Thank you so much for your kind words to part 1 of our personal story. Here is the rest of the story and a very exciting announcement.
And then there were night terrors…
I don’t know exactly when all the sleep problems started. It all runs together. I know that my sweet Bella learned to sleep through the night like a normal baby. In the beginning she slept right through the itching, then she scratched while she was sleeping, and then at some point she was no longer able to sleep through it. She would wake up crying and scratching. I’d give her a dose of the Atarax and rub her back until she fell asleep again.
After a while, just getting her to go to sleep became a problem. Lying in bed without any distraction, the itching seemed unbearable. She couldn’t hold still long enough to fall asleep. The more she scratched, the more worked up she became. It became necessary for my husband or me to kneel beside her bed, stop her from hurting herself and comfort her.
Then it got really fun. While we were all in a deep sleep, Bella would let out a blood curdling scream. My heart would skip a beat. I’d run into her room and find she was still asleep. She’d toss and turn and scream “Ow! No Mommy! Ow!” over and over again.
They started out as 10-15 minute episodes during which she would toss and turn. Often it looked like she was writhing in pain as she shrieked.
As time passed, she no longer tossed and turned through the night terrors but sat up in bed and clawed at her skin. In a matter of minutes she could cause enough damage to her feet that she could not wear her shoes the next morning. Once again I found myself kneeling beside her bed, holding her hands so she didn’t hurt herself and trying to calm her.
The night terrors got worse and worse. By the time she was three years old, it got to the point where they would last for 2 hours, sometimes more. They usually happened between 2:00 and 4:00 am.
We were absolutely exhausted. I often wanted to cry, but I was usually too tired to do that. I researched natural sleep aides. We tried a couple of herbs. We tried melatonin. Nothing was helping.
The pediatrician felt the night terrors would go away if we could get her skin under control. So, after almost a year of no steroids and minimal antihistamines, we picked them back up. Between the diet changes, supplements, antihistamines and steroid creams, we got to the point where daytime “itchy fits” were becoming rare. Unfortunately, the night time was still a battle.
I was worried about her body not getting enough rest to heal itself. I thought maybe the sleep pattern or lack thereof was a habit. I was sure if we could get her to sleep, her eczema would take a huge step in the right direction. Plus, I felt my other three children needed a better functioning mom. After four years of very little sleep, I was finally ready to ask for prescription help.
My pediatrician explained that night terrors are caused by psychological distress. It is not uncommon for children with chronic pain to have night terrors. He recommended we try a drug called Clonodine.
I must have checked on her twenty times that first week. Once we got the dosage right, it actually worked…sort of. The night terrors ended for a few weeks. We still had to sit by her bed, stop her from scratching and rub her itchy spots as she fell asleep and he still woke up fussy once in the night and tucked herself in our bed.
Then the seasons changed, her eczema got worse and the night terrors came back. She is still on the clonodine, the antihistamines and the steroid creams. There is no real pattern to our nights. Sometimes there are multiple night terrors that last over 30 minutes. Sometimes there is only one night terror that lasts 15 minutes. Almost every night after the night terrors, in the wee hours of the morning, she stumbles into our room while quietly crying. She climbs into our bed and asks me to rub her itchy spots. Once she has settled back into a deep sleep (approximately 30 minutes later), she sleeps late into the morning.
There are very few people who know how much of a struggle the past five years have been for us. I don’t tell you our story for pity. In fact, I know that I have so much for which to be thankful. While it crushes my heart to see my child suffer, things could be so much worse.
I hate, hate, HATE that my child is dependent on these drugs, yet I am extremely grateful that they provide her some relief.
I am sharing my story because we have been given an awesome opportunity. This weekend Bella and I will hop on a plane and fly across the country for a two week intense pediatric atopic dermatitis (eczema) program at National Jewish Health Hospital in Denver.
I don’t know anybody in real life who has eczema like Bella’s, but when I’m online it seems like they are everywhere. Believe it or not, many children have it much worse than Bella.
It is for these children and their parents that I share our story. Please stay with me as I share a daily diary of our experience the next couple of weeks.
You can read all of the posts in the Overcoming Severe Eczema, Food Allergies and Night Terrors series here.