Tag Archive for epilepsy

True Grit, Good Eating, and Lots of Pictures!

4 girls after walking cereOur #2 daughter, Amanda, just graduated from college this past weekend.  Graduation is a big deal for everyone, but this is extra special to us.

Amanda’s epileptic, and epilepsy and college aren’t very conducive; she did it anyway.  She graduated from UVa despite more seizures there cumulatively than she’s had since she was 7.  She worked through post seizure migraines and pain, pre-seizure aura’s, and memory loss due to cluster seizures.  She had more trips to the hospital than most people have in a life time.  She missed classes and had to deal with explaining – over and over again – to her professors why.

Some days she called home crying that staying at UVa didn’t seem possible, or healthy.  But she stayed, and she persevered through more obstacles than most of us will ever encounter.20150515_154723
amanda I on step FridayI don’t know why God choose Amanda for these trials.  I do know that coming out on the other end has made her really strong.

Last week, one of my friends put this on Facebook:  “On particularly rough days, when I’m sure I can’t possibly endure, I like to remind myself that my track record for getting through bad days so far is 100%… that’s pretty good.”

That’s Amanda. She literally defines True Grit and No Excuses, and I’m so proud of her.

It’s easy to see how Epilepsy and Lifestyle are super related.  Seizures are20150516_115227 (1) triggered by dehydration, high and low blood sugar, alcohol, lack of sleep, stress, full moons, periods and God knows what else.  No one can control the moon, or a woman’s cycles, but food, water, alcohol, sleep and stress management, they’re all controllable. (Seizures can still have a mind of their own.)

Amanda has big, obvious results if she doesn’t manage her life carefully, but I want to venture that all of us have r20150516_094620esults from not managing our lives carefully: headaches, stomach problems, weight problems, auto-immune issues, fatigue, chronic disease, and pain. They’re just as connected to our day to day actions as Amanda’s seizures.

If my 23 year old daughter can own her health, we all can. Our health should be a priority, and the way we handle that priority doesn’t just affect us, it influences the children and friends and family who watch us.

Now for the Fun Stuff:  Pictures from the weekend in no chronological order, and details on how we stuck to Real Whole Food while traveling:)  20150516_192747 We were lucky to stay in the house of some friends – super lucky.  The house was a dream for me because I love old homes!  So much character!

I brought enough food that we ate all our meals at “home”. (I pretended all weekend that house was mine.)  For breakfast, we had eggs, chicken sausage, fruit, and cheese.  For lunch, we had lunch meats, cheese, saurkrauts, fruit, nuts, and paleo cookies.

20150516_184236It was the dinners that made the weekend!

We catered from a Charlottesville company called20150516_184253 dahcatering – they were FANTASTIC!  Organic and gluten free ingredients, lots of flavor, plenty of food, I can’t say enough good things.  They delivered everything on Friday and I just had to reheat each night.  Here’s a family pic of all of us, Amanda’s boyfriend Ian, my in-laws, and my niece Morgan.  It was party!

amanda and ian after diplomaThe first night we had salmon topped with pesto, a quinoa dish loaded with asparagus and herbs, 20150516_115513gluten free cornbread, and a huge spinach/strawberry/toasted almond/goat cheese salad.  The dessert: gluten free ginger cookies and Trickling Springs ice cream that I brought with us ( thank you dry ice!)

The second night we had chicken breasts stuffed with roasted peppers and mixed cheeses, topped with a mushroom/cream/white wine sauce, a GIANT bowl of roasted vegetables, roasted potatoes, polenta, and coconut macaroons with more Trickling Springs ice cream.

I believe good ice cream is essential to any celebration.

20150516_115035 (1)

Mark and Amanda after the morning ceremony.

amanda in cap gown




Amanda, as an “alumni”.

Man Post, Seizures, Constipation/Miralax, Green Smoothie

Where’s Mark’s Man Post?  It was due on April 13!  We hit a snag with our weekend plans.   Our epileptic daughter Amanda ended up in the hospital much of the weekend with “break-thru” seizures.  She’s pretty beat up.  She was put on a new anti-seizure drug a month ago which caused such a depressive state of mind;  she quit cold turkey last Sunday.  She should have weaned off the brain med; however, she’s had plenty of seizures when she’s been on her meds too.

Epilepsy Sucks.  That’s all I can say.  No, actually, I have to say she’s amazing.  Last night, after a she got home and took a nap, because there’s no sleeping in a hospital, she worked on a problem set due at 11 today.  And this morning she’s going to get up and make the walk across campus for her 11 o’clock class.  She’s the toughest person I know.

Testosterone post coming soon, I’ll let you know the date.

In honor of meds causing side effects, today’s post will be about constipation, Miralax, and it’s dangerous side effects; inspired by the lady in the bed beside Amanda.  Her name was Susan and she had a brain tumor that was causing seizures.  Her most recent seizure, that landed her in the hospital, was “different” .  Her words.  (There’s ZERO privacy in the rooms, so I heard all her conversations with the doctors, plus her conversations with her husband and daughters.)  Susan’s on Miralax twice a day, and has been for MONTHS, and Colase, once a day, but now will take that twice a day also, per doctors orders.  Poor thing can’t poop, probably a combination of her meds and Standard American Diet (SAD).  ( She was eating pudding, fiber cereal, and pancakes, with a diet pepsi, in the hospital bed.)

