I have had a few people get in touch with me after finding my post about my son Carson's Kawasaki Disease. I am here for you. I had no one to talk to. Please get in touch with me if you have a child going through this. I have met many others like us. You are NOT alone. I wanted to share my "Notes". They are not written well..as I jotted things down fast as they were happening...but this will describe how long it took to diagnose and what all we went through. I still wonder at times...and I think the doctors do as well.....
Took Carson To doctor Monday June 6th 2011 with fever. They did testing and said he was okay and sent him home. They called me on Wednesday June 8th and said he had strep throat and put him on amoxacillian. He was not getting any better and I took him back to doctor on Monday June 13. They changed his antibiotic and said to call again on Wednesday if he wasn't better. We went back in on June 15 and Dr.XXX sent him to the Hospital thinking it may be Kawasaki Disease.
Carson was in Hospital from June 15 to June 22 2011.
June 15 admitted to hospital and start tests. Tried to take blood had to call iv team. Long night.
Symptoms include fever, red eyes...not runny, and rash.
He had no red tounge, no red or swollen hands or feet, no cracked lips and mouth okay, really no swollen lymph nodes
June 16 had his first echo. Results okay. Still having high fevers. Drs still thinking it is a virus...still waiting to hear from more tests.
June 17 they are thinking it is NOT Kawasaki Disease and it is most likely viral. Still waiting on tests...may send him home.
Later in day...only one test left to see if he has adnolvirus. They think he is okay and plan on sending him home because his fevers are lower. I argue with doctors telling them that his fevers are not going down we are just giving him Tylenol every 4 hours and it is keeping them down....so they called off the Tylenol and his fever reached 104.1 They were shocked and decided to start all testing over again to compare to tests already taken.
They are just now getting Infectious Disease doctors involved in the morning.
Later June 17 test came back and only tested positive for rhinovirus the common cold. Started all tests again tonight.
June 18. Decided to treat for KD just in case ( way past 10 days of fever. ) They started the gamma gobulin treatment ( IVIG ) in his room at night when No doctors were there. He did not react well. After turning machine up twice after 30 minutes Carsons fever shot up to 104.9 fast. He turned white, blue lips and shaking all over. Begging me to help him. We turned off. They wanted to start again worrying about wasting the medicine and it was 3000 $. I was like NO!
June 19. Talked to ID doctors and they think he really still needs treatment. They had Dr. XXX (JRA) doctor come in to look at him and decided he did not have juvenile RA. They also had an eye doctor check out his eyes and said they were okay. They decided to move him to ICU to give him IVIG treatment to be more closely monitored.
June 20. Treatment went smoothly. First fever free day in over 2 1/2 weeks. Back in regular room.
June 21. Got sick twice last night and fever is back. Running fevers and doctors leaving him alone today to give him a break. Will do another echo tomorrow.
June 22. No fevers last night and feeling good this morning. Doing 2 nd echo today....all looked good and sent us home after being in hospital one week.
July 4 Carson has been doing better. Going camping for 2 nights right up the road. Hasn't had fevers. Appetite not totally normal and looking kinda pale at times...but seems good.
July 7 Went to see ID doctor....saw the nurse practitioner. She was surprised that Carsons hands and feet were not peeling. She ordered blood work to compare to old tests. They tried to get blood in both arms and couldn't. Will have to go to Kosair hospital just to get blood.
Went to cardiologist. He found a small aneurysm in his left coronary artery measuring 3.5 mm and put him on Plavix 3 ml a day along with the half 81 mg aspirin Carson has been on since he got out of hospital.
July 8 Mom Kept Carson having low grade fevers under 100.
July 11 went to hospital and got blood work. Effortless
July 13. XXX from ID called about bloodwork. Carson is anemic and she put him on iron supplement. I told her he had been having low grade fevers. She said call if it gets to 100.4 or higher they may look at doing gg treatment again (IVIG). Today fever was 100 went away with tylonol.
His platelet count looks good 447
CRP rate up inflammation in body way up for someone with KD at this point. They put him on a whole aspirin 81 mg.
They scheduled a MRI/MRA for Monday July 18 to look at all blood vessels in his body. They all got together to talk about Carson. Dr, XXX the RA dr...thinks it could be juvenile RA????
They are confused because Carsons case has been atypical from beginning. Not text book. No peeling, inflammation unusual. But has aneurysm. Doing more testing to be complete.
July 14. Dr. XXX on vacation. Talked to DR. XXX , cardiologist about refilling Plavix. Carson has not been sleeping well and saw you shouldn't take Plavix with aspirin. He said he is comfortable with this and will talk to DR XXX more about it July 22 at next echo.
Talked to XXX again. She assured me the gg and his fever shooting to 105 is not the cause of aneurysm or inflammation. They are also checking on takiasu arteritis inflammation of aorta and major branches. It also causes inflammation but is very rare. MRI checks soft tissue structures and bones. MRA checks blood vessels with contrast. Iron 1.2 ml. 3 times a day..no multivitamin with it. .,...she talked about his echoes in hospital being upper limit of prominent normal with no aneurisms.
