Guest guest Posted April 26, 2005 Report Share Posted April 26, 2005 Thanks Summer. I sure hope it starts feeling better soon also. Her rheumy was hesitant to say it is arthritis before ruling out every other possible scenario. We may still have to have an MRI done, but I have **hoping** we don't have to go through that! There really aren't many options left for her. She can't take any NSAID's and she is maxed out on Methotrexate and Cyclosporine. Other than restarting Prednisone or Enbrel I think our only other option is Remicade... Alia and Caroline, age 3, poly and uveitis Re: Caroline's Update Alia, I am so sorry that Caroline is having such a rough time. Poor thing in a soft cast! I hope her neck and jaw start feeling better soon. If she does go back on Enbrel, I hope it does better for her this time. Is there anything else the Dr. can give her? Summer Gabi 7 poly " Pranke, Alia " <Alia.Pranke@...> wrote: Hi everyone... I am sorry I have been away from the board. Caroline has just been through a lot this past week and I haven't had much time to post or read. She did test positive for strep and a bronchial infection last Thursday. She was put on Zithromax for 5 days and I think it helped. She has a cold now (of course!), but otherwise she is good. We saw her rheumy yesterday and she does have stiffness in her neck and jaw. She can only open her jaw about 3/4 of the way. We had x-rays done and they were read by an orthopedic and a radiologist and nothing popped up out of the ordinary. So we are restarting Prednisone at 20mg/ day for the next three days and then we go back in on Friday to get re-checked. If her neck is better she will rule that she has arthritis in her neck now and we will re-look at medicines. She is thinking about restarting Enbrel again at a lower dosage. She also put her in a soft neck cast until Friday so she is walking around with that big brace on her little neck. It's soo sad to see That's it for now. I will really try to catch up on posts soon! Alia and Caroline, age 3, poly and uveitis --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2005 Report Share Posted April 26, 2005 Hi Michele - They put her in a cast because she has lost most range of motion in her neck. Her rheumy said that a lot of time when the neck is involved they hold their shoulders and it causes muscle spasms. She put her in a cast in hopes of relaxing her shoulders and hopefully then getting her ROM back... Alia and Caroline, age 3, poly and uveitis Caroline's Update Hi everyone... I am sorry I have been away from the board. Caroline has just been through a lot this past week and I haven't had much time to post or read. She did test positive for strep and a bronchial infection last Thursday. She was put on Zithromax for 5 days and I think it helped. She has a cold now (of course!), but otherwise she is good. We saw her rheumy yesterday and she does have stiffness in her neck and jaw. She can only open her jaw about 3/4 of the way. We had x-rays done and they were read by an orthopedic and a radiologist and nothing popped up out of the ordinary. So we are restarting Prednisone at 20mg/ day for the next three days and then we go back in on Friday to get re-checked. If her neck is better she will rule that she has arthritis in her neck now and we will re-look at medicines. She is thinking about restarting Enbrel again at a lower dosage. She also put her in a soft neck cast until Friday so she is walking around with that big brace on her little neck. It's soo sad to see That's it for now. I will really try to catch up on posts soon! Alia and Caroline, age 3, poly and uveitis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2005 Report Share Posted April 26, 2005 --Alia, Your post made me cry imagining sweet Caroline in a neck collar. That girl just does not get a break... I'm wondering if it is not time to move on to try remicade. I know that this drug scares you and its not a decision made lightly but something just has to start working for Miss C, and soon. thinking of you hugs Helen and (7,systemic) - In , " Pranke, Alia " <Alia.Pranke@t...> wrote: > Hi everyone... I am sorry I have been away from the board. Caroline has just > been through a lot this past week and I haven't had much time to post or > read. > > She did test positive for strep and a bronchial infection last Thursday. She > was put on Zithromax for 5 days and I think it helped. She has a cold now > (of course!), but otherwise she is good. We saw her rheumy yesterday and she > does have stiffness in her neck and jaw. She can only open her jaw about 3/4 > of the way. We had x-rays done and they were read by an orthopedic and a > radiologist and nothing popped up out of the ordinary. > > So we are restarting Prednisone at 20mg/ day for the next three days and > then we go back in on Friday to get re-checked. If her neck is better she > will rule that she has arthritis in her neck now and we will re- look at > medicines. She is thinking about restarting Enbrel again at a lower dosage. > She also put her in a soft neck cast until Friday so she is walking around > with that big brace