Monday, July 21, 2014

Deepest Suffering and Deepest Joy


This is to all my brothers and sisters in Christ and anyone seeking to know God and see through His eyes.

It's been on my mind a lot lately, and I needed to share it. Hopefully this will help, encourage, or push someone on in their life's journey. It's about being Jesus to a broken world. It's about sorrow and joy and empathy and action.

Lately I've been talking to a lot of beautiful warrior moms in some TSC forums...many of them just receiving the devastating diagnosis of TSC for their child...or TSC and epilepsy....or TSC and epilepsy and autism...They're working hard for their babies...researching, asking questions, praying, crying....Exasperated, they ask about how to get their baby to eat, who can't seem to figure out eating solid food....or how to get their child to sleep, who seems to be the walking (and jumping and screaming) definition of insomnia. They ask about seizure meds and diets and side effects and surgery. About heart tumors and meds, about how to get their child to stop biting/hitting/screaming/raging when nothing else works. If they can know how severely their child will be affected by this disease. About clinical trials and medical marijuana and the best hospital or TSC Clinic or doctor for their child. I've read countless comments that says "I HATE TSC!" or "I HATE EPILEPSY!"

And i read these online conversations and I cry.

I remember...that I've been there. And that I'm still there. And as much as I wish I could take TSC away from my daughter, I see the beauty in the midst of the pain, and I see how I'd still be blind to much of the world's suffering and still living in my little bubble.

I've come to a point in our journey when I might not like TSC or epilepsy or Audrey's meltdowns...but I love how strong it's made my daughter at only four years old. And i love how strong it's made me. I love how strong it's made Asher. I love the compassion it's taught to my seven year old son who, when Audrey's raging, and I'm at wit's end, says,

"It's okay mom, I got this. I can get her calmed down...." And he asks Audrey if she needs a hug and if he can read a book to her. And continues to reach out to her, unshaken, when Audrey attempts to punch him, through tears. What seven year old boy does that? Mind you, it's not always like that. They have their fights. He does things to antagonize her and she steals his stuff, like every other group of siblings 2 years apart in age. But then there are those times when I've battled Audrey to nap for the fifty billionth time, and i fall onto the couch exhausted...but unaware of my own exhaustion because it's become my normal....

...and Asher hands me a glass of water, puts his arm over my shoulder as if he's comforting a friend, and says, "Rough day, mom?"

I ask him why he said that, since I think I'm fine....

"Well Audrey was having a rough day and she was hitting and screaming and I know that's hard on you."

Yall, I'm not making this up. This conversation with my 7 yr old son actually happened last week.

My kids cuddling during my daughter's EEG

And I love that when I take Audrey to the doctor, or the grocery store, or Chuck E Cheese....she strikes up conversation with anyone and everyone.... She saunters over, cool as can be to complete strangers and says, "What's up?" Gives them a high five and flashes her dimpled smile. And in a city with so many lonely people and perhaps the lowest levels of hospitality I've seen in any city anywhere, Audrey is not afraid to make connections. She's not afraid to hug the boy at the ophthalmologist's who has cerebral palsy and a walker. Or the older boy in the same room wearing a helmet. Or the almost-7 foot young men playing basketball at the park.

And I realize, I'm not scared for her future any more. At least not hourly, daily. I don't know her future...I don't know if her seizures will come back with a vengeance. But even when she had a ten minute long seizure, completely out of the blue that necessitated calling 911....I realized I wasn't nearly as scared over that as I would've been a few years ago. 

And I'm thankful that though the doctors said she'd never walk, talk or make eye contact, that she is running and telling me off when she's mad and carrying on conversations with strangers at Chuck E Cheese. And yet even though we're doing okay and she's beating the odds, I still cry. But not out of fear. My heart breaks.

I want to encourage and comfort other moms as an angel woman once did to me by saying they'll find their new normal. They need not be petrified forever. My deepest desire is to help others who are where I was not very long ago.

Here's what I've learned: if you want to work hand in hand with Jesus in this world and do kingdom work, you have to see the way God sees. You can't numb the feelings and you can't turn a blind eye to the suffering in the world. If you really ask God to see this beautiful messy broken world  the way he sees it, apathy isn't an option. You will experience greater joy at the seemingly insignificant, and you will mourn deeply for complete strangers.

I used to wonder why Jesus wept when he arrived at his friend Lazarus's grave...when he knew his friend was going to die, and he knew he was going to bring Lazarus back from the dead.

