Guest guest Posted August 16, 2006 Report Share Posted August 16, 2006 Jo - so sorry for Bayly - he had just started to respond well with the MTX injection and to have this happen. I always say that Mother's intuition is always right. My Ken always thinks I am over reacting - but 99% of the time I am right. I stopped getting upset with him though - I think it is just his way of coping with Hunter's illness. I hope Bayly gets to feeling better soon - and I hope your week get's better, too. Sandi Ken Hunter (7 Systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2006 Report Share Posted August 16, 2006 Seems our really rotten run of luck continues. After a mysterious accident Tuesday afternoon (I was at work and can't get a full story) my beautiful brave little Bayly boy has ended up with a broken arm! A Greenstick fracture just below the head of the Radius, so not a big break, and doesn't need manipulation, but a Back Slab cast, and more physio. Poor little fella has been telling me it's so sore, and it is obviously swollen (to me, not Grant apparently), and it's taken me 24 hours to get him into a doctor and X-Ray. Had to pull some strings with the Chief of Paediatrics at the hospital. I suspected a fracture, but Grant kept telling me there was NO fracture, and 'Bayly was just putting it on'. Now here's my vent- Nasty flashbacks to the onset of Bay's arthritis, as that's what Grant said then, but I kept saying something was wrong with him. Mother's Intuition wins again. Sadly. I told Grant that Bayly is so brave, and doesn't complain about pain he lives with every day. So why would he 'put it on " ??? Why do I feel like a single parent, going through this? Jo Bayly, 4, Extended Oligo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2006 Report Share Posted August 17, 2006 Jo! I am so sorry to hear about Bayly's lil arm. I hope it heals well and feels better really soon! hugs!!!! Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2006 Report Share Posted August 17, 2006 Jo, Sorry to hear about Bayly's arm. I hope it heals quickly. (Aundrea 11 systemic jra)- -- In , " Jo & Grant " <joking70@...> wrote: > > Seems our really rotten run of luck continues. > > After a mysterious accident Tuesday afternoon (I was at work and > can't get a full story) my beautiful brave little Bayly boy has ended > up with a broken arm! > > A Greenstick fracture just below the head of the Radius, so not a big > break, and doesn't need manipulation, but a Back Slab cast, and more > physio. > > Poor little fella has been telling me it's so sore, and it is > obviously swollen (to me, not Grant apparently), and it's taken me 24 > hours to get him into a doctor and X-Ray. Had to pull some strings > with the Chief of Paediatrics at the hospital. I suspected a > fracture, but Grant kept telling me there was NO fracture, and 'Bayly > was just putting it on'. Now here's my vent- Nasty flashbacks to the > onset of Bay's arthritis, as that's what Grant said then, but I kept > saying something was wrong with him. Mother's Intuition wins again. > Sadly. > > I told Grant that Bayly is so brave, and doesn't complain about pain > he lives with every day. So why would he 'put it on " ??? > > Why do I feel like a single parent, going through this? > > Jo > Bayly, 4, Extended Oligo > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2006 Report Share Posted August 17, 2006 Jo, can totally relate to the whole cast thing..bummer. Hope he heals quickly. I'm sure it won't slow him down too much. Sending happy thoughs & hugs your way!! Jo & Grant <joking70@...> wrote: Seems our really rotten run of luck continues. After a mysterious accident Tuesday afternoon (I was at work and can't get a full story) my beautiful brave little Bayly boy has ended up with a broken arm! A Greenstick fracture just below the head of the Radius, so not a big break, and doesn't need manipulation, but a Back Slab cast, and more physio. Poor little fella has been telling me it's so sore, and it is obviously swollen (to me, not Grant apparently), and it's taken me 24 hours to get him into a doctor and X-Ray. Had to pull some strings with the Chief of Paediatrics at the hospital. I suspected a fracture, but Grant kept telling me there was NO fracture, and 'Bayly was just putting it on'. Now here's my vent- Nasty flashbacks to the onset of Bay's arthritis, as that's what Grant said then, but I kept saying something was wrong with him. Mother's Intuition wins again. Sadly. I told Grant that Bayly is so brave, and doesn't complain about pain he lives with every day. So why would he 'put it on " ??? Why do I feel like a single parent, going through this? Jo Bayly, 4, Extended Oligo Beth Yohnk Happy Thoughts..Be Well Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2006 Report Share Posted August 20, 2006 -Jo, I'm still playing catch up, I was sorry to read that Bayly has broken his arm, poor little tyke. Hows he doing now with the cast?. Is he coping ok. How are the MTX shots going, are you getting use to it now. Its sad really how routine it all becomes. Sticking needles into our kids should never feel routine ( it sucks.... hugs Helen and (9,systemic) -- In , " Jo & Grant " <joking70@...