Epilepsy Foundation 24/7 Help Line

https://www.epilepsy.com/living-epilepsy/247-helpline

I saved this link so that I could find it again.

Our newest issue is that our insurance wants to “encourage” switching to generic forms of Rose’s medications.

Generics are NOT the same as name brand drugs.

We have experienced two accidental switches in our twenty-three years, both times the results were terrible.

So here comes our next battle.  Not seizures…Insurance.

Seizure Mama

Another Mother

Rose and I had a lot of help during these years of struggle. Rose’s dad kept working through it all while I quit teaching part-time at the local college, then closed down my garden art business, later left my middle school job and lastly kissed that community college good-by for a second time. Rose’s dad has been the steadfast supporter, while I have fluctuated between fearless caregiver and emotional wreck. My husband is still working after thirty-eight years to keep our insurance. Hang in there Honey!

Rose’s big brother missed having a care-free childhood because he had to be strong and serious. I still send him silly photos on his phone to make sure he laughs once in a while. He is like his daddy. He will carry the load and stand straight up doing it. He has been there for Rose over and over again. Playing the role of goofy protector to keep her safe and laughing. I hope he surrounds himself with fun and joy as a man.
Our whole family has traveled with us on this journey; two aunts, four grandparents, a beloved uncle B and two cousins. Coming to parties and throwing parties. Showing up wherever we were with food and gifts. Calling to check on Rose. Taking her shopping.  Playing games with her. Doing what families do.
Our church has been a blessing through it all. It is like our second home. We went there during the terrible times when we did not go anywhere else. Rose got to be around familiar folks. The other children knew about her seizures. These families supported us through the tough times. Our church friends brought in meals for our family and toys, games and coloring books for Rose. Three older gentlemen made it a point to call us every couple of weeks. “How is our girl?” they would ask. Ronnie is still around. Phillip and Blake are no longer living. Rose loved them dearly and took each one’s passing especially hard.
Rose has some friends that have stayed loyal through the years. Leigh Ann, Peter, Ingrid, Aly, Erick and Christina are still her support team. These kids are like family. We are so grateful to them for helping us raise Rose. These peers were especially important through the teen years when Rose’s parents were so ignorant.

All these people gave all kinds of support, but what I really needed was another mother. I needed a mother who had raised a child with epilepsy to tell me how the hell I was going to get us through this. I did not want that other mother to be going through her journey along with me. I needed a mentor. Someone who had lived through all the trials and tribulations and had acquired the skills to stay afloat. Someone with stupid stories and anecdotes. I just needed one other mother to reassure me that we could come out the other side of this terrible tunnel. I needed to see the light.
My forays on the Internet got me drug names and possible treatments. I did not understand most of what I read. I had no medical training. I wasn’t a chemist. I did not need all that jargon. What I really needed was another mother.
That is why started the blog, Seizure Mama and Rose. I was determined to be that other mother. So that some scared mama who was going through that tunnel in real-time could glimpse what life might be like at the other end.

When Rose calls home from the university,  I tell her where our views have been.  I say, “Another mother has found us.”

Hang on “Another Mother”, Rose and I are right here.

SEIZURE MAMA

The Jacksonian March

This is not the name of a military drill.

This term describes the progression of a focal seizure up the motor cortex of the brain.

The seizure slowly spreads along what I call the “motor strip.”

I do not need to look at a diagram to remember the order of its areas.

That is because Rose’s first big, thirty-minute seizure involved

a Jacksonian March.

I watched as the chin twitch turned into, blinking eyes.

Next,  her hands pivoted down at the wrist.

Then her little arms pulled in toward her chest.

Her torso began rhythmically writhing .

Her legs bent up toward her body.

She was in a tight knot.

Even her toes were curled up.

Then she started turning  blue, because she could not breathe.

The doctor on the phone instructed me to get Rose to a hospital, FAST.

I carried this knot of a girl to the car.

When I placed her in her seat, she vomited and went limp.

The Jacksonian March was over.

Rose was four years old at the time.

This was the dramatic beginning of our journey with epilepsy.

She is twenty-six now.

She is the strongest person I know.

I pity the fool that makes fun of a person having a seizure if Rose is around.

I just hope she lets them live!

