It was a normal Saturday afternoon at our house.
My six year old was reading aloud to me. I chided her a couple of times about the funny face she was giving me. She hotly denied making a funny face.
Later that night, I saw my daughter smile spontaneously and realized something was terribly wrong.
She looked like my aunt who had a stroke over two years ago. One side of her face was smiling and the other side was just sitting there – doing nothing. (She later said she looked like “Two Face” from the Batman comics.)
And then we found out she couldn’t close the eyelid on that side of her face all the way either, even while trying very hard and squinching up the other eye tight.
After a quick internet search (which came up with something called, “Bells Palsy”), I called the after-hours pediatrician line and talked to one of their nurses. She came up with Bells Palsy as a possibility after much questioning, but felt like we’d let it go too long (4+ hours from onset) without heading to the hospital. She wanted me to call 911 and have an ambulance take my daughter as quickly as possible to the nearest hospital rather than drive her myself. (I’m not sure if she was over-reacting or I am just really laid back, but this seemed very extreme to me. Perhaps there was something on her screen that pointed to a really serious condition where we needed immediate help.)
Knowing both the ambulance service & my closest hospital all too well, I declined that option. I also bypassed the next closest hospital (30 min away) and took my daughter to the Big City (1 1/2 hrs away) Children’s Hospital Emergency Room (ER) at 9 o’clock that night. I felt I was more likely to get a knowledgeable, helpful, and quick diagnosis there. Before I left, I had to coordinate worst-case scenarios with my darling husband as he’d have to leave for work at 4:15 a.m. He started to make phone calls as I piled a reluctant child into the van.
As I drove, I wondered if I was over-reacting. Or, if I was making the wrong decision to drive the extra hour. What if time really was that crucial?
In the end, we were back home an hour before my husband had to wake up to get ready for work. My darling dearie had indeed been diagnosed with Bells Palsy. The nurse and doctor put dd through a myriad of tests and me through many questions to get to that diagnosis. DD had not had a recent ear infection, cold, or other illness that is commonly said to precede Bells Palsy. However, that facial nerve had still, for some reason, pinched and frozen half of her face.
The Children’s Hospital staff were wonderful. They suggested we put dd on an oral steroid as it has been shown to shorten & reduce the effects of Bells Palsy, although there is some debate still about using it on children. I had them give her first dose before we left. That meant I had to find an open pharmacy on a Sunday. (Three pharmacies in our small town & none of them are open on Sunday. So, the next day, I toted all five kids to the only pharmacy open within 35 miles. It was a small price to pay for her well-being. Besides, I needed to get her some eye drops.)
Thankfully, we homeschool, so I was able to minimize her exposure to other kids except for her neighborhood friends, the local homeschool group, and the kids in her gymnastics class. These were all understanding of her situation and none had to see her eat, drink, or watch her get her eye drops in.
She had a tough time keeping her mouth closed completely those first few days when she was eating. She noticed that she would dribble a bit when drinking. In what I thought was a counter-intuitive move, I allowed her to drink from a straw. I had mistakenly believed it would be harder for her to drink from a straw. Online reading suggested otherwise. As long as she kept the straw on her ‘strong’ side, she did great.
We did not have to patch her eye, but I did give her eye drops on a regular basis (once she complained of scratchiness) until she asked me to back off a bit to see how her eye was doing without them. When she’s asleep, her eyelid closes entirely, although not as much as her other eyelid does. I now only give them on a ‘asked for’ basis. For us, this is working.
The steroid can make your kid a bit … different. Everyone has a different reaction. My kid is constantly hungry, a bit more snappish than usual, and sometimes doesn’t focus well. (She had trouble with the word ‘him’ during a read aloud and couldn’t count by 10s one day. These things popped up and passed as the dosage of the steroid decreased.)
Let the adults she’ll be interacting with know what is going on so they don’t make a big deal of it and they can also step in if another kid starts loudly commenting.
It can be helpful to let the child see how he/she looks in a mirror, but can also be distressing. (Looking at her Halloween pictures got her very upset.)
Advice I followed:
Don’t have her do exercises. Just let the nerve heal.
No gum chewing. Hard to enforce at our house, but supposedly is helpful to ‘resting’ those muscles.
Don’t favor that child over the others or ‘baby’ them. (This is REALLY HARD for me and I admit to not following it as strictly as I should.)
We’ve let her know it could be awhile before it resolves itself. The other kids know not to comment on it. She doesn’t really pay attention to it except when she’s drinking nowadays. It is much more distressing for the parent & other kids who see it All The Time. Try not to let it get you upset.
Some resources that were helpful to me in those first couple of days/hours:
Support Forum for Bells Palsy Sufferers – read the Useful Information section
* This is where you find out what type of eye drops to get, for example. There’s even a post for “parents of children with BP.” They also have a FAQ that is helpful to read.
And a friend forwarded me this: A BBC reporter with Bells Palsy It was probably the best article to use when explaining what my daughter had to others.