Fever 100.2 around 8:00 gave Tylenol.
July 16 fever 100 gave Tylenol because we are going to bed. Very fussy all day
July 17. Woke up acting like he was hurting ....gave him his aspirin...seemed better later.
6:30 after nap fever 100.4 acts miserable...gave Tylenol. He wakes up and acts, like something hurts...acts like hands may be tingling or something??
July 18 Carson woke up again acting like his hand is bothering him?? Has MRI MRA today.
Carson could not eat 6 Hours before the test. We Arrived hospital at 1:30, checked in, and then a nurse came down and told us there was a problem with scheduling and could not do the tests at this location and they rescheduled him downtown on Wednesday. No one called us and now we have to starve our child again Wednesday and stress for two more days.
They did take blood and here His results.
SED rate normal 0-20 ....July 11...110 July 18...112
Shows he has some type of Inflamation somewhere
Hemoglobin (anemia) normal 10.5-13.5. July 11...8.3. July 18 8.4 (on 4th day of iron.
If it were 7 or below they may look at doing. Blood transfusion
She was glad these test were stable from last week.
Hemotocrit normal 30-42 July 11... 24.7. July 18...25.8
Platelet count normal 140-440 July 11...447. July 18 480
Elevated a little this time which is normal in KD
CRP in the hospital after gg was 34.5 July 11....70
July 18...pending
Fever99.4 at 5:30. Exhausted from the day and fussy gave tylenol and he went to sleep.
July 19 acted weird about his hand this morning. Slept good. Mom said he acted great all day and ate well. Took temperature around 4:00 and it was 100.2. Mom fed him a milk shake. We drove home and fever was gone at 6:30 no Tylenol.
ID nurse called today with CRP rate of 106.5. It was 70 last week so it went up. She said doctors may have to put him under general anesthesia to stop his breathing tomorrow during MRI / MRA if radiologist sees something to take picture of his heart.
July 20 had MRI MRA at Kosair downtown.
fever 100.7 gave Tylenol.
July 21. Saw Dr. XXX. He said the radiologist did not get to look at all of the pictures but that he did not have an aneurysm and the heart and major branches look good. Call him on tuesday to see about other results and to see about labs. He wants a blood test to look at white blood cells....Castle mans disease. He said not to give him iron anymore because high CRP will make it not work. He wants me to keep a log of his fevers. They ruled out juvenile rheumatoid arthritis and takiasu disease and said it probably never even was Kawasaki since there is no aneurysm. Continue on Plavix.
July 21. 100.7 - 6:30 pm After nap. He was so fussy uncontrollably and miserable I gave him Tylenol and a milkshake. No appetite otherwise.
Castelmans disease collection of b cells
July 22. Saw Dr XXX Cardioloigist. . He did echo and was surprised to see no aneurysm. He said his coronary arteries were prominent....a little larger than they should be at his age and weight. Will look at MRI and talk to DR XXX RA DR and get back with me. Next echo August 8 at 8:30
July 22
7:30 am 98.6. Right out of bed before meds
11:45 am 97.5 acting normal
3:10 pm 99.8 after nap...acts miserable finally gave Tylenol...soooo fussy.
played and finally got to bed around 10:00
July 23
12:00am woke up screaming....no fever...screamed for about 20 minutes and fell back asleep
2:00 am Woke up screaming again for 45 minutes. No fever....couldn't figure out what was wrong. Gave him Tylenol in case something hurt.
7:00 am woke up screaming saying toes over and over ???? Temperature
97.7. Gave him his aspirin and Plavix and he finally calmed down.
10:00 am 98.7 been in a good mood all morning.
12:46pm 98.8 after nap. Woke up in okay mood.
1:30 pm 100 starting to get miserable...
2:30 pm 100.5 no Tylenol. Laying on me and won't move.
3:00 pm 100.8
5:00 pm 100.5
6:00 pm finally gave him Tylenol so he would eat. He hasn't eaten all day. Perked right up after.
Dr. XXX Cardiologist called around 6:30 and said he looked at MRI and definitely saw no aneurysm and heart and blood vessels looked fine. Now we wait to talk to Dr. XXX RA DR on Tuesday.
July 24
1:30 am woke up with no fever crying...took about 45 minutes to get back to sleep
7:00 am woke up feeling okay this morning, ate raisin bran
8:30 am 99.0.
10:00 am 99.3
2:30 pm 98.6 after nap no fever!!
4.00 pm 99.5
Did not sleep well at all
July 25
Went back to work and he stayed at moms
6:30 am 98.5
1:00 pm 99.7 gave Tylenol so miserable
Not right all evening. Went to bed early...so tired from no sleep.
July 26
12:00 am 99.5 woke up screaming forever....gave Tylenol.
