Guest guest Posted April 6, 2006 Report Share Posted April 6, 2006 In a message dated 4/7/2006 12:01:29 A.M. Eastern Standard Time, bc.price@... writes: n has MAS( macrophage activation syndrome) They think that they caught it early. Goodness! I am sorry to hear that n has MAS. How scary. Do they think the mono dx was wrong or is this what led to MAS? Are the meds helping her? Will keep her and you all in my thoughts and prayers. Take care. Patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2006 Report Share Posted April 6, 2006 Mono threw her into it. She is on 1000mg solumedrol per day . We are going day by day. Cyclosporin may be added tomorrow depending on what labs say. She is also on morphine. We could use some prayers. (n,17, systemic) On Apr 6, 2006, at 9:12 PM, ThreeMayEmeralds@... wrote: > > In a message dated 4/7/2006 12:01:29 A.M. Eastern Standard Time, > bc.price@... writes: > > n has MAS( macrophage activation syndrome) They think that they > caught it early. > > > > Goodness! I am sorry to hear that n has MAS. How scary. Do > they > think the mono dx was wrong or is this what led to MAS? Are the > meds helping her? > > Will keep her and you all in my thoughts and prayers. > > Take care. > Patty > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2006 Report Share Posted April 6, 2006 , Are you staying at the hospital with her? Is she still in a lot of pain or has the moriphine kicked in? How did they determine that she has mas in addition to mono? Make sure you get some rest. I am sure that is hard to do when you must be so concerned for n. Are you pleased with the doctors that are overseeing her care? I have been praying for you all day! This seems really serious and I sure hope that the labs show that things are getting better. (Aundrea 10 systemic)- -- In , Price <bc.price@...> wrote: > > Mono threw her into it. She is on 1000mg solumedrol per day . We > are going day by day. Cyclosporin may be added tomorrow depending on > what labs say. She is also on morphine. We could use some prayers. > (n,17, systemic) > > > > > On Apr 6, 2006, at 9:12 PM, ThreeMayEmeralds@... wrote: > > > > > In a message dated 4/7/2006 12:01:29 A.M. Eastern Standard Time, > > bc.price@... writes: > > > > n has MAS( macrophage activation syndrome) They think that they > > caught it early. > > > > > > > > Goodness! I am sorry to hear that n has MAS. How scary. Do > > they > > think the mono dx was wrong or is this what led to MAS? Are the > > meds helping her? > > > > Will keep her and you all in my thoughts and prayers. > > > > Take care. > > Patty > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2006 Report Share Posted April 6, 2006 My husband is staying with her. We have two other children, with the youngest at 8 years old. I am trying not to alarm them too much. I will be there bright and early tomorrow. My husband knows to call me if n hiccups. The blood test showed that she had MAS. The mono triggered it. Everything seems to hurt her, and I don't see too much relief with the morphine. I believe that she is in very good hands. The doctor just had a 15 year old systemic boy with MAS earlier in the week. That boy was in the hospital for 6 days and has recovered. Thanks for the prayers. You know what I think every systemic parent should do? I have kept a folder on my desk the last several years with MAS articles. We brought that to the ER today and had the ER doctor read it. The ER doctor had never even seen a systemic child before. You have to move so quick with MAS. It is the nightmare for every systemic parent. You have to educate the doctors on the fly. On Apr 6, 2006, at 9:52 PM, sonia1md wrote: > , > Are you staying at the hospital with her? Is she still in a lot of > pain or has the moriphine kicked in? How did they determine that > she has mas in addition to mono? Make sure you get some rest. I am > sure that is hard to do when you must be so concerned for n. > > Are you pleased with the doctors that are overseeing her care? > > I have been praying for you all day! This seems really serious and I > sure hope that the labs show that things are getting better. > > (Aundrea 10 systemic)- > > -- In , Price <bc.price@...