Guest guest Posted May 21, 1999 Report Share Posted May 21, 1999 Hi Everyone, Just thought I'd say hello and tell you that we are a little bit sad today. Baby, our pet cockatiel, had an accident and several hours later, died. We're missing him so much. He was the most beautiful pied 'tiel. We'd had him for 5 years, since the day after he was weaned. Out of our whole flock he was the best talker, the most lovable, the most talented singer. The house seems so quiet without him whistling Pop Goes The Weasel and The Inspector Gadget song. I'm sitting here typing and even missing that he's not joining me at the keyboard, pecking and stepping on unnecessary letters and bobbing that bright yellow crested head, looking up innocently and adoringly. He was such a spirited bird. A real adventurer and a little rascal. And now he's gone. But we do have some wonderful memories and those, I hope, will last forever. And ... Josh needed to see the pediatrician today. He hasn't been feeling too good these past couple of days. Major rash. Raised and somewhat itchy but in the normal places. Slight fevers (around 101.5). Increased muscle and joint pain. Some pain when taking deep breaths. Lungs sounded clear and okay. Blood tests and cultures were done. Doctor called the rheumatologist. We decided not to make him rough it out like last time. That was a long, hard 6 weeks. Instead, starting in the morning, he's back on an increased dose of prednisone. Instead of 15mgs he'll be taking 30, again. I hope that helps quickly and we can try to taper down in a reasonable period of time. I hope we'll all start feeling better, soon. Aloha, Georgina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 1999 Report Share Posted May 21, 1999 Georgina, Sorry to hear the bad news about Josh's prednisolone dose - as you know I have been there too so I know how it feels. Just hang in there and surely you can beat this dose down. Damien has been pretty well recently - he has had his injected MTX increased (20mg/ week?) and has begun taking cyclosporine too. He hasn't taken any oral prednisolone for around two months now, but he has some kind of slow-acting prednisolone injections when he goes into hospital for his monthly session. I don't know the details because I have been too busy at work to attend hospital with my wife - you know what its like at these places - you agree to meet the docs at 10am and they turn up at 1pm! ....a bit difficult (and infuriating) when you are supposed to be working. We had other some good news recently and now have verbal confirmation that Damien is going to a local school for disabled children....SO WE WON! The school is actually contained within the grounds of a senior school (ages 11-16) where with some luck my other son will attend next year. That could be pretty useful for all of us. Sorry that I've been quiet recently - my life is going through one of those intensive & hectic phases again....I must try harder ;-) Best wishes from a sunny Friday afternoon in Central London. Oliver > [ ] A Little Sadness Today > > From: Georgina <gmckin@...> > > Hi Everyone, > > Just thought I'd say hello and tell you that we are a little bit sad > today. Baby, our pet cockatiel, had an accident and several hours later, > died. We're missing him so much. He was the most beautiful pied 'tiel. > We'd had him for 5 years, since the day after he was weaned. Out of our > whole flock he was > the best talker, the most lovable, the most talented singer. The house > seems so quiet without him whistling Pop Goes The Weasel and The > Inspector Gadget song. I'm sitting here typing and even missing that > he's not joining me at the keyboard, pecking and stepping on unnecessary > letters and bobbing that bright yellow crested head, looking up > innocently and adoringly. He was such a spirited bird. A real adventurer > and a little rascal. And now he's gone. But we do have some wonderful > memories and those, I hope, will last forever. > > And ... Josh needed to see the pediatrician today. He hasn't been > feeling too good these past couple of days. Major rash. Raised and > somewhat itchy but in the normal places. Slight fevers (around 101.5). > Increased muscle and joint pain. Some pain when taking deep breaths. > Lungs sounded clear and okay. Blood tests and cultures were done. Doctor > called the rheumatologist. We decided not to make him rough it out like > last time. That was a long, hard 6 weeks. Instead, starting in the > morning, he's back on an increased dose of prednisone. Instead of 15mgs > he'll be taking 30, again. I hope that helps quickly and we can try to > taper down in a reasonable period of time. I hope we'll all start > feeling better, soon. > > Aloha, > Georgina > > > ------------------------------------------------------------------------ > What was YOUR favorite part?! > > Tell other Star Wars fans at ONElist! > ------------------------------------------------------------------------ > Visit my homepage for a list of sites with info on childhood arthritis: > http://www.geocities.com/Heartland/Village/8414/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 1999 Report Share Posted May 21, 1999 Hi Georgina, I hope Josh is fine again. Dieguito was very bad three weeks ago and the rheumy decided increase the dose of Pred to 40mg. Now he is in 25mg and he didn't have a new flare. Please have endurance. This is only a bad moment. Maybe you could take the possibility of Pulse Therapy? Only an idea... A kiss for you and Josh, -------------- [ ] A Little Sadness Today From: Georgina <gmckin@...