Guest guest Posted June 8, 2002 Report Share Posted June 8, 2002 Dearest Luanne, I am so sorry for Ty having another bad reaction to the remicade treatment. I am sorry for how difficult it was for you as a mother to see him so ill. You are in my prayers daily. I hope you can get some rest today both of you, and have a break from stress, I know that is hard under the circumstances. Luanne, you are such a wonderful Mom and you are such an encouragement to me and others, please take care, I love you. Ruth > Hi to everyone... > > I want to thank everyone for the prayers for Tyler....these infusions have > become more and more difficult and stressful....and yesterday was no > better.... > > Unfortunately it was a very tough and long day...We left here at 5am and got > there at 7am...His doctor was there when we got there and we discussed some > things and he and Ty goofed with each other as usual.....Then they take > weight and vitals and get him set up for the day....Then he gets his IV, has > labs taken..Doc wanted a special lab taken...can't remember the > name...something like a HACK...will tell if he is building anti- biodies > against the Remicade... and gets all the pretreatment....then finally he can > get started getting the infusion of Remicade...rate starts at 10mgs per hour > and then increases....usually up to 250 per hr....but Ty never gets that > far...Last time he had trouble at 60....So this time they are only taking him > to 40....so it means that this will be a very long day.....no problem....as > long as he can get it.... > 2 other girls come in and get set up for Remicade...just strainght > infusions....so they will only be there about 2 1/2 hours.... > Ty is sleeping and I am talking to one of the moms....when he wakes up and > clears his throat...a first sign for him....oh course I am always watching > him like a hawk...so ask him if he is alright...he says " Ithink so " and > clears his throat again...and then he says no....I call nurse and with that > he is bright red...can't breathe....eyes are red and tearing...and is now > purple....it all happens that fast....they stop everything and put him back > on O2...his heart rate is sky high....and doctors and nurses are all at our > side...working on him....Very Scary....He had only been at the 40 rate for > 30min....only received 27 mgs of Remicade...it is only 10:30 am....the docs > all decide to let him rest for an hour and then start it again...at 10 and > only go to 20.....Ty wants to try knowing that with out the Remicade he > really starts to fall apart quickly...been there and done that.....so he > rests....his head is pounding and he aches all over.....his color comes > back...and his eyes are white again....I can't explain well enough how hard > this is to watch him go thru this.... > When they listened to his lungs they said that he was not moving much > air....This was a really bad one....hit him very very fast..... > Of course the other families are now wondering what is going on....the doc > explains that people can react to the infusion BUT that with all the > infusions they do that Ty is the worst...and no one even comes > close....Great.....they are reasurred but I am not.....Now my head is > pounding....The docs keep close watch on him...keep listening to his lungs > and asking him how he is.... > > Finally they decide to start again...and if any problems come up at all he is > to be stopped and that will be the end of Remicade for him.... > also if he can successfully get the rest of the infusion they will do another > HACK test...to see if his wild immune system is now also fighting the > Remicade...making him react....Geez ...you would think that with taking > cyclosporine and getting a medrol pack and then a gram of solumedrol (1000 mg) > that his immune system should not have the strength to attack like this..... > > Well the rest of the day was unevenful...he was moved to the GI floor in the > Hosp...and put on heart monitors and other things...and was able to get the > rest of the infusion....got more Benadryl...one of the pretreatments...during > the infusion....and then got the blood test at the end....we were ready to > leave at 11:30pm....and got home at amost 2....I was so tired...did a lot of > staring at him all day...poor kid...I know he feels like a freak.....sees > these young girls come in and get this without any trouble.... > > Needless to say I am in worse shape than him today....he did some sleeping > there and wanted to drive home but I was afraid with all that in him....so I > drove.... > I am exhausted....mentally and physically....but I think more mentally at > this point.... > So not really sure where we go from here....alot of talking to be done...I > know Ty wants to get them....but I worry about how many times his body can go > into shock like this..... > Well this is way too long....but needed to talk to someone.....who > understands .... > > thanks for being here and I will try to get to reading some emails > later....when I can keep my eyes open....I think I just need to get myself > into something else and get my head away from this for a day or so.... > > take care and talk soon > Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2002 Report Share Posted June 8, 2002 Luanne, Hang in there. You are going to have to take it moment by moment instead of day by day. Surround yourself with what gives you strength and take all that it may offer you. It may be sitting in a garden, looking at a sunset today or just plain staring at a favorite picture. Rest, bebuild yourself and the lord will give you the strength you need to carry on. My prayers are with you and Ty. annMN [ ] Ty's Remicade Hi to everyone... I want to thank everyone for the prayers for Tyler....these infusions have become more and more difficult and stressful....and yesterday was no better.... Unfortunately it was a very tough and long day...We left here at 5am and got there at 7am...His doctor was there when we got there and we discussed some things and he and Ty goofed with each other as usual.....Then they take weight and vitals and get him set up for the day....Then he gets his IV, has labs taken..Doc wanted a special lab taken...can't remember the name...something like a HACK...will tell if he is building anti-biodies against the Remicade... and gets all the pretreatment....then finally he can get started getting the infusion of Remicade...rate starts at 10mgs per hour and then increases....usually up to 250 per hr....but Ty never gets that far...Last time he had trouble at 60....So this time they are only taking him to 40....so it means that this will be a very long day.....no problem....as long as he can get it.... 2 other girls come in and get set up for Remicade...just strainght infusions....so they will only be there about 2 1/2 hours.... Ty is sleeping and I am talking to one of the moms....when he wakes up and clears his throat...a first sign for him....oh course I am always watching him like a hawk...so ask him if he is alright...he says "Ithink so" and clears his throat again...and then he says no....I call nurse and with that he is bright red...can't breathe....eyes are red and tearing...and is now purple....it all happens that fast....they stop everything and put him back on O2...his heart rate is sky high....and doctors and nurses are all at our side...working on him....Very Scary....He had only been at the 40 rate for 30min....only received 27 mgs of Remicade...it is only 10:30 am....the docs all decide to let him rest for an hour and then start it again...at 10 and only go to 20.....Ty wants to try knowing that with out the Remicade he really starts to fall apart quickly...been there and done that.....so he rests....his head is pounding and he aches all over.....his color comes back...and his eyes are white again....I can't explain well enough how hard this is to watch him go thru this.... When they listened to his lungs they said that he was not moving much air....This was a really bad one....hit him very very fast..... Of course the other families are now wondering what is going on....the doc explains that people can react to the infusion BUT that with all the infusions they do that Ty is the worst...and no one even comes close....Great.....they are reasurred but I am not.....Now my head is pounding....The docs keep close watch on him...keep listening to his lungs and asking him how he is.... Finally they decide to start again...and if any problems come up at all he is to be stopped and that will be the end of Remicade for him.... also if he can successfully get the rest of the infusion they will do another HACK test...to see if his wild immune system is now also fighting the Remicade...making him react....Geez ...you would think that with taking cyclosporine and getting a medrol pack and then a gram of solumedrol(1000 mg) that his immune system should not have the strength to attack like this..... Well the rest of the day was unevenful...he was moved to the GI floor in the Hosp...and put on heart monitors and other things...and was able to get the rest of the infusion....got more Benadryl...one of the pretreatments...during the infusion....and then got the blood test at the end....we were ready to leave at 11:30pm....and got home at amost 2....I was so tired...did a lot of staring at him all day...poor kid...I know he feels like a freak.....sees these young girls come in and get this without any trouble.... Needless to say I am in worse shape than him today....he did some sleeping there and wanted to drive home but I was afraid with all that in him....so I drove.... I am exhausted....mentally and physically....but I think more mentally at this point.... So not really sure where we go from here....alot of talking to be done...I know Ty wants to get them....but I worry about how many times his body can go into shock like this..... Well this is way too long....but needed to talk to someone.....who understands .... thanks for being here and I will try to get to reading some emails later....when I can keep my eyes open....I think I just need to get myself into something else and get my head away from this for a day or so.... take care and talk soon Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2002 Report Share Posted June 8, 2002 Luanne, I wish there was some other way Ty could get what he needs and without so many scares. I've come