> wrote: >> >> Mono threw her into it. She is on 1000mg solumedrol per day . > We >> are going day by day. Cyclosporin may be added tomorrow depending > on >> what labs say. She is also on morphine. We could use some > prayers. >> (n,17, systemic) >> >> >> >> >> On Apr 6, 2006, at 9:12 PM, ThreeMayEmeralds@... wrote: >> >>> >>> In a message dated 4/7/2006 12:01:29 A.M. Eastern Standard Time, >>> bc.price@... writes: >>> >>> n has MAS( macrophage activation syndrome) They think > that they >>> caught it early. >>> >>> >>> >>> Goodness! I am sorry to hear that n has MAS. How scary. > Do >>> they >>> think the mono dx was wrong or is this what led to MAS? Are > the >>> meds helping her? >>> >>> Will keep her and you all in my thoughts and prayers. >>> >>> Take care. >>> Patty >>> >>> >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2006 Report Share Posted April 6, 2006 , Those are good words of advice about the Mas folder. I must admit I don't know much about it, but I am thinking there may be a file posted here...I will look into it and add it to Aundrea's health folders. You did a great job listening to your gut and providing the er doc with the lit. I am glad they moved quickly and got her treatment. Thank goodness you didn't hold off for that appt tomorrow and just stepped up and got her seen today! Thats great that your husband is able to take the nightshift so that you can be home with the younger kids. Its good to tag-team these things, especially since you may be looking at a longer hospitalization and recovery at home after that. It sure would be nice if they could find something else to help with the pain. Poor thing, sounds like she is completely miserable! I am off to bed but will check the board again tomorrow and hope to hear that things are starting to improve for n. Blessings, (Aundrea 10 systemic jra) > >> > >>> > >>> In a message dated 4/7/2006 12:01:29 A.M. Eastern Standard Time, > >>> bc.price@ writes: > >>> > >>> n has MAS( macrophage activation syndrome) They think > > that they > >>> caught it early. > >>> > >>> > >>> > >>> Goodness! I am sorry to hear that n has MAS. How scary. > > Do > >>> they > >>> think the mono dx was wrong or is this what led to MAS? Are > > the > >>> meds helping her? > >>> > >>> Will keep her and you all in my thoughts and prayers. > >>> > >>> Take care. > >>> Patty > >>> > >>> > >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2006 Report Share Posted April 7, 2006 Hi , I finally made it back to post more and am seeing what occurred during the day yesterday................Holly also had mas when she had mono, i had forgotten to add that yesterday morning and never made it back to post yesterday........This week time for me has been nil............please let us know how she is doing and we will be keeping her in our prayers....... Luv and hugs, Aj and Holly (12 yrs old, systemic jra since 9/94) _www.caringbridge.org/visit/holly_ (http://www.caringbridge.org/visit/holly) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2006 Report Share Posted April 7, 2006 Just going through all the emails and read about the MAS diagnosis. I am so glad they caught it right away and what a great idea about the folder. You are so right about educating drs whenever you can. Once again, praying for you all, Michele Re: and n My husband is staying with her. We have two other children, with the youngest at 8 years old. I am trying not to alarm them too much. I will be there bright and early tomorrow. My husband knows to call me if n hiccups. The blood test showed that she had MAS. The mono triggered it. Everything seems to hurt her, and I don't see too much relief with the morphine. I believe that she is in very good hands. The doctor just had a 15 year old systemic boy with MAS earlier in the week. That boy was in the hospital for 6 days and has recovered. Thanks for the prayers. You know what I think every systemic parent should do? I have kept a folder on my desk the last several years with MAS articles. We brought that to the ER today and had the ER doctor read it. The ER doctor had never even seen a systemic child before. You have to move so quick with MAS. It is the nightmare for every systemic parent. You have to educate the doctors on the fly. On Apr 6, 2006, at 9:52 PM, sonia1md wrote: > , > Are you staying at the hospital with her? Is she still in a lot of > pain or has the moriphine kicked in? How did they determine that > she has mas in addition to mono? Make sure you get some rest. I am > sure that is hard to do when you must be so concerned for n. > > Are you pleased with the doctors that are overseeing her care? > > I have been praying for you all day! This seems really serious and I > sure hope that the labs show that things are getting better. > > (Aundrea 10 systemic)- > > -- In , Price <bc.price@...