Because Jesus wasn't weeping out of fear. He was weeping because he felt the pain and brokenness of this world. Because death was never supposed to happen. Ending of relationship (through death or divorce or miscommunication) was never supposed to happen. Seizures and tumors and sensory overload and pain were never supposed to happen. Sin (which is more than people "doing bad things" but rather the entirety of the brokenness of this world) was never supposed to happen. Jesus grieved this. He cried. And he stepped into the ugliest parts of it and he felt it and he faced it and absorbed it and that's where death was defeated. And while the war is over, the battle rages on, and God asks us to join in. The beautiful thing is that when you face the ugliest and scariest and most unjust pieces of this life, you see beauty and joy like never before. I promise. You'll see things other people can't see.

And the world needs you to do that. Please don't be afraid to enter into peoples' messes. Don't be afraid to help the homeless, the divorced single mother, the veteran with PTSD, the woman with alzheimers who treats you like dirt, the suicidal teen boy struggling with his sexuality. Don't be afraid to foster children with no parents, even if their mothers did drugs while pregnant. Don't be afraid to smile and say hi to a child who can't make eye contact with you. Wherever God opens your eyes to the suffering in this world, enter into it in whatever way you can. They will be blessed, you will be blessed. And this is how God's kingdom comes to earth.

I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world. John 16:33

Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress and to keep oneself from being polluted by the world. James 1:27

Wednesday, February 5, 2014

Seizure-Safe Aromatherapy, and some DIY Recipes!

So, I wrote a bit about aromatherapy and how to use it safely when dealing with someone who has epilepsy, but I felt I should write a new post specifically about this. (Let's face it, the other posts are REALLY long with lots of topics in them). I've realized a few things.

1) Aromatherapy/essential oil use is becoming increasingly popular (a good thing)
2) Far too few people in the epilepsy community have been informed of the dangers of using certain oils because of the epileptogenic properties
3) Far too few parents know that certain oils are not safe for use in small children
4) Far too few sellers of essential oils know these dangers or warn their customers of them. (the multilevel marketing companies with "independent consultants" are the biggest culprits in this, i think)

The easiest way to avoid these dangers while using these oils is to be under the care of a trained and certified Aromatherapist. But I know not everyone is going to do that, so I'll share what I know. Please know I'm not a doctor, and not giving medical advice. I'm simply a mom who uses essential oils a lot, and has a daughter with severe epilepsy. First the dangers...then read to the end for some free oil-recipes that I've found REALLY helpful.

Essential oils tend to have lots of different chemical "constituents"...Without getting into too many details, you want to avoid any oils that are "camphoraceous". This list is actually quite long. Some of these are *known* to cause seizures in studies; others the evidence is less certain but given the oils' constituents is likely to cause seizures in those with a low seizure threshold. I want to also add that many of these oils are totally safe for the general population, it's just sometimes there's a different set of rules for those with epilepsy, and this is one of those times.

You can find a listing of camphoraceous oils HERE.

In addition to these camphoraceous oils, I've read in several places that others to be avoided are:

Basil, Wintergreen, Camphor,  Hyssop, Sweet Fennel, Pennyroyal, Savin, Tansy, Thuja (also called White Cedar, not to be confused with Cedarwood or Red Cedar which is beneficial), Turpentine, or Wormwood.

And of course, just use common sense. If you start using an oil, even one that seems to be "safe"...and seizures are increasing...*stop using it*. Just as some antiepileptic drugs stop seizures for some and increase seizures in others, for unknown reasons, no doubt natural treatments are capable of doing the same.

Still, there are some oils that have been found to help and are usually quite safe, and I wrote about that HERE.

I also just wanted to mention that some oils are not safe for all small children because of the effect they have on the lungs. Peppermint and Eucalyptus are on that list, and I would spend some time researching oils before using them on my children. When in doubt, Lavender is really safe, and can even be used in some preparations on babies if diluted in another's calming, allergy-reducing, antibiotic, helps with headaches, etc. And it's the safest oil out there.

Ok, so now on to the RECIPES! :)


There are two very common oil blends used particularly with the multilevel marketing companies (whose names I probably can't list without permission, but if you use oils a lot and bought them from an independent seller/work at home mom, it's probably one of these companies). One is used for breathing issues...opening up the lungs during colds, flu, allergies, bronchitis, etc. While this is a great blend, almost all the oils in the blend are camphoraceous and not safe for those with epilepsy.

