Epilepsy Care in Denver

Posted by Mark Dolemba @williammark, Nov 24, 2020

1. I am looking for the leading epilepsy care in Denver for my 22-year-old daughter.

2. She had three strokes in utero which resulted in right side hemiplegia. The seizures that followed the day after her birth were successfully treated with phenobarbital, which she went off after six months. She was seizure free until this past July after completing college, just before moving to Denver to start her job. She has been diagnosed with epilepsy and prescribed Keppra for tonic seizures. In the past 30 days, she has had two more seizures. The response has been to increase dosage. The tests taken at the hospital yesterday included TSH with reflex Free T4, which were normal; the CBC indicates abnormal results for RDW, MPV and Neutrophils, Absolute, the Basic Metabolic Panel indicates abnormal results for potassium. I believe increased stress, ongoing anxiety, depression, and hormonal imbalance contribute to the abnormal brain activity that results in the seizures. I would like to have the same type of comprehensive, integrated (mind and body) care for her in Denver, that Mayo Clinic provides.

Oh my gosh, Mark. Prayers to you and your family!! My daughter is 21 and started having them after 8.5 years. It’s so hard and scary. I’m not sure about care in CO, but will respond if I hear of something. Curious, have you tried chiropractic and/or acupuncture? I would love to hear about success and failures using those alternatives. Also, there’s quite a bit of information/studies out there for positive results when following a keto diet. We have an appointment to learn more about that when we go back next week for follow-up appointments.

REPLY

@williammark
Good afternoon,

Here is a list of Comprehensive Epilepsy Centers throughout the United States.
https://www.naec-epilepsy.org/about-epilepsy-centers/find-an-epilepsy-center/all-epilepsy-center-locations/
If you Scroll down to Colorado you'll find all Epilepsy Centers including Denver Health which is a level 4 facility. Here is their website, https://www.denverhealth.org/services/neurology/epilepsy
Epilepsy Centers have Epileptologists who are Neurologists specializing in Epilepsy.

Do the doctors suspect it was the strokes that caused her seizure disorder?
Strokes are a leading cause of epilepsy in older people.

Take care,
Jake

REPLY
@paiger

Oh my gosh, Mark. Prayers to you and your family!! My daughter is 21 and started having them after 8.5 years. It’s so hard and scary. I’m not sure about care in CO, but will respond if I hear of something. Curious, have you tried chiropractic and/or acupuncture? I would love to hear about success and failures using those alternatives. Also, there’s quite a bit of information/studies out there for positive results when following a keto diet. We have an appointment to learn more about that when we go back next week for follow-up appointments.

Jump to this post

@paiger
Good afternoon,
You mentioned Chiropractic or acupuncture seizure treatment.
My memories aren't all they should be but I had an ex-neighbor whos son or relative had over 100 seizures a day. They took him to a
Neuro-chiropractor who stopped his seizures completely. I forgot what type of seizures he was having.
Take care,
Jake

REPLY
@jakedduck1

@paiger
Good afternoon,
You mentioned Chiropractic or acupuncture seizure treatment.
My memories aren't all they should be but I had an ex-neighbor whos son or relative had over 100 seizures a day. They took him to a
Neuro-chiropractor who stopped his seizures completely. I forgot what type of seizures he was having.
Take care,
Jake

Jump to this post

@jakedduck1 oh wow – thank you! I've never heard of a nero chiro! I will do some search to see if we have any in the area. My daughter also has scoliosis and I just have to wonder if there's a connection to the two. In my opinion, it just makes sense if the spine controls everything. Really appreciate the tip!

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@jakedduck1

@paiger
Good afternoon,
You mentioned Chiropractic or acupuncture seizure treatment.
My memories aren't all they should be but I had an ex-neighbor whos son or relative had over 100 seizures a day. They took him to a
Neuro-chiropractor who stopped his seizures completely. I forgot what type of seizures he was having.
Take care,
Jake

Jump to this post

This is very good information, which I will look into. Thank you.