> wrote: >> >> Mono threw her into it. She is on 1000mg solumedrol per day . > We >> are going day by day. Cyclosporin may be added tomorrow depending > on >> what labs say. She is also on morphine. We could use some > prayers. >> (n,17, systemic) >> >> >> >> >> On Apr 6, 2006, at 9:12 PM, ThreeMayEmeralds@... wrote: >> >>> >>> In a message dated 4/7/2006 12:01:29 A.M. Eastern Standard Time, >>> bc.price@... writes: >>> >>> n has MAS( macrophage activation syndrome) They think > that they >>> caught it early. >>> >>> >>> >>> Goodness! I am sorry to hear that n has MAS. How scary. > Do >>> they >>> think the mono dx was wrong or is this what led to MAS? Are > the >>> meds helping her? >>> >>> Will keep her and you all in my thoughts and prayers. >>> >>> Take care. >>> Patty >>> >>> >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2006 Report Share Posted April 7, 2006 I am home only for a minute. n has taken a turn for the worse. She is in intensive care getting aid to breathe. She is in critical. On Apr 7, 2006, at 8:43 AM, Tepper, Michele wrote: > Just going through all the emails and read about the MAS diagnosis. > I am > so glad they caught it right away and what a great idea about the > folder. You are so right about educating drs whenever you can. Once > again, praying for you all, Michele > > Re: and n > > My husband is staying with her. We have two other children, with the > youngest at 8 years old. I am trying not to alarm them too much. I > will be there bright and early tomorrow. My husband knows to call me > if n hiccups. > > The blood test showed that she had MAS. The mono triggered it. > Everything seems to hurt her, and I don't see too much relief with > the morphine. > > I believe that she is in very good hands. The doctor just had a 15 > year old systemic boy with MAS earlier in the week. That boy was in > the hospital for 6 days and has recovered. Thanks for the prayers. > > You know what I think every systemic parent should do? I have kept a > folder on my desk the last several years with MAS articles. We > brought that to the ER today and had the ER doctor read it. The ER > doctor had never even seen a systemic child before. You have to move > so quick with MAS. It is the nightmare for every systemic parent. > You have to educate the doctors on the fly. > > > On Apr 6, 2006, at 9:52 PM, sonia1md wrote: > >> , >> Are you staying at the hospital with her? Is she still in a lot of >> pain or has the moriphine kicked in? How did they determine that >> she has mas in addition to mono? Make sure you get some rest. I am >> sure that is hard to do when you must be so concerned for n. >> >> Are you pleased with the doctors that are overseeing her care? >> >> I have been praying for you all day! This seems really serious and I >> sure hope that the labs show that things are getting better. >> >> (Aundrea 10 systemic)- >> >> -- In , Price <bc.price@...> wrote: >>> >>> Mono threw her into it. She is on 1000mg solumedrol per day . >> We >>> are going day by day. Cyclosporin may be added tomorrow depending >> on >>> what labs say. She is also on morphine. We could use some >> prayers. >>> (n,17, systemic) >>> >>> >>> >>> >>> On Apr 6, 2006, at 9:12 PM, ThreeMayEmeralds@... wrote: >>> >>>> >>>> In a message dated 4/7/2006 12:01:29 A.M. Eastern Standard Time, >>>> bc.price@... writes: >>>> >>>> n has MAS( macrophage activation syndrome) They think >> that they >>>> caught it early. >>>> >>>> >>>> >>>> Goodness! I am sorry to hear that n has MAS. How scary. >> Do >>>> they >>>> think the mono dx was wrong or is this what led to MAS? Are >> the >>>> meds helping her? >>>> >>>> Will keep her and you all in my thoughts and prayers. >>>> >>>> Take care. >>>> Patty >>>> >>>> >>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2006 Report Share Posted April 7, 2006 I am so sorry to hear that n is struggling so much. She and your family are in my prayers! Price <bc.price@...