on her little neck. It's soo sad to see > > That's it for now. I will really try to catch up on posts soon! > > Alia and Caroline, age 3, poly and uveitis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2005 Report Share Posted July 19, 2005 Hello everyone! It's been a while since I have posted an update on Caroline so I thought I would take the time (what little moments I have nowadays!). We saw her ENT and he looked at her CT scans and determined that she does have chronic sinusitus. We are scheduled to have surgery on August 15th. She is having new ear tubes put in, her adenoids out, her sinusus tapped and drained. She is also having her stomach acid checked for reflux and some tests done to see if she is building up and immunity to antibiotics - a total of 5 procedures being done that day. If all goes well she'll be out of the hospital in two days. After that she will have a pic line in for 6-8 weeks while they flush her out with massive anti-biotics. During this time they will be growing and culturing her sinus's to see what is going on in there. They hope that they can determine if all her illnesses have been JRA/medicine related or sinus related.... We also saw her opthomologist and her eyes continue to improve, but we are still on 5 drops a day + oral prednisone. We see him back on Thursday as well as her rheumy.. We can't wait to see everyone in Rhode Island. I know we have a TON of questions to be asking... Alia and Caroline, age 3, poly and uveitis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2005 Report Share Posted July 20, 2005 Wow, AliaWhat a lot for your little one to be going through. I hope they soon get things under control for her. I myself will be away for the next few weeks... on a sailboat far from any technology, so won't be up on the list at all, but will be thinking of Caroline and wishing her the best.Lynnmom to Mickey, 11, sytemic jra since 3On 19-Jul-05, at 10:30 PM, Alia Pranke wrote: Hello everyone! It's been a while since I have posted an update on Caroline so I thought I would take the time (what little moments I have nowadays!). We saw her ENT and he looked at her CT scans and determined that she does have chronic sinusitus. We are scheduled to have surgery on August 15th. She is having new ear tubes put in, her adenoids out, her sinusus tapped and drained. She is also having her stomach acid checked for reflux and some tests done to see if she is building up and immunity to antibiotics - a total of 5 procedures being done that day. If all goes well she'll be out of the hospital in two days. After that she will have a pic line in for 6-8 weeks while they flush her out with massive anti-biotics. During this time they will be growing and culturing her sinus's to see what is going on in there. They hope that they can determine if all her illnesses have been JRA/medicine related or sinus related.... We also saw her opthomologist and her eyes continue to improve, but we are still on 5 drops a day + oral prednisone. We see him back on Thursday as well as her rheumy.. We can't wait to see everyone in Rhode Island. I know we have a TON of questions to be asking... Alia and Caroline, age 3, poly and uveitis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2005 Report Share Posted November 21, 2005 Hi Alia, I hadn't seen any posts from you for awhile so I was worried that meant that Miss Caroline wasn't doing so well. She certainly seems very resistant to all the approaches you have tried so far and the sinus infections are only compounding her troubles. I hope the enbrel works this time...I can see why the docs are trying to use up all their options before going to the infusions, but at least there is another option out there if it becomes necesary. How is little Evan doing? I bet he is growing so fast, perhaps to fast! With all that you have going on, I am sure that you would long to just hold onto these baby days for a bit longer. They just grow up so darn quick! :-) I will keep Caroline and your family in my prayers............ Blessings, (Aundrea 10 systemic jra) --- In , <Alia.Pranke@t...> wrote: > > Hello All - > > The last few weeks have been a bit of a struggle for Miss Caroline. Her > neck has lost significant ROM and her knee's are swelling again. We > spoke with her rheumatologist and after going over many different > scenario's here is what we came up with. > > 1. Going back on Enbrel (Third time has to be the charm - right?). 