to dread these days for the two of you. I just don't understand why the stuff that's supposed to make us better can be the same thing that can kill us. I have to say that I'm so much happier that it's me who's sick and not . I am sending strength and a big hug. Give Ty a hug for me too. Debbie/FL > Hi to everyone... > > I want to thank everyone for the prayers for Tyler....these infusions have > become more and more difficult and stressful....and yesterday was no > better.... > > Unfortunately it was a very tough and long day...We left here at 5am and got > there at 7am...His doctor was there when we got there and we discussed some > things and he and Ty goofed with each other as usual.....Then they take > weight and vitals and get him set up for the day....Then he gets his IV, has > labs taken..Doc wanted a special lab taken...can't remember the > name...something like a HACK...will tell if he is building anti- biodies > against the Remicade... and gets all the pretreatment....then finally he can > get started getting the infusion of Remicade...rate starts at 10mgs per hour > and then increases....usually up to 250 per hr....but Ty never gets that > far...Last time he had trouble at 60....So this time they are only taking him > to 40....so it means that this will be a very long day.....no problem....as > long as he can get it.... > 2 other girls come in and get set up for Remicade...just strainght > infusions....so they will only be there about 2 1/2 hours.... > Ty is sleeping and I am talking to one of the moms....when he wakes up and > clears his throat...a first sign for him....oh course I am always watching > him like a hawk...so ask him if he is alright...he says " Ithink so " and > clears his throat again...and then he says no....I call nurse and with that > he is bright red...can't breathe....eyes are red and tearing...and is now > purple....it all happens that fast....they stop everything and put him back > on O2...his heart rate is sky high....and doctors and nurses are all at our > side...working on him....Very Scary....He had only been at the 40 rate for > 30min....only received 27 mgs of Remicade...it is only 10:30 am....the docs > all decide to let him rest for an hour and then start it again...at 10 and > only go to 20.....Ty wants to try knowing that with out the Remicade he > really starts to fall apart quickly...been there and done that.....so he > rests....his head is pounding and he aches all over.....his color comes > back...and his eyes are white again....I can't explain well enough how hard > this is to watch him go thru this.... > When they listened to his lungs they said that he was not moving much > air....This was a really bad one....hit him very very fast..... > Of course the other families are now wondering what is going on....the doc > explains that people can react to the infusion BUT that with all the > infusions they do that Ty is the worst...and no one even comes > close....Great.....they are reasurred but I am not.....Now my head is > pounding....The docs keep close watch on him...keep listening to his lungs > and asking him how he is.... > > Finally they decide to start again...and if any problems come up at all he is > to be stopped and that will be the end of Remicade for him.... > also if he can successfully get the rest of the infusion they will do another > HACK test...to see if his wild immune system is now also fighting the > Remicade...making him react....Geez ...you would think that with taking > cyclosporine and getting a medrol pack and then a gram of solumedrol (1000 mg) > that his immune system should not have the strength to attack like this..... > > Well the rest of the day was unevenful...he was moved to the GI floor in the > Hosp...and put on heart monitors and other things...and was able to get the > rest of the infusion....got more Benadryl...one of the pretreatments...during > the infusion....and then got the blood test at the end....we were ready to > leave at 11:30pm....and got home at amost 2....I was so tired...did a lot of > staring at him all day...poor kid...I know he feels like a freak.....sees > these young girls come in and get this without any trouble.... > > Needless to say I am in worse shape than him today....he did some sleeping > there and wanted to drive home but I was afraid with all that in him....so I > drove.... > I am exhausted....mentally and physically....but I think more mentally at > this point.... > So not really sure where we go from here....alot of talking to be done...I > know Ty wants to get them....but I worry about how many times his body can go > into shock like this..... > Well this is way too long....but needed to talk to someone.....who > understands .... > > thanks for being here and I will try to get to reading some emails > later....when I can keep my eyes open....I think I just need to get myself > into something else and get my head away from this for a day or so.... > > take care and talk soon > Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2002 Report Share Posted June 10, 2002 Dear Luanne, We are so sorry Ty had such a difficult time with the remicade infusion. The frustration level as well as the anxiety must be