8:00 am 100.9
Dr. XXX RA DR called today and said all MRI/MRA results came back okay. We went to give blood again at hospital.
July 27
Talked to a bunch of doctors about maybe being mold. They all said it probably isn't. I went ahead and set an appointment for Tuesday for Carson to see an allergist.
Left Dr. XXX, pediatrician, a message saying I didn't know the next move. Everyone acts like it is now out of their hands and Carson is still having fevers.
Talked with ID a few times. She kept telling me it is no longer infectious in nature but that there is over all inflammation and his hemoglobin is down to 7.4. She tried to call Dr. XXX RA DR and found out he is out of town and then referred me to Dr. XXX. She said she only knew a little about Carson but thought I needed to immediately put him In hospital and have hematology look at him, get a bone marrow biopsy so they could treat him with a high dose of steroids...looking at Cancer. She freaked me out....no one had said anything about these things.
She called me back later and said she talked to Dr. XXX and he is still waiting on a blood test that tests cells....types of blood cells and cancer cells, so we would wait. In the meantime Dr. XXX...Pediatitian calls and says she talked to new RA DR and the on call doctors for cardiology and RA (none of whom have been working with Carsons case up to this point) and they all decided to admit him into the hospital tomorrow and run another dose of IVIG and have hematology look at him. :-(
July 28 admitted into Hospital around 1:00 pm
Talked to DR XXX RA Dr , and Dr. XXX ID DR . The plan is to take blood and do testing in the morning and do another dose of IVIG. He will get a different steroid, aspirin, ibuprophin before....and same brand as last time.
He will see hematology.
Dr. XXX blood test came back...all looked okay. No cancer cells found.
Got in room around. 6:30 fever 102...gave Tylenol
8:20 - 98.8
July 29
2:00 am 97.7 ?
5:00 am 100.1 gave Tylenol at 5:45
Iv team came in around 7:45 gave iv...took a lot of blood
CPR up even more.
Pretreating at 9:15 with hydrocortisone steroid, benedryl and Tylenol. Started IVIG at 10:00 and finished around 4:00. Something went wrong in line at the end and didn't get to finish but it was only around an ounce
8:55 am 97.4
5:00 no fevers since IVIG and has been sleeping. He is sweating a lot.
7:00 up running around in a good mood, ate well, no fever.
July 30
5:15 am 99.7
Slept all night until 5:00 went back to sleep and slept til 7:00
CRP before IVIG 152 after 121.5
Hemoglobin 7.5
8:30 am 99.6 (got aspirin)
9:00 am 100.6
10:55 am 97.9
Doctors came in and decided to wait to see what his fever does today. If he has fever he will stay and probably get 3 days of steroids. If no fever....he will probably go home.
12:00 pm 100.7 they have decided to do the steroid treatment.
3 days for 2 hours Solu-Medrol
Then will be on a low dose steroid prednazone when we go home. Hopefully all will be okay but if not he may have to get Remicaide for two years which blocks (something)
Will be on 4 aspirin 4 times a day
Get echo at beginning of week and see Dr. XXX RA DR Friday.
*Remicaide
Dont take if tuberculosis or histo test negative
July 31
No fever last night. Ate a pretty good breakfast.
Aspirin 9:00 am ,1:30 pm, 5:30 pm
Prevacid 9:00 am
Hemoglobin 7.7
CRP 75.9
Urine negative
9:00 am temp 97.5
Started pretreatment at 11:10
Started steroid at 12:07. Temp 97.0
Did fine no fevers.
August 1
No fevers. Very Hungary. Woke up early and fussy.
Got echo at 8:00 am by DR XXX. No aneurysms. Coronaries still prominent but not worrying.
Aspirin 8:10am
Prevacid 8:10 am
Started pretreatment around 8:20 am
Started steroid treatment at 9:30 am
CRP 27
Hemoglobin 7.5
Dr. XXX RA DR came in and said the plan now is to keep him on high dose aspirin, Prevacid, iron, chalky chidrens flinstone vitamin, and prednisone. See her on Friday and echo on Monday. No allergy tests for 6 months.
August 5
Carson has had no fevers this week and has been taking all of his medicines. He has been pretty fussy wanting things they way they should be. He has been very attached to mommy. Sleeping much better at night. Peeing a lot!!!
Took Carson to see Dr. XXX. If labs are okay and echo okay we go down to one tspn of steroid after breakfast and a half tspn after lunch starting next Monday. Went to hospital for labs. They had to stick him twice. :-(
August 8
Carson woke up very fussy
Went to see Dr. XXX Cardiologist....echo okay. Dropped aspirin dose to one a day
Levels from Friday
CRP 26
Hemoglobin 8.6
Liver and kidneys normal
Next appt. August 24 8:30 am
August 9
Carson cried all morning while I got ready. He just wants to be in my lap. Mom said he just wouldn't play today. She gave him Tylenol afraid something was hurting him. Acted okay in the evening.
