Guest guest Posted July 7, 2003 Report Share Posted July 7, 2003 no my daughter wasn't as we were in hoboken. do you think i should call dr. berman to tell him to watch the news - especially if dr. kaplan will be on it? dr tesler is the one who saw nicholas at 3 months and told me not to worry - wish he had seen dr. berman like he was supposed to. i would have your friend call and go in to see kaplan or berman caroline Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2003 Report Share Posted July 7, 2003 Caroline, That's so funny that you use the same peds. I had told dr. kaplan that if any of their patients have ??'s they can contact me. Dr. Kaplan may be on that CBS news story tonight that I posted about - the reporters are on their way to my house now... was the " guinea pig " so to speak for that practice - she's the first banded baby they've had. Kerri > I was just going to email you today to tell you that I picked up the paper > with you guys today! It was great - is very cute! We also use the same > pediatricians - well I use Dr. Berman at Soundview. I wished they told me at > 3 months to call Cranial Tech but at least he told me at 4 months! We get > molded this Friday and I am very anxious to get started! > Caroline Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2006 Report Share Posted March 28, 2006 Hey there Alia, That is one huge journey for such a little girl! I am very happy to hear that Miss Caroline is so good at taking the meds... considering the shopping list of them that she is on. We wish you well, and pray that she has a better reaction to the Remicade. At least it sounds like the doctors are giving her case serious attention. hugs, Jo Bayly, 3, extended oligo > > Hey everyone!! I just thought I would give a little update on Miss > Caroline. We went in for her second IVIG infusion yesterday. Even though > she had such a bad reaction last month , we were prepared to give it > another try. We premeditated her with Ibuprofen before we left in hopes > of helping with the bad headaches, etc. However, Dr. Akin had alternate > plans for us. > > Dr. Akin and our senior rheumatologist Dr. Vehe (Allie and Nick's doc) > have come up with another plan. They have weekly meetings to discuss > cases and for some reason (surprise surprise), Caroline is always on the > list! They feel that the IVIG is no longer for her. She is pretty > confident that she will continue to have the same reactions each month > and it's clearly just not worth it. So, we discussed at length what to > do and we decided her best path was REMICADE!! We of course had just > given her Enbrel on Sunday so she could only get a 1/2 dosage of > Remicade yesterday. We are going to be doing a pretty aggressive > Remicade treatment with infusions every four weeks. > > We discussed some of her other medicines and if all goes well with her > eye appointment in Boston, we will be hopefully be able to start > tapering and eventually get rid of the Oral Prednisone, the > Cyclosporine, and start to taper her Pred Forte eye drops. We also found > out that she is anemic now, so Dr. Akin started her on daily Folic Acid. > It doesn't come in liquid form, but the pill is very tiny (as many of > you know), so we decided to let her try it. We put it on her tongue and > had her drink through a straw (Thanks for the tip Helen!!) and it > worked!! We did a huge celebration and she was so proud of herself. It > was very cute! > > We also learned that she can't be on any Sulfa medicines with MTX. She > is on Sulfatrim right now because of her VUR, so Dr. Akin called her > urologist to let him know she needs to be on a different prophylaxis > treatment. Right now we are restarting the Amoxicillin so she at least > has something in her until we can get the new script. > > It was a day full of information, but for now we are set for her eye > appointment next week and then we go back to Dr. Akin on the 24th.. > > Alia and Caroline, age 4, poly and iritis > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2006 Report Share Posted March 28, 2006 Thanks Jo!! These little one's go through a lot that is for sure!! I sure hope Remicade works too!! Alia and Caroline, age 4, poly and iritis ________________________________ From: [mailto: ] On Behalf Of Jo & Grant Sent: Tuesday, March 28, 2006 2:09 PM Subject: Re: Caroline! Hey there Alia, That is one huge journey for such a little girl! I am very happy to hear that Miss Caroline is so good at taking the meds... considering the shopping list of them that she is on. We wish you well, and pray that she has a better reaction to the Remicade. At least it sounds like the doctors are giving her case serious attention. hugs, Jo Bayly, 3, extended oligo > > Hey everyone!! I just thought I would give a little