Somebody told me about this today-
http://www.nytimes.com/2009/10/04/magazine/04FOB-diagnosis-t.html?_r=1&scp=1&sq=kawasaki&st=cse
Monday, October 19, 2009
Thursday, October 15, 2009
Home, Home at last
Last night at 6pm, Jacob got released from the hospital. He is under no restrictions and can resume normal activity immediately as he feels up to it. If he wants to go to school for all or part of the day the rest of the week, that is fine.
Thanks to Bikur Cholim for generous meals, which included meatballs and spaghetti that Jake inhaled on the ride home. The kids were all excited to see each other when we got home. Remi kept calling his name until she saw a balloon which caught her interest. Everybody got a good night sleep and Allison just called me to say that her and Jacob just woke up (9:15am). Grammy got the other kids to school and we are looking forward to an uneventful weekend.
So hug your kids today a little tighter and appreciate all you have.
Thanks to Bikur Cholim for generous meals, which included meatballs and spaghetti that Jake inhaled on the ride home. The kids were all excited to see each other when we got home. Remi kept calling his name until she saw a balloon which caught her interest. Everybody got a good night sleep and Allison just called me to say that her and Jacob just woke up (9:15am). Grammy got the other kids to school and we are looking forward to an uneventful weekend.
So hug your kids today a little tighter and appreciate all you have.
Wednesday, October 14, 2009
Start Spreading the News...
we're (probably) leaving today...
Jacob is doing GREAT! He went to the opthomologist this morning and his eyes are completely clear with no inflammation! He has not had any more fever and his rash is almost completely gone. As long as he does not have any fever today he will be discharged at 7:00 tonight!
So - here is his crazy story in a nutshell:
On the first week of October 2007, Jacob (3) came down with a strange rash and high fever that resulted in him being diagnosed with ATYPICAL Kawasaki Disease. On October 8, 2007 he was given his first round of IVIG which helped but did not completely work and 2 days later he had a second dose which was successful. He had no heart problems as a result.
On the first week of October 2009, Jacob (5) had severe stomach pain and fever. His story unfolded very differently this time but in the end, doctors all agreed that it might be possible that he had Kawasaki Disease again and began the IVIG treatment on October 12. As they say, hindsight is 20/20 and now that they have seen how he responded to the IVIG they are positive that he has a recurrence of KD - this time not ATYPICAL. His symtoms fit the classic definition of KD difinitively this time. The hesitation was that it is extremely rare for a caucasion kid to have a recurrence which is prominent mostly in Japanese kids.
The doctors are blown away. This morning I ran into the pediatrician who saw us the day we were admitted and she said that she could not believe that this is what it was. She would never have known.
PS - all his rheumatology tests came back negative with the exception of one that is still out.
We are thrilled with this result as it is not something that Jake will have to live with for the rest of his life. He will be followed very closely by cardiology during the first year, but as long as his heart remains healthy, he will be able to resume his normal life and activity as early as tomorrow!
Thank you all!
Jacob is doing GREAT! He went to the opthomologist this morning and his eyes are completely clear with no inflammation! He has not had any more fever and his rash is almost completely gone. As long as he does not have any fever today he will be discharged at 7:00 tonight!
So - here is his crazy story in a nutshell:
On the first week of October 2007, Jacob (3) came down with a strange rash and high fever that resulted in him being diagnosed with ATYPICAL Kawasaki Disease. On October 8, 2007 he was given his first round of IVIG which helped but did not completely work and 2 days later he had a second dose which was successful. He had no heart problems as a result.
On the first week of October 2009, Jacob (5) had severe stomach pain and fever. His story unfolded very differently this time but in the end, doctors all agreed that it might be possible that he had Kawasaki Disease again and began the IVIG treatment on October 12. As they say, hindsight is 20/20 and now that they have seen how he responded to the IVIG they are positive that he has a recurrence of KD - this time not ATYPICAL. His symtoms fit the classic definition of KD difinitively this time. The hesitation was that it is extremely rare for a caucasion kid to have a recurrence which is prominent mostly in Japanese kids.
The doctors are blown away. This morning I ran into the pediatrician who saw us the day we were admitted and she said that she could not believe that this is what it was. She would never have known.