August 10
Carson fussy again this morning. Nothing makes him calm down but to sit on the couch in my lap watching tv. Woke up acting like hands may be numb or something again. Wanted me to kiss both his hands.???
August 11
Woke up screaming crying again. Something is bothering him in the morning but I can't figure it out. Gave him his one Prevacid and one aspirin. Acting a little better.
August 25
Carson has woke up around 2:00 or 3:00 am all week fussy.
Got echo with Dr. XXX Cardiologist. Bad news.
Right coronary artery aneurysm 7 mm
Left coronary artery aneurysm 4.5 mm
back on Plavix
3ml
Went to Hospital for lab work - temp 100.9 first temp since last hospital visit.
CRP 108
hemoglobin 9.2
Sed rate 112
Dr. XXX RA DR called and Admitting back into hospital for 3 days of high steroid solu medrol treatment again. Will be on methatroxile once a week
Dr. XXX Cardioogist will also put him on lovanox twice a day a shot. (could take heprin from iv) He is calling other doctors out of town to see what else may be happening.
(if aneurysm was over 8 DR would put him on Coumadin.)
98.9 temp at admittance....had given him Tylenol at home earlier.
99 temp at 7:00 pm no temps all night
August 26
12:00 am got steroid iv with pretreatment (solu Medrol)
Dr. XXX Cardiologist came in this morning and said we would do another echo before we leave hospital.
Dr. XXX RA DR visited and said we would start him on Remicade instead of methetroxate. Will get tested for histo. This normally treats takiasu and they think this would be best for inflammation and heart vessels. She is talking with doctors in Cincinnati, Boston and other areas. He will be getting a CRP rate weekly.
ID doctor XXX talked with us.
Dr. XXX RA DR came back in and told us that
Dr. XXX Cardiologist talked to Dr. Jane Newberger out of Boston who agrees with the Remecade and said cyboxin ? could be an option down the road or a beta blocker? She suggested another dose of IVIG. They decided to drop down to one asparin a day because they are afraid of ulcers....and probably stopping Plavix. Will stay on lovonox 2 shots a day.
Started steroid at 5:35
Iv team came in to do labs.
CRP 89.1
Ptt 21.7 normal 23 to 24 clotting factors
PT 9.7
INR 0.9 normal
Hemoglobin 9.1
Histoplasma
Platlette 670. Normal 140-440
Started Remecade at 10:30pm 10 ml per hour
Different nurse came in not sure what to do, left, came back in and Turned up after 15 minutes to 20 ml all okay then at
11:05 regular nurse came in and said iv looks bruised and puffy. Has to get a new iv. Stopped iv.
Another nurse manager came in and said iv team would be right down. She assured us that it is just the iv that went bad and not the medicine that he is having a reaction to.
Got new iv in and started treatment back at 11:55 (40 ml for 15 mins)
August 27
....continuing Remecade treatment.
Turned up to 80 ml for 15 mins at 12:10 am
Turned up to 150 ml for 30 minutes at 12:25
Turned up to 250 ml per hour at 1:00 am for remainder of treatment.
Treatment over at 1:35 am. No more problems.
3rd day of no bowel movement....gave suppository At 8:30 am
Popped back out...drank 2 things of prune juice.
Meds at 8:30 am = 1 aspirin, Prevacid, iron, Plavix , flinstone
Dr. XXX cardiologist checked in on us....and dr. XXX RA DR visited. She said they would only do IVIG if needed. Keeping him on Plavix. One aspirin and 2 Prevacid a day.
Went to the bathroom finally. 10:30 am nurse checked and no blood.
Had big time diarrhea at 1:30 pm
Dr XXX From infectious disease visited with XXX.
XXX thought he heard a murmur earlier but dr XXX said he sounded normal.
Found out today through facebook that my friend knows and works with Jane Newberger in Boston. :-). Says we are talking with the right person!
Did EKG at 1:00 pm
127/82 blood pressure high??? ....no fever 4:27
Pretreatment at 4:30 with benedryl and Tylenol orally for steroid
Lovenox shot left thigh 4:30 pm
Blood pressure
12am 115/57 on 27th
8pm 92/57 26th
4pm 117/53 26th
8:am 141/88
Should be 70-115/40-70
128/83 at 4:55
124/87 at 4:55
Started steroid at 5:10 for 3 hrs
Nurse XXX talked to dr XXX RA DR about high blood pressure and she said go ahead with treatment. Nurse asked floor doctors to come and talk to us about EKG.
Dr XXX....intern said she thought EKG looked okay but wasn't a cardiologist. Very nice. Said high blood pressure probably not to worry about right now.
Blood pressure at 8:25 pm = 124/73 temp 97.2
August28
Lovenox shot at 4:00 am right leg
Blood pressure 122/82 8:15 am
Meds = pevacid, iron, Plavix, flinstone
ID doctor, XXX, came in and said they may get images of his kidneys since his blood pressure is up.