> wrote: > > Seems our really rotten run of luck continues. > > After a mysterious accident Tuesday afternoon (I was at work and > can't get a full story) my beautiful brave little Bayly boy has ended > up with a broken arm! > > A Greenstick fracture just below the head of the Radius, so not a big > break, and doesn't need manipulation, but a Back Slab cast, and more > physio. > > Poor little fella has been telling me it's so sore, and it is > obviously swollen (to me, not Grant apparently), and it's taken me 24 > hours to get him into a doctor and X-Ray. Had to pull some strings > with the Chief of Paediatrics at the hospital. I suspected a > fracture, but Grant kept telling me there was NO fracture, and 'Bayly > was just putting it on'. Now here's my vent- Nasty flashbacks to the > onset of Bay's arthritis, as that's what Grant said then, but I kept > saying something was wrong with him. Mother's Intuition wins again. > Sadly. > > I told Grant that Bayly is so brave, and doesn't complain about pain > he lives with every day. So why would he 'put it on " ??? > > Why do I feel like a single parent, going through this? > > Jo > Bayly, 4, Extended Oligo > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2008 Report Share Posted April 16, 2008 Big hugs! I hope that this is a brief flare or something that can be gotten under control once his doctors return. They always seem to be out of town when you need them!! That'sa good he has PT especialy with using a wheelchair because of course their's the problem of muscle contractions from not using the legs while at the same time trying not to aggrivate it. Such a paradox. This diasease is terrible and it's hard because so many people don't understand it. Anyways, I hope things improve real soon. Issadora On Wed, Apr 16, 2008 at 2:04 AM, Jo & Grant <joking70@...> wrote: Well what a day we've had. Still having, in fact (except for Grant whohas finally crashed out and trying to get some sleep before his midnightstart again).We suspect there is jaw involvement, as Bayly hasn't been able to open his mouth fully for about two weeks, has terrible trouble chewinganything, and is talking in the funny little voice he uses when he hasarthritis pain in his neck. He's also complained of ear pain. There even appears to be a slight swelling around the TMJ, right and left.On top of that, for the past few days on and off, Bay's been unable towalk first thing in the morning, and at night. The last 2 days, he has barely been able to walk at all. We've narrowed the pain down to hisleft hip- a previously unaffected joint. The final give away thatsomething was really wrong, was him asking for pain medication! HeHATES the stuff, yet has even tolerated a full dose without it giving much relief.So with our Paed Rheumy out of the country for the last couple of weeks,and Bay's paediatrician here off on medical leave himself, I managed to get Bayly into his physio and GP for urgent appointments today. In short, a number of the physios at JHH Children's Hospital, and twoOTs, are pretty sure it's arthritis in his hip. To the point where theyrecommended a wheelchair! See, with my current back pain, I can't even carry him great distances, and really shouldn't be lifting him. And thelooks you get when you push a child his size in a stroller! Some mightrecall that rude bloke at Westfield one day who told us Bayly was too big to be getting pushed around in a pram (expletive deleted here forthat jerk)!Now, Bayly thinks it's a grand adventure, and we're trying desperatelyto help him think that. But I have been in or near tears for the entire day. Grant even broke down (but don't tell him I told you). But Bay haspicked up the skill of getting himself around quite well- hey, what's afew more dents in the walls anyhow? :-)Since we've already had a pre-Enbrel discussion with the Paed Rheumy, it may be where we're headed.We are just now back from the family doctor who has diagnosed JIA inBayly's left hip, and at least one side of the jaw. So it's off for anultrasound tomorrow, more blood tests, and probably increase the Pred at the very least.That's 4 more joints since the car accident in November...Can I say again, I hate this bloody disease?!JoBayly, 5, extended oligo (looks like up to 12 joints, and counting!!!) -- " Life- Like the flutter of wings... feel your hollow wings rushing... " (AFI- Silver and Cold). my Flight in life is a metamorphosis of growth and this flutter of wings is within me awaiting to find a space to find it's flow... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2008 Report Share Posted April 16, 2008 Jo, So sorry to hear that you are having such a rough time of it and even more sorry that Bayly is in the pain and so immobile. I hope that things turn around for your quickly. It is good to know that Grant can break down with this with you. It just shows that you have his support as you go through this. I would love for Jaye's father to show sympathy and really let her know he sympathyzes with her. Instead all we get is him grumbling because I pay the medical bills rather then reducing his child support so that he could have more fun. I hope you have a better day. Veri & Jaye 14 poly bad news for Bayly Well what a day we've had. Still having, in fact (except for Grant who has finally crashed out and trying to get some sleep before his midnight start again). We suspect there is jaw involvement, as Bayly hasn't been able to open his mouth fully for about two weeks, has terrible trouble chewing anything, and is talking in the funny little voice he uses when he has arthritis pain in his neck. He's also complained of ear pain. There even appears to be a slight swelling around the TMJ, right and left. On top of that, for the