This picture was taken a few weeks ago and shows the vast amount of medication Emily took in a week. The side effects were disturbing. Bizarre behaviour and mood swings, rocking, hair loss, severe fatigue, dizziness, memory loss, confusion, regression, dry mouth, loss of balance. One of the toughest things for me as a parent of a child with nerve damage and RSD has been watching my child in constant pain and making her take all of these pills. The side effects were nasty but without them Emily couldn't function because the scalding feeling in her foot was so severe. I've watched my daughter vanish into a foggy cloud for almost a year and I truly hate it.
Finding someone to manage the pain proved to be impossible because just when I found someone Cooks children's hospital pulled the pain management team. Our first pain management guy made me feel like I'm the one making my child sick which really didn't help at a time when we were in acute distress. Who deals with Emily's pain management now? ME!!
For 5 months I've been weening Emily from her medication. First went the gabapentin. I reduced it from 1500 mg per day down to 400 and then we hit the burning pain again so we had to stop. Next was the narcotic medication. I changed her dose just slightly week by week until we could switch to a different (lower) narcotic. Once there we reduced further week by week. Some days we had to abandon our plan and go back to heavy medication because the pain was to hard to deal with for Emily. My aim has never been to distress my child so it's OK to go back back if she has a flare up. Once we got the flare up to pass down we went again until she only had medication when she asked for it. Anyone who knows Emily understands that she just wants to be like everyone else so no one strives harder to be medication free. Her average dose was half of a 5/325 narcotic twice daily. 3 weeks ago we dropped to once daily. 2 weeks ago I dropped the gabapentin to 200 Mg's a day then by the end of the week down to NOTHING!!
Today (this makes me cry) Emily takes 1 pill daily, it's small and brown and called a............................MULTIVITAMIN! No medication. No more narcotics and no more brain bending gabapentin. Today is day 6!
We'll take this each day at a time. Some days Emily will have to take something to help with the pain. Flare ups are common and I know we could go backwards fast at any moment but I choose not to dwell. Is she in remission? No. Emily still has pain and it's chronic but we've changed her lifestyle dramatically and also found ways to work through it. For me it's a major win against this terrible disease and a time to reflect on this bumpy journey. For Emily it's a time to dance and sing and just be 12.
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