Dr XXX general peds came in and checked on him
Dr. XXX came in and said high blood pressure was probably just steroids but doing an ultrasound today on his aorta, blood vessels, kidneys....just to be sure. He is staying on Plavix at this time and discontinuing aspirin.
Cardiologist dr. XXX came in this morning and said EKG looks normal. It made the left side of his heart look enlarged but know it isn't because of echo. They will do echo in the morning.
They are going to do ultrasound in morning too...they don't do them on Sunday.
118/78 bp at 1:00 pm
123/66 at 3:50 pm
Nurse
116/77 bp at 8:00 pm gave oral steroid prednisolone and Prevacid.
August 29 nurse 7:00am -7:pm. :-))
4:30 am lovenox shot right leg
115/83 bp 7:50 am no fevers
Meds 8:00 am Plavix, Previcid, steroid, flinstone, iron
Echo 8:15 am
Right 5.5 to 6.5
Left 4 to 4.5
a little smaller
Planning to put Carson on cummadin
Will need to take blood 3 hours after lovenox and start regulating blood.
Blood work done at 10:30ish...one clotted...will get at 7:00
Dr. XXX RA DR visited at 12:00 pm
Short term
Check labs twice a day for clotting. Hopefully a finger stick
Thursday recheck CRP CBC and hemoglobin and all other labs and repeat echo
Friday possible go home unless worse echo or CRP....if this happens more high dose steroids (fever)
IVIG holding off
Histo and tb should come back by Friday...should get to go home.
Echo twice a week and labs once a week.
Remecade out patient once a month
Going home on coumadin, Plavix, iron, vitamin, steroid, Prevacid (add aspirin later)
Labs
CRP less than 5 right where it needs to be!
12:30 no fever
Bp 136/92 in arm 132/69 and in leg
3:30 got ultrasound done.
4:40 pm first dose of coumadin and Lovenox shot in left leg
5:55 pm bp 133/81 no fever 97.7
6:25 pm dr. XXX RA DR called and said ultrasound was clear so high blood pressure probably from steroids and will just keep an eye on it.
7:00 pm - 7:00 am nurse Yesi
7:35 pm Prevacid and steroid
7:50 pm bp 122/84
Lab work 7:55
Hemmeglobin 10.6
Potassium 4.2 normal
August 30
4:00 am lovenox right leg and finger stick to check blood
8:00 am meds Prevacid, iron, Plavix, steroid, flinstone
117/78 bp
INR should be between 2 and 3 on coumadin
1.3 this morning.
4:00 pm lovenox right leg and coumadin
Bp 125/76 4:30 pm
Nurse again
7:40 pm Prevacid and steroid
8:10 pm 128/88 bp
August 31
3:35 am Telemetry showed slow heart rate. They came down to do ekg. Nurse said all was okay.
126/85 bp at 3:45 no fever.
4:00 am iv team got labs and put in new iv
4:30 lovenox left leg
4:50 am manual blood pressure 95/70
106/62 manual bp at 8:30 am
111/65 non manual
Dr. XXX Cardiologist visited and said his EKG was just fine. INR still low so will adjust coumadin today. 1.6
Dr XXX RA DR came in CRP still below 5
Will be getting echoes on Monday's and Thursday's. Blood work on Mondays.
Labs on Mondays and just finger stick for INR on Thursdays.
647 platlette count should be 550
Will be taken off plavix and lovenox and go home on coumadin and adding aspirin back.
Meds 8:55 am Plavix, iron, Prevacid,vitamin, steroid
12:15 pm
Manual left arm 105/70
Manual right arm 110/65
5:50 pm
Manual left arm 101/75
Manual right arm 105/70
5:55pm lovenox right leg and coumadin
7:30 pm steroid and Prevacid
Manual bp left arm 110/60
Manual bp right arm 112/68
Sept 1
4:00 am lovenox right leg and finger stick
Echo with Dr. XXX at 8:10
right same
Left 3 to 3.5 mm
Meds 8:25 am iron, vitamin, Prevacid, steroid, aspirin
9:15 am bp 108/64
Dr. XXX Ra DR visited and said we will be discharged.
make sure if surgery is needed or anything that we tell them he needs
Stress dose steroids. His body will not react normally
otherwise.
Goes home on coumadin same time every evening 6 or 7 ish
Steroid tsp twice a day 7 and 7
Iron
Vitamin
Prevacid
Aspirin one a day
Echo twice a week
Labs once a week
INR lab twice a week
Scheduled for Remecade in 4 weeks
Goes home
Sept 2
Took Carson to get INR checked. 1.9
Dr. XXX adjusted the next few doses to 4 mg, 3 mg, 4 mg, 3 mg
4 mg
Sept 3
3mg
Sept 4
4mg
Sept 5
3mg
Carson had a playful weekend. No fevers or problems. Just a little cranky at times. ( steroids) Sleeping through the night...peeing a lot!
