Wednesday morning at 9:45 a.m. we will be meeting with Dr. Zachary Miller, an infectious disease specialist. Read
here. And
here.
We were asked to chart Joey's activities, symptoms, disposition, etc. I added in his complete ER history since November of last year as well as any fever or sickness that didn't end in an ER visit. Our concerns are also added in.
I was asked to do this. This is not me going way too far and being all crazy. They like detail!
Anyway, for those interested, here is what we have.
History:
11/29/11
temp of 103
(104.4 in ER) - febrile seizure
slight ear
infection
Joey is
then on every 4 hour routine of Tylenol - fever returns rapidly if we try to
miss his
dose.
12/3/11
urgent care
for fever still not going down
neutropenia (low white blood cells - can't fight anything off)
Anemia
ceftriaxone
blood tests
12/4/11
urgent care
follow-up
more
antibiotics
12/9/11
blood test
- abnormal liver function
1/24/12
office
visit with ped - fussy behavior, still not acting right
ear
infection - w/o fever
blood test
- slightly abnormal - transaminitis (damage to liver)
03/28/12
follow up
to see if Joey has finally recovered - he has
mentions
Joey’s head circumference
04/17/12
fever and
cough - pick up from daycare
04/23/12
conjunctivitis
05/24/12
urgent care
- buckle fracture of foot
06/02/12
re-do blood
test to see if still anemic - not
06/07/12
fever and
barfing - pick up from daycare
06/21/12
fever -
urgent care - ear infection - fever of 103
07/09/12
urgent care
high fever 104.6 - pneumonia - ear infection
07/11/12
urgent care
possible allergic reaction - throat swollen and red with white dots on top - diagnosed with possible hand, foot and
mouth - dr. said ears looked fine
Points of concern:
Fever that goes from 98 to 103 in a matter of minutes.
No sickness symptoms and then very rapidly becomes quite
ill.
He is becoming increasingly more clumsy.
Sometimes it looks like his legs just give
out.
Once the fever is here we have a hard time controlling it.
We feel like the doctors are looking for the easy thing to
get us out the door.
We doubt he has an
ear infection half the time and
seriously doubt he had pneumonia.
Every time we have him on antibiotics he is fine. Once off
antibiotics he is like a ticking time
bomb.
It usually is 1 week sick with antibiotics, 1
week recovery and getting back to
normal,
1 week normal, next week sick again.
He has always been in daycare so wouldn’t he have been sick
like this his whole life?
Instead of
just the past 6 or so months?
He drinks a lot of fluid - always seems thirsty.
What we need to know:
Does he have an immunodeficiency disorder?
Is he possibly allergic to something?
Is there possibly some infection inside of his body?
7/10
3 am - Tylenol 5 ml
6 am - ibuprofen 1.875 ml
10:20 - doctor apt
11:45 - get home, take temp because we skipped 9 o’clock Tylenol
dose - 98 degrees
12 - notice he is shivering (we are outside and it is 70
degrees) tells me he wants to lay down - very irritable and whiny - take temp
102.7
12:05 - 5 ml Tylenol - lethargic - twitching - ice pack on
back and cool rag on head
12:05 - 12:40 temp between 101 and 103
1:25 - wakes up from nap - 100
1:30 - antibiotic - won’t eat lunch
3:00 - ibuprofen 1.875 ml
4:30 - 98
5:15 - 99.1 - noticed cheeks were flushed so I took temp
6:00 - 101 - whiney - wanting to be held - panting and
trying to sleep - Tylenol 5 ml
8:00 - 98.8
9:00 - 99 - ibuprofen 1.875
7/11
12 am - Tylenol 5 ml
3 am - Ibuprofen 1.875 ml
6 am - Tylenol 5 ml
9:00 - Ibuprofen - 98 degrees
12:00 - energetic and eating - Tylenol 5 ml
5:30 - notice swelling of his throat - red with white dots
on roof of mouth - wont swallow and
has
pain when he does - still drinking but no eating, cries whenever he drinks.
9:30 - slight fever (100) doctor diagnoses potential hand,
foot and mouth - continue ibuprofen
7/12
4:49 pm - drooly and irritable give Ibuprofen 3.0 ml
2:25 am - irritable wanting to be held no fever
7/13
great day at daycare
- temp was fine all day - eating normal and playing normal
7/14
slight decline in appetite. Normal temp.
Extremely whiney and irritable.
7/15
sweaty all day but no temp. Extremely irritable. Noticed weird marks on arm, possibly bug
bites. Rash on lower back and on his penis and testicles, nothing really on
butt. Diarrhea. Extreme thirst but no real appetite.
Seems a bit excessive, I know. But this is our life.
We will keep you posted on what the doctor says on Wednesday. I imagine there will be a variety of tests done as well as a physical examination, so we might not know much immediately.