two tough balls to juggle. You guys are in our thoughts and prayers.... Cheryl & Randy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2002 Report Share Posted June 10, 2002 Luanne, I am sorry to hear that Ty had such a difficult time with the infusion. I know that it must have been frightening for both of you. Keeping you in my prayers. Carol BBNLU@... wrote: Hi to everyone... I want to thank everyone for the prayers for Tyler....these infusions have become more and more difficult and stressful....and yesterday was no better.... Unfortunately it was a very tough and long day...We left here at 5am and got there at 7am...His doctor was there when we got there and we discussed some things and he and Ty goofed with each other as usual.....Then they take weight and vitals and get him set up for the day....Then he gets his IV, has labs taken..Doc wanted a special lab taken...can't remember the name...something like a HACK...will tell if he is building anti-biodies against the Remicade... and gets all the pretreatment....then finally he can get started getting the infusion of Remicade...rate starts at 10mgs per hour and then increases....usually up to 250 per hr....but Ty never gets that far...Last time he had trouble at 60....So this time they are only taking him to 40....so it means that this will be a very long day.....no problem....as long as he can get it.... 2 other girls come in and get set up for Remicade...just strainght infusions....so they will only be there about 2 1/2 hours.... Ty is sleeping and I am talking to one of the moms....when he wakes up and clears his throat...a first sign for him....oh course I am always watching him like a hawk...so ask him if he is alright...he says "Ithink so" and clears his throat again...and then he says no....I call nurse and with that he is bright red...can't breathe....eyes are red and tearing...and is now purple....it all happens that fast....they stop everything and put him back on O2...his heart rate is sky high....and doctors and nurses are all at our side...working on him....Very Scary....He had only been at the 40 rate for 30min....only received 27 mgs of Remicade...it is only 10:30 am....the docs all decide to let him rest for an hour and then start it again...at 10 and only go to 20.....Ty wants to try knowing that with out the Remicade he really starts to fall apart quickly...been there and done that.....so he rests....his head is pounding and he aches all over.....his color comes back...and his eyes are white again....I can't explain well enough how hard this is to watch him go thru this.... When they listened to his lungs they said that he was not moving much air....This was a really bad one....hit him very very fast..... Of course the other families are now wondering what is going on....the doc explains that people can react to the infusion BUT that with all the infusions they do that Ty is the worst...and no one even comes close....Great.....they are reasurred but I am not.....Now my head is pounding....The docs keep close watch on him...keep listening to his lungs and asking him how he is.... Finally they decide to start again...and if any problems come up at all he is to be stopped and that will be the end of Remicade for him.... also if he can successfully get the rest of the infusion they will do another HACK test...to see if his wild immune system is now also fighting the Remicade...making him react....Geez ....you would think that with taking cyclosporine and getting a medrol pack and then a gram of solumedrol(1000 mg) that his immune system should not have the strength to attack like this..... Well the rest of the day was unevenful...he was moved to the GI floor in the Hosp...and put on heart monitors and other things...and was able to get the rest of the infusion....got more Benadryl...one of the pretreatments...during the infusion....and then got the blood test at the end....we were ready to leave at 11:30pm....and got home at amost 2....I was so tired...did a lot of staring at him all day...poor kid...I know he feels like a freak.....sees these young girls come in and get this without any trouble.... Needless to say I am in worse shape than him today....he did some sleeping there and wanted to drive home but I was afraid with all that in him....so I drove.... I am exhausted....mentally and physically....but I think more mentally at this point.... So not really sure where we go from here....alot of talking to be done...I know Ty wants to get them....but I worry about how many times his body can go into shock like this..... Well this is way too long....but needed to talk to someone.....who understands .... thanks for being here and I will try to get to reading some emails later....when I can keep my eyes open....I think I just need to get myself into something else and get my head away from this for a day or so.... take care and talk soon Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2002 Report Share Posted July 26, 2002 Hi everyone.... First I want to thank everyone for all the well wishes.....it really was nice knowing that there were so many people thinking of us on a very tough day... It was a very busy day....but the most important thing was