> wrote: I am home only for a minute. n has taken a turn for the worse. She is in intensive care getting aid to breathe. She is in critical. On Apr 7, 2006, at 8:43 AM, Tepper, Michele wrote: > Just going through all the emails and read about the MAS diagnosis. > I am > so glad they caught it right away and what a great idea about the > folder. You are so right about educating drs whenever you can. Once > again, praying for you all, Michele > > Re: and n > > My husband is staying with her. We have two other children, with the > youngest at 8 years old. I am trying not to alarm them too much. I > will be there bright and early tomorrow. My husband knows to call me > if n hiccups. > > The blood test showed that she had MAS. The mono triggered it. > Everything seems to hurt her, and I don't see too much relief with > the morphine. > > I believe that she is in very good hands. The doctor just had a 15 > year old systemic boy with MAS earlier in the week. That boy was in > the hospital for 6 days and has recovered. Thanks for the prayers. > > You know what I think every systemic parent should do? I have kept a > folder on my desk the last several years with MAS articles. We > brought that to the ER today and had the ER doctor read it. The ER > doctor had never even seen a systemic child before. You have to move > so quick with MAS. It is the nightmare for every systemic parent. > You have to educate the doctors on the fly. > > > On Apr 6, 2006, at 9:52 PM, sonia1md wrote: > >> , >> Are you staying at the hospital with her? Is she still in a lot of >> pain or has the moriphine kicked in? How did they determine that >> she has mas in addition to mono? Make sure you get some rest. I am >> sure that is hard to do when you must be so concerned for n. >> >> Are you pleased with the doctors that are overseeing her care? >> >> I have been praying for you all day! This seems really serious and I >> sure hope that the labs show that things are getting better. >> >> (Aundrea 10 systemic)- >> >> -- In , Price <bc.price@...> wrote: >>> >>> Mono threw her into it. She is on 1000mg solumedrol per day . >> We >>> are going day by day. Cyclosporin may be added tomorrow depending >> on >>> what labs say. She is also on morphine. We could use some >> prayers. >>> (n,17, systemic) >>> >>> >>> >>> >>> On Apr 6, 2006, at 9:12 PM, ThreeMayEmeralds@... wrote: >>> >>>> >>>> In a message dated 4/7/2006 12:01:29 A.M. Eastern Standard Time, >>>> bc.price@... writes: >>>> >>>> n has MAS( macrophage activation syndrome) They think >> that they >>>> caught it early. >>>> >>>> >>>> >>>> Goodness! I am sorry to hear that n has MAS. How scary. >> Do >>>> they >>>> think the mono dx was wrong or is this what led to MAS? Are >> the >>>> meds helping her? >>>> >>>> Will keep her and you all in my thoughts and prayers. >>>> >>>> Take care. >>>> Patty >>>> >>>> >>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2006 Report Share Posted April 8, 2006 ..............there is possibly enough to say right now............you are all in my prayers............ Luv and hugs, Aj and Holly (12 yrs old, systemic jra since 9/94) _www.caringbridge.org/visit/holly_ (http://www.caringbridge.org/visit/holly) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2006 Report Share Posted April 8, 2006 , n and fmaily, Our best wishes and big prayers to you all! I do not know what MAS is, but I certainly am worried for you. Hoping for a good safe recovery, Jo Bayly, 3, extended oligo > >>> > >>>> > >>>> In a message dated 4/7/2006 12:01:29 A.M. Eastern Standard Time, > >>>> bc.price@ writes: > >>>> > >>>> n has MAS( macrophage activation syndrome) They think > >> that they > >>>> caught it early. > >>>> > >>>> > >>>> > >>>> Goodness! I am sorry to hear that n has MAS. How scary. > >> Do > >>>> they > >>>> think the mono dx was wrong or is this what led to MAS? Are > >> the > >>>> meds helping her? > >>>> > >>>> Will keep her and you all in my thoughts and prayers. > >>>> > >>>> Take care. > >>>> Patty > >>>> > >>>> > >>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2006 Report Share Posted April 8, 2006 , please know we praying for a quick turnaround for n! Hang tight and hang tough... Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2006 Report Share Posted April 8, 2006 , Thank God they seemed to have caught it early! Thanks to an informed and prepared Mom! I am glad to hear the the Doc treating her has experience treating MAS. MAS is my biggest fear, was admitted with that diagnosis as well as possible systemic onset JRA when first admitted by Rheumatology when we first got our long awaited consult as 's " inknown " illness at the time - the solumedrol did the trick - though they put him on cyclosporine a few weeks later because he was not bouncing back as they'd like and his labs were still off - though I think that was more to treat the systemic symptoms that weren't going away - and possibly prevent another MAS episode. I believe you and I have talked about the need to act quickly before here, - as well as keeping the folder of MAS info. My folder is actually a document folder on my computer - but I think I will be printing it all out today and putting it in a hard copy folder in the bag I keep 's records in. You, n and your family are in my prayers. Val Rob's Mom (8,systemic) Re: and n My husband is staying with her. We have two other children, with the youngest at 8 years old. I am trying not to alarm them too much. I will be there bright and early tomorrow. My husband knows to call me if n hiccups. The blood test showed that she had MAS. The mono triggered it. Everything seems to hurt her, and I don't see too much relief with the morphine. I believe that she is in very good hands. The doctor just had a 15 year old systemic boy with MAS earlier in the week. That boy was in the hospital for 6 days and has recovered. Thanks for the prayers. You know what I think every systemic parent should do? I have kept a folder on my desk the last several years with MAS articles. We brought that to the ER today and had the ER doctor read it. The ER doctor had never even seen a systemic child before. You have to move so quick with MAS. It is the nightmare for every systemic parent. You have to educate the doctors on the fly. On Apr 6, 2006, at 9:52 PM, sonia1md wrote: > , > Are you staying at the hospital with her? Is she still in a lot of > pain or has the moriphine kicked in? How did they determine that > she has mas in addition to mono? Make sure you get some rest. I am > sure that is hard to do when you must be so concerned for n. > > Are you pleased with the doctors that are overseeing her care? > > I have been praying for you all day! This seems really serious and I > sure hope that the labs show that things are getting better. > > (Aundrea 10 systemic)- > > -- In , Price <bc.price@...> wrote: >> >> Mono threw her into it. She is on 1000mg solumedrol per day . > We >> are going day by day. Cyclosporin may be added tomorrow depending > on >> what labs say. She is also on morphine. We could use some > prayers. >> (n,17, systemic) >> >> >> >> >> On Apr 6, 2006, at 9:12 PM, ThreeMayEmeralds@... wrote: >> >>> >>> In a message dated 4/7/2006 12:01:29 A.M. Eastern Standard Time, >>> bc.price@... writes: >>> >>> n has MAS( macrophage activation syndrome) They think > that they >>> caught it early. >>> >>> >>> >>> Goodness! I am sorry to hear that n has MAS. How scary. > Do >>> they >>> think the mono dx was wrong or is this what led to MAS? Are > the >>> meds helping her? >>> >>> Will keep her and you all in my thoughts and prayers. >>> >>> Take care. >>> Patty >>> >>> >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2006 Report Share Posted April 8, 2006 , WE are all pressing in in prayer for your family, especially for n. I wish I could offer more comfort or help out in a tangible way...Please continue to give us a quick update as you are able. (aundrea 10 systemic jra)- -- In , Price <bc.price@...