No attacks today.
New possible diagnosis: Systemic Mastocytosis.
A ray of hope?
Dr. Rao, an endocrinologist specialist, visited. He thinks this may be a reaction to Zestril the blood pressure medicine that Dad has been on for about 20 years.
He took Dad off the Zestril tonight. We'll just have to wait and see.
-Paige
Monday, April 9, 2007
4.6 Montefiore Friday
dad had half a bowl of cereal in the morning. Mom called Dad at 8.20. The doctor was in talked to Dad. At that moment Dad was fine. Once he hung up the phone he started getting sick. By 8.30am an attack started and at 9am Dad called Mom to come in.
Today was a bit of trail and error. Dr. Harris, his endocrinologist, had some ideas and asked if they could try them.
They tried: Nitroglycerin orally- Nothing
Zofran and Fentanyl Lollipop orally- Nothing
They took blood at this time.
Antihistamine/Allegra- Nothing
Zantac- Nothing
Then they decided to go back to the Zofran and Dilaudid.
45 minutes passed and no meds.
Dr. Jovin, the attending physician came in:
1 unit of Dilaudid by IV- Nothing
30 min later: Zofran by IV- Nothing
5mg of Dilaudid orally- Nothing
12.30:2 more units of Dilaudid- Finally he had relief!
In the evening a team of endocrinologist paid Dad a visit.
-Paige
Today was a bit of trail and error. Dr. Harris, his endocrinologist, had some ideas and asked if they could try them.
They tried: Nitroglycerin orally- Nothing
Zofran and Fentanyl Lollipop orally- Nothing
They took blood at this time.
Antihistamine/Allegra- Nothing
Zantac- Nothing
Then they decided to go back to the Zofran and Dilaudid.
45 minutes passed and no meds.
Dr. Jovin, the attending physician came in:
1 unit of Dilaudid by IV- Nothing
30 min later: Zofran by IV- Nothing
5mg of Dilaudid orally- Nothing
12.30:2 more units of Dilaudid- Finally he had relief!
In the evening a team of endocrinologist paid Dad a visit.
-Paige
4.5 Montefiore Thurday
No attacks this day!! :)
Dad had a full body scan, something called an Octreotide Scan to determine if he has Carcinoid tumors. They had him take a hormone radio isotope and then have a full body scan.
In the afternoon he was seen by an Endocrinologist, Dr. Harris.
For lunch Dad had a small amount of mushroom soup. He was able to have some candy: a few M&M's, Clark Bar, and some Twizzlers. And for dinner, a small amount of a pot roast sandwich, and some mashed potatoes.
-Paige
Dad had a full body scan, something called an Octreotide Scan to determine if he has Carcinoid tumors. They had him take a hormone radio isotope and then have a full body scan.
In the afternoon he was seen by an Endocrinologist, Dr. Harris.
For lunch Dad had a small amount of mushroom soup. He was able to have some candy: a few M&M's, Clark Bar, and some Twizzlers. And for dinner, a small amount of a pot roast sandwich, and some mashed potatoes.
-Paige
4.4 Montefiore Wednesday
Another bad day. An attack starting at 5am. They had tried the Zofran pill again and the Fentanyl Lollipop, but it didn't help. Dad asked for the two shots, but they were in his chart, so the nurses had to call the doctor and then the pharmacy to get it. Finally he was given the first round of Zofran and Dilaudid shots which took away the nausea. He called Mom at 7.30am while she was on her way to work and asked her to come into the hospital instead. At 8am Dad received another Dilaudid which took away the rest of the pain.
And then another one at 11am before he was to go down for the CT Enterography that didn't happen the day before.
At 11.45 the pain was at a 8 on a 1 to 10 point scale.
At noon the pain was at a 9.
12.10 they gave him the shots in the arm of Zofran and 2 units of Dilaudid.
That took away the pain and they sent him down for the CT.
This day the doctors had him on a liquids only diet: water, coffee, soup broth.
-Paige
And then another one at 11am before he was to go down for the CT Enterography that didn't happen the day before.
At 11.45 the pain was at a 8 on a 1 to 10 point scale.
At noon the pain was at a 9.
12.10 they gave him the shots in the arm of Zofran and 2 units of Dilaudid.
That took away the pain and they sent him down for the CT.
This day the doctors had him on a liquids only diet: water, coffee, soup broth.
-Paige
4.3 Montefiore Tuesday
Last night the Doctor said he doesn't want Dad to be eating anything. Maybe this is food related? Also he didn't want Dad to eat because he had a colonoscopy today. There was the expectation of red rash like blood vessels, which would show the Ischemia (I think). They say some inflammation and took multiple biopsies. Everything from those biopsies has come back normal.
They were also supposed to re-do the CT Enterography, but no one ever showed up to take him down.
Around 7.30pm Dad ate some mushroom flatbread from the hospital cafe.
Mom noticed that Dad's face was flushed at 8pm. At 8.10pm Dad complained of a headache in his right side of sinus.
-Paige
They were also supposed to re-do the CT Enterography, but no one ever showed up to take him down.
Around 7.30pm Dad ate some mushroom flatbread from the hospital cafe.
Mom noticed that Dad's face was flushed at 8pm. At 8.10pm Dad complained of a headache in his right side of sinus.
-Paige
The Symptoms
I realized that I haven't really explained what Dad is feeling when he is having one of these attacks. Usually it is sometime after he eats.
First he'll have a bowel movement, not diarrhea, but substantial I understand. Then a warm flushing starts in his back and progresses quickly up his body to his head. Quickly nausea and pain follow. Dad feels like he needs to throw up to get relief from it all. Often he'll make himself throw up. You know when you are sick and your head gets all woozy and loose. That happens too. The pain is the biggest thing from my understanding. And it's not just a little pain. My Aunt Peggy explained it best, it's like he's writhing in pain. There is nothing that he can do to find relief from it.