Did you know Miralax, an incredibly common laxative, has had a FDA warning on it since 2011, stating that it’s correlated with “NEUROPSYCHIATRIC EVENTS“?  Besides Miralax, this warning also applies to these other meds:  Movicol, Dulcolax, Colyte, Colovage, Co-Lav, Clensz-Lyte, ClearLax, GoLYTELY, GaviLyte C, GlycoLax, Go-Evac, GlycoPrep, E-Z-Em Fortrans, Halflytely, Lax-a-Day, LaxLyte, MoviPrep, Macrogol, NuLytely, OCL, Peg-Lyte, Prep Lyte, Softlax, TriLyte, and all other brands with Polyethylene Glycol 3350 (PEG for short) as their active ingredient.   PEG breaks down to toxic byproducts that first affect the central nervous system (CNS), then the heart, and finally the kidneys.

People give this stuff to babies and children, with a doctors blessing. Please read on, because American’s spend more than $700 MILLION on laxatives a year, and STILL remain the most constipated people on earth.  We’re also the most medicated people on earth, consume the most fiber supplements, and consume the most high carbohydrate fibrous grain products.  Not the most Fruit, Vegetables, Water, or Probiotic Foods,  which are actually the Fix For Constipation.   Of course, there’s not a lot of money to be made on Real Whole Foods, so Big Phuvernment’s* not going to be pushing that real hard any time soon.

PEG is classified as a “NeuroToxin”.  The scary term, “neuropsychiatric events”?  That means “neurological conditions”, such as autism, MS, Alzheimer’s, dementia, Parkinson’s, seizures, etc.  (Miralax and it’s sisters work by artificially stimulating the nervous system so that you can squeeze out a poop. Apparently, listening to Susan, it doesn’t always work.)  PEG has several other side effects that don’t include the Nervous system, and I hope you read about them all here; medications always come with side effects, even meds that are deemed so normal that they have a tag line like this:  MiraLAX® is safe and effective – and available without a prescription.  It’s not safe.  The FDA has ONLY approved it for adults, and ONLY for a maximum of 7 days.  Pregnant women and children who’ve used it should be very worried, as it’s consequences for small, undeveloped or developing brains is very serious.  Please read the full report here.  There’s this blind trust that we’ve put in the medical system and pharmaceuticals that is very, very undeserved.  Know what you’re putting in your body!

There’s NO MEDICATIONS that don’t have SOME negative effect on your digestive system: they either slow motility of the bowels, or affect the pH of the gut, or both.  And I mean, NO MEDICATION.  Some of the worst offenders?  Anti-depressants, pain meds, antibiotics,  and diuretics.  Again though, Every Single Medication affects the gut in one way or the other.

Some people are going to read this and think, No Way.  If the medication was that bad or that dangerous, it wouldn’t be on the market.  Wrong.  Money Talks,… loudly.  In 2012 a petition was filed with the FDA in an effort to get PEG out of our medicine and FOOD supply:  For the pdf look here.

“As of March 2012, the FDA Adverse Event Reporting System showed 2257 reported adverse events related (in any way) to PEG products – up from 7 in 2001. Included in the adverse events reported are serious kidney, urinary, bowel, blood, skin, and neuropsychiatric symptoms – and at least 3 children’s deaths.”  

Note the word, “products”, because PEG’s not just in laxatives, it’s in several other products also:  “food grade polyethylene glycol (under the Carbowax Sentry trade name) is commonly added to chewing gums, table-top sweeteners, and energy drinks. It is also used as a base in solid and liquid soaps, shampoos, bath and shower gels; body and face creams and lotions; toothpastes, ointments and suppositories; as a tablet binder in drugs and supplements; as a lubricant in vaginal gels and eye drops; and as a solvent in cough medicines and elixirs. ”

The resource for this post is a scientist named Konstantin Monastyrsky.  He runs a site called “gutsense” and it contains more specific and applicable information about the gut and constipation than I’ve seen anywhere else.  You should really check it out if you want to learn the super gritty nitty details of what you can do if you have chronic constipation.

In the meantime, what about Amanda’s reliance on pharmaceuticals for her epilepsy?  We can’t stand it.  She’s been on a pretty solid ketogenic diet for almost a year, and she doesn’t drink alcohol, which has to help, but she’s in college.  College life is NOT conducive to epilepsy, at all.  The stress, the deadlines, the lack of sleep.  We feel tied to these horrible drugs yet want more than anything to get off them.  In her own words, she “wonders who she is if she wasn’t on brain medications.”….  We’ve been seriously investigating Medical Marijuana, which isn’t legal in Virginia yet, but hopefully will be soon.  What is legal is Hemp oil ( it’s lacks THC, which is the illegal substance, and contains Cannabidoil, which is deemed by some scientists to be the most Anti-Inflammatory substance in the world.)  We’ve ordered some and will be trying this in conjunction with her meds.   We’ve got to get the laws changed so that more studies can be conducted in the US.  Other countries are light years ahead on this and so far, the science looks incredibly promising.  All neurological conditions and cancer seem to be the main focus, and there’s some great information on this site here.

smooth4:11I want to end on a lighter note:  my morning Smoothie!  Today’s ingredients:  raw keifer, frozen spinach, frozen avocado, frozen cranberries, scoop of dark cocoa, spoon of Stevia, cinnamon, ginger, cloves, chlorella, and topped with coconut.