When my daughter is having difficulty breathing, i've found that

lavender, lemon or sweet orange and black cumin essential oils 

are the only safe ones that help. They don't have the "cutting through your nostrils" feeling that say, eucalyptus has, but they are beneficial to the entire respiratory tract, and all are very good at killing pathogens (bacteria, viruses, fungi). You can use any or all of these in a diffuser and breathe them through the air, or you can add them to a carrier oil (I prefer sweet almond but you can use jojoba, fractionated coconut oil, olive oil, etc) and rub them into the chest. If you are using them on an infant, dilute them and rub into the feet. (Always dilute with oil, not water, and if applying citrus oils topically, do not expose the area to sunlight for 24 hours after application, as these oils are phototoxic...meaning it's dangerous to have them on your skin if that area will be exposed to the sun).


And the second recipe is a blend known to help the immune system. There are different names for this blend...the most well known one having to do with another name for "robbers" (not allowed to say the name)....and while this oil is great for killing just about any cold or flu or preventing it....the oils are not safe for those with epilepsy. So i made my own blend that works REALLY REALLY well! The oils included are:

lemon, black cumin, cinnamon bark, and clove

*Please note that cinnamon and clove are "hot" oils and should ALWAYS Be diluted in a carrier oil or they WILL burn the skin.*


7 mL chosen oil (jojoba, sweet almond, fractionated coconut oil, olive oil)
3 drops Lemon essential oil
2-3 drops Black Cumin essential oil
1-2 drops Clove essential oil*
1-2 drops Cinnamon essential oil*

**I've modified this recipe to be more in line with the dilution recommendations that are routinely used by Aromatherapists. The previous recipe used far more drops of each oil/more concentrated, but not necessarily more powerful, and more likely to cause sensitization or reaction. We're always learning, aren't we? Full disclosure: When I first wrote this article, I was just reading online what I could find, like most moms....which I fully I just have better info, and happen to be studying to have a Master Aromatherapist certification.**

Mix together and put in a roller ball applicator, or in an empty essential oil dropper bottle (this is more than a roller ball applicator will hold, and almost fills a 10 mL essential oil bottle).* Apply to the bottoms of the feet (most absorbent place on the skin) to fight off colds, flus, or any infectious illness.

*Leave clove and cinnamon oil out of the blend if you have kidney or liver failure, are taking anticoagulants, or are an alcoholic. the Black cumin and lemon oils alone will still be very beneficial.

And last, you can take those same oils (without the carrier oil) and blend them with a half/half mix of pure aloe and water, and use it as a natural hand sanitizer!! :-D

Blessings, and please comment below if you use any of these and notice any benefit!

*I get my oils from Native American Nutritionals and I get my bottles from Mountain Rose Herbs.

Wednesday, January 29, 2014

Define "Risky"...

First I should say I really DO almost have finished that third installment on natural treatments for TSC and epilepsy. I really should've written it a year ago, but last year was a very crazy year. But I wanted to share this thought while I work on finishing up that other article.

Research and life experience has taught me that there are a lot of natural treatments for just about every illness under the sun. I had my daughter unassisted at home; I've cured ear infections and pink eye with breastmilk; I've cured shingles with Lysine; pertussis with sodium ascorbate (Vitamin C); the flu with elderberry syrup and/or garlic and raw honey; colic and silent reflux with diet changes and probiotics; fungal infections with coconut oil. I could go on...the list is long.

But sometimes natural treatments don't work. Sometimes western, prescription treatments don't work either. And when the discussion comes up about surgery, particularly with epilepsy, inevitably people say "but that's so risky! she seems to be doing ok...are you sure you want to do something so drastic?"

Being on the other side of four successful brain surgeries with my daughter, it's easy for me to say this, but I just wanted to talk a bit about real "risk" vs. fear of the unknown.

For those of us battling epilepsy, especially medically refractory epilepsy (epilepsy not controlled well with medication), sometimes the conversation of brain surgery comes up. It did regarding my daughter at an early age. She was 14 months old when I started seriously researching the prospect of epilepsy surgery. Red tape and insurance issues prevented it until she was 3, but she was a good candidate from much earlier on.

I guess I should start by saying the obvious. There are real risks to epilepsy surgery. I've spoken with those whose children have had strokes after epilepsy surgery. Others, their child's personality was permanently altered. Allergic reactions to anaesthesia can be fatal; blood loss is always a concern. Obviously brain surgery is a "big deal". But often parents talk about brain surgery as the absolute last resort, or NOT an option because it's so much more "risky" than uncontrolled epilepsy or being on five seizure drugs.