> Hi Everyone, Just thought I'd say hello and tell you that we are a little bit sad today. Baby, our pet cockatiel, had an accident and several hours later, died. We're missing him so much. He was the most beautiful pied 'tiel. We'd had him for 5 years, since the day after he was weaned. Out of our whole flock he was the best talker, the most lovable, the most talented singer. The house seems so quiet without him whistling Pop Goes The Weasel and The Inspector Gadget song. I'm sitting here typing and even missing that he's not joining me at the keyboard, pecking and stepping on unnecessary letters and bobbing that bright yellow crested head, looking up innocently and adoringly. He was such a spirited bird. A real adventurer and a little rascal. And now he's gone. But we do have some wonderful memories and those, I hope, will last forever. And ... Josh needed to see the pediatrician today. He hasn't been feeling too good these past couple of days. Major rash. Raised and somewhat itchy but in the normal places. Slight fevers (around 101.5). Increased muscle and joint pain. Some pain when taking deep breaths. Lungs sounded clear and okay. Blood tests and cultures were done. Doctor called the rheumatologist. We decided not to make him rough it out like last time. That was a long, hard 6 weeks. Instead, starting in the morning, he's back on an increased dose of prednisone. Instead of 15mgs he'll be taking 30, again. I hope that helps quickly and we can try to taper down in a reasonable period of time. I hope we'll all start feeling better, soon. Aloha, Georgina ------------------------------------------------------------------------ What was YOUR favorite part?! Tell other Star Wars fans at ONElist! ------------------------------------------------------------------------ Visit my homepage for a list of sites with info on childhood arthritis: http://www.geocities.com/Heartland/Village/8414/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 1999 Report Share Posted May 22, 1999 Hi Oliver, Yeah, I guess we've all been through these kinds of ups and downs. Frustrating sometimes! I'm okay with it, since the increased prednisone always seems to help out really quickly. It's a perfect solution for the short term. Josh should be feeling great soon. It's just the long term effects that disturb me. Every time we come along so far, there's always another setback. Gee, that's really great news about Damien. Two months, already, and no oral pred? I guess the injections are directly into joints that are giving him some trouble? How's he doing with the cyclosporine? Does he take that orally or through an injection? Any noticeable side effects? Wow. I'm glad to hear about the schooling decision, too :-) I'm happy it worked out well for you. Sounds like a good plan. Well, as always it's nice to hear from you. I know how it is when things get busy! I think we all can relate to that :-) Thanks for your good wishes to Josh. And enjoy the sunshine! Take Care, Georgina > From: Oliver Skudder <oliver.skudder@...> > > Georgina, > > Sorry to hear the bad news about Josh's prednisolone dose - as you know I > have been there too so I know how it feels. Just hang in there and surely > you can beat this dose down. > > Damien has been pretty well recently - he has had his injected MTX increased > (20mg/ week?) and has begun taking cyclosporine too. He hasn't taken any > oral prednisolone for around two months now, but he has some kind of > slow-acting prednisolone injections when he goes into hospital for his > monthly session. I don't know the details because I have been too busy at > work to attend hospital with my wife - you know what its like at these > places - you agree to meet the docs at 10am and they turn up at 1pm! ....a > bit difficult (and infuriating) when you are supposed to be working. > > We had other some good news recently and now have verbal confirmation that > Damien is going to a local school for disabled children....SO WE WON! The > school is actually contained within the grounds of a senior school (ages > 11-16) where with some luck my other son will attend next year. That could > be pretty useful for all of us. > > Sorry that I've been quiet recently - my life is going through one of those > intensive & hectic phases again....I must try harder ;-) > > Best wishes from a sunny Friday afternoon in Central London. > > Oliver Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 1999 Report Share Posted May 22, 1999 Hi , Thanks for your support. Yes, again we are on the uphill part of the road. but as time goes on, the journey will get easier. It seems like there is a constant rearranging of doses, trying to find the right levels at the right times. Maybe Diego will continue to have an easy time with slight decreases, while continuing to feel pretty good. I hope. And I hope so for my son, too :-) One day at a time. Take care, Georgina > From: " Siabala, " <MSiabala@...> > > Hi Georgina, > I hope Josh is fine again. Dieguito was very bad three weeks ago and the > rheumy decided increase the dose of Pred to 40mg. Now he is in 25mg and he > didn't have a new flare. Please have endurance. This is only a bad moment. > Maybe you could take the possibility of Pulse Therapy? Only an idea... > A kiss for you and Josh, > -------------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 1999 Report Share Posted May 22, 1999 Hi , Thanks for your message. It's always great to hear from you and Grace :-) I love the way she says Hawaii! Tell her we say A- LO- HA!!!! She sounds absolutely adorable. I'm glad she's pretty stable. Too bad she continues to have the bladder problems, though. Josh has never had those. I'm not so sure that it's related to the jra but maybe it's related to the meds? I don't really know. I hope the problem clears up soon, though. That is so cool, that she's not anemic anymore. Good luck with all your last minute moving preparations! I know that involves a lot of work. Yup. It would be great to be able to just pack it all up, virtually. When I clean out my hard drive every so often, I always think about how wonderful it would be if we could Spring clean our homes