerns.Every child is differant and needs to try their own treatment plan.You guys are still learning about how Nicks disease may or may not progress,so waiting until things get severe could be to late. 's daughter n is differant then s. also has more experiance then I do.All I know is if s joint symptoms persist the rash is first then the bad flare of multiple joint contraction and SEVERE Myalgas(all over severe muscle pain)then the fevers.Sometimes no fever but a real possability. Way to long of a post but I am the Queen of rambling.In a short condenced version.When in doubt or worried make that phonecall.It's been well over a year but I have made my fair share of bawling,desperate attempts for help,especially on the weekends. Love and Hugs Becki and 5 systemic Down to just 12.5mg Enbrel and his starting dose of 7.5mg oral MTX.No more maxed out Ibuprofin,Plaquenil and Valentines we will be partying down.One year off steroids after 23 months and having a 62.4lb barely 4 yr old.His sister is 8 slightly chubby and just weighs 60lbs.Her height curve is on the short side though. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2004 Report Share Posted February 1, 2004 HI Becki, Thanks for the post, it always helps to read how others have handled things and also how the children did on different treatments. Nicks pred is only at 10mg for 7 days, we then cut out the evening dose for another 7 and then we try 5mg every other day... we will see how it goes... The doc has already told me to expect an increase in the MTX dosing. She did give me the option of starting on the injections, but i told her we would try the pills 1st. She did warn though if we get to 17.5mg ( 1mg for each kilo of body weight) we will have to switch to injectable. I can totally understand about not wanting to take pictures. I didnt even think about it when Nicks rashes were at the worse, because back in then, i just assumed it was some viral thing that would soon pass. I had never even heard of JRA. IM soo glad is doing soooo well, ))) i cant remember, is in school???? Hugs Helen,mom to (6,systemic) Hugs..Helen DH Dan DS's (20)(14)(11)Zachary(9)(6) And DD Yuping Burger, adopted May 9th 2000 DuChang, JiangXi, China DOB 3/29/99 ACR 0-9 mths (11 mths at referral) DTC 7/22/99 DOR 2/25/00 (219 days of waiting) DOT 5/5-5/20/00>From: Arthurnator@... >Reply- > >Subject: Re: Update/long >Date: Sat, 31 Jan 2004 23:06:51 EST > >Hi Helen, >The realization of having a chronicaly ill child is a hard hit.All this talk >about kids having the ok syndrome,I had it as a mommy with my baby,until this >list.I wanted things to be better so bad that I was happy to say that an hour >or so after pred was up and moving.Never really dawning on me that it >was the pred until my hubby brought it to my attention.I guess at the time I >didn't really comprehend how bad the steroids were and how severe a child has to >be to be put on them.I thought all kids with JRA were put on it. >10 mg is just over low doses ,so not so bad.You really shouldn't see to many >side effects.My advice though is to give the pm dose right after dinner or a >small snack about 1 hour before Nick has been having his cyclic pm fevers.It >can stave off the fevers and help keep the jittery insomnia away. >Nick is a few yrs older then was, so starting at 10 mg is a reasonable >starting dose.Don't be surprised if it is increased along the way. >started out on 7.5mg oral and moved on up to 25mg within 9 months.We reached the 4 >month mark and up to 15mg and still nothing.I got his rheumies e-mail address >and requested being switched to shots.He had been on it long enough to be >working he just wasn't absorbing it properly.That first shot was like a >miricle.His ped played very rough and puled on his arms and played fighting bear.We seen >such a dramatic result from the results and called the rheumy.Unfortunately a >3mg steroid taper sent things spiraling and begged for another shot.It >will take a minimum of 3 weeks if not more for results.Once you notice a >differnace the results get better over a 3 month period. >I am so proud of you for calling the rheumy.It sounds like they are too.It >also sounds like you have a very concerned,compassionate rheumy. >Another thing to remember is 10mg a day is not much. was more severe but >not as severe as others.If the 10mg pred doesn't work please feel free to >call the rheumy again.It's all one huge learning process for rheumies and parents. >I wish now I had followed my hubbies advice about taking pictures of s >rash and his many crooked joints but couldn't bring myself to it.It was just so >severe and nasty looking that I never wanted to be reminded visualy of what >it was like. >I have seen Nicks rash pictures and was 100%worse.Luckily the systemic >part never went beyond the severe rash and HUGE gland/lumph nodes,which the >rheumy was very concerned about,You also have to remember was unofficialy >diagnosed at 21 days from what semed like a sprained ankle from a bike wreck >and a contact rash from fresh,wet cut grass.His rheumy has had kids much harder >to terat but was one of the most aggressive onset.If we wouldn't have >fought so hard taking him to differant doctors for second opinions he would >have wound up in the hospital having all kinds of nasty tests.His ped rheumy knew >what he had and begged us not to take him to the ER.Tword the second week he >got scared for and said if we felt we needed to take him in go to >Nashville to Vanderbilts ped ER. >Enough about ,I just rarely talk about his history after being almost 14 >months at 100% control. >Just keep doing what you did at this last appointment and calling the rheumy >with any concerns.Every child is differant and needs to try their own >treatment plan.You guys are still learning about how Nicks disease may or may not >progress,so waiting until things get severe could be to late. >'s daughter n is differant then s. also has more >experiance then I do.All I know is if s joint symptoms persist the rash is first >then the bad flare of multiple joint contraction and SEVERE Myalgas(all over >severe muscle pain)then the fevers.Sometimes no fever but a real possability. >Way to long of a post but I am the Queen of rambling.In a short condenced >version.When in doubt or worried make that phonecall.It's been well over a year >but I have made my fair share of bawling,desperate attempts for help,especially >on the weekends. >Love and Hugs >Becki and 5 systemic >Down to just 12.5mg Enbrel and his starting dose of 7.5mg oral MTX.No more >maxed out Ibuprofin,Plaquenil and Valentines we will be partying down.One year >off steroids after 23 months and having a 62.4lb barely 4 yr old.His sister is >8 slightly chubby and just weighs 60lbs.Her height curve is on the short side >though. 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Guest guest Posted February 1, 2004 Report Share Posted February 1, 2004 Hi Helen, Boy,you have a good rheumy.While not high doses compared to cancer kids the higher doses of MTX used for kids or adults it is recommended that doses between 20mg(the next step beyond 17.5) and 30mg is better absorbed given as an injection. I am so happy that while Nick has been having the classic fevers that they feel a short round of steroids will pull him out of it. spent 23 months on them.Some shorter some longer. The reality of whats is happening does stink,but you guys and gals will become stronger for it.Most likely(No guarantee)the MTX alone will do the trick,as long as things stay mild like they are.It can take between 3 weeks to 3 months for the MTX to kick in.Once it does it maxes out for another 6 weeks..For it was nothing after 4 months until injections but tonight he gets his first dose of 7.5mg oral.His exact stsrting dose. Ask away about any questions you may have. Hugs Becki and 5 systemic Quote Link to comment Share on other sites More sharing options...
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