REPLY
@jakedduck1

@williammark
Good afternoon,

Here is a list of Comprehensive Epilepsy Centers throughout the United States.
https://www.naec-epilepsy.org/about-epilepsy-centers/find-an-epilepsy-center/all-epilepsy-center-locations/
If you Scroll down to Colorado you'll find all Epilepsy Centers including Denver Health which is a level 4 facility. Here is their website, https://www.denverhealth.org/services/neurology/epilepsy
Epilepsy Centers have Epileptologists who are Neurologists specializing in Epilepsy.

Do the doctors suspect it was the strokes that caused her seizure disorder?
Strokes are a leading cause of epilepsy in older people.

Take care,
Jake

Jump to this post

Leonard, regarding your question:

"Do the doctors suspect it was the strokes that caused her seizure disorder?"…

yes, the brain damage from her stokes in utero were the cause of the seizures that followed the next day as well as the three seizures she has had recently. After the first recent one, her current neurologist said it was a matter of time before she would have them again, which I reject. If we were aware that they “could” happen again, that “would” have changed our awareness and we “would” have responded as opposed to ignoring things that “should” have been changed. Also, the neurologist expressed surprise following her second one after proceeding with the Keppra prescription, of which the dosage has been increased incrementally with each seizure.

But, I believe the life-long challenges from her cerebral palsy, which she has overcome exceedingly well through Feldenkrais therapy after switching to from traditional physical and occupational therapy, contributed to the anxiety and depression which emerged in her late teens. Hormonal imbalances and additional stresses of transitioning to an independent adult with a new career navigating its multitude of changes exacerbated the potential for additional abnormal brain activity. The warnings were all there. She needed to have a comprehensive evaluation, like the one following her birth and when she was two. With this, and proper care and lifestyle changes, I believe the recurrence of her seizures could have been avoided and or managed better. She became consumed by the chaos of life, which created chaotic neurological behavior.

The structural problems with her brain may in part, be attributable. But the brain has abundant, miraculous potential for adapting and changing, as evidenced by her cognitive and physical successes. This is what we need focus on: “changing the brain through changing the mind” as opposed to the typical approach of life-long dependency on medication. What we feed our brain and body (physically and emotionally) and awareness and control of unconstructive thought and behavioral patterns, as well as lifestyle all play an integral role in neurological activity and seizure management. So, yes, the potential for seizures existed, but much of her current trauma could have been mitigated and possibly avoided. I believe the science and protocol of this will eventually become part of effective comprehensive epilepsy care.

I had a stroke on my 60th birthday. I knew it was a stroke when I felt dizzy and after getting myself down to the floor, I realized I could not move my right arm and leg, I said to myself, “you just had a stroke”. The next words from my mouth were “start figuring out a way to rewire you brain”, which I learned from my daughter. It took a half an hour, but I did, regaining all normal motor function. My stroke was later verified in an MRI which also indicated numerous TIA’s. In addition to this I have struggled with anxiety and depression for 30 years, which along with medication likely changed the structure of my brain that may have predisposed me to stroke. When I was 42, my primary care doctor said if I do not change my lifestyle, I will not make it. It took twenty years. All that I learned, and lifestyle changes made, along with the birth of my daughter, my life’s purpose, has allowed me to survive.

Managing your brain’s health is like this computer I am typing from. It works great, when it works, which we expect and take for granted. When it stops working, many discard it and buy a new one, which can be an easy fix. Not so easy with your brain. There is a lot of information available. Sorting through it can be overwhelming and confusing. With time and guidance, I intend help my daughter solve this problem, to the best of her ability. She has done it before. She will do it again. This is what her life experience has given her. She is a natural born survivor. She is my natural born hero.

I have garnered a lot of information over the years. My daughter’s well-being is and has been my life’s mission. I greatly appreciate the help from this group and in time look forward to contributing.

