Tuesday, April 20, 2010

The Ultimate Owie--Part II

Norah seemed to be getting better on Sunday but we had to take her back to the pediatrician for a follow up on Monday and I was still concerned that she wasn't quite herself, so I took the day off to be with her. Her pediatrician didn't have any available appointments, so we saw someone else in her practice. She walked in the room and bombarded me with all kinds of questions that immediately clued me into the fact that she suspected Norah might have measles (I have a medical degree from Dr. Google, lady. Don't mess with me). Anyway, she was not entirely convinced even after I recited the 75 reasons it couldn't possibly be measles (including but not limited to the fact that kids with measles run temps of 104+ and are sick, sick, sick), and so she brought in another pediatrician and a dermatologist to take a look. They both agreed with me that measles wasn't even a consideration--the dermatologist said it wasn't even a measles looking rash--but beyond that just kind of shrugged their shoulders and said it must be the antibiotic allergy.

I was not entirely comfortable with this because everything I read in my medical library (ie, Google) about allergic reactions in young kids to antibiotics was inconsistent with what I was seeing on Norah's skin. Her rash wasn't uniform--it was darker and more pervasive and was beginning to bruise on her stomach, knees, and back. Plus, it wasn't itchy. I conveyed to doctors 5 through 7 (remember, 4 physicians looked at her the day before) my concerns, especially in light of my own autoimmune issues that cause all kinds of skin wackiness, but they all reassured me that we should just keep giving her an adult dose of zyrtec twice a day and this other prescription anti-itch medication.

We had a nice day together--watched a lot of Curious George and Sesame Street, read books, did puzzles, played 'under' (she is obsessed with going 'under' anything--blankets, tables, pillows--you name it). I could tell she felt crummy though and as the day went on she got crankier and more sensitive to everything. Around 3:00 pm I noticed that she was favoring her left leg quite a bit and actually limping when she walked. Her knee was quite swollen, as was her ankle. She asked to lay down at about 3:30 and crawled into our bed, but not 15 minutes later she was crying and saying owie, owie, owie over and over again. I picked her up but she immediately stiffened and recoiled and started crying again saying she wanted to walk. I helped her get off of the bed and she started to walk but SCREAMED with every step and after about 5 steps flat out refused to walk another step. She was inconsolable (and Norah is NEVER inconsolable). She wouldn't stop sobbing so I called the advice nurse. The way it works is that you call and talk to a receptionist who takes down your information and then a nurse calls you back within an hour. In my experience calling the advice nurse line, oh about 8,456 times since Norah has been born, they usually take 59 minutes to call me back. But this time it was quick and I had a call back within about 15 minutes.

I filled the nurse in on what was going on and she could hear Norah crying in the background. I was pretty shaken up by this point and kept saying, 'I know she's been seen a lot and was just seen this morning, but I don't know, it just seems to be something more.' The nurse was fabulous and told me that she didn't care if Norah had been seen by 100 doctors 5 minutes ago, I had to trust my instincts that something just wasn't right. I agreed and said that we would bring her back to urgent care. She said that this sounded like something more than urgent care could handle and advised us to go to the emergency room at Lucille Packard Children's Hospital at Stanford.

Norah was beyond hysterical at this point so I grabbed her and her bag (I didn't even put shoes on her) and got her in the car. I won't even go into what it was like putting that baby in her car seat, but suffice it to say I have a lot more gray hair at this point. We picked up BVZ on the way. There's a lot to be said about living near one of the best children's hospital in the country. We were seen right away (I think Norah's howling had something to do with it--but there weren't a lot of people anyway, so we got pushed to the front of the line). They took her temperature at triage and it was about 102. She had been hot all day because of the hives but I had taken her temp about 5 times and she never had anything over 99. We gave her some motrin while still in triage for the fever (we had been told by the first urgent care doc NOT to give her motrin unless she had a fever over 100 because he thought it would aggravate the allergic reaction). Within about 15 minutes-which is about the time it took to get us from the waiting room into a room-she was a completely different kid.

Now, you obviously never want to be in a pediatric ER, but if you have to be, this is the place to go. The waiting room was brightly colored and decorated with big, comfy chairs and couches. Each examining room was completely private and had a Mac with music, games, movies, and internet access, as well as a television with an entire library of kids movies and shows. Norah watched Cars and was in heaven. I quickly realized that it was dinner time and I had brought nothing for her, so her dinner consisted of water and a bag of cereal at the bottom of my bag.