as effortlessly :- ) Don't work too hard, okay? Thanks for your message about Baby. Funny thing was that today, Mikey started purring really loudly, like a cat. That was something that before, only Baby would do. We didn't even know that he knew how to do it! He used to get somewhat annoyed when Baby did it by him and sort of tell him to stop. Now, he's immitating the same sounds!?! Sort of cute. Josh said he's doing it to remember Baby. He seems a little sad but I've put him in the cage with all the other birds for the time being, so at least he won't be lonely. Take Care, Georgina Jakuch@... wrote: > From: Jakuch@... > > Dear Georgina, > > I hope Josh is on the mend soon. Grace often talks about the boy in Hawaii > (only she sings it in four syllables Ha-why-yai-yee every time) who has what > she has. Grace seems pretty stable these days, but she's still on 2ccs of > pred. (along w/7.5 mgs. of MTX, and naprosyn). She also has a bladder > infection and is on Ceftin. Is bladder infection one of the things kids get > with JRA? Anyone? At her physical this week a routine blood test showed she > was no longer anemic. Yea! All those vitamins and leafy greens must be paying > off. > > Sorry to hear about your bird. With a pet as vocal as that, I'm sure it will > be hard to adjust to the silence. I'm going nuts packing this week. On the > 27th the movers arrive. Yikes, I'd better get organized and quick. Too bad I > can't e-pack! > Best, > N. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 1999 Report Share Posted May 24, 1999 Hi Georgina, We are back after some holidays in Denmark with the family. 2.5 hours ferry transport across the sea. It is sad to loose a pet. Last year when I was away from home for a longer period I once got a call from Vic crying that she had lost her pet Sebastian. (I heared in the background all three kids crying at the same time.) Sorry to hear Josh had to increase doses. Seems that it was not due to an infection? Possibly only some natural fluctuation of the JRA? Hope he improves fast! Cheers Helge ---------- > Fra: Georgina <gmckin@...> > Til: < onelist>; stillsgroup <stillsdisease@...> > Emne: [ ] A Little Sadness Today > Dato: 21. mai 1999 13:08 > > From: Georgina <gmckin@...> > > Hi Everyone, > > Just thought I'd say hello and tell you that we are a little bit sad > today. Baby, our pet cockatiel, had an accident and several hours later, > died. We're missing him so much. He was the most beautiful pied 'tiel. > We'd had him for 5 years, since the day after he was weaned. Out of our > whole flock he was > the best talker, the most lovable, the most talented singer. The house > seems so quiet without him whistling Pop Goes The Weasel and The > Inspector Gadget song. I'm sitting here typing and even missing that > he's not joining me at the keyboard, pecking and stepping on unnecessary > letters and bobbing that bright yellow crested head, looking up > innocently and adoringly. He was such a spirited bird. A real adventurer > and a little rascal. And now he's gone. But we do have some wonderful > memories and those, I hope, will last forever. > > And ... Josh needed to see the pediatrician today. He hasn't been > feeling too good these past couple of days. Major rash. Raised and > somewhat itchy but in the normal places. Slight fevers (around 101.5). > Increased muscle and joint pain. Some pain when taking deep breaths. > Lungs sounded clear and okay. Blood tests and cultures were done. Doctor > called the rheumatologist. We decided not to make him rough it out like > last time. That was a long, hard 6 weeks. Instead, starting in the > morning, he's back on an increased dose of prednisone. Instead of 15mgs > he'll be taking 30, again. I hope that helps quickly and we can try to > taper down in a reasonable period of time. I hope we'll all start > feeling better, soon. > > Aloha, > Georgina > > > ------------------------------------------------------------------------ > What was YOUR favorite part?! > > Tell other Star Wars fans at ONElist! > ------------------------------------------------------------------------ > Visit my homepage for a list of sites with info on childhood arthritis: > http://www.geocities.com/Heartland/Village/8414/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 1999 Report Share Posted May 25, 1999 Thanks Helge. It is a sad thing. Time heals all wounds, they say. So it will get easier. And yes, it was very strange for Josh to just start getting sick like that, since he just recovered not too long ago from that last flare. He seems to be getting better already. Raising the prednisone dose always seems to be a quick fix. And I am grateful for that. What would we do if one day, it didn't have any effect? How come they can't figure out a way, though, to deliver the benefits without all the side effects? It's been around for a long time already. Wouldn't you think they'd have figured that out by now? Aloha, Georgina ps So, you've had another holiday? You're doing a lot of travelling these days :-) I hope you and the family had a nice time. That's a long ferry ride! What did you do while you were in Denmark? Helge Heitmann wrote: > From: " Helge Heitmann " <feynman@...> > > Hi Georgina, > > We are back after some holidays in Denmark with the family. 2.5 hours ferry > transport across the sea. > > It is sad to loose a pet. Last year when I was away from home for a longer > period I once got a call from Vic crying that she had lost her pet > Sebastian. (I heared in the background all three kids crying at the same > time.) > > Sorry to hear Josh had to increase doses. Seems that it was not due to an > infection? Possibly only some natural fluctuation of the JRA? Hope he > improves fast! > > Cheers > Helge Quote Link to comment Share on other sites More sharing options...
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