Drug Changes Change Rose

Story # 20:

Things fell apart. Drug 4L had been added to drug 3S after the seizures during the holidays. At first drug 4L made Rose mean. Getting her schoolwork done was a battle. Either she would not or could not concentrate. Were these changes due to the new drug, the new homebound situation, or the seizures? Her ear infections continued, so antibiotics were frequently in the mix.
We kept records of all her drug dosages and combinations, along with seizure descriptions on a chart. We couldn’t keep all of it straight unless we wrote it down. The months were a blur of seizures, side effects and sickness. I read books about epilepsy and researched epilepsy drugs and treatments. It was all so confusing. How could we help our Rose if we did not understand this disorder and the effects of its medications? I felt helpless and hopeless. Rose was changing as her drugs changed.
Appointments with the neurologist became very frustrating. The partner of the practice had left, so our doctor was handling a double load of patients. We used to feel like there was a set plan for Rose’s treatment; now it seemed like one long experiment. The doses for drug 4L kept increasing and we saw nothing but side effects. Her seizures became longer and stronger. We must have missed the window of effectiveness for drug 4L. Finally it was dropped and drug 5Z was added to her doses of 3S. Experimenting with the wrong drugs and dosages went on for months. Every few days, Rose would have a long, strong seizure. She would spend a day or two recovering before another seizure knocked her back down. I did not leave her anymore. I was too scared.
Sometimes on the weekends when Rose’s dad was home, Rose’s brother would ride the trails through the woods around our house. I would go with him carrying my camera and a walkie talkie. If a seizure occurred, her dad could call me to come back. I would hike through the woods and allow myself to cry. This was the only time I would leave the house. I walked the paths in our woods relieved to be out of our sad house where the walls kept closing in.
I never let Rose see me cry. We did not want her to see us saddened or scared. We were losing her. Her essence was disappearing. She was a groggy, foggy, tired mess. The drugs were not helping anything. The seizures were wearing her down and the drugs were ruining the time in between them.

Seizure Mama speaks to parents:

I am ashamed to look at the records from these terrible months. Why did we not get a second opinion sooner? Why did we not demand to go to an EMU? The awful reason was that we thought going to the EMU was a big step toward surgery. I had read about the different surgeries that were used to stop seizures. I wanted to give every drug a full chance to work. When I look back at her charts of medication combinations now, I am horrified.
Drug changes were being made frequently and almost in a random fashion. I think the neurologist was on overload and was pushed to try things because of my constant calls and letters. She was seemingly experimenting with various possible remedies.
It took the terrible scare of Rose going toxic for us to decide that enough was enough and seek a second opinion from a different neurologist in a different city. That was a turning point for us. Don’t wait that long.

Author: Flower Roberts

seizuremamaandrose.org

9 thoughts on “Drug Changes Change Rose”

  1. Severe health problems are hard for us to understand. We often make mistakes and it seems that drugs often compound the problem. We do the best we can, but we always beat ourselves up mentally when things go downhill. Trying what you thought was best for Rose meant you were a caring and loving parent. I am glad you got that second opinion and I hope someone will be able to help Rose very soon. God bless you and your family – I am praying for you.

    Liked by 1 person

      1. I totally knew you were sharing the past . I also knew Rose was away from home now. Still I wished to let you know that your story needs to be told. You need to go to Amazon Kindle and open an account – do what the instructions say. Post your book with them and buy one preview copy of your book and make sure it is as you want it to be. Correct anything that is wrong – then publish it with Amazon. May only cost about $4 for a preview copy. Costs nothing to have it published. If you wish copies of the finished book for yourself the cost is around $4 per book to the author. They will probably sell your book for approximately $10 to $12. You get 70% – Amazon gets 30%.

        Like

      1. You might add the year. I did realize this had happened earlier, but I have been praying for Rose since I learned of her problems. I know prayer works – that is the only reason my husband is still with me.

        Liked by 1 person

      2. I read many dementia books before I wrote my book. Always helps to have ideas and info on the illness you are writing about. Good luck on your book – wish I could help you more on getting it published.

        Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s