Seizure Mama

https://www.epilepsy.com/release/2018/12/epilepsy-foundation-issues-statement-indiana-basketball-player-living-seizures?fbclid=IwAR38FYNbl6LRLxX19SBTZ10OzPg-HvO2y9SmfW_4emyd6nUnzac9wbSwU9c

Hospital Gown to Ball Gown

Rose went back to our favorite hospital’s Epilepsy Monitoring Unit the last semester of her senior year in high school. Her seizures had come back with a vengeance. They were long and strong. She was getting hurt during the falls. She had gone home bound from school due to the falls and injuries.
We were hoping to get new and different set of scans this time. These two SPECT scans together would reveal what was going on in Rose’s brain during a seizure and between seizures. Then the two could be compared. We hoped this new information could help pinpoint the source of her seizures.
Rose arrived at the EMU just two weeks before the prom. We were all hoping to get the results early enough for her to get out and get ready for her prom. Rose’s brother was coaxed into taking her. He planned to come home from college that weekend to be her escort.
Her dreamy satin dress had been purchased and altered, his tuxedo had been rented. All that was needed was to be released from the hospital in time to get there. We thought that surely two weeks was enough time. We never dreamed we would cut it so close.
The story of the scans will have to wait. They deserve their own pages. Rose did get out of the EMU in time for the prom. We checked out on Thursday afternoon, the prom was on Saturday. Rose did get to go. She did get to dance. Her brother was there to watch over her. She had her emergency medications in her tiny purse. We dropped Rose and her brother off at the Civic Center and  we went to wait at a restaurant across the street. Her father, my sister and I were only a phone call away. We had pulled it off in the nick of time.
She looked beautiful. Her hair had roses in it that matched her salmon-colored dress. The bodice was covered in dangling sparkles. The corsage on her arm contained roses and baby’s breath. Our Rose was a princess and a warrior. While her classmates had spent the week getting their nails done and going to tanning beds, our Rose was in a hospital with electrodes glued in her hair.
So after nine days in the hospital, Rose goes to the prom. From hospital gown to ball gown. That is how Rose rolls.

SEIZURE MAMA SPEAKS NOW

Here is an example of balancing needs and wants. Rose needed new medical tests to get information to treat these terrible seizures. We were not going to wait any longer. When the opening in the schedule came, we took it. Rose wanted to go to her school prom. We planned for it and she went. We could relax because her brother was with her and we were right across the street, ready to swoop in. The faculty and her friends knew where Rose had been the previous weeks. No crown needed, she was queen.

A Seizure Dog Sees Rose

One afternoon, Rose and I were shopping in a large department store. Rose was several yards away from me between the clothes racks. I could see the top of her head. I saw her head turn to look at two people and a dog strolling through the aisles in her direction. I knew she had spotted the dog’s vest. I also knew that she would be interested in watching the dog in action.
The big, shaggy hound was wearing a red triangular vest on its harness. The vest was a sign that the dog was a service dog of some sort. Our family had discussed the possibility of getting a ‘seizure dog’ several times. Rose had no aura before most of her seizures. Having a dog that could alert her that a seizure was coming would be a nice warning. Rose could at least get to the floor before falling down.
I watched Rose watching the dog approach. The two adults were deep in conversation. They were paying attention to each other and not the dog. As I stood watching, the dog turned and walked away from the two people. It stopped and stood in front of Rose. I watched as my daughter and this dog looked into each others eyes.
The trainer was surprised by the dog’s behavior. He pulled on its retractable leash and gave a command for it to return to the side of the other adult. The dog hesitated to leave Rose. He paused for a few more seconds, before rejoining his trainer. The two seemed surprised by the dog’s break in training.
I spoke to the two people. I told them that Rose had epilepsy. Their looks of dismay turned into smiles. This gentle giant of a dog was a seizure dog in training. What they first thought of as bad behavior on his part, now took on a different meaning. The dog knew that Rose had epilepsy. His name was Mr. Biggles. He was with his trainer and new owner.
I got the name and number of the company that trained the dog. The threesome continued to slowly stroll around the store. Rose and I looked at each other in wonder. “How did he know?” she asked me.
It was my turn to be concerned. My first thought was that maybe he sensed an on-coming seizure. I told Rose that possibly he could smell the various seizure medications in her sweat?
Either way, I had a new hope for Rose. Maybe someday a dog could help to keep her safe.

SEIZURE MAMA SPEAKS NOW

We have not gotten a seizure dog for Rose during these twenty-four years. We had other dogs while she was growing up. This would have complicated the training of a companion pet. We did seriously consider one during the times when her seizures were frequent. They can be very expensive.
I did talk to a woman from this company about training a dog for Rose. She said that the dog must be trained with the person while having seizures. Roses seizures became so infrequent, that it would not be possible to train a dog for her. This was a mixed blessing.
Now that Rose is an adult, she may need a service dog just for protection. She goes places by herself. She is very independent. Several weeks ago, Rose had a seizure while away at college. It was at night while she walking beside a road. A dog could have at least stopped traffic.
If Rose ever needs a seizure dog, this little incident that happened in the store years ago convinced me that there are dogs who can sense more than her mama can. I am sure that Mr. Biggles has been a blessing to his owner.