Thursday
6:00 am: I wake Monkey up for school.
6:20 am: He still hasn’t come downstairs, so I go looking for him. He is standing in the bathroom looking confused. He says, “I think my head hurts.” I take his temperature; 102! Back to bed!
The rest of the day: He sleeps on and off and generally lolls around.
6:00 pm: Monkey puts himself to bed.
Friday
6:00 am: Monkey wakes up and announces he is all done sleeping and feels much better now! I take his temperature; 101! Not quite, bucko!
8:00 am: I call the pediatrician for an appointment.
8:15 am: I call the pediatric neurologist to remind them I’m waiting for CAT scan results.
9:45 am: We see the ped. She tests him for both strep and flu. Both are negative, but she says flu is going around and the test is unreliable. Probably flu. Keep him hydrated! Call if he can’t breathe! Fabulous.
The rest of the day: He sleeps on and off and generally lolls around.
5:00 pm: I shake my fist at the sky and rant about how much I hate the neurologist’s office.
7:25 pm: The neurologist’s nurse calls with Monkey’s test results. Something about fluid, and swelling, and thickening of mucosal membranes, and yet she seemed surprised when I asked her what it meant. “Well, probably a deep infection,” she says. I ask if that could explain his symptoms and behavior; she says it might. I ask if it could’ve caused a seizure; she says maybe. I ask how we find out, she says something about a lumbar puncture. I explain that Monkey has now had a fever for two days and she seems quite alarmed. I point out that it is now Friday night. “Page your doctor in the morning,” she says, “I’m faxing everything over right now. Take him to the ER if he gets worse.”
Friday night: I sleep with one eye open. (Not sure what I’m waiting for. Maybe for his head to explode?)
Saturday
8:15 am: I call the pediatrician’s answering service. They inform me that our doctor isn’t on call this weekend, but a random doctor is covering for her and his office will be open at 9. I briefly explain the situation. They tell me to call the other doctor at 9.
9:00 am: I call the other doctor. They tell me to bring Monkey right in.
9:45 am: We arrive at Typhoid Central. The place is CRAWLING with ailing toddlers who are coughing with abandon and licking all the furniture. Monkey and I wedge ourselves into a corner and take turns squirting each other with hand sanitizer.
11:15 am: Just as I give up on my will to live, we’re called back.
11:35 am: The doctor arrives. I explain the situation. He sends someone off to get the CAT scan results from the hospital.
11:45 am: The report is handed to the doctor. He looks it over and announces that he doesn’t understand it. He calls for a consult.
11:50 am: The doctor comments that Monkey doesn’t look sick. I raise an eyebrow at him and ask him what makes him say that. He points out that Monkey is not only sitting up, he has regaled the nurse a couple of times with cellular facts and a log of his temperature from the previous day. “Sick kids just lay there,” he concludes. I ask him as mildly as I can manage if he ever sees autistic kids, because if Monkey WASN’T sick, instead of sitting there he’d be dancing around and/or dismantling the office. He wisely decides not to argue with me.
11:55 am: We are packed off with a prescription for a 2-week course of Augmentin at a high enough dosage to kill all the germs in a 3-mile radius.
12:00 pm: Monkey announces, as I stop to buy him some hot chocolate for being so patient this morning, that he really feels all better now.
5:30 pm: As I type this, Monkey wanders into my office, lays down on my futon, and says his head still hurts.
[Edited to add: 6:15 pm: Monkey announces he’s all better. Again. Or still. I’ve lost track.]
You know how knowledge is power? In our house, continued confusion is justification for more ice cream. Not as pithy, but more delicious.
P.S. Follow-ups with all involved doctors on Monday. Maybe. If they feel like it. Or not! Who knows?
1. Now my head hurts.
2. Ice cream cures everything.
3. Is Monkey still running a fever?
4. Why are pediatric neurologists not on call on the weekend?
5. ((hug))
Ok, I’m arrgggghhhhing for you. I’ve had doctors like that who announce that my child doesn’t look sick. Um, you’ve never seen them WELL. How can you tell?
I did have one wonderful doctor who would ask ME – is this normal behavior, is this quieter or louder than usual? What is different?
But of course, being Navy, we moved away from that one.
My task for monday is to get us set up with our new docs.
May Monkey heal quickly. Prayers and Hugs.
And have you tried Publix White Christmas ice cream? OR Edy’s peppermint? YUM.
And I also meant to say, if you don’t see some serious improvement on the anitbiotics, I’d call.
My step-father once picked up a doctor and hung him by his lab coat on the coat hook and walked out. I think of this often when dealing with the crazypants that is healthcare.
We don’t have neurologists involved, but my 3-year-old has been sick since Tuesday and all the doctors say is “More fluids! Make sure he’s peeing!” Meanwhile he’s miserable and I’m miserable and he’s had a fever for five days.
Also, @Visionsister: That’s the best thing I’ve ever read.
Ugh. What a nightmare.
And I especially gulped when I saw the prescription for Augmentin. I have TWO little ones currently on Augmentin, and it is BATTLE to get them to take it every time. Not sure why they can’t make it taste like bubble gum or grape, or SOMETHING that doesn’t make them want to spit it out….
