Hi,
As the new year rang in and we looked forward to a promising year of potential improvement through Ciaran’s hard work. After we put retired the party hats and champagne glasses, we ran into a few bumpy weeks.
Like most households, ours was struck with the sick bug that resembled the second coming of Hurricane Sandy. Little 6th month old Kellan got the worst of it with bacterial pneumonia, while Ciaran’s sinuses and lungs took some of the brunt as well. With both kids (and myself) all on multiple cycles of antibiotics, Shannon was a true saint working hard to keep everyone happy as best she could with a lot of sleepless nights, medicine schedules and batches of chicken noodle soup.
Finally the storm passed and we all recovered last week in time to get back to school, therapy and doctor appointments. Phew…
Maybe this was just the eye of the storm and didn’t realize what was next…
One thing we have been working on since mid December has been to switch over Ciaran’s main medication. Because of her injury to her brain, she has severe “tone”. Tone is represented in the form of muscle tightness, lack of flexibility, extreme stiffness. Hands clenched, feet pointed out, legs super straight, etc. Well Ciaran has been on a low dose of muscle relaxants to assist with her tone for most of the past 3 years. The problem with the medicine is that it makes her tired and a bit fatigued. Our specialist suggested to switch her over to a newer medicine that would not make her as tired and in turn smooth our her movements as well.
Sounded like a plan…I tripled check with the doctor that the initial dosage was very small and conservative since our little warrior is pretty sensitive. This top specialist confirmed and then left for a two week trip out of the country leaving us in the hands of a good neurologist.
Ciaran was scheduled to take the med -3 times a day…it wears off after about 6-8 hours. One day one, the first two doses went down and Ciaran seemed fine. She normally goes to bed at 6:30p but was still stirring a bit at 730p that evening. Not uncommon considering the recent infection and sickness. We gave the final dose at 8. Come 11pm, she was still up….midnight…1 AM….we finally pulled her into our bedroom to manage the situation. She resembled a deer in headlights, eyes bugged out, wide awake and ready to hit an all night dance club. The weird part was that she was smiling… so although we of course were very worried, her heart rate was fine and she seemed happy. We did some deep internet research and realized that she was completely over dosed on this medicine …which was pretty scary. Thankfully we knew that we had about an 8 hour window before it flushed her system so we were already on the down slide. Come 4am…after being up almost 24 hours, she finally fell asleep.
Come 10am she woke up and was pretty worked. We were of course very upset with the doctor after learning from the neurologist and Dr Larry, Ciaran’s pediatrician, that the dosage was one you would give a middle linebacker, not a 40 lb kindergartener.
We are happy to report that Ciaran has been med free for a week now…and actually very happy. Communicating more than ever. More alert than ever, more smiles than ever…although she has a lot of tone. We are struggling with how to best manage this moving forward. It’s a very tough trade off – physical vs mental. How do we find the perfect balance?
One month down and 11 to go…with sickness and over medications behind us, Ciaran is ready to rock 2013!
Doug and Shannon
Ciaran Neiman's Blog - Smiling through Life 