Sept 6
Echo with Dr. XXX
Right 7 mm
Left 3 to 3.5 mm
Labs at KCMC
CRP <5
platelet 430
Hemoglobin 12.5
Histo negative
Tb undetermined redo
INR 3.9
PT 50.4
None today the 6th
2 mg wed the 7th
3 mg thurs the 8th
Retest on Friday after echo
Great mood all day.
Sept 7
Dr. XXX RA DR called. All labs look good. Zinc a little off. Will recheck next time. Need to check ptinr with finger stick each time. We didn't from yesterday. Called and let dr. XXX know.
Sept 9
See dr XXX Cardiologist
BP 113/71 and 108/72
PT 37.6 and INR 2.9
2 mg fri 3 sat 3 sun
Sept 10
Carson has been fussy all morning.
Flu shots for Carson, Paul, and Dawn at All Children Pediatrics at 10:00
Sept 12
Echo no changes (38lbs)
PT 58.5 INR 4.5
None today and none tomorrow. 2 mg Wed.
CRP <5
hemoglobin 12.9
Platelet 348
Liver and kidney good
Sept 15 - 38.4 lbs
Echo no changes
PT 14
INR 1.1 Thursday 3 Friday 3 saturday 3 Sunday 3
Sept 19
INR 3 Monday 2 Tuesday 3 wednesday 2 thursday 3
PT 39.3
CRP <5
Platelet 231
Hemoglobin 13.4
Sept 20
No changes in echo
347 qubo
Sept 23
PT 41.1
INR 3.2
Friday 2 sat 2 sun 2 mon 3
Sept 27
Hospital for Remecade treatment 150 mg
PT 31.8
INR 3.5
CRP < 5
Platelet 355
Hemoglobin 14.
Tues 2 wed 2 thurs 2 fri 3 sat 2 sun 2 mon 2 tues check
Sept 29. Echo 8:15 am
The right side is a tad smaller. On the back side it measured around 5 !
Sept 30
Talked to dr. XXX RA DR...drop steroid down to 1 1/2 tsp a day and stop iron. Get labs in two weeks to see if we can drop steroid again. Oct 14
Oct 1-4 had hives
Oct 4
INR 3.3
PT 42.9
2 a day until lab work next Friday
CRP <5
Hemoglobin 13.3
Platelet 322
Oct 6.
Had 2 hives on right eye
Oct 7
Right eye almost swollen shut in morning.
Took to doctor....didn't know why and didn't seem worried. Dr. gave me a prescription just in case. Woke up all weekend with swollen eye. Finally gone Monday morning the 10th
Oct 14
PT 42.9
INR 3.3
CRP < 5
Hemoglobin 13.7
Platelet 317
Kidneys good
dropping steroid dose to 1 tsp a day and dropping Zantac down to 1 tsp a day
Change coumadin dose .... blood work again on a week
1 mg Mon Wed Fri
2 mg Sun Tues Thurs Sat
October 20
1.7 INR
22.4 PT
Thurs - Sun 2
Mon -1
Tues-2
Wed -2
October 21
Echo
Left side gone
Right side smaller on the back side measuring 4 to 4.5 still around 6 on the front side.
Asked if research department could contact me about a warfin study in children and use a little of Carsons blood. I said yes!
Oct 25
Remecade treatment 7:30 am
CRP <5
hemoglobin 13
Platelet 287
INR 1.4
PT 13.7
Tues 3
Wed 2
Thurs 3
Fri 2
Sat 2
Sun 2
Mon check again
Dr. XXX RA DR visited....all labs look great
Steroid dose schedule
Fri 3ml
2weeks 2ml
2weeks 1ml
2weeks 1/2ml
2weeks none
Oct 31
PT 21.1
INR 1.6
Mon-Wed 3
Thurs 2
Check Fri
Nov 2 echo....all about the same. Come back in two weeks nov 16 8:30
Nov 4
PT 21.1
INR 1.6
Nov 9
PT 26.6
INR 2.0
CRP <5
platelet 324
Sugar 101
Hemoglobin 13.4
Alicia - 629-5608
Nov 15
Carsons 2 year check up went well. He did not get his hepatitis shot and will need to get it next time.
Nov 21 Remecade treatment (next treatment Dec 19 11:30)
Did study for warfarin
PT 16
INR 1.6
Go to 4 ml a day
All labs good
Getting treatment. Doctor just came and said if all goes well, once off of steroids (Dec 23) he will have 4 to 6 more treatments since we are still seeing changes in his aneurysms. All of his blood work came back normal today.