that the infusion was a success....he had a little trouble in the very beginning...chest tightness...so he was taken off...for awhile and then started up again....and the rest of the day went well...they did decide to give him some benadryl every 6 hours...so he got 3 doses....which helped him to sleep most of the time....so that was good...we got there at 7am and the pretreatment started...and the actual Remicade started at just after 9am.....he had trouble at 9:45am...and then it was finally finished at 10:30pm....he was taken to the GI floor of the hosp at about 3pm to finish up the infusion...the GI Suite where the infusion is given closes at about 4:30 so they move him to a room..... They ran the HACA test again...it is supposed to be under 2...his was 26.33 the last time...his doctor has talked to the company that makes Remicade...looks like he is building anti biodies to the Remicade and that is why he has such a problem with the treatment..... also ran another lab called NOD2Gene assay.... the company that makes Remicade is interested in Tyler talking to a group about having crohns and getting Remicade....his doctor is recommending Ty for this...so will see how that turns out.... they have also been talking to someone at the NIH...Immunologist....who is interested in Ty....they will be away for awhile but would like to see Tyler....so that is good...just not sure when that is going to happen...he is also scheduled to see Immunology in Childrens Hosp...The doctor there used to be at the NIH and Hopkins...so she is very interesting in seeing Tyler.....and also getting him into the NIH....This is really a tough place to get into....they were first trying to get him into a study...and that just didn't work...so now they are just going for Immunology...since his GI doctor thinks that is where he should be seen.....and Immunology at Childrens feels the same way...so we wait and see..... He is scheduled for the 26th of Aug for colonoscopy, enoscopy and dexa...and then a MRCP...all the same day....another long day...but 2 of the tests are really not a big deal.... the next Remicade is Sept 9th... Immunology is Oct 3rd...although they are going to try and get him in sooner... RA is Oct.31.....so we are pretty set for the next couple of months....of course there will be another Remicade in Oct.... We also talked about Humicade...CDP571....not as potent as Remicade....but if he can tolerate it then they could just up the dosage...so that is what they will plan....WHEN IT IS AVAILABLE ....it is still in studies ...and have to wait for the approval....not sure when that will be....so for now he is still going to have to use Remicade.... got his labs....they are mostly about the same....meaning they are mostly off...but not much different than usual....his playlets are alittle lower...his WBC is down from 2.3 to 1.9.... so very busy and long day....but successful day....Ty should be good for another month....YEAH..... leave hosp room at 10:45...get to garage ....when we get to the car we find that it has been broken into...my CD player was ripped out....what a mess....they messed up my door...lock....was glad that I could close the door....had to talk to security...fill out reports...so tired...but angry...really not upset at the loss of the CD...its only a thing....but thought it was pretty low that someone came into a garage of a Childrens Hosp and brought a device to break into cars....and steal....really low.....your there with your sick kid and come out to find out someone has done this....really low.... But the bottom line....it was a Great Day....Ty got his meds.....didn't turn blue and get a thick neck....so a great day.... on the way home Ty told me that he would take his CD player out of his jeep and put it in my truck...I told him that wasn't necessary....but he said that I have given him so many things so many times it was the least he could do....what a guy.....but I will make him keep his...I can do with out for now....I miss the music and the clock but just don't have the money right now to get a new one....oh well that is ok.... we usually listen to a 60's radio station on the way home and sing all the old songs...it amazes me that he knows so many of them...so I did miss that.....but we talked...so that was just as good.... needless to say we were both beat when we got home.... Ahhhhh bed never felt soooo good.... So anyways....again thanks to so many of you that were thinking of us ....a successful day....a month of easy breathing now.... take care and talk soon Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2002 Report Share Posted July 26, 2002 Dear Luanne, I’m glad things overall went well despite a long day at the hospital and to find some dork ripped off your CD player. What does Remicade do? [ ] Ty's Remicade Hi everyone.... First I want to thank everyone for all the well wishes.....it really was nice knowing that there were so many people thinking of us on a very tough day... It was a very busy day....but the most important thing was that the infusion was a success....he had a little trouble in the very beginning...chest tightness...so he was taken off...for awhile and then started up again....and