> wrote: > > I am home only for a minute. n has taken a turn for the worse. > She is in intensive care getting aid to breathe. She is in critical. > > On Apr 7, 2006, at 8:43 AM, Tepper, Michele wrote: > > > Just going through all the emails and read about the MAS diagnosis. > > I am > > so glad they caught it right away and what a great idea about the > > folder. You are so right about educating drs whenever you can. Once > > again, praying for you all, Michele > > > > Re: and n > > > > My husband is staying with her. We have two other children, with the > > youngest at 8 years old. I am trying not to alarm them too much. I > > will be there bright and early tomorrow. My husband knows to call me > > if n hiccups. > > > > The blood test showed that she had MAS. The mono triggered it. > > Everything seems to hurt her, and I don't see too much relief with > > the morphine. > > > > I believe that she is in very good hands. The doctor just had a 15 > > year old systemic boy with MAS earlier in the week. That boy was in > > the hospital for 6 days and has recovered. Thanks for the prayers. > > > > You know what I think every systemic parent should do? I have kept a > > folder on my desk the last several years with MAS articles. We > > brought that to the ER today and had the ER doctor read it. The ER > > doctor had never even seen a systemic child before. You have to move > > so quick with MAS. It is the nightmare for every systemic parent. > > You have to educate the doctors on the fly. > > > > > > On Apr 6, 2006, at 9:52 PM, sonia1md wrote: > > > >> , > >> Are you staying at the hospital with her? Is she still in a lot of > >> pain or has the moriphine kicked in? How did they determine that > >> she has mas in addition to mono? Make sure you get some rest. I am > >> sure that is hard to do when you must be so concerned for n. > >> > >> Are you pleased with the doctors that are overseeing her care? > >> > >> I have been praying for you all day! This seems really serious and I > >> sure hope that the labs show that things are getting better. > >> > >> (Aundrea 10 systemic)- > >> > >> -- In , Price <bc.price@> wrote: > >>> > >>> Mono threw her into it. She is on 1000mg solumedrol per day . > >> We > >>> are going day by day. Cyclosporin may be added tomorrow depending > >> on > >>> what labs say. She is also on morphine. We could use some > >> prayers. > >>> (n,17, systemic) > >>> > >>> > >>> > >>> > >>> On Apr 6, 2006, at 9:12 PM, ThreeMayEmeralds@ wrote: > >>> > >>>> > >>>> In a message dated 4/7/2006 12:01:29 A.M. Eastern Standard Time, > >>>> bc.price@ writes: > >>>> > >>>> n has MAS( macrophage activation syndrome) They think > >> that they > >>>> caught it early. > >>>> > >>>> > >>>> > >>>> Goodness! I am sorry to hear that n has MAS. How scary. > >> Do > >>>> they > >>>> think the mono dx was wrong or is this what led to MAS? Are > >> the > >>>> meds helping her? > >>>> > >>>> Will keep her and you all in my thoughts and prayers. > >>>> > >>>> Take care. > >>>> Patty > >>>> > >>>> > >>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2006 Report Share Posted April 8, 2006 and n - my wishes for a speedy recovery and my concern are with you. Jan and Louis Re: and n , n and fmaily, Our best wishes and big prayers to you all! I do not know what MAS is, but I certainly am worried for you. Hoping for a good safe recovery, Jo Bayly, 3, extended oligo > >>> > >>>> > >>>> In a message dated 4/7/2006 12:01:29 A.M. Eastern Standard Time, > >>>> bc.price@ writes: > >>>> > >>>> n has MAS( macrophage activation syndrome) They think > >> that they > >>>> caught it early. > >>>> > >>>> > >>>> > >>>> Goodness! I am sorry to hear that n has MAS. How scary. > >> Do > >>>> they > >>>> think the mono dx was wrong or is this what led to MAS? Are > >> the > >>>> meds helping her? > >>>> > >>>> Will keep her and you all in my thoughts and prayers. > >>>> > >>>> Take care. > >>>> Patty > >>>> > >>>> > >>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2006 Report Share Posted April 8, 2006 Sorry to hear n has taken a turn for the worse. Keeping prayers going your way. Take care. Patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2006 Report Share Posted April 8, 2006 I have not logged on in a few days and Im shocked that things have turned much worse for n. I have not been able tot hink of much else than hows she doing all day. I hope by the time you are able tor ead these messages and have time to post, the news will be of a quick turnaround for her. Our thoughts and prayers are with you all. MAS is such a huge fear of mine and im sure all parents of kids with systemic. I will be following suit and printing out infomation and putting it in