Monday, June 8, 2015

Health Misadventures

It's been a strange week. Susie, our nanny, called me last Monday, stammering, to tell me that Calliope had "collapsed" at a friend's house. She was running down the hallway, barefoot on a hardwood floor, no toys to trip over or friend's tugging on her, when suddenly she fell. And hit her head. And was limp afterwards.

Even as I was reassuring Susie over the phone that it didn't sound like Calliope had sustained a concussion (no bump or bruise on her head where she said it hurt), I was freaking out inwardly. Later, I grilled Susie and Calliope for more details. Susie tried to recant, and say maybe Calliope had just tripped, but I couldn't forget the fear in Susie's voice earlier in the day. I texted our pediatrician, spoke to her by phone, and then scheduled a visit with her for the next day.

Her physical exam was normal, so the pediatrician pretty much dismissed it as some bizarre but isolated incident. And I was much reassured. Until the next day. When I got an email from Calliope's preschool teacher who reported witnessing exactly the same thing that day.

Now I was really worried. I called the pediatrician back and she put me on hold to consult with her colleagues. Then came back on the line to report that they all agreed that it sounded like seizures. Seizures?! Oh my god. I panicked, thinking about all my goals for Calliope and her future, and how they could all be dashed by this diagnosis (it's possible I was envisioning a worst case scenario).

As per the pediatrician's direction, I scheduled an appointment with a pediatric neurologist for the very next day. (My cousin, a former nurse, asked "who did you have to sleep with to get a next day appointment with a pediatric neurologist???" To which I answered, "I just said, 'my pediatrician thinks my daughter had two seizures and she wants my daughter to be seen urgently.' That seemed to do the trick.")

We lucked out at the appointment in that the EEG technician just happened to be in that afternoon, and none of his scheduled appointments had arrived yet. So Calliope got that done right away. The bad news is that she had developed a fever the night before and was utterly miserable to have little electrodes glued all over her scalp. During nap time.

I awkwardly curled myself around her on the exam table after she wailed, "I need a cuddle." We told stories about scary monsters eating ice cream and she relaxed enough to get decently useful results.

She did not like this. 

Next we met with the neurologist, who was lovely and soft spoken and kind. He explained that in the absence of a loss of consciousness or a post-ictal state (usually people are foggy after a seizure), he doubted seizures. But he couldn't be sure without further studies. So if Calliope has two more falls (or one with more typical seizure symptoms) in the next month, perhaps, he wants to do 24-48 hours of continuous monitoring by both EEG and video camera. Oh, and he strongly recommends that this be done on an inpatient basis for children as young as Calliope.

Of course I immediately start worrying about needing to leave Amelie (still exclusively breastfed) for this long. But I thank him and he gives me his cell phone number so I can call him if she has any more falls. We leave as she begins to truly fall apart and I end up carrying all thirty-one pounds (and forty inches -- she grew three inches and gained three pounds in the last nine month!) most of the way to and from the subway.

A brief moment of composure after the EEG. I knew she really didn't feel well when she
only ate half her ice cream.

Last night was ugly as her temperature climbed to 103.6 despite Tylenol and Motrin. She threw up twice but luckily she had refused everything but water and medication so it didn't smell at all. Silver linings, eh? Still, soaking sheets in a bucket in the bathtub (we New Yorkers don't have washers and dryers in our apartments) in the middle of the night isn't ideal. Poor kid collapsed into bed as soon as we returned home and was miserable while awake but mostly slept.

Back we went to the pediatrician today, since she was concerned about Calliope's high fever. Amelie came today, as she had a low grade fever for a little while last night. And the nanny came along to help. Luckily our nanny share family was out of town and didn't need Susie.

Calliope was diagnosed with a presumed viral infection, Amelie with a mild version of the same (and she gained just over a pound in three weeks, so no more concerns about that!). The rapid strep test was negative and "Dr. Rita" sent a bunch of blood work to rule out anything that might have caused the falls (electrolyte imbalances, anemia, and per my request, Lyme titers). Calliope fell apart again as we were leaving, but seemed a bit better this afternoon, as long as the Motrin was in full force.

So I'm waiting to hear back on the blood test results but am hoping the falls might be some weird viral prodrome -- basically, that her body reacted to the beginnings of an illness, before she even felt sick.

I'm very much hoping this is the end of the falls business. I think I would be even more scared if she fell like that in front of me. And I'm not quite ready to think about being away from Amelie overnight.

... The update: Her blood work was abnormal -- it showed increased white blood cells and increased immature white blood cells in particular. Suggesting the presence of a bacterial infection. By the time the pediatrician called with the results the next day Calliope's fever had climbed to 104, too, (plus we had had another rough night with crying, moaning, and an episode of vomiting) so the doctor decided to start her presumptively on antibiotics while we waited for the throat culture to come back. Yay. An action plan.