REPLY

@williammark
I've had Epilepsy for 52 or 53 years, 44 years with frequent active seizures. I don’t like when doctors make seizure predictions.
However, I would caution you not to unconditionally reject that your daughter may have seizures in the future. Remember, the past, the best and most effective treatments or going decades seizure-free is no predictor of what may occurr in the future. On an Epilepsy forum I belonged to a man went 50 years seizure-free then they started again. I was told I would have frequent seizures until I died. The doctors were wrong. One day they just stopped. I had more seizures 7-8 years later when I neglected to take my medication.
Did your daughter have ischemic or hemorrhagic strokes.
Stress, anxiety, and depression are triggers in many people with Epilepsy.
I see why you call her your natural-born hero.
You have both been through so much.
You kids take care,
Jake

REPLY
@williammark

Leonard, regarding your question:

"Do the doctors suspect it was the strokes that caused her seizure disorder?"…

yes, the brain damage from her stokes in utero were the cause of the seizures that followed the next day as well as the three seizures she has had recently. After the first recent one, her current neurologist said it was a matter of time before she would have them again, which I reject. If we were aware that they “could” happen again, that “would” have changed our awareness and we “would” have responded as opposed to ignoring things that “should” have been changed. Also, the neurologist expressed surprise following her second one after proceeding with the Keppra prescription, of which the dosage has been increased incrementally with each seizure.

But, I believe the life-long challenges from her cerebral palsy, which she has overcome exceedingly well through Feldenkrais therapy after switching to from traditional physical and occupational therapy, contributed to the anxiety and depression which emerged in her late teens. Hormonal imbalances and additional stresses of transitioning to an independent adult with a new career navigating its multitude of changes exacerbated the potential for additional abnormal brain activity. The warnings were all there. She needed to have a comprehensive evaluation, like the one following her birth and when she was two. With this, and proper care and lifestyle changes, I believe the recurrence of her seizures could have been avoided and or managed better. She became consumed by the chaos of life, which created chaotic neurological behavior.

The structural problems with her brain may in part, be attributable. But the brain has abundant, miraculous potential for adapting and changing, as evidenced by her cognitive and physical successes. This is what we need focus on: “changing the brain through changing the mind” as opposed to the typical approach of life-long dependency on medication. What we feed our brain and body (physically and emotionally) and awareness and control of unconstructive thought and behavioral patterns, as well as lifestyle all play an integral role in neurological activity and seizure management. So, yes, the potential for seizures existed, but much of her current trauma could have been mitigated and possibly avoided. I believe the science and protocol of this will eventually become part of effective comprehensive epilepsy care.

I had a stroke on my 60th birthday. I knew it was a stroke when I felt dizzy and after getting myself down to the floor, I realized I could not move my right arm and leg, I said to myself, “you just had a stroke”. The next words from my mouth were “start figuring out a way to rewire you brain”, which I learned from my daughter. It took a half an hour, but I did, regaining all normal motor function. My stroke was later verified in an MRI which also indicated numerous TIA’s. In addition to this I have struggled with anxiety and depression for 30 years, which along with medication likely changed the structure of my brain that may have predisposed me to stroke. When I was 42, my primary care doctor said if I do not change my lifestyle, I will not make it. It took twenty years. All that I learned, and lifestyle changes made, along with the birth of my daughter, my life’s purpose, has allowed me to survive.

Managing your brain’s health is like this computer I am typing from. It works great, when it works, which we expect and take for granted. When it stops working, many discard it and buy a new one, which can be an easy fix. Not so easy with your brain. There is a lot of information available. Sorting through it can be overwhelming and confusing. With time and guidance, I intend help my daughter solve this problem, to the best of her ability. She has done it before. She will do it again. This is what her life experience has given her. She is a natural born survivor. She is my natural born hero.

I have garnered a lot of information over the years. My daughter’s well-being is and has been my life’s mission. I greatly appreciate the help from this group and in time look forward to contributing.

Jump to this post

@williammark Welcome to Mayo Clinic Connect. You and your family have been on a journey. You are looking for comprehensive care in Denver to treat your daughter's recent seizures. I'd like to invite members @jenfossbru @boston2mayo @dawn_giacabazi @patrassi @ahernandez and @jenfossbru into the discussion, as they have discussed epilepsy previously.

For many insurance coverage determines where they receive care. Sometimes I work backwards regarding where I receive care. Meaning I look for faculties that accept my insurance and then compare the facilities' reputations.

I'm wondering if you have looked into facilities that accept your daughter's insurance in Denver?

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