She was given a thorough examination by a resident who listened and asked tons of questions about everything that had gone on over the course of the past three days as well as my own autoimmune history. Everything checked out (eyes, ears, lungs, heart, belly, etc), but she didn't have a definitive answer for us and felt strongly that Norah needed to be seen by the attending (Stanford is a teaching hospital and my best guess is that the resident does the initial examination and then presents her findings to the attending who either signs off on it or gets involved). We saw the attending and within 10 seconds of seeing Norah she knew exactly what it was (although that didn't stop her from doing a full exam--which I thought was awesome).

So, drum roll please..... Norah has Erythema Multiforme (EM) Minor. It is a highly sensitive skin reaction that can be caused by all sorts of things, usually a virus. It can also be caused by a strong reaction to a medication, but the attending felt this was unlikely in Norah's case since she had taken Amoxicillin before with no reaction. Most likely, it was a minor virus she had weeks ago and this is the way her body dealt with it. EM Minor can become EM Major (or Stevens-Johnson syndrome) and very, very, very serious if the mucous membranes in the nose, throat, and internal organs become involved. So, we are on alert for anything out of the ordinary as far as that goes. But, as long as things stay the way they are now (which is the most likely scenario), she just has to ride out the rash, which could last upwards of 2 weeks. (!!!) Antihistamines will do absolutely nothing (grrr), and the swelling of her joints can be alleviated with motrin--hence why she felt so much better after getting dosed at triage.

The bad news is that she is much more likely to have an EM reaction again in the future. She may grow out of it, but she may not. The rash still looks pretty bad today, and she was really sore and creaky when she woke up, but I gave her some motrin and she's walking around just fine.

We got home about 9:30 last night and Norah was WIRED (probably from having a bag of cereal for dinner--we had nasty egg salad sandwiches ). I asked her if she wanted to go to bed and she said, 'No, Mommy. Nanor eat.' I about fell over. Norah probably has around 200 words but the word EAT has never escaped her lips. Ha. I asked her what she wanted and she said 'eggy cheese.' So, I scrambled her an egg and cheese. Seriously, people, she has never ASKED to eat. This is big time stuff.

Thanks for all the well wishes and support. Hopefully this is our last medical related post for a while.

9 comments:

Isabelle Baeck said...

I'm at a loss for words, can't imagine how trying of an experience this was... Goes to show: following those maternal instincts is #1. Love that you got the call back from the AN so quickly & that she sent you through to Stanford.
Hugs to you all, mend little N, mend!

Cam Bowman said...

Seriously, Norah knew it was your b-day and gave you EAT as a gift! Big big hugs to all of you.

aileen said...

Agree with Isa... always follow your maternal instincts. You know your child best. Glad that the pediatric ER docs know what they're doing! Hugs to the whole GVZ family especially Norah.

Jennifer said...

You guys have really had a tough couple of days. I am so sorry that Norah has had to endure this, but I am glad that you finally got an answer. Give her lots and lots of hugs from all of us & you take care too!

JAMS' HOUSE said...

Wow! What a week. Let's hope that rash clears up faster than 2 weeks!

Ave said...

Good job, Dr. Mom!

Natalie said...

Let me tell you what is kind of weird about this whole thing. Weird thing #1-About 6 weeks after Spencer was born I got really sick (just generally sick- fever, chills, etc). A couple days later I got an awful and PAINFUL rash all over my shins. I was convinved I had meningitis. I was diagnosed with erythema nodosum. Never heard of anyone else having that before now. I'm assuming the 2 erythemas are related.

Weird thing #2- I work with someone whose mother was JUST (like 2 days ago) diagnosed with Stevens-Johnson syndrome. I have never heard of that before and now it shows up in your blog as a possible Norah diagnosis. Too weird.

I really hope this is the end of Norah's pain and suffering and she gets better. What a terrible ordeal for you guys.

Maryellen said...

Poor baby. Poor mama. I'm sending get well huggies!

Anonymous said...

Oh my goodness! What an ordeal, Janet! I'll be praying for little Norah, and I hope she makes a full recovery - SOON!