Hope Monkey is a more cooperative medicine taker!
Wishing your household health….
Mir, I have read your blog for years, but I think this is the first time I have commented. I, like most others, am growing increasingly worried about Monkey. Has Monkey been tested for PANDAS? It is a complicated disorder that begins with a strep infection, and then progresses to all types of physical and neurological symptoms. It would explain the seizure, the possible ‘deep infection’, the behavior/mood changes, and quite possibly, this recent fever. Kids with PANDAS can exhibit autistic behaviors, motor/speech tics, obsessions, mild paranoia, and a sense of ‘this is not my kid’. Also, given what is going on, and how much he has changed lately, if he goes above 102, take him directly to the ER. Stop waiting for neuro to call you; they don’t call people unless they have giant tumors that have to be removed immediately. Call them every hour, on the hour, until you reach a full staff physician.
I am a pediatric nurse practitioner, in an inpatient child psychiatry unit.
Oh Mir, I’m scared and frustrated just reading your account. AAAAAAaaaaaaaaaa. I hope this works out well, and soon.
I think Neurologist is Latin for “Unreachable”.
Mine has decided that despite the fact that I have had to have 4 tumors removed in the past 5 years, that I need only see him once every five years. I think I need a new neurologist.
I hope it gets better for you guys!
Oy.
I don’t even know what to say. But perserverance…… and that there, right there … sucks!
Uffda… hugs from ND.
What Zara said.
Crap. I am so sorry. Please hang in there. Sending love.
Hoping for answers, better health, better everything. Take care.
I will be saying prayers and hoping for the best. Brave little Monkey, hang in there.
ARGH! It sounds as frustrating as our last few hospital visits.
What Zara said.
That there sounds like an exhausting and sucky 48 hours, although I’m glad to hear that no one wanted follow up on that lumbar puncture idea. I’ll be keeping my fingers crossed for you guys that the Augmentin helps him.
Do you need us all to come and storm the office for you? I hear Georgia is lovely this time of year.
Seriously, thinking of you and hoping/praying for good news.
I hate that stuff. They somehow manage to imply that A) Mommy’s overreacting or B) Mommy’s incompetent and stupid for not bringing the kid in sooner, often, magically, both at the same time! Either way it’s Mommy’s fault.
Hang in there.
Ugh. Sorry you’re going through that crap! I hate going to the doctor’s office…. they have actually taken all the toys out of the office because they finally realized that kids were all licking them and sharing germs.
Sounds a lot like my 6 year old. It took her a full 2 days to finally admit that her broken collar bone actually did hurt. Have mercy. Hope Monkey feels better!
@Visionsister: your dad rocks. Best wishes for a speedy recovery for Monkey, and an answer to the mysteries and nightmares that are plaguing you all.
I feel for you and Monkey. I wish I had answers for you. Sending love and light and good vibes and prayers all your way! Hoping for the best outcome for all involved.
Hang in there and don’t forget ice cream is the cure for whatever ails you!
That’s good, though! Right? I mean, confusing. But hopeful that this is all just a sinus infection!
love love love.
Ouch! Your poor things, all of you.
Hang in there, and DON’T take no from any rotten doctors who’ve never met Monkey before.
(((((Hugs)))))
Listen to Zara (#7). It’s what I would tell any of my personal friends to do. I hope you get answers soon & that there is an easy fix for you all. And that Santa brings you all piece of mind & good health this year.
Good Grief…that’s like a log of the first five years of my life after my daughter came home from the NICU. I shudder at the memories, and the pig-headedness of some of the doctors we mothers are forced to deal with. Hugs to you both. (from a safe distance)
oooooooh, boy. Well… I do know deep sinus infections can reek havoc. SO, if that’s the case, the antibiotic should get rid of the crud.
As you already know, you have to be your own advocate in the world of medicine. Hoping you are all feeling better this morning and life will return to normal soon.
OMG, he doesn’t look sick? I worked in an ER and we once had a woman come in who complained of a headache she’d had for a few days – it was nothing major, she said, but she was getting a bit of an upset stomach with it and it was starting to annoy her. She was lucid and talking and even laughing with me. 45 minutes later I hear the helicopter landing and she was being wheeled out to it to head to Big Medical Center that’s over 1 1/2 hours away (by car). A blood clot in her brain. If the doctor would’ve gone by how she LOOKED, she would’ve died. Dumb idiots.
Hope Monkey feels better!!
UGH. So frustrating. And I LOVE what you said about wondering if the doctor sees autistic kids. Because my kids? YEAH. Broken bones? Bo problem! Back on the monkey bars! Gaping head wound all the way down to the skull? No problem! Let me jump on teh ER bed! Seriously, normal kids do just lay there. Our kids? Business as usual.
Poor monkey. Hope he is better soon.
I’m thinking you need to go with your gut about M. I’m usually at least mildly sympathetic to doctors who give feedback that if you’re kid was really sick (i.e. chest pain, head pain), he’d look it. But, M. had a seizure! that’s a big thing. And, you seem to be falling through one of the flaws in our med system, which is doctors of different types not talking to one another. The ped is seeing a OK looking kid com in. The neurologist hears from you that there was a seizure. No one sees the most serious symptoms.