update on Miss > Caroline. We went in for her second IVIG infusion yesterday. Even though > she had such a bad reaction last month , we were prepared to give it > another try. We premeditated her with Ibuprofen before we left in hopes > of helping with the bad headaches, etc. However, Dr. Akin had alternate > plans for us. > > Dr. Akin and our senior rheumatologist Dr. Vehe (Allie and Nick's doc) > have come up with another plan. They have weekly meetings to discuss > cases and for some reason (surprise surprise), Caroline is always on the > list! They feel that the IVIG is no longer for her. She is pretty > confident that she will continue to have the same reactions each month > and it's clearly just not worth it. So, we discussed at length what to > do and we decided her best path was REMICADE!! We of course had just > given her Enbrel on Sunday so she could only get a 1/2 dosage of > Remicade yesterday. We are going to be doing a pretty aggressive > Remicade treatment with infusions every four weeks. > > We discussed some of her other medicines and if all goes well with her > eye appointment in Boston, we will be hopefully be able to start > tapering and eventually get rid of the Oral Prednisone, the > Cyclosporine, and start to taper her Pred Forte eye drops. We also found > out that she is anemic now, so Dr. Akin started her on daily Folic Acid. > It doesn't come in liquid form, but the pill is very tiny (as many of > you know), so we decided to let her try it. We put it on her tongue and > had her drink through a straw (Thanks for the tip Helen!!) and it > worked!! We did a huge celebration and she was so proud of herself. It > was very cute! > > We also learned that she can't be on any Sulfa medicines with MTX. She > is on Sulfatrim right now because of her VUR, so Dr. Akin called her > urologist to let him know she needs to be on a different prophylaxis > treatment. Right now we are restarting the Amoxicillin so she at least > has something in her until we can get the new script. > > It was a day full of information, but for now we are set for her eye > appointment next week and then we go back to Dr. Akin on the 24th.. > > Alia and Caroline, age 4, poly and iritis > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2006 Report Share Posted March 28, 2006 Alia, That is wonderful that the doctors took the time to collaborate and come up with a new game plan for Caroline...She and Nick could have a little remicade party together! :-) Seems like everything might be coming together..Now just to see how things go in Boston. (Aundrea 10 systemic jra)- -- In , <Alia.Pranke@...> wrote: > > Hey everyone!! I just thought I would give a little update on Miss > Caroline. We went in for her second IVIG infusion yesterday. Even though > she had such a bad reaction last month , we were prepared to give it > another try. We premeditated her with Ibuprofen before we left in hopes > of helping with the bad headaches, etc. However, Dr. Akin had alternate > plans for us. > > Dr. Akin and our senior rheumatologist Dr. Vehe (Allie and Nick's doc) > have come up with another plan. They have weekly meetings to discuss > cases and for some reason (surprise surprise), Caroline is always on the > list! They feel that the IVIG is no longer for her. She is pretty > confident that she will continue to have the same reactions each month > and it's clearly just not worth it. So, we discussed at length what to > do and we decided her best path was REMICADE!! We of course had just > given her Enbrel on Sunday so she could only get a 1/2 dosage of > Remicade yesterday. We are going to be doing a pretty aggressive > Remicade treatment with infusions every four weeks. > > We discussed some of her other medicines and if all goes well with her > eye appointment in Boston, we will be hopefully be able to start > tapering and eventually get rid of the Oral Prednisone, the > Cyclosporine, and start to taper her Pred Forte eye drops. We also found > out that she is anemic now, so Dr. Akin started her on daily Folic Acid. > It doesn't come in liquid form, but the pill is very tiny (as many of > you know), so we decided to let her try it. We put it on her tongue and > had her drink through a straw (Thanks for the tip Helen!!) and it > worked!! We did a huge celebration and she was so proud of herself. It > was very cute! > > We also learned that she can't be on any Sulfa medicines with MTX. She > is on Sulfatrim right now because of her VUR, so Dr. Akin called her > urologist to let him know she needs to be on a different prophylaxis > treatment. Right now we are restarting the Amoxicillin so she at least > has something in her until we can get the new script. > > It was a day full of information, but for now we are set for her eye > appointment