Nicks medcial file. Hugs Helen and (8,systemic) Hugs..Helen DH Dan (22)(16)(13)Zachary(11)(8) (6) ----Original Message Follows---- From: carneyval@... Reply- Subject: Re: and n Date: Sat, 08 Apr 2006 09:26:12 -0400 , Thank God they seemed to have caught it early! Thanks to an informed and prepared Mom! I am glad to hear the the Doc treating her has experience treating MAS. MAS is my biggest fear, was admitted with that diagnosis as well as possible systemic onset JRA when first admitted by Rheumatology when we first got our long awaited consult as 's " inknown " illness at the time - the solumedrol did the trick - though they put him on cyclosporine a few weeks later because he was not bouncing back as they'd like and his labs were still off - though I think that was more to treat the systemic symptoms that weren't going away - and possibly prevent another MAS episode. I believe you and I have talked about the need to act quickly before here, - as well as keeping the folder of MAS info. My folder is actually a document folder on my computer - but I think I will be printing it all out today and putting it in a hard copy folder in the bag I keep 's records in. You, n and your family are in my prayers. Val Rob's Mom (8,systemic) Re: and n My husband is staying with her. We have two other children, with the youngest at 8 years old. I am trying not to alarm them too much. I will be there bright and early tomorrow. My husband knows to call me if n hiccups. The blood test showed that she had MAS. The mono triggered it. Everything seems to hurt her, and I don't see too much relief with the morphine. I believe that she is in very good hands. The doctor just had a 15 year old systemic boy with MAS earlier in the week. That boy was in the hospital for 6 days and has recovered. Thanks for the prayers. You know what I think every systemic parent should do? I have kept a folder on my desk the last several years with MAS articles. We brought that to the ER today and had the ER doctor read it. The ER doctor had never even seen a systemic child before. You have to move so quick with MAS. It is the nightmare for every systemic parent. You have to educate the doctors on the fly. On Apr 6, 2006, at 9:52 PM, sonia1md wrote: > , > Are you staying at the hospital with her? Is she still in a lot of > pain or has the moriphine kicked in? How did they determine that > she has mas in addition to mono? Make sure you get some rest. I am > sure that is hard to do when you must be so concerned for n. > > Are you pleased with the doctors that are overseeing her care? > > I have been praying for you all day! This seems really serious and I > sure hope that the labs show that things are getting better. > > (Aundrea 10 systemic)- > > -- In , Price <bc.price@...> wrote: >> >> Mono threw her into it. She is on 1000mg solumedrol per day . > We >> are going day by day. Cyclosporin may be added tomorrow depending > on >> what labs say. She is also on morphine. We could use some > prayers. >> (n,17, systemic) >> >> >> >> >> On Apr 6, 2006, at 9:12 PM, ThreeMayEmeralds@... wrote: >> >>> >>> In a message dated 4/7/2006 12:01:29 A.M. Eastern Standard Time, >>> bc.price@... writes: >>> >>> n has MAS( macrophage activation syndrome) They think > that they >>> caught it early. >>> >>> >>> >>> Goodness! I am sorry to hear that n has MAS. How scary. > Do >>> they >>> think the mono dx was wrong or is this what led to MAS? Are > the >>> meds helping her? >>> >>> Will keep her and you all in my thoughts and prayers. >>> >>> Take care. >>> Patty >>> >>> >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2006 Report Share Posted April 8, 2006 n is on a ventilator. Keep praying. (n, 17,systemic) On Apr 8, 2006, at 8:21 AM, ajaoky@... wrote: > , please know we praying for a quick turnaround for n! > Hang tight > and hang tough... > Donna > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2006 Report Share Posted April 8, 2006 I am praying every moment of the day for her!! I am so sorry she is going through what she is going through!! With Love and Prayers (JAS, 21) Price <bc.price@...