It seems that the shots of Dilaudid and Zofran work the best. He's been needing various doses of the Dilaudid to get relief. Sometimes one shot or one unit in his IV works. Sometimes he'll need up to 3 or more to have relief from the pain.
Just thought you all should know what it was that we were talking about with the attacks and pain and all.
-Paige
First he'll have a bowel movement, not diarrhea, but substantial I understand. Then a warm flushing starts in his back and progresses quickly up his body to his head. Quickly nausea and pain follow. Dad feels like he needs to throw up to get relief from it all. Often he'll make himself throw up. You know when you are sick and your head gets all woozy and loose. That happens too. The pain is the biggest thing from my understanding. And it's not just a little pain. My Aunt Peggy explained it best, it's like he's writhing in pain. There is nothing that he can do to find relief from it.
It seems that the shots of Dilaudid and Zofran work the best. He's been needing various doses of the Dilaudid to get relief. Sometimes one shot or one unit in his IV works. Sometimes he'll need up to 3 or more to have relief from the pain.
Just thought you all should know what it was that we were talking about with the attacks and pain and all.
-Paige
4.2 Info from Dr.Roberts visit
This is from an email that I sent to Mom on Tuesday.
Dr. Roberts came in yesterday and said that he believes that Dad has either a Carcinoid Tumor or Ischemia of the Bowel.
The 24 hour urine test should show if there is a carcinoid tumor. The Doctor said that if it is the carcinoid, the reason that Dad gets sick every time he eats (which usually isn't the case with carcinoid) is maybe the tumor is around or surrounded by muscle which squeezes the tumor when the muscle is working on Dad's food, which then causes the carcinoid to secrete hormones, and that causes Dad to get sick. The test results should be back in a few days since they had to send it somewhere to get tested. Now the tumors are slow growing and small. Dr. Roberts said that he has been involved in cases where they have diagnosed carcinoid tumors but hadn't been able to find them for a while, until they grew larger to see. He said that is pretty rare, but to be aware of it. It could be one tumor or a few they aren't sure. And since they are slow growing and small that would account for the carcinoid not being seen in the CT scans that Dad has had done.
Speaking of CT Scan, the one that he had done ion the 26th wasn't done to the specification that Dr. Roberts ordered. He seemed pretty angry about this, but didn't seem as though he wanted Dad to do it over again. They didn't do some of the cross sections that he had ordered.
They have been taking blood from an artery when Dad has these episodes and they've found an increase of lactic acid and white blood cells. Lactic acid is produced when a muscle isn't getting enough oxygen. That would lead them to go with the escarpic bowel, but it's not a very high amount of lactic acid. Escarpic bowel is when the blood vessels to a certain part of the bowel aren't supplying it correctly. An angoigram would give them a better idea if this is the cause of Dad's episodes. Dr. Roberts seemed to want to have done this from the beginning, but the team and radiology have been against it as an initial test because of the invasive nature of the test. Dr. Roberts said to Dad yesterday that he is pushing for them to do the angoigram even before they get the results from the urine test. But then another doctor came up a few hours later and said they aren't going to do it yet. If it is this escarpic bowel, that doesn't account for the flushing and sweating that Dad keeps having. The treatment for the escarpic bowel is to remove that section of bowel.
Dr. Roberts said that they aren't 100% sure that either one of these are what Dad is suffering from. And if he had to pick he would want it to be the escarpic bowel, and not the carcinoid tumor.
-Paige
Dr. Roberts came in yesterday and said that he believes that Dad has either a Carcinoid Tumor or Ischemia of the Bowel.
The 24 hour urine test should show if there is a carcinoid tumor. The Doctor said that if it is the carcinoid, the reason that Dad gets sick every time he eats (which usually isn't the case with carcinoid) is maybe the tumor is around or surrounded by muscle which squeezes the tumor when the muscle is working on Dad's food, which then causes the carcinoid to secrete hormones, and that causes Dad to get sick. The test results should be back in a few days since they had to send it somewhere to get tested. Now the tumors are slow growing and small. Dr. Roberts said that he has been involved in cases where they have diagnosed carcinoid tumors but hadn't been able to find them for a while, until they grew larger to see. He said that is pretty rare, but to be aware of it. It could be one tumor or a few they aren't sure. And since they are slow growing and small that would account for the carcinoid not being seen in the CT scans that Dad has had done.
Speaking of CT Scan, the one that he had done ion the 26th wasn't done to the specification that Dr. Roberts ordered. He seemed pretty angry about this, but didn't seem as though he wanted Dad to do it over again. They didn't do some of the cross sections that he had ordered.
They have been taking blood from an artery when Dad has these episodes and they've found an increase of lactic acid and white blood cells. Lactic acid is produced when a muscle isn't getting enough oxygen. That would lead them to go with the escarpic bowel, but it's not a very high amount of lactic acid. Escarpic bowel is when the blood vessels to a certain part of the bowel aren't supplying it correctly. An angoigram would give them a better idea if this is the cause of Dad's episodes. Dr. Roberts seemed to want to have done this from the beginning, but the team and radiology have been against it as an initial test because of the invasive nature of the test. Dr. Roberts said to Dad yesterday that he is pushing for them to do the angoigram even before they get the results from the urine test. But then another doctor came up a few hours later and said they aren't going to do it yet. If it is this escarpic bowel, that doesn't account for the flushing and sweating that Dad keeps having. The treatment for the escarpic bowel is to remove that section of bowel.
Dr. Roberts said that they aren't 100% sure that either one of these are what Dad is suffering from. And if he had to pick he would want it to be the escarpic bowel, and not the carcinoid tumor.
-Paige
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