Nov 30
Echo about the same...next appt Dec 21 at 8:30
PT 25.2
INR 1.9
5 mg Wed and Fr
4 mg Thurs,Sat, Sun, Mon, Tues
Check wed the 7th
Dec 6
PT 19.8
INR 1.5
Tues 5
Wed 5
Thurs. 5
Fri 4
Sat 4
Sun 5
Mon check
Dec 13
PT 23.8. 26th and 27th Denise will be there
INR 1.8
Tues-Mon 5 mg a day....check in a week
Dec 19 Remecade treatment 11:30 am
37 inches tall
40 lbs
PT 18.4
INR 1.9
CRP<5
Platelet 277
Hemoglobin 12.1
Mon 5
Tues 6
Wed 5
Thurs 6
Fri 5
Sat 6
Sun 5
Mon check
Echo Dec 21 no changes next one Jan 6 at 8:45
Next Remecade treatment Jan 16 at 2:00 pm
Dec 22
Dr XXX Cardiologist called and wanted to do an echo on Tuesday since Carson stops steroids tomorrow. And get PT INR today. He said he did see that the artery was narrowing some coming out of the heart. He lost sleep last nigh and needed a new plan.
PT 28.1
INR 2.2
Thurs 6
Fri 5
Sat 6
Sun 5
Mon 6
Check Tuesday before echo
Dec 23
Stopped steroids today.
Dec 27
PT 29.6
INR 2.3
5 mon we'd fri
6 other 4 days
Update: Today's Echo appointment was a little unsettling. I didn't know if I should be glad or sad. Last week the Dr. said he may have seen a blood clot in the right coronary artery coming out of his aorta. He said he had been having trouble seeing this area on the past few Echos. He could see it plainly again today and said it really looked more like a narrowing ( the artery repairing itself ). There was no change from last week to this week and wants to take a look at again next week. I choose to believe the the aneurysm is getting smaller and God is working his miracles. The left artery still looks normal and the right aneurysm is still measuring between 6 and 7 mm in the spots it has been. I still haven't gotten results from his blood work...hope to get that tomorrow.
January 4
PT 31.1
INR 2.4
Keep on same schedule.
January 5
Echo
No changes. Talked about doing a heart cath before he gets off of
Remecade.
January 10
PT 32.7
INR 2.5
January 16
Remecade Treatment 2:00
37.5 in tall
40 pounds
All went well...Dr. XXX visited and said treatments until April
CRP <5
platelet 294
PT 27
INR 2.9
January 19
Echo no changes come back in a month.
January 24
PT 37.6
INR 2.9
Tues. 5
Wed. 5
Thurs. 6
Fri. 5
Sat. 6
Sun. 5
Mon. 6
January 30
PT 29.6
INR 2.3
T 6
W 5
Th6
F 5
S 6
S 5
M 5
February 7
PT 29.6
INR 2.3
T 5
W 5
Th6
F 5
S 6
S 5
Fen 13
Remecade treatment
40 lbs
38.6 inches tall
CRP <5
hemoglobin 13.1
Platelet 257
M 5
T 5
W 5
Th 6
F 5
S 6
S 5
M 5
Feb 20
PT 32.7
INR 2.5
Same
Feb22 echo about the same...
Fen 28
PT 32.7
INR 2.5
Keep same. Get checked every 2 weeks now. March 12 next w Remecade treatment.
March 12
Remicade treatment
PT 31.3
INR 3.3 change to 5 mg a day check Tues.
CRP < 5
Hemoglobin 13.1
Platelets 247
Weight 40.13
Height 39
March 20h
Pt 26.6
INR 2.0
5 all week except Tues and Fri 6
April 9 7:30am
March 26 took to Kosair sick 7:00 am
Fever 100.6
INR 2.3
Pt 29.6
CRP <5
Did flu test and took X-rays
Sent him home with upper respiratory infection...take Tylenol and benedryl.
March 27
Too rectal temp at 6:30 am. 101.0k
5:00 99.7
March 29 6:00 pm 100.6
March 30
7:00 am 100.4
4:00 pm 101.8
Took to All Childrens Pediatrics....all okay...still nothing bacterial
April 2
Woke up 3 times in the night crying in the night...took a while to calm him down.
April 3
Pt 81.4
INR 6.3
CRP 15
Hemeglobbin 12.5
Platelets 271
Dr XXX had us recheck with finger stick.
Pt 76.5
INR 5.9
Still high so he wants me to hold off on meds for 2 days and recheck Thursday.
April 4
Carson slept great last night! :-)
Dr. XXX called and said Carson's CRP was 15 from yesterday. She isn't too concerned because of his cold. We will recheck again on Monday during Remecade treatment.M
April 5
Pt 15.1
INR 1.2
Thu 6
Fri 6
Sat 5
Sun 6
April 9 Remicade Treatment
40 lb 13 oz
39 in tall
Pt 33.3
INR 3.5
5 mon
5 tues
5 we'd
Recheck Thursday
April 12
PT 35.9
INR 2.8
April 18
Pt 32.7
INR 2.5
April 25
Pt 34.3
INR 2.6
Denise 446-7947
Heart cath May 7
Took Versaid by mouth pre treatment..took him back all went well. No big changes dr XXX Cardiologist said....may be a little narrowing on left side. Right side looks same as echo. Sending pictured to Dr Jane Newberger in Boston to check. Start cummadin again tonight.