> wrote: n is on a ventilator. Keep praying. (n, 17,systemic) On Apr 8, 2006, at 8:21 AM, ajaoky@... wrote: > , please know we praying for a quick turnaround for n! > Hang tight > and hang tough... > Donna > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2006 Report Share Posted April 8, 2006 ; We will be praying hard. I will also be praying for her doctors and nurses who are caring for her. Please keep us updated when you get the chance. and Rob 16 Spondy On Sat, 8 Apr 2006 19:29:52 -0700 Price <bc.price@...> writes: n is on a ventilator. Keep praying. (n, 17,systemic) On Apr 8, 2006, at 8:21 AM, ajaoky@... wrote: > , please know we praying for a quick turnaround for n! > Hang tight > and hang tough... > Donna > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2006 Report Share Posted April 8, 2006 ...I have been praying all day for n. I am so worried for you guys. Praying that God will perform a miracle and heal her quickly....Thank you for taking the time to update us....I know many are checking the board today looking for a word from you and praying that there will be good news soon! So sorry for this nightmare that you are enduring! :-( (Aundrea 10 systemic jra)- -- In , Price <bc.price@...> wrote: > > n is on a ventilator. Keep praying. (n, 17,systemic) > > > > On Apr 8, 2006, at 8:21 AM, ajaoky@... wrote: > > > , please know we praying for a quick turnaround for n! > > Hang tight > > and hang tough... > > Donna > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2006 Report Share Posted April 9, 2006 n is resting tonight. They have prepared us that she may be on a ventilator for a week and a half. n is strong. She is getting very good care. She has her own nurse. One on one, so you can't ask for anything more than that. It is a nightmare that is for sure. Last time this week, she was out on a date. You never know what God has in store for you. Keep praying. On Apr 8, 2006, at 9:19 PM, sonia1md wrote: > ...I have been praying all day for n. I am so worried for > you guys. Praying that God will perform a miracle and heal her > quickly....Thank you for taking the time to update us....I know many > are checking the board today looking for a word from you and praying > that there will be good news soon! > > So sorry for this nightmare that you are enduring! :-( > > (Aundrea 10 systemic jra)- > > -- In , Price <bc.price@...> wrote: >> >> n is on a ventilator. Keep praying. (n, > 17,systemic) >> >> >> >> On Apr 8, 2006, at 8:21 AM, ajaoky@... wrote: >> >>> , please know we praying for a quick turnaround for > n! >>> Hang tight >>> and hang tough... >>> Donna >>> >>> >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2006 Report Share Posted April 9, 2006 I am really sorry to hear that your daughter has gotten so ill. I pray that she recovers quickly. I know it is a hard time for you but you need to make sure you care for yourself as well, so you have the stregnth to be there for your daugthter. Your daughter and family will be in my thoughts and prayers. Val mom to Marissa 8, 16 and 14. > >> > >>> , please know we praying for a quick turnaround for > > n! > >>> Hang tight > >>> and hang tough... > >>> Donna > >>> > >>> > >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2006 Report Share Posted April 9, 2006 Hi , I am pretty new here and do more reading than posting, but just wanted you to know our entire family is praying for n. Stay strong! Thanks for the advice about the MAS info folder, I had never thought about that before, and am going to take your advice. Take care and know that you have a ton of people pulling for n. Sophie (mom to , age 5 systemic jra) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2006 Report Share Posted April 9, 2006 My family is continuing to pray for n and your family. It sounds like she is strong and a fighter which will certainly be to her advantage. Take Care. Kim In a message dated 4/9/2006 5:44:35 AM Central Standard Time, bc.price@... writes: n is resting tonight. They have prepared us that she may be on a ventilator for a week and a half. n is strong. She is getting very good care. She has her own nurse. One on one, so you can't ask for anything more than that. It is a nightmare that is for sure. Last time this week, she was out on a date. You never know what God has in store for you. Keep praying. Quote Link to comment Share on other sites More sharing options...
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