Guest guest Posted June 19, 2002 Report Share Posted June 19, 2002 Hi Ellie, Sorry that Riley is having such a hard time.It does not help that she got kicked in the knee,that can be very dangerous to an already swollen joint.I know it is so hard waiting for the meds to work. is 7weeks into his new drug,they said 3 months,I thought it was working 3-4 weeks into it but it was probablly the increase in MTX that worked.Hang in there,my journal says dose #9 on the MTX is when the rheumys thought it was starting to work.I was also told once it starts to work it is very minimal and within 4-6 more weeks it would hit maximum results.Dont be surprised if Rileys MTX is raised along the way.I think you said Riley weighs 45lbs,s rheumys told me if we get him off the pred and he loses 10lbs which would put him at 45lbs he would have to be droped from 25mg to 22.5mg.He started out on only 7.5mg by the 3month mark he was up to 15mg,we got there in 2.5mg incraments though.You will find in time that you blame everything on the meds or a virus or the weather for causing an increase in pain or anything,always looking for something to blame.A hot tub would be great,even if it is small.You would be surprised at how many people order a pool or hot tub,have it delivered and decide they dont like it.You can get them from the dealer for near half price.Speaking of drainage and injections,several children on this list have had it done waiting for the DMARD to work.So you can mention it to Rileys rheumy the worst that could happen is they say no.Knees are supposed to be the easiest and most sucessful bringing as much as a yr of relief.I hope she starts fealing better soon,you are in my thoughts and prayers. Becki and 3systemic skyley8@... wrote: Dear , I'm so happy to hear that Ian is doing so well. Those stories really help me along. I want Riley's left knee to be better soooo badly. I'm sure you know the feeling. I wish I had known what this was sooner because I started the stretching on the right knee before the damage was really done and she can extend that leg all the way. Oh well, water under the bridge I suppose. Her left knee is so puffy and sore. A little girl at her preschool kicked her in the knee yesterday in anger and called her a nasty name. (a 4 year old, can you believe it?) Riley was playing with something she wanted. I was so angry it surprised me. Probably misplaced anger. I talked to the teacher's and Director and they are going to have a talk with all the students about appropriate words and actions. Sorry, I'm rambling a bit. About the Vioxx, I will ask her rheumy about changing the dose time. It's not so much that she is limping more in the afternoon than other times of day, it's just that at first you could only tell that something was wrong in the morning and now she has gotten so much worse that she limps all the time. She has a totally different gate than she used to. It just breaks my heart. My girlfriend brought her to my work yesterday after school 'cause I was with a client and she walked in all stiff and limpy and I started to cry as soon as they walked out to get some hair ribbons at my friends shop next door. Sorry, rambling again. It's just one of those days. Thanks for listening. I hope Ian continues to do well. Part of me wants to take her to the hospital right now and have her drained and injected and all of those things. I have to keep reminding myself that it is just the beginning. Somehow that makes me feel worse sometimes. Okay, I'd better get going, got to get her to school and me to work in 57 minutes. I'm still in my bathrobe...yikes. Take care. Ellie and Riley 4 poly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2002 Report Share Posted June 19, 2002 Thanks Becki, Your thoughts and prayers mean a lot to me. This has been the most difficult time in my life. I hate to have her go through the draining of her knee after the knee tap that she had in the emergency room when they were trying to figure out what was wrong with her, but I am just so worried about that joint. Does take MTX orally or by injection? I asked her rheumy about the injection and he said it doesn't make a difference but I have read so much that people in the group have written about the injection being so much more effective. I guess all Dr.s have different opinions, it's just so scary because you want to do what's best for your child and Dr.s too are only human. I'll let everyone know what happens with her meds. I think her rheumy might again make the offer to put her on kineret when we see him on the 2nd. I think I will let the mtx have more of a chance. I think I would rather have her knee drained if that works than give her a shot every day that might or might not help. I hate having to make these decisions. How is doing now? I wish all of them would get better. No one should have to live with this kind of pain. It's so hard to see your baby having to live with it. Thanks for letting me vent yet again. Hopefully I will get over the poor me phase soon. Big hugs, Ellie and Riley 4 poly P.s. Thanks for the info on how long it took to see a difference with the mtx. I will be watching carefully around dose #9! allan larson <alarson1@...