PS - all his rheumatology tests came back negative with the exception of one that is still out.
We are thrilled with this result as it is not something that Jake will have to live with for the rest of his life. He will be followed very closely by cardiology during the first year, but as long as his heart remains healthy, he will be able to resume his normal life and activity as early as tomorrow!
Thank you all!
Tuesday, October 13, 2009
Tuesday night
Today was a good day. Its been just over 24 hours since Jacob started the IVIG treatment. His last fever was at 6:30 pm last night. His rash has faded significantly. He had enough energy today to be very silly around the docs and play with a lot of new toys and games. This afternoon he spent over an hour with the child life specialist who brought in various medical items that he could play with (rolls of tape, band-aids, stethoscope, and a little doll to practice 'medicine' with). It was really good for him to get out some of his feelings about all that he has gone through and was very interesting to watch him first lash out at his "patient" and then treat him. By the end of it he had him so bandaged up he was unrecognizable.
Cardiology came today after reviewing the images from yesterday with a report of NO damage to his heart. They did say that after considering the labs and images and combined with how well he responded to the IVIG, they are officially diagnosing him with a re-occurrence of atypical Kawasaki Disease. It's very interesting to us and the doctors how Jacob's presentation of it happened. Now it seems pretty clear and his symptoms match Kawasaki the closest, but in the days leading up to yesterday, they were considering everything from appendicitis to Lyme Disease to salmonella to mono. Actually - Jacob just won the medical lottery - the chances of this actually being the outcome were minute.
We have to wait another twenty four hours for observation and then we'll see what the docs say. Tomorrow he will see the ophthalmologist and we will continue checking that his symptoms are improving and temperature remains normal. If so, they are talking about discharging him tomorrow evening. Needless to say, this is the absolute best news!
Thanks everyone for checking in and for your support.
Cardiology came today after reviewing the images from yesterday with a report of NO damage to his heart. They did say that after considering the labs and images and combined with how well he responded to the IVIG, they are officially diagnosing him with a re-occurrence of atypical Kawasaki Disease. It's very interesting to us and the doctors how Jacob's presentation of it happened. Now it seems pretty clear and his symptoms match Kawasaki the closest, but in the days leading up to yesterday, they were considering everything from appendicitis to Lyme Disease to salmonella to mono. Actually - Jacob just won the medical lottery - the chances of this actually being the outcome were minute.
We have to wait another twenty four hours for observation and then we'll see what the docs say. Tomorrow he will see the ophthalmologist and we will continue checking that his symptoms are improving and temperature remains normal. If so, they are talking about discharging him tomorrow evening. Needless to say, this is the absolute best news!
Thanks everyone for checking in and for your support.
A Brand New Day
Having now gone through this twice, I can now say with clarity that you wake up in the morning after a night of IVIG and truly feel like your prayers have been answered. For the first night since last Sunday (9 days ago), Jacob slept through the night comfortably for 9 hours. His fever is gone and he has not woken up once with complaints of pain or signs of suffering. And - he's still asleep.
Now we watch and wait. For the next 48 hours we will watch him closely to see if the symptoms decrease and if they do, and he has no fever, then we will be set free!
We look forward to meeting with cardiology today to get the results of the echocardiogram and see if there is any preliminary damage to his heart as a result of the inflamation.
Thank you to everyone for the incredible support we are getting from all of you - we feel the love from our community and also from across the miles.
And - thanks for all the books. Jacob is loving the new variety. (and so will Asher and Remi) If you were thinking of sending a book, hold off for now. Our days of being bed-bound might be behind us!
Now we watch and wait. For the next 48 hours we will watch him closely to see if the symptoms decrease and if they do, and he has no fever, then we will be set free!
We look forward to meeting with cardiology today to get the results of the echocardiogram and see if there is any preliminary damage to his heart as a result of the inflamation.
Thank you to everyone for the incredible support we are getting from all of you - we feel the love from our community and also from across the miles.
And - thanks for all the books. Jacob is loving the new variety. (and so will Asher and Remi) If you were thinking of sending a book, hold off for now. Our days of being bed-bound might be behind us!
