Monday, July 16, 2012

Infectious Disease

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. 

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.

urgent care for fever still not going down
neutropenia (low white blood cells - can't fight anything off)
blood tests

urgent care follow-up
more antibiotics

blood test - abnormal liver function

office visit with ped - fussy behavior, still not acting right
ear infection - w/o fever
blood test - slightly abnormal - transaminitis (damage to liver)

follow up to see if Joey has finally recovered - he has
mentions Joey’s head circumference

fever and cough - pick up from daycare


urgent care - buckle fracture of foot

re-do blood test to see if still anemic - not

fever and barfing - pick up from daycare

fever - urgent care - ear infection - fever of 103

urgent care high fever 104.6 - pneumonia - ear infection
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?

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

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

4:49 pm - drooly and irritable give Ibuprofen 3.0 ml
2:25 am - irritable wanting to be held no fever

great day at daycare - temp was fine all day - eating normal and playing normal
slight decline in appetite. Normal temp.  Extremely whiney and irritable.

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. 

1 comment:

  1. geez, such a crazy list. i always feel like i've lost my mind when my kids go through a common cold, i can't imagine how you must feel. sending positive vibes joey's way! i hope you get answers soon.