> wrote: >Hi Ellie, >Sorry that Riley is having such a hard time.It does not help that she >got kicked in the knee,that can be very dangerous to an already swollen >joint.I know it is so hard waiting for the meds to work. is 7weeks >into his new drug,they said 3 months,I thought it was working 3-4 weeks >into it but it was probablly the increase in MTX that worked.Hang in >there,my journal says dose #9 on the MTX is when the rheumys thought it >was starting to work.I was also told once it starts to work it is very >minimal and within 4-6 more weeks it would hit maximum results.Dont be >surprised if Rileys MTX is raised along the way.I think you said Riley >weighs 45lbs,s rheumys told me if we get him off the pred and he >loses 10lbs which would put him at 45lbs he would have to be droped from >25mg to 22.5mg.He started out on only 7.5mg by the 3month mark he was up >to 15mg,we got there in 2.5mg incraments though.You will find in time >that you blame everything on the meds or a virus or the weather for >causing an increase in pain or anything,always looking for something to >blame.A hot tub would be great,even if it is small.You would be >surprised at how many people order a pool or hot tub,have it delivered >and decide they dont like it.You can get them from the dealer for near >half price.Speaking of drainage and injections,several children on this >list have had it done waiting for the DMARD to work.So you can mention >it to Rileys rheumy the worst that could happen is they say no.Knees are >supposed to be the easiest and most sucessful bringing as much as a yr >of relief.I hope she starts fealing better soon,you are in my thoughts >and prayers. >Becki and 3systemic > >skyley8@... wrote: > >> Dear , >> I'm so happy to hear that Ian is doing so well. Those stories >> really help me along. I want Riley's left knee to be better soooo >> badly. I'm sure you know the feeling. I wish I had known what this >> was sooner because I started the stretching on the right knee before >> the damage was really done and she can extend that leg all the way. >> Oh well, water under the bridge I suppose. Her left knee is so puffy >> and sore. A little girl at her preschool kicked her in the knee >> yesterday in anger and called her a nasty name. (a 4 year old, can you >> believe it?) Riley was playing with something she wanted. I was so >> angry it surprised me. Probably misplaced anger. I talked to the >> teacher's and Director and they are going to have a talk with all the >> students about appropriate words and actions. Sorry, I'm rambling a >> bit. >> About the Vioxx, I will ask her rheumy about changing the dose >> time. It's not so much that she is limping more in the afternoon than >> other times of day, it's just that at first you could only tell that >> something was wrong in the morning and now she has gotten so much >> worse that she limps all the time. She has a totally different gate >> than she used to. It just breaks my heart. My girlfriend brought her >> to my work yesterday after school 'cause I was with a client and she >> walked in all stiff and limpy and I started to cry as soon as they >> walked out to get some hair ribbons at my friends shop next door. >> Sorry, rambling again. It's just one of those days. Thanks for >> listening. I hope Ian continues to do well. Part of me wants to take >> her to the hospital right now and have her drained and injected and >> all of those things. I have to keep reminding myself that it is just >> the beginning. Somehow that makes me feel worse sometimes. Okay, I'd >> better get going, got to get her to school and me to work in 57 >> minutes. I'm still in my bathrobe...yikes. Take care. >> Ellie and Riley 4 poly >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2002 Report Share Posted June 19, 2002 Hi Ellie, Becki again,I dont think the poor me fealing goes away.Your a mom and your child has a chronic illness,just like Riley needs attention so do you,we all do.I just got my old journal out. started oral MTX on July 14 and on Nov2 he got his first injection.I actually e-mailed s rheumy telling him I wanted him switched to injections,his daddy was mad at first but it has made a huge differance.Three days after the first shot was the very first time acted normal and wasnt having pain,it really was the differance between night and day.Rheumys dont know everything and they dont want to scare you so sometimes you have to be the one to bring something up.From what I have learned is that you can drain a joint but the swelling can come right back,you have to drain then inject with steroids.I really dont know alot other then I want s ankle injected badly. is doing better,things seem to be leveling off.I think it was more of withdrawl symptoms from the pred dropage then him not being able to tolerate 6mg.Scarey and worrisome none the less.He will be ok,so will Riley.Just hang in there for a while longer,I didnt know of this list in the beginning and I thought crawling in the morn and night with a little relief duiring the day was as good as it was gonna get.I didnt know anything else.Know I know my son will have great weeks and some not so great.Hope you like roller coasters,your on the biggest one of your life.Sorry,that really wasnt funny,but this disease is very up and down.I am hoping Riley is one that responds sooner than later,its hard to say every childs disease affects them differant,I think thats why rheumys are even confused about JRA,there may be similarities but no two children are exactly alike. Becki and 3systemic skyley8@... wrote: > Thanks Becki, > Your thoughts and prayers mean a lot to me. This has been the most difficult time in my life. I hate to have her go through the draining of her knee after the knee tap that she had in the emergency room when they were trying to figure out what was wrong with her, but I am just so worried about that joint. Does take MTX orally or by injection? I asked her rheumy about the injection and he said it doesn't make a difference but I have read so much that people in