And, another suggestion — if he does have another seizure, and you can react this way, whip out a phone/camera and record it (while taking care of M, of course). You need to figure out a way to get the doctors to see what you’re seeing.
Oh boy. Crossing fingers, etc.
What a rotten day. I’m SO SORRY.
Do you have a copy of the CT? either the report or the actual films? You have a right to them, and well… sometimes these things are read by experts in pediatric neuro-imaging, and sometimes they are read by “night-hawks” in New Zealand–radiologists there who read films over the internet (nothing wrong with the internet) but I don’t think their credentialing/motivation to avoid litigation is quite the same. I’d do a quick google of the radiologist’s credentials; maybe Zara could get you a courtesy second read from someone in her department if you aren’t satisfied.
Love, prayers, and hopes for peace on this day.
I love how that doctor thought that because he doesn’t “LOOK” sick – that he isn’t. Mental Midgets I tell you….praying for you!
That just sounds bad. All around. Can I send wine?
Hugs to your whole family.
How is “He doesn’t look sick” EVER HELPFUL?!
Ack! Doctors who don’t listen to their patients or patient’s mother have always been one of my pet peeves. This test result we are waiting for which would negate planned surgery – the orthopedic surgeon dismissed as not relevant! I had to practically beg for genetics input and I still think he ignored me … Thankfully genetics didn’t when I phoned them directly!
I’m praying the antibiotics clears everything up and that all is well with Monkey soon. Listen to your gut and push back against “those” doctors! I’m learning that Mama’s intuition is not to be messed with!
So praying for you right now! What a miserable weekend this must have been for you. I hope tomorrow brings some answers and some PEACE!
I was laughing about the Augmentin and the person who was saying it’s tough to get her little to take it. My mildly autistic son would only take liquid medicine that was PINK! He did not care what it tasted like … but if it was not pink, you can bet we were scrambling to drop in a little food coloring! Oh the things we have to do and remember!! ;) Happy tomorrow to you and Monkey!
Just stopping in to send some good wishes – hope you’re all cozily in bed and Monkey is feeling better. And that you get some definitively reassuring medical counsel asap.
A long while ago I had what doctors later told me was a seizure that happened for no real reason that anyone (those same doctors included) could fathom. It was a horrible, scary experience that I would never wish on anyone. I can only imagine what it must be like to have something like that happen to someone you love more than anything, and to get no clear answers when you really need them. Please know that I am wishing all good things in your direction and that you are a strong, amazing person for getting up and keeping going every G.D day, even when it’s more than anyone should ever have to deal with.
My youngest got mono last year about this time (she was 6, mind you). It took two weeks of trips to the doctor to finally diagnose it, and by the time they did she had turned a corner and was getting better.
I hope we make it through the holidays this year…
I’ve been worried about you and Monkey since I read this yesterday. Can’t stop thinking about it. Do you have any major university hospital near you? We happen to live in a university town and it was wonderful when my son was going through his original diagnosis. We had a whole team of physicians working with us. My doctor called me several times in the evening on her own just to check how he was doing. Excellent medical care is out there, and if you can’t find it where you live, I think it’s time to go looking elsewhere for it. I think Monkey needs a complete medical workup to find out exactly what is going on and how best to treat it.
How I love it when the doctor thinks they know your child better than you do, based on seeing them for a whole twenty seconds. I get that all the time about my Aspie girl. Please. You be the expert on medicine and I’ll be expert on my kid, okay?
I hope you get a phone call from the neurologist today, hopefully with some variety of good news.
Been there, done that (different details, same general story). Only I had a total and complete meltdown in the doctor’s office during the 15th visit for the SAME FUCKING THING that resulted in being handed a script for xanax with a cheery “and here’s a little something for Mom”.
I thought I would EXPLODE. I mean, a wave of utter rage rolled over my body and I considered things both illegal and immoral. Then I thought…ok this is not good, maybe I do need something. So I took the script and my kid and found another doctor. Who actually says things like “You are probably right….Moms know their kids best”.
Praying for you!
Wow. I got nothing. Hugs and love from Ohio.
Sending hugs to you all. I hope you get to the bottom of the mystery soon!
Good. Grief.
this makes me think of monkey’s mystery green goop from one nostril when he was little. maybe it’s all related?
(i just finished reading your archives, so that one is fresh in my mind.)
Sweet fancy Moses! Is it too much to ask for just ONE doctor to be what you need him/her to be?
I hope the ice cream helps.
Is it wrong for me to want to punch every doctor you have visited in righteous indignation for you? No? ok, can I have some of Monkey’s ice cream?
Mir, my heart and prayers are with you and Monkey. THis just stinks :(
Thinking of you and second or thirding what Zara said. Time for many pushy phone calls. Many.
I’m so sorry doctors over there suck as much as they do over here. {{{hugs}}} to you and Monkey.
Today is Monday and you haven’t exploded all over Twitter yet, so I have high hopes that the saga improves!
I might like to come kick some doctors in the pants. Just sayin’.