next week and then we go back to Dr. Akin on the 24th.. > > Alia and Caroline, age 4, poly and iritis > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2006 Report Share Posted March 28, 2006 Alia, I hope the appointment in Boston goes well. We'll look forward to hearing about it. has been on Remicade since December of '04 and it has been a blessing for her. I hope Caroline will also have wonderful results. Liz _____ From: [mailto: ] On Behalf Of Alia.Pranke@... Sent: Tuesday, March 28, 2006 3:02 PM Cc: jean.dillon@...; kimsumm@... Subject: Caroline! Hey everyone!! I just thought I would give a little update on Miss Caroline. We went in for her second IVIG infusion yesterday. Even though she had such a bad reaction last month , we were prepared to give it another try. We premeditated her with Ibuprofen before we left in hopes of helping with the bad headaches, etc. However, Dr. Akin had alternate plans for us. Dr. Akin and our senior rheumatologist Dr. Vehe (Allie and Nick's doc) have come up with another plan. They have weekly meetings to discuss cases and for some reason (surprise surprise), Caroline is always on the list! They feel that the IVIG is no longer for her. She is pretty confident that she will continue to have the same reactions each month and it's clearly just not worth it. So, we discussed at length what to do and we decided her best path was REMICADE!! We of course had just given her Enbrel on Sunday so she could only get a 1/2 dosage of Remicade yesterday. We are going to be doing a pretty aggressive Remicade treatment with infusions every four weeks. We discussed some of her other medicines and if all goes well with her eye appointment in Boston, we will be hopefully be able to start tapering and eventually get rid of the Oral Prednisone, the Cyclosporine, and start to taper her Pred Forte eye drops. We also found out that she is anemic now, so Dr. Akin started her on daily Folic Acid. It doesn't come in liquid form, but the pill is very tiny (as many of you know), so we decided to let her try it. We put it on her tongue and had her drink through a straw (Thanks for the tip Helen!!) and it worked!! We did a huge celebration and she was so proud of herself. It was very cute! We also learned that she can't be on any Sulfa medicines with MTX. She is on Sulfatrim right now because of her VUR, so Dr. Akin called her urologist to let him know she needs to be on a different prophylaxis treatment. Right now we are restarting the Amoxicillin so she at least has something in her until we can get the new script. It was a day full of information, but for now we are set for her eye appointment next week and then we go back to Dr. Akin on the 24th.. Alia and Caroline, age 4, poly and iritis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2006 Report Share Posted March 28, 2006 Alia, Do you know why you cannot be on any Sulfa medications while taking MTX? I am very curious on this one, because I have had bad reactions to both and possibly because i was taking them at the same time????? (poly 35) Caroline! Hey everyone!! I just thought I would give a little update on Miss Caroline. We went in for her second IVIG infusion yesterday. Even though she had such a bad reaction last month , we were prepared to give it another try. We premeditated her with Ibuprofen before we left in hopes of helping with the bad headaches, etc. However, Dr. Akin had alternate plans for us. Dr. Akin and our senior rheumatologist Dr. Vehe (Allie and Nick's doc) have come up with another plan. They have weekly meetings to discuss cases and for some reason (surprise surprise), Caroline is always on the list! They feel that the IVIG is no longer for her. She is pretty confident that she will continue to have the same reactions each month and it's clearly just not worth it. So, we discussed at length what to do and we decided her best path was REMICADE!! We of course had just given her Enbrel on Sunday so she could only get a 1/2 dosage of Remicade yesterday. We are going to be doing a pretty aggressive Remicade treatment with infusions every four weeks. We discussed some of her other medicines and if all goes well with her eye appointment in Boston, we will be hopefully be able to start tapering and eventually get rid of the Oral Prednisone, the Cyclosporine, and start to taper her Pred Forte eye drops. We also found out that she is anemic now, so Dr. Akin started her on daily Folic Acid. It doesn't come in liquid form, but the pill is very tiny (as many of you know), so we decided to let her try it. We put it on her tongue and had her drink through a straw (Thanks for the tip Helen!!) and it worked!! We did a huge celebration and she was so proud of herself. It was very cute! We also learned that she can't be on any