the group have written about the injection being so much more effective. I guess all Dr.s have different opinions, it's just so scary because you want to do what's best for your child and Dr.s too are only human. I'll let everyone know what happens with her meds. I think her rheumy might again make the offer to put her on kineret when we see him on the 2nd. I think I will let the mtx have more of a chance. I think I would rather have her knee drained if that works than give her a shot every day that might or might not help. I hate having to make these decisions. How is doing now? I wish all of them would get better. No one should have to live with this kind of pain. It's so hard to see your baby having to live with it. Thanks for letting me vent yet again. Hopefully I will get over the poor me phase soon. Big hugs, > Ellie and Riley 4 poly P.s. Thanks for the info on how long it took to see a difference with the mtx. I will be watching carefully around dose #9! allan larson <alarson1@...> wrote: > > >Hi Ellie, > >Sorry that Riley is having such a hard time.It does not help that she > >got kicked in the knee,that can be very dangerous to an already swollen > >joint.I know it is so hard waiting for the meds to work. is 7weeks > >into his new drug,they said 3 months,I thought it was working 3-4 weeks > >into it but it was probablly the increase in MTX that worked.Hang in > >there,my journal says dose #9 on the MTX is when the rheumys thought it > >was starting to work.I was also told once it starts to work it is very > >minimal and within 4-6 more weeks it would hit maximum results.Dont be > >surprised if Rileys MTX is raised along the way.I think you said Riley > >weighs 45lbs,s rheumys told me if we get him off the pred and he > >loses 10lbs which would put him at 45lbs he would have to be droped from > >25mg to 22.5mg.He started out on only 7.5mg by the 3month mark he was up > >to 15mg,we got there in 2.5mg incraments though.You will find in time > >that you blame everything on the meds or a virus or the weather for > >causing an increase in pain or anything,always looking for something to > >blame.A hot tub would be great,even if it is small.You would be > >surprised at how many people order a pool or hot tub,have it delivered > >and decide they dont like it.You can get them from the dealer for near > >half price.Speaking of drainage and injections,several children on this > >list have had it done waiting for the DMARD to work.So you can mention > >it to Rileys rheumy the worst that could happen is they say no.Knees are > >supposed to be the easiest and most sucessful bringing as much as a yr > >of relief.I hope she starts fealing better soon,you are in my thoughts > >and prayers. > >Becki and 3systemic > > > >skyley8@... wrote: > > > >> Dear , > >> I'm so happy to hear that Ian is doing so well. Those stories > >> really help me along. I want Riley's left knee to be better soooo > >> badly. I'm sure you know the feeling. I wish I had known what this > >> was sooner because I started the stretching on the right knee before > >> the damage was really done and she can extend that leg all the way. > >> Oh well, water under the bridge I suppose. Her left knee is so puffy > >> and sore. A little girl at her preschool kicked her in the knee > >> yesterday in anger and called her a nasty name. (a 4 year old, can you > >> believe it?) Riley was playing with something she wanted. I was so > >> angry it surprised me. Probably misplaced anger. I talked to the > >> teacher's and Director and they are going to have a talk with all the > >> students about appropriate words and actions. Sorry, I'm rambling a > >> bit. > >> About the Vioxx, I will ask her rheumy about changing the dose > >> time. It's not so much that she is limping more in the afternoon than > >> other times of day, it's just that at first you could only tell that > >> something was wrong in the morning and now she has gotten so much > >> worse that she limps all the time. She has a totally different gate > >> than she used to. It just breaks my heart. My girlfriend brought her > >> to my work yesterday after school 'cause I was with a client and she > >> walked in all stiff and limpy and I started to cry as soon as they > >> walked out to get some hair ribbons at my friends shop next door. > >> Sorry, rambling again. It's just one of those days. Thanks for > >> listening. I hope Ian continues to do well. Part of me wants to take > >> her to the hospital right now and have her drained and injected and > >> all of those things. I have to keep reminding myself that it is just > >> the beginning. Somehow that makes me feel worse sometimes. Okay, I'd > >> better get going, got to get her to school and me to work in 57 > >> minutes. I'm still in my bathrobe...yikes. Take care. > >> Ellie and Riley 4 poly > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2002 Report Share Posted July 19, 2002 Ellie, I bought Tas a pair of ballet slippers. They are all she wears anymore. I got hers at the Disney Store here in town. They were on clearance at 75% off so I got them for 2.50. Maybe you have one near you. Check it out. Teddy bear hugs and love, Casaria and Tas __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2002 Report Share Posted July 27, 2002 Hi Ellie, takes his anytime on Friday,usually the afternoon.Hes had it as early as 8 am.Now when took it orally,it was right before bed,that way if he did get nauseous he would sleep through it.With the injections you are supposed to have less tummy troubles. never had ill effects from taking it either way.Just remember if you had sighned Riley up