the rest of the day went well...they did decide to give him some benadryl every 6 hours...so he got 3 doses....which helped him to sleep most of the time....so that was good...we got there at 7am and the pretreatment started...and the actual Remicade started at just after 9am.....he had trouble at 9:45am...and then it was finally finished at 10:30pm....he was taken to the GI floor of the hosp at about 3pm to finish up the infusion...the GI Suite where the infusion is given closes at about 4:30 so they move him to a room..... They ran the HACA test again...it is supposed to be under 2...his was 26.33 the last time...his doctor has talked to the company that makes Remicade...looks like he is building anti biodies to the Remicade and that is why he has such a problem with the treatment..... also ran another lab called NOD2Gene assay.... the company that makes Remicade is interested in Tyler talking to a group about having crohns and getting Remicade....his doctor is recommending Ty for this...so will see how that turns out.... they have also been talking to someone at the NIH...Immunologist....who is interested in Ty....they will be away for awhile but would like to see Tyler....so that is good...just not sure when that is going to happen...he is also scheduled to see Immunology in Childrens Hosp...The doctor there used to be at the NIH and Hopkins...so she is very interesting in seeing Tyler.....and also getting him into the NIH....This is really a tough place to get into....they were first trying to get him into a study...and that just didn't work...so now they are just going for Immunology...since his GI doctor thinks that is where he should be seen.....and Immunology at Childrens feels the same way...so we wait and see..... He is scheduled for the 26th of Aug for colonoscopy, enoscopy and dexa...and then a MRCP...all the same day....another long day...but 2 of the tests are really not a big deal.... the next Remicade is Sept 9th... Immunology is Oct 3rd...although they are going to try and get him in sooner... RA is Oct.31.....so we are pretty set for the next couple of months....of course there will be another Remicade in Oct.... We also talked about Humicade...CDP571....not as potent as Remicade....but if he can tolerate it then they could just up the dosage...so that is what they will plan....WHEN IT IS AVAILABLE ....it is still in studies ...and have to wait for the approval....not sure when that will be....so for now he is still going to have to use Remicade.... got his labs....they are mostly about the same....meaning they are mostly off...but not much different than usual....his playlets are alittle lower...his WBC is down from 2.3 to 1.9.... so very busy and long day....but successful day....Ty should be good for another month....YEAH..... leave hosp room at 10:45...get to garage ....when we get to the car we find that it has been broken into...my CD player was ripped out....what a mess....they messed up my door...lock....was glad that I could close the door....had to talk to security...fill out reports...so tired...but angry...really not upset at the loss of the CD...its only a thing....but thought it was pretty low that someone came into a garage of a Childrens Hosp and brought a device to break into cars....and steal....really low.....your there with your sick kid and come out to find out someone has done this....really low.... But the bottom line....it was a Great Day....Ty got his meds.....didn't turn blue and get a thick neck....so a great day.... on the way home Ty told me that he would take his CD player out of his jeep and put it in my truck...I told him that wasn't necessary....but he said that I have given him so many things so many times it was the least he could do....what a guy.....but I will make him keep his...I can do with out for now....I miss the music and the clock but just don't have the money right now to get a new one....oh well that is ok.... we usually listen to a 60's radio station on the way home and sing all the old songs...it amazes me that he knows so many of them...so I did miss that.....but we talked...so that was just as good.... needless to say we were both beat when we got home.... Ahhhhh bed never felt soooo good.... So anyways....again thanks to so many of you that were thinking of us ....a successful day....a month of easy breathing now.... take care and talk soon Luanne Ty's mom Group Rules 1. Please no religious, political, race or sexual preference discussions. 2. NO slamming of other members, advertising or vulgarity. Thank you! To UNsubscribe send a blank e-mail to -unsubscribeegroups Your use of is subject to the Terms of Service. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2002 Report Share Posted July 28, 2002 Hi: Glad to hear that almost everything went fine. You didn't need to have the car broken into. My prayers will be with Ty. Ty still sounds like a great person. Sue/WI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2002 Report Share Posted July 28, 2002 Hello everyone,I just joined your group.Hope to speak to you soon. Dotty Quote Link to comment Share on other sites More sharing options...
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