Monday, October 12, 2009
10:00 update
It's been almost 5 hours on the IVIG and Jacob's temperature has gone down significantly and the rest of his vital signs have been in normal ranges. He seems to be tolerating the IVIG well. He has about 2 more hours left on this drip if he continues to tolerate it at this rate. All of your prayers and good thoughts are working! Good night to all.
Manic Monday
We have had quite a busy day around here:
Opthomology consult - confirmed that he has inflamation in his eyes
Cardiology consult - Echocardiogram was done this afternoon. It will be used as a baseline after we do the meds
Rheumatology consult - they have a lot of labs pending. they agree that
Epstein Barr (mono) - test came back negative
Rapid respiratory panel all came back negative (including flu)
All specialists and the pediatrician have agreed to treat him for Kawasaki Disease. For more information go to www.chop.edu/healthinfo/kawasaki-disease.html It is extremely uncommon for there to be a recurrence (0.1% in caucasians) and this case is again considered ATYPICAL in it's presentation. That said, even though the doctors are not positive about this diagnosis, they have all assured us that the benefits of doing the treatment far outweigh the risks. The main risk being permanent damage to his coronary artery (which he luckily did not get when he was 3). So - they do the treatment and then repeat the echocardiogram to see if any inflamation around his heart did any damage to the coronary artery.
The treatment is IVIG - a course of intravenus immunoglobulin. This is administered through an IV in his hand over the course of the next 10 hours. We just started it at 5:15 and expect that if all goes well, he will finish it during the night. We are watching him extremely carefully right now to make sure that he does not have an allergic reaction to it. The nurses are coming in every 15 minutes to take his vital signs and Evan and I are holding close to his bedside.
We are all waiting for further rheumatology test results to come back as they are looking carefully for other vascular issues and autoimmune problems. Some of these tests take a few days and others take up to 6 weeks to return results so regardless of what happens as a result of tonights treatment, we will still be following this for the next few months.
He has certainly been put through the ringer today with a lot of doctors, a lot of blood drawn, a lot of specialists, and the IV specialist working on his IV site. He continues to run those high fevers and is having trouble taking the aspirin that is part of the treatment (he is taking 6 baby aspirin 4 times a day).
Now that the treatment has started, Jacob fell asleep - partially because he was exhausted and has a high fever right now, and partially as a defense mechanism - a way to turn off all those doctors and nurses who are constantly messing with him (which he did last time around).
We will continue to update you throughout the night and appreciate all the love and prayers that everyone is sending our way.
Opthomology consult - confirmed that he has inflamation in his eyes
Cardiology consult - Echocardiogram was done this afternoon. It will be used as a baseline after we do the meds
Rheumatology consult - they have a lot of labs pending. they agree that
Epstein Barr (mono) - test came back negative
Rapid respiratory panel all came back negative (including flu)
All specialists and the pediatrician have agreed to treat him for Kawasaki Disease. For more information go to www.chop.edu/healthinfo/kawasaki-disease.html It is extremely uncommon for there to be a recurrence (0.1% in caucasians) and this case is again considered ATYPICAL in it's presentation. That said, even though the doctors are not positive about this diagnosis, they have all assured us that the benefits of doing the treatment far outweigh the risks. The main risk being permanent damage to his coronary artery (which he luckily did not get when he was 3). So - they do the treatment and then repeat the echocardiogram to see if any inflamation around his heart did any damage to the coronary artery.
The treatment is IVIG - a course of intravenus immunoglobulin. This is administered through an IV in his hand over the course of the next 10 hours. We just started it at 5:15 and expect that if all goes well, he will finish it during the night. We are watching him extremely carefully right now to make sure that he does not have an allergic reaction to it. The nurses are coming in every 15 minutes to take his vital signs and Evan and I are holding close to his bedside.
We are all waiting for further rheumatology test results to come back as they are looking carefully for other vascular issues and autoimmune problems. Some of these tests take a few days and others take up to 6 weeks to return results so regardless of what happens as a result of tonights treatment, we will still be following this for the next few months.
He has certainly been put through the ringer today with a lot of doctors, a lot of blood drawn, a lot of specialists, and the IV specialist working on his IV site. He continues to run those high fevers and is having trouble taking the aspirin that is part of the treatment (he is taking 6 baby aspirin 4 times a day).