Sulfa medicines with MTX. She is on Sulfatrim right now because of her VUR, so Dr. Akin called her urologist to let him know she needs to be on a different prophylaxis treatment. Right now we are restarting the Amoxicillin so she at least has something in her until we can get the new script. It was a day full of information, but for now we are set for her eye appointment next week and then we go back to Dr. Akin on the 24th.. Alia and Caroline, age 4, poly and iritis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2006 Report Share Posted March 29, 2006 Hi . According to her rheumy the Sulfa interferes with the MTX and it essentially makes it ineffective. She gave us a more technical explanation but she lost me... She said something about how they both follow the same path in the body and the two fight each other. It also increases anemia. Hope that helps! Alia and Caroline, age 4, poly and iritis ________________________________ From: on behalf of Sent: Tue 3/28/2006 10:05 PM Subject: RE: Caroline! Alia, Do you know why you cannot be on any Sulfa medications while taking MTX? I am very curious on this one, because I have had bad reactions to both and possibly because i was taking them at the same time????? (poly 35) Caroline! Hey everyone!! I just thought I would give a little update on Miss Caroline. We went in for her second IVIG infusion yesterday. Even though she had such a bad reaction last month , we were prepared to give it another try. We premeditated her with Ibuprofen before we left in hopes of helping with the bad headaches, etc. However, Dr. Akin had alternate plans for us. Dr. Akin and our senior rheumatologist Dr. Vehe (Allie and Nick's doc) have come up with another plan. They have weekly meetings to discuss cases and for some reason (surprise surprise), Caroline is always on the list! They feel that the IVIG is no longer for her. She is pretty confident that she will continue to have the same reactions each month and it's clearly just not worth it. So, we discussed at length what to do and we decided her best path was REMICADE!! We of course had just given her Enbrel on Sunday so she could only get a 1/2 dosage of Remicade yesterday. We are going to be doing a pretty aggressive Remicade treatment with infusions every four weeks. We discussed some of her other medicines and if all goes well with her eye appointment in Boston, we will be hopefully be able to start tapering and eventually get rid of the Oral Prednisone, the Cyclosporine, and start to taper her Pred Forte eye drops. We also found out that she is anemic now, so Dr. Akin started her on daily Folic Acid. It doesn't come in liquid form, but the pill is very tiny (as many of you know), so we decided to let her try it. We put it on her tongue and had her drink through a straw (Thanks for the tip Helen!!) and it worked!! We did a huge celebration and she was so proud of herself. It was very cute! We also learned that she can't be on any Sulfa medicines with MTX. She is on Sulfatrim right now because of her VUR, so Dr. Akin called her urologist to let him know she needs to be on a different prophylaxis treatment. Right now we are restarting the Amoxicillin so she at least has something in her until we can get the new script. It was a day full of information, but for now we are set for her eye appointment next week and then we go back to Dr. Akin on the 24th.. Alia and Caroline, age 4, poly and iritis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 Alia and Alan, I am so glad to hear of your news! I think that is great. I hope you all get some relief very soon. Allie had her Humira increased dut to the protocal of the study, and seems to be doing VERY well. WE got back last night from Florida, and that really seemed to help. Warm air, and lots of swimming. She doesn't have her cold either! Yea! I will be excited to see you guys and hear of your results from Boston. Have a great week! > > > > Hey everyone!! I just thought I would give a little update on Miss > > Caroline. We went in for her second IVIG infusion yesterday. Even > though > > she had such a bad reaction last month , we were prepared to give it > > another try. We premeditated her with Ibuprofen before we left in > hopes > > of helping with the bad headaches, etc. However, Dr. Akin had > alternate > > plans for us. > > > > Dr. Akin and our senior rheumatologist Dr. Vehe (Allie and Nick's > doc) > > have come up with another plan. They have weekly meetings to discuss > > cases and for some reason (surprise surprise), Caroline is always > on the > > list! They feel that the IVIG is no longer for her. She is pretty > > confident that she will continue to have the same reactions each > month > > and it's clearly just not worth it. So, we discussed at length what > to > > do and we decided her best path was REMICADE!! We of course had just > > given her Enbrel on Sunday so she could only get a 1/2 dosage of > > Remicade yesterday. We are going to be doing a pretty aggressive > > Remicade treatment with infusions every four weeks. > > > > We discussed some of her other medicines and if all goes well with > her > > eye appointment in Boston, we will be hopefully be able to start > > tapering and eventually get rid of the Oral Prednisone, the > > Cyclosporine, and start to taper her Pred Forte eye drops. We also > found > > out that she is anemic now, so Dr. Akin started her on daily Folic > Acid. > > It doesn't come in liquid form, but the pill is very tiny (as many > of > > you know), so we decided to let her try it. We put it on her tongue > and > > had her drink through a straw (Thanks for the tip Helen!!) and it > > worked!! We did a huge celebration and she was so proud of herself. > It > > was very cute! > > > > We also learned that she can't be on any Sulfa medicines with MTX. > She > > is on Sulfatrim right now because of her VUR, so Dr. Akin called her > > urologist to let him know she needs to be on a different prophylaxis > > treatment. Right now we are restarting the Amoxicillin so she at > least > > has something in her until we can get the new script. > > > > It was a day full of information, but for now we are set for her eye > > appointment next week and then we go back to Dr. Akin on the 24th.. > > > > Alia and Caroline, age 4, poly and iritis > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 Thanks ! I am glad to hear that Allie is still doing great!! Can't wait to see you soon! Alia and Caroline, age 4, poly and iritis ________________________________ From: [mailto: ] On Behalf Of lesliekray Sent: Sunday, April 02, 2006 12:07 PM Subject: Re: Caroline! Alia and Alan, I am so glad to hear of your news! I think that is great. I hope you all get some relief very soon. Allie had her Humira increased dut to the protocal of the study, and seems to be doing VERY well. WE got back last night from Florida, and that really seemed to help. Warm air, and lots of swimming. She doesn't have her cold either! Yea! I will be excited to see you guys and hear of your results from Boston. Have a great week! > > > > Hey everyone!! I just thought I would give a little update on Miss > > Caroline. We went in for her second IVIG infusion yesterday. Even > though > > she had such a bad reaction last month , we were prepared to give it > > another try. We premeditated her with Ibuprofen before we left in > hopes > > of helping with the bad headaches, etc. However, Dr. Akin had > alternate > > plans for us. > > > > Dr. Akin and our senior rheumatologist Dr. Vehe (Allie and Nick's > doc) > > have come up with another plan. They have weekly meetings to discuss > > cases and for some reason (surprise surprise), Caroline is always > on the > > list! They feel that the IVIG is no longer for her. She is pretty > > confident that she will continue to have the same reactions each > month > > and it's clearly just not worth it. So, we discussed at length what > to > > do and we decided her best path was REMICADE!! We of course had just > > given her Enbrel on Sunday so she could only get a 1/2 dosage of > > Remicade yesterday. We are going to be doing a pretty aggressive > > Remicade treatment with infusions every four weeks. > > > > We discussed some of her other medicines and if all goes well with > her > > eye appointment in Boston, we will be hopefully be able to start > > tapering and eventually get rid of the Oral Prednisone, the > > Cyclosporine, and start to taper her Pred Forte eye drops. We also > found > > out that she is anemic now, so Dr. Akin started her on daily Folic > Acid. > > It doesn't come in liquid form, but the pill is very tiny (as many > of > > you know), so we decided to let her try it. We put it on her tongue > and > > had her drink through a straw (Thanks for the tip Helen!!) and it > > worked!! We did a huge celebration and she was so proud of herself. > It > > was very cute! > > > > We also learned that she can't be on any Sulfa medicines with MTX. > She > > is on Sulfatrim right now because of her VUR, so Dr. Akin called her > > urologist to let him know she needs to be on a different prophylaxis > > treatment. Right now we are restarting the Amoxicillin so she at > least > > has something in her until we can get the new script. > > > > It was a day full of information, but for now we are set for her eye > > appointment next week and then we go back to Dr. Akin on the 24th.. > > > > Alia and Caroline, age 4, poly and iritis > > > > > > Quote Link to comment Share on other sites More sharing options...
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