Mon 6
Tues 5
Wed 5
Thurs 5
Fri check
Came to room after...got sick twice after drinking apple juice and then again after sprite. Okay after that. Ate fine. Went home at 10:20.
May 11
Pt 23.8
INR 1.8
Fri 6
Sat 6
Sun 5
Mon 5
Tues 5
May 16
Pt 25.2
INR 1.9
We'd 5
Thurs 6
Fri 5
Sat 6
Sun 5
May 21 Remecade treatment 7:30 am
Pt 29.4
INR 3.1
5 a day
May 29
Pt 32.7
Inr 2.5n
June 6
Pt 21.1
Inr 1.6
Wed 6
Thurs 6
Fri 5
Sat 5
Sun 6
Mon 5
Tues check or 5
June 13
Pt 23.8
INR 1.8
Wed - Tues 6 a day
June 19
PT 31.1
INR 2.4
Tues-Mon 6 a day
June 27
Pt 37.6
INR 2.9
July 2
Remecade treatment 7:30
Pt 29.6
INR 3.1
Mon 3
Tues Wed Thurs 6
Fri 5
Sat Sun Mon 6
July 10
Pt 32.7
INR 2.5
Tues and Fri 5
6 all other days
July 17
PT 34.3
INR 2.6
July 24
Pt 39.3
INR 3.0
Aug 1
Pt 31.1
INR 2.4
Aug 2 echo
Same
Aug 5
Pt 28.1
INR 2.2y
Aug 15
PT 31.1
INR 2.4
Aug 22
Pt 37.6
INR 2.9u
Aug 30
Last scheduled Remicaide treatment. All ok
Blood work normal
Sept 5
Pt 37.6
INR 2.9
Sept 12
Pt 35.9
INR 2.8
Sept 19
Pt 26.6
INR 2.0
Sept 26
Pt. 18.6
INR 1.4
Sept 28
PT 28.1
INR 2.2
Oct 4
We saw Carson's heart doctor and he did another Echo today. There are no changes in the aneurysm. He says it will probably never get smaller or larger at this point. What they look for now is narrowing in the blood vessels because of the damage from the Kawasaki Disease. He will have either a CT scan or heart cath done about once a year. He will have Echos in between. If narrowing does show up in the future he may have to have bypass surgery. For now he will stay on blood thinners to keep the blood from clotting in the aneurysm.
Make the next appointment in January for January or February.
Pt 31.1
INR 2.4
Oct 9
Pt 29.6
INR 2.3
Oct 16
Pt 31.1
INR 2.4
Oct 19
Carson saw Dr. XXX RA DR in her office. She said all looks good. We will get blood work done to check inflammation and immune system next week. Life should get back to normal.
Oct 23 also got blood work for dr. Schmidt
Pt 44.7
INR 3.4
All ok
Oct 29
Pt 44.7
INR 3.4
Mon, Wed, and Friday 5
Other days 6
Nov 11
Pt 29.6
INR 2.3
Nov 14
Pt 26.6
INR 2.0
Nov 21
Pt 48.5
INR 3.7
Nov 27
Pt 37.6
INR 2.9
5 every day except 6 on Friday and Sunday
Dec 5
Pt 32.7
INR 2.5
Dec 11
Pt 19.8
INR 1.5
6tues
6wed
6thurs
5fri
5sat
6sun
5mon
Dec 18
Pt 29.6
INR 2.3
Dec 26
Pt 32.7
INR 2.5y
Jan 3
Pt 35.9
INR 2.8
Jan 5
So Carson got Kawasaki disease (if that's what it really was) after his 18 month shots and after being on 2 antibiotics. He never had shots after that because of the Remecade treatments. We went to the dr. this morning and they swabbed him for whooping cough. We will have the results Tuesday but they said I could go ahead and start him on an antibiotic. Ugh...I say I will wait til Tuesday and give it to him if he has it. Wednesday he goes for his well check up and they will want to give him the shots he has missed. Since they don't know where Kawasaki comes from, all of this makes me a worried momma.
Jan 9
Pt 107.8 / 102.2
INR 8.3 / 7.9
None
Jan 10
Pt 71.8
INR 5.5
None
Jan 11
Pt 26.6
INR 2
5's
Jan 13
Pt 29
INR 2.0
5's
Jan 15
Pt 32.7
INR 2.5
Jan 19
Pt 44.7
INR 3.4
Sat 4
Sun 4
Mon 5
Tues 4
Wed -check
This is where I stop taking notes. Carson still goes to the hospital once a week to check blood levels. We still have Echos ever so often. His aneurysm hasn't changed. He has had CT Scans and Heart Caths to monitor. We are actually in the process of scheduling his next heart cath. Carson is now 4 years old...in preschool...and a happy little boy! We are thankful and pray for the best in the future. I am here to talk with you. I was alone and had no one to talk to that had gone through this. It is so rare. Please get in touch with me...