past few days on and off, Bay's been unable to walk first thing in the morning, and at night. The last 2 days, he has barely been able to walk at all. We've narrowed the pain down to his left hip- a previously unaffected joint. The final give away that something was really wrong, was him asking for pain medication! He HATES the stuff, yet has even tolerated a full dose without it giving much relief. So with our Paed Rheumy out of the country for the last couple of weeks, and Bay's paediatrician here off on medical leave himself, I managed to get Bayly into his physio and GP for urgent appointments today. In short, a number of the physios at JHH Children's Hospital, and two OTs, are pretty sure it's arthritis in his hip. To the point where they recommended a wheelchair! See, with my current back pain, I can't even carry him great distances, and really shouldn't be lifting him. And the looks you get when you push a child his size in a stroller! Some might recall that rude bloke at Westfield one day who told us Bayly was too big to be getting pushed around in a pram (expletive deleted here for that jerk)! Now, Bayly thinks it's a grand adventure, and we're trying desperately to help him think that. But I have been in or near tears for the entire day. Grant even broke down (but don't tell him I told you). But Bay has picked up the skill of getting himself around quite well- hey, what's a few more dents in the walls anyhow? :-) Since we've already had a pre-Enbrel discussion with the Paed Rheumy, it may be where we're headed. We are just now back from the family doctor who has diagnosed JIA in Bayly's left hip, and at least one side of the jaw. So it's off for an ultrasound tomorrow, more blood tests, and probably increase the Pred at the very least. That's 4 more joints since the car accident in November... Can I say again, I hate this bloody disease?! Jo Bayly, 5, extended oligo (looks like up to 12 joints, and counting!!!) Get the MapQuest Toolbar, Maps, Traffic, Directions More! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2008 Report Share Posted April 16, 2008 This disease is horribly sad and so unfair. I'm crying for Bayly, crying for you, it just tears my heart out that he has gone through all of this at the tender age of 5. I just don't understand and hope and pray that in our lifetime we will have a cure.... I am still holding onto hope for Bayly. Isabelle showed signs of hip involvement about a year ago but then it just as mysteriously vanished. It spread to both ankles and the other knee though at the time and that's when we started MTX. It's a very out of control feeling to sit by and see your child's disease progress so rapidly for no apparent reason. It's vicious that way. Many prayers, Hadley (Isabelle 4 yrs. JIA) > > > Well what a day we've had. Still having, in fact (except for Grant who > has finally crashed out and trying to get some sleep before his midnight > start again). > > We suspect there is jaw involvement, as Bayly hasn't been able to open > his mouth fully for about two weeks, has terrible trouble chewing > anything, and is talking in the funny little voice he uses when he has > arthritis pain in his neck. He's also complained of ear pain. There even > appears to be a slight swelling around the TMJ, right and left. > > On top of that, for the past few days on and off, Bay's been unable to > walk first thing in the morning, and at night. The last 2 days, he has > barely been able to walk at all. We've narrowed the pain down to his > left hip- a previously unaffected joint. The final give away that > something was really wrong, was him asking for pain medication! He > HATES the stuff, yet has even tolerated a full dose without it giving > much relief. > > So with our Paed Rheumy out of the country for the last couple of weeks, > and Bay's paediatrician here off on medical leave himself, I managed to > get Bayly into his physio and GP for urgent appointments today. > > In short, a number of the physios at JHH Children's Hospital, and two > OTs, are pretty sure it's arthritis in his hip. To the point where they > recommended a wheelchair! See, with my current back pain, I can't even > carry him great distances, and really shouldn't be lifting him. And the > looks you get when you push a child his size in a stroller! Some might > recall that rude bloke at Westfield one day who told us Bayly was too > big to be getting pushed around in a pram (expletive deleted here for > that jerk)! > > Now, Bayly thinks it's a grand adventure, and we're trying desperately > to help him think that. But I have been in or near tears for the entire > day. Grant even broke down (but don't tell him I told you). But Bay has > picked up the skill of getting himself around quite well- hey, what's a > few more dents in the walls anyhow? :-) > > Since we've already had a pre-Enbrel discussion with the Paed Rheumy, it > may be where we're headed. > > We are just now back from the family doctor who has diagnosed JIA in > Bayly's left hip, and at least one side of the jaw. So it's off for an > ultrasound tomorrow, more blood tests, and probably increase the Pred at > the very least. > > That's 4 more joints since the car accident in November... > > Can I say again, I hate this bloody disease?! > > Jo > > Bayly, 5, extended oligo (looks like up to 12 joints, and counting!!!) > Quote Link to comment Share on other sites More sharing options...
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