The next day, Calliope seemed much better. Except incredibly whiny. I was going out of my mind. It had been three days of being stuck at home with her, save trips to the doctor, and she was not, shall we say, easy to be around. And it looked like her fever was breaking, thanks to the antibiotics. So I bribed her with the promise of a chocolate chip muffin and permission to ride in the stroller all day if only she would cooperate with my plan of meeting our SMC friends at the zoo.

She was pretty quiet, but seemed content on her shady perch in the stroller. We arrived in time for the picnic at the zoo with our friends, then we all went to visit the baboons -- a nice seated place to rest. After that we went to the sprinkler park where Calliope chased me around a bit before curling up on a blanket next to me in the shade. All seemed good. Except she was falling asleep in the car on the way home, unheard of for her.

We got home and I checked her temperature and it was over 104! Yikes. I texted the doctor and she later called and suggested that I take Calliope to urgent care for a chest x-ray and urine culture. But at that point the Motrin had kicked in and she seemed pretty cheerful so we agreed to wait for this morning. I felt sure the fever would have broken by then.

But she had a fever again this morning in the early dawn hours. And then, getting dressed this morning, I discovered a rash all over body. Which explained why the antibiotics weren't working -- she has a virus. Presumably. But given that her white count was high last week, the pediatrician wanted to check her blood again. And also do a couple more tests.

Well, the first results came back normal. No more high white count. But while we were waiting for the rest, the fever came back. And she's not supposed to have a fever once the rash comes out. And I had pretty much reached the end of my rope with all these weird events plus being with my exceedingly whiny child plus newborn without a break for so long. And I texted the doctor but she took hours to get back to me. So I panicked. For no logical reason. I was just done.

I asked my SMC downstairs friend to come up when she got home. And she finally did. And just sitting down with another human being helped a lot. And then the pediatrician called. And said that now something else was a bit abnormal with the blood work. Suggesting Kawasaki Disease, which is rare but has serious cardiac implications. Calliope had almost none of the signs of Kawasaki, but it can sometimes present atypically, so that's why the doctor ran the tests.

So, if Calliope has fever again tonight or in the morning (unlikely), the pediatrician will talk to a cardiologist in the morning and, if they are concerned (unlikely), then Calliope might have to go for an ultrasound of her heart tomorrow. Ugh!

Still, I feel better. I got my workout in while I was waiting anxiously to talk to the pediatrician. And she seemed so reassuring that I decided to let her do the worrying and to stop thinking.

And the nanny will watch C in the morning (she can't go to playschool since she had fever today) and I will go to a coffee shop with my mercifully quiet newborn and my laptop and be almost alone for a few hours. I can't wait. Assuming there's no fever, of course.

Whew. I'm tired.

This was axillary so it was really 104.2/

Skinny leg with rash

Face rash. Looks a little like Fifth's Disease, but not quite. 

Hand rash. I'm a weirdo who takes pictures of rashes because my professor loved rashes.


  1. Oh my gosh. I'm so sorry to hear about all of this. It sounds so stressful and frightening for you. I really hope you get some answers soon (and some reassuring news) and that Calliope will start to feel a lot better! Hang in there.

  2. My stomach is in knots with worry, I can imagine how you're feeling. Poor kiddo & poor Momma! I hope you get good news today & Calliope is on the mend

  3. Oh my gosh, Abby, so worrisome. I've been through so many times like this - scary symptoms and unknown diagnosis and tests with inconclusive or negative results (F's high hemoglobin is still unexplained). The uncertainty can be terrifying. You sound so rational and level headed, must be your medical training. I hope she is on the mend. Keep us posted -thinking of you!

  4. Wow - very scary. I bet it helps some that you are a pediatric nurse so are familiar with medical stuff but still very nerve-wracking. I hope she is doing better.

  5. I'm sorry Calliope isn't feeling well and that you are going through this. I can't imagine how scary it is. I hope you have answers soon.

  6. Your poor daughter. I hope she feels better soon. I just hate it when my son is sick. He has a rare medical condition, so there is a lot of work that goes into getting him comfortable before getting better. I know all about running around to all the different doctors and worrying over what they will find.

    Candace Hudson @ MedCare Pediatric

  7. I have so much empathy for what you have gone through with those precious little ones. I suffer from seizures myself and I would have been so scared to put my daughter through all the tests that I am subjected to. What a tough little cookie! I have also had the fever rashes and I feel for her pain and discomfort. Always be cautious as a mom. Good job!

    Milagros Max @ U.S. HealthWorks Puyallup