for the Kineret trial it would have been one very painful shot a day.Another thing is the type of MTX you inject.One has preservative one doesnt.Most on this list take with preservative and say it doesnt burn.When started injectable MTX he was put on preservative free,becuse the rheumy says it doesnt burn.Wrong,its not bad,but for 2 months he used with preservative and noticed a big differance.So wed I am going to have his prescription changed to with preservative.Its very strange you would think the alcahol they use as a preservative would burn but it doesnt.Before you have Riley switched ask the group if any of there kids has used both and which one burns less,or just what type they use and does it burn going in,by the way,the needle is very small,our pharmacist had to special order them,smaller then all there insulin syringes.Its very funny,s ped wrote the prescription and wrote it out as a box of 100 with 3 refills.Lets see 1 shot a week times 52 weeks,his prescription is good for 5.7 years.I buy 4 a month for $1.One more thing,while may not be a princess,his sister has been known to dress him up like one,pantyhose and all and he loves lipstick and clear fingernail polish. is doing great,but it has been our experiance that something is going to happen,Arthur can be very cruel and sneaky.He has been pain free before,but always had swelling,so this is new to us.Very excited and a little nervous about his appointment next week.That female is so thorough Im afraid she is going to find something else,the last time seen the male,he didnt even take s sock off the bad ankle,just moved it back and forth and said it was fine.Orthos dont drain and inject joints that are fine.Ooh I wish he would just retire,hes very aggresive,but a real jerk at times,at least hes always been great with .I am preparing myself to see him because we seen the female last month,male month before and so on.I get sick just thinking about it.Hes not that bad,he just tries to get me to drop s pred to fast,and I havent gotten over the last time he caused to flair.You gals take care. Becki and 4systemic Re: Becki and >Oh Becki, that's so awesome that is feeling so well! I am really >thankful that our children are dealing with this is this day and age. Thank >God the Dr.'s treat it so aggressively now. They do have a much better >chance at a better outcome then the people who have had it for many years >like the wonderful " vet's " here that share their experience and wisdom with >us. I know the shots will be hard at first, but thanks goodness these >medications exist and will hopefully soon be available to our kids. , >it looks like our girls are on the same mtx cycle so they will both be taking >their mtx tonight. So when we switch to injections I'll feel less alone! >Becki, when does take his mtx? > Good Idea Becki by the way combining the post to and me! Hope >all the princesses have a pain free day worthy of royalty! >Love, Ellie and Riley 4 poly > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2005 Report Share Posted November 12, 2005 My husband was put on Ambien to help him sleep. He says they work really good. You may want to ask your doc about it Tammy So. Cal Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2005 Report Share Posted November 13, 2005 I take Lunesta, which is very good. It acts quickly and I sleep like a rock. It may take some getting used to, but I've found I can take it once a week and I'm good or, if there are a lot of stressors, I can take it for two weeks, maybe longer without having to continue it because I'm addicted to it. There might be one sleepless night in between stopping and having normal sleep, but that's all I've ever had and I've been taking it on and off for at least two months. Ambien worked well for me in the hospital, but, for some reason, maybe the non-addictive part, my doctor switched me to Lunesta. -----Original Message-----From: [mailto: ] On Behalf Of Tomsgrl1996@...Sent: Saturday, November 12, 2005 1:11 PM Subject: Re: [ ] Ellie My husband was put on Ambien to help him sleep. He says they work really good. You may want to ask your doc about it Tammy So. Cal Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2008 Report Share Posted March 26, 2008 Hi Jeanne, how are you, I hope so every thing is ok. Maybe you remember me, I metyou almost one month ago,( 2 times) and last time was when you brought Dr. Eisemberg (ENT). Thank you so much for every thing what you do for all the parents and for the kids,. My son is 6 years old,and always I had a problem in my town (Fort Lee)...The Director for Special Ed. she had never put any attencion about my problems untill January I told her plenty times about my son's speech delay. So the speech patoligy told me he had apraxia. I know you have very good experience... How many times could you reccomend me about the oral morals because the problem with my son is that he cannot talk because his mouth needs more exercise on the muscles.( So like this I can put it on the IEP) So this year he will be in kindergarden so please can you help me. What school can you reccomend me that he could go to. Thank you very much for spending your time reading this email.I live in Fort Lee Bergen County in Nj. Maybe you can join our group. Best Regards, Ellie Campollo Email campolloe@... God Bless you. __________________________________________________ > Just wondering if you are aware of any info on this subject or if you know > any families that do this?? > > Thanks > amy stoller Quote Link to comment Share on other sites More sharing options...
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