The two jars next to it are my waters that I take with me, and that little jar?  Manuka Honey – a powerful antibiotic honey from New Zealand.  Great immune booster:)

** Big Phuvernment: the sexual union of Big Business, Big Pharma, and Government.**



Amanda’s Journey; Sleep Deprivation and Carb Cravings

manda me uvaEpilepsy sucks.  Trust me.  I don’t have it, but I’ve watched my #2 daughter struggle with this for almost 15 years.  She somehow gets up most days, goes to class, participates in sports, and clubs, and she (thank God) has a ton of great friends ( who’ve always been very supportive); but it can really knock you down sometimes. She had a really rough weekend that culminated in a middle of the night hospital stay, scary “heart attack like pains”, memory issues, and other symptoms.   We’re changing her meds and prayingmanda w wrap that it works.  Here’s two pictures of Amanda:  on the left is about a month ago on the lawn at her school, and on the right is in December after getting about 25 electrodes glued on her head for a 2 day EEG.  It didn’t last 2 days because she had a middle of the night seizure and “activity” that caused her to get up and take every single electrode out.  That’s from the meds, one of them disrupts her REM sleep, a lot.

Anyway, Mark and I rushed down to Charlottesville around 1 am last night and stayed up the whole night.  It’s a busy, busy hospital and there’s absolutely NO sleeping in the ER.  Checking my email the next day, I got not 1 but 2 emails about lack of sleep and over eating / craving bad foods.  One was a friend who has a puppy, and the other was a lady with a baby.  Sometimes there’s no way you can sleep through the night, right?  And wow, it really does a number on your immune system, your neurotransmitters, and your “hunger hormones”, ghrelin and leptin.

I have good news though:  the “unavoidable munchies because of lack of sleep”??  They can be avoided!!  Lack of sleep is such a hit to the body because GOOD THINGS DON’T HAPPEN when you’re up in the middle of the night (these are different things from what we’re warning our teenagers about, but just as bad).  When we’re asleep, the brain does repairs, the muscles do repairs, the immune system makes particular hormones, our glands make corticosteroids and sex hormones, the body makes Human Growth Hormone, the liver is incredibly busy breaking down hormones and toxins, the skin the lungs the kidneys, EVERYTHING is cleaning and repairing or making things.  Trust me when I say I just seriously condensed what goes on during our sleep.  If your sleep is disrupted, or you don’t go to bed early enough, you can get into real trouble.

Sleep has been a pretty big issue and topic in the news for the past few years, and I’ve often seen advice to “eat more protein” on the days you’ve missed sleep.  I agree with that, but I want to add:  Eat More Fat, on these days and every day.  Your body is CRAVING nutrients; you think it wants junk food, but that’s YOU, not your inner brain talking.  Your deepest smartest brain parts know exactly what it takes to build and repair your body, and it’s not carby cereal, or ice cream, or pizza, or chips, or a trip to Fast Food. Carbs build NOTHING, they’re just an energy source.  What you “hear” are the habits you’ve established as comfort when you’re tired/stressed/happy/sad/etc.  Give your body the fat and protein and vitamins and minerals it really wants, and you’ll see those cravings disappear, I promise.

Add the butter, add the fatty broths, pour on the olive oil, make treats with coconut oil, butter, or milk;  up the good fats with your proteins and vegetables and truly sooth your brain and body.  Also, make sure your Neurotransmitters are full:  the serotonin, dopamine, GABA, catecholamines.  These things make you “normal” feeling.  Amino acid supplements, on a particular timed schedule, do this.  Read the Mood Cure or the Diet Cure by Julia Ross, I swear it’s for real.  I’ve used her protocol on ourselves and several nutrition clients now, IT’S FOR REAL.

Another important factor:  don’t set yourself up for failure by having any thing munchie/quick/junkie in your house.  Nothing.  Quit telling yourself your kids might need a snack.  NO ONE needs crap that sets up life long bad habits or creates a state of terrible health in the body and mind.  NO ONE.  Not you, not your kids.

DO SET YOURSELF UP FOR SUCCESS:  have plenty of fats, vegetables, ….INGREDIENTS,.. that you can mix up and genuinely provide your brain and body what it’s actually craving to rebuild, repair, and make hormones and neurotransmitters.  (Remember:  ALL your steroid hormones, and ALL your sex hormones are made from Cholesterol, Saturated Fat, and Minerals.  ALL OF THEM. )

It always comes back to: eat Real Whole Food, doesn’t it?