1/2 > dosage for 2 weeks, if no significant improvement bump up to full dosage > 2. Starting permanent maintenance dosage of amoxicillin > 3. Start Nasonex once time per day (For her Sinusitis which usually is > agitated by Enbrel) > 4. Start Afrin for the first 4 days of any cold > > We have decided not to increase her Methotrexate or Cyclosporine any > more since we have tried that in the past and it made little if no > difference. > > We are going to start these medicines and see if they make a difference, > hopefully in the next few weeks. If not, we will be seriously > considering the Remicade infusions combined with the IVIG treatments > beginning next year. However, we want to hold out on the IVIG treatments > for as long as possible because her rheumy said once we start them they > are once a month treatments - LIFETIME!! > > We are waiting on pins and needles to see her eye doctor as we fear her > Uveitis could be flaring also. We see him in two weeks... > > Alia and Caroline, age 3, poly and uveitis > Evan, 21 weeks > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2005 Report Share Posted November 21, 2005 Alia. I was thinking of you guys and wondering when Carolines appt was. Im sorry that shes still struggling with her neck. Poor babe. I must say im shocked to read you are trying enbrel a 3 time!! Guess i should have kept yours and given it back to you )))) I will cross my fingers that 3 times a charm, hopefully with all the prevenative stuff you have it place it will help. How are you feeling, are you better???? hugs Helen and (8,systemic) -- In , <Alia.Pranke@t...> wrote: > > Hello All - > > The last few weeks have been a bit of a struggle for Miss Caroline. Her > neck has lost significant ROM and her knee's are swelling again. We > spoke with her rheumatologist and after going over many different > scenario's here is what we came up with. > > 1. Going back on Enbrel (Third time has to be the charm - right?). 1/2 > dosage for 2 weeks, if no significant improvement bump up to full dosage > 2. Starting permanent maintenance dosage of amoxicillin > 3. Start Nasonex once time per day (For her Sinusitis which usually is > agitated by Enbrel) > 4. Start Afrin for the first 4 days of any cold > > We have decided not to increase her Methotrexate or Cyclosporine any > more since we have tried that in the past and it made little if no > difference. > > We are going to start these medicines and see if they make a difference, > hopefully in the next few weeks. If not, we will be seriously > considering the Remicade infusions combined with the IVIG treatments > beginning next year. However, we want to hold out on the IVIG treatments > for as long as possible because her rheumy said once we start them they > are once a month treatments - LIFETIME!! > > We are waiting on pins and needles to see her eye doctor as we fear her > Uveitis could be flaring also. We see him in two weeks... > > Alia and Caroline, age 3, poly and uveitis > Evan, 21 weeks > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2005 Report Share Posted November 27, 2005 In a message dated 11/21/2005 12:37:49 P.M. Eastern Standard Time, Alia.Pranke@... writes: However, we want to hold out on the IVIG treatments for as long as possible because her rheumy said once we start them they are once a month treatments - LIFETIME!! We are waiting on pins and needles to see her Sorry for the late response to this, but i was wondering why it is lifetime??? Aj and Holly, 11 (systemic jra since 9/94)www.caringbridge.org/visit/holly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2005 Report Share Posted November 27, 2005 I was wondering that, too. Does she have lupus? My daughter is on ivig, and has been since March. She will taper off after she has hit no inflammation for one year. ', a 10 jra & uveitisajaomom@... wrote: In a message dated 11/21/2005 12:37:49 P.M. Eastern Standard Time, Alia.Pranke@... writes: However, we want to hold out on the IVIG treatments for as long as possible because her rheumy said once we start them they are once a month treatments - LIFETIME!! We are waiting on pins and needles to see her Sorry for the late response to this, but i was wondering why it is lifetime??? Aj and Holly, 11 (systemic jra since 9/94)www.caringbridge.org/visit/holly Music Unlimited - Access over 1 million songs. Try it free. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2005 Report Share Posted November 28, 2005 No, she doesn't. I am not sure why she said lifetime. I think it had something to do with the fact her body would become dependant on it. I am not sure though. I intend to ask her next week when we go she her... Alia and Caroline, age 3, poly and iritis ________________________________ From: [mailto: ] On Behalf Of ' Taunton Sent: Sunday, November 27, 2005 4:25 PM Subject: Re: Caroline's Update I was wondering that, too. Does she have lupus? My daughter is on ivig, and has been since March. She will taper off after she has hit no inflammation for one year. ', a 10 jra & uveitis ajaomom@... wrote: In a message dated 11/21/2005 12:37:49 P.M. Eastern Standard Time, Alia.Pranke@... writes: However, we want to hold out on the IVIG treatments for as long as possible because her rheumy said once we start them they are once a m! onth treatments - LIFETIME!! We are waiting on pins and needles to see her Sorry for the late response to this, but i was wondering why it is lifetime??? Aj and Holly, 11 (systemic jra since 9/94) www.caringbridge.org/visit/holly ________________________________ Music Unlimited - Access over 1 million songs. Try it free. <http://pa./*http://us.rd./evt=36035/*http://music.yah oo.com/unlimited/> Quote Link to comment Share on other sites More sharing options...
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