Now that the treatment has started, Jacob fell asleep - partially because he was exhausted and has a high fever right now, and partially as a defense mechanism - a way to turn off all those doctors and nurses who are constantly messing with him (which he did last time around).
We will continue to update you throughout the night and appreciate all the love and prayers that everyone is sending our way.
Sunday, October 11, 2009
Update on Jacob (What has happened until Sun 10/11)
Hi everyone,
We're using this blog as a way of keeping everyone up to date without having to contact everyone directly. Here is what has being going on.
Last Sunday, Jacob started complaining about stomach pain. On Monday, he developed a high fever. During a visit to the doctor, they spotted a bull's eye that is an indicator of Lyme disease which they started treating him for with Amoxicillin. Things didn't get better on Tuesday and on Wednesday morning, we bypassed our local hospital and went straight to CHOP. This is where two years ago this week, Jake was treated for Kawasaki Disease.
Along with blood tests, a CT scan was taken to see his what was causing the pain in his stomach. What they found was an inflammation of his descending colon. There were many things that could be causing that which needed to be eliminated. Since then we have been visited by the GI, Infectious Disease, and rheumetology teams to identify the problem. His fever has been kept under control with Tylenol but at the end of the 4 hours it shoots back up. Yesterday he developed a rash was has taken many different forms and has traveled up and down his body. He also has swelling in his feet and hands, swollen glands in his neck, bloodshot eyes, and dry cracked lips.
They've been able to eliminate the food borne illnesses (e.coli, salomella, etc), pretty sure its not tick borne (Lyme and others), and most viruses (parvo, roto, mono, etc.). His organs all seem to be functioning properly.
A lot of these symptoms are the same as the ones he had when he was here 2 years ago for Kawasaki. At that time, he was diagnosed with ATYPICAL Kawasaki (KD) which mostly means that he did not present with all of the symptoms they would expect to see. At that time, the treatment worked. Now one of the things we are looking at is that this is a possible recurrence of KD or that the diagnosis last time was not completely correct. This is something that the rheumetology team is exploring along with other vascular diseases.
In addition to rheumotology, we are also going to consult with cardiology tonight. Tomorrow he will have an echocardiogram. A lot of the bloodwork that they did today and will finish taking tomorrow will take 3-4 days to get results.
It is likely that Jake will be here for much of the week as we continue to explore what is going on. So far, Jake has ups and downs attitude-wise which mostly corresponds with his fever cycle. While his vitals are taken regularly, he is not hooked up to monitors or in a critical care area. Since they have not come to a diagnosis, he has to stay in his room, so he is mostly lying around catching up on his TV and playing board games. We do feel that we are in the best place and have an amazing group of pediatric specialists at our disposal.
We're using this blog as a way of keeping everyone up to date without having to contact everyone directly. Here is what has being going on.
Last Sunday, Jacob started complaining about stomach pain. On Monday, he developed a high fever. During a visit to the doctor, they spotted a bull's eye that is an indicator of Lyme disease which they started treating him for with Amoxicillin. Things didn't get better on Tuesday and on Wednesday morning, we bypassed our local hospital and went straight to CHOP. This is where two years ago this week, Jake was treated for Kawasaki Disease.
Along with blood tests, a CT scan was taken to see his what was causing the pain in his stomach. What they found was an inflammation of his descending colon. There were many things that could be causing that which needed to be eliminated. Since then we have been visited by the GI, Infectious Disease, and rheumetology teams to identify the problem. His fever has been kept under control with Tylenol but at the end of the 4 hours it shoots back up. Yesterday he developed a rash was has taken many different forms and has traveled up and down his body. He also has swelling in his feet and hands, swollen glands in his neck, bloodshot eyes, and dry cracked lips.
They've been able to eliminate the food borne illnesses (e.coli, salomella, etc), pretty sure its not tick borne (Lyme and others), and most viruses (parvo, roto, mono, etc.). His organs all seem to be functioning properly.
A lot of these symptoms are the same as the ones he had when he was here 2 years ago for Kawasaki. At that time, he was diagnosed with ATYPICAL Kawasaki (KD) which mostly means that he did not present with all of the symptoms they would expect to see. At that time, the treatment worked. Now one of the things we are looking at is that this is a possible recurrence of KD or that the diagnosis last time was not completely correct. This is something that the rheumetology team is exploring along with other vascular diseases.
In addition to rheumotology, we are also going to consult with cardiology tonight. Tomorrow he will have an echocardiogram. A lot of the bloodwork that they did today and will finish taking tomorrow will take 3-4 days to get results.
It is likely that Jake will be here for much of the week as we continue to explore what is going on. So far, Jake has ups and downs attitude-wise which mostly corresponds with his fever cycle. While his vitals are taken regularly, he is not hooked up to monitors or in a critical care area. Since they have not come to a diagnosis, he has to stay in his room, so he is mostly lying around catching up on his TV and playing board games. We do feel that we are in the best place and have an amazing group of pediatric specialists at our disposal.
The rest of us...
Asher and Remi are doing well so far. They have been well taken care of by Marci, Aunt Sandy and Pop (my Dad). Pop flew back from Chicago on Thursday and came right to us. He took care of the kids all weekend while Evan and I shuttled back and forth to the hospital meeting with the different doctors. Pop went home tonight. Grammie (my mom) is going to come back from Chicago hopefully on Tuesday and will stay with us. Grandma (Evan's mom) is in Italy for 2 weeks so she does not yet know what is going on.
We so appreciated the meals that were sent in by the preschool teachers and my colleagues at Beth Sholom. We all ate very well this weekend (including Jacob).
Evan and I are tired but are holding up. We are focusing on keeping the kids schedule as normal as possible. I have been sleeping at the hospital while Evan is at home for the others.
Jacob is bored - he has been watching a lot of TV and playing lots of board games. Today was the first day he actually asked for some toys to play with and I was able to borrow some from the Child Life Department here (they are amazing). We have also been doing some art projects when he has the energy. Since he's not allowed out of the room, we spend a lot of time looking out the window - especially at the trains that go by.
A lot of you have asked what you can do for us. We appreciate new (they can be used) books as we are sick of the ones we keep reading over and over. Today I brought him 2 new books and he made me read both of them twice before bed.
We would like to set up some playdates for Asher and Remi for after school this week 3:30 - 5:00.
Does anyone have a laptop that we can borrow that I can use in the hospital? It would need to have internet access.
We know a lot of you have been asking about sending in meals. I think someone is going to organize some meals. I'll let you know when we get more info.
If you want to follow this blog we are going to try to update it whenever we know things. You should click the Follow This Blog button and you will be notified when we make an update.
Most of all - we need everyone to send good vibes for Jacob. For those of you who were asking, Jacob's Hebrew name is Meir ben Penina.
We appreciate all of your support and hope that we'll be writing with good news soon!
We so appreciated the meals that were sent in by the preschool teachers and my colleagues at Beth Sholom. We all ate very well this weekend (including Jacob).
Evan and I are tired but are holding up. We are focusing on keeping the kids schedule as normal as possible. I have been sleeping at the hospital while Evan is at home for the others.
Jacob is bored - he has been watching a lot of TV and playing lots of board games. Today was the first day he actually asked for some toys to play with and I was able to borrow some from the Child Life Department here (they are amazing). We have also been doing some art projects when he has the energy. Since he's not allowed out of the room, we spend a lot of time looking out the window - especially at the trains that go by.
A lot of you have asked what you can do for us. We appreciate new (they can be used) books as we are sick of the ones we keep reading over and over. Today I brought him 2 new books and he made me read both of them twice before bed.
We would like to set up some playdates for Asher and Remi for after school this week 3:30 - 5:00.
Does anyone have a laptop that we can borrow that I can use in the hospital? It would need to have internet access.
We know a lot of you have been asking about sending in meals. I think someone is going to organize some meals. I'll let you know when we get more info.
If you want to follow this blog we are going to try to update it whenever we know things. You should click the Follow This Blog button and you will be notified when we make an update.
Most of all - we need everyone to send good vibes for Jacob. For those of you who were asking, Jacob's Hebrew name is Meir ben Penina.
We appreciate all of your support and hope that we'll be writing with good news soon!
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