Some of what I'm about to say may sound harsh, but I only say it because I've been there, I've been in the place of having to make these decisions, and it feels sometimes there's no good answer. I had to do a lot of soul searching and I recommend that parents in this position do the same. What I had to do was set aside my fears and emotions, and instead look at the cold hard facts. What is the statistical likelihood of the various side effects or complications that come with the various (or limited, depending on what you've already tried) options?

What I realized is that honestly, many of the drugs she had been on had a stronger likelihood of side effects, some potentially very serious...but sometimes the side effects happen slowly, over time. So they're every bit as "risky"...but not quite as "scary". Let me explain.

Audrey's first drug she went on for infantile spasms at 4 months old was ACTH...a very very strong steroid...and she was on large doses of it. This steroid severely inhibits the immune system, such that a simple cold or mild scratch on the skin could be potentially fatal. It also put her at risk of developing diabetes, not to mention making her extremely obese.

Topamax inhibited her ability to sweat so much that her sweat glands didn't start working again until 3 years after she stopped taking the drug. In the summer time, this can definitely be fatal. She regularly got bloody heat rashes in barely 80 degree weather in the shade. It also changed her personality and due directly from the drug, her speech regressed severely, and this is a very very common side effect of the drug.

She had a psychotic reaction to a Dilantin bolus in the hospital where she looked like something straight out of a a horror movie, her BP and heart rate went through the roof, her brain activity wasn't even measurable on the EEG because it was such a mess, her eyes were rolling back in her head, but not like with a grand mal seizure...more like someone who looks possessed in a horror movie. It was scary. Her voice changed. I dont think the nurses had ever seen anything like it.

Deadly skin rashes can occur from reactions to certain seizure medications, and they are relatively common. And then there's SUDEP....ANY uncontrolled seizures that seem "mild" can snowball to where the condition is less controlled and more risky. Sudden unexplained death from epilepsy is a risk with anyone battling epilepsy, especially if the epilepsy isn't medically controlled well.

And of course, ANY prescription seizure medication is going to slow down the brain, and often the effects to cognition and learning are worse with the drugs than with them just having seizures.

Now, having been through 2 intercranial (surgical) EEGs, a left temporal tuber resection and a right temporal tuber resction within 2 months' time with my 3 year old daughter...I can say that it was very stressful. It was not an easy time. She was miserable and sore; i got no sleep. She had an irritated spot from the grids on her brain after her 3rd surgery that made her feel things that werent there; I had a mini- stroke due to stress after her 3rd surgery, and threw out my back. It went as smoothly as this sort of thing could possibly go, and yet it was still one of the hardest things i've ever been through.

BUT....over all, it has caused far fewer side effects than the drugs she was on did, she recovered surprisingly fast, and from the first night after her surgeries, we saw HUGE improvements in her cognition and speech. She began sleeping through the night for the first time in her life..even when her seizures were controlled by drugs she still woke up throughout the night. No longer.

Also there were things that I thought were just part of who Audrey was, or things i thought she'd never learn how to do, and had kind of settled with that...but since the surgeries, she's changed...for the better...she's learning things I never thought she'd learn, doing things I never thought she'd do. This is something that did not happen with any of the eight seizure drugs she has been on over her 3 years of life up to that point.

I don't want to say that surgery is *less* risky than drugs. That's silly. But I also truly do not think it is more risky. I really don't. I think it's just easier to get lulled into the "comfortable" with drugs because usually the side effects with the drugs happen more slowly and gradually than a complication from brain surgery would. Drugs or surgery can help. Drugs or surgery can kill. The positive with surgery, however, is that if it're done. It's over. You don't have to deal with it for the rest of your life. You have a few weeks of hell...and gets better. With drugs, it's always a battle, ALWAYS a risk of developing new side effects.

Anyway I'm always a believer in following your gut as a parent...and I"m certainly not trying to tell anyone what they should do. Our kids are all too different, and I'm not a doctor. Just wanted to throw out my perspective as someone who has been through all of it.

This post has gotten too long already but I'm hoping soon to share the details of her surgeries for those who might be going through it, so I can share what I learned through it and hopefully be of some help to those going down this same path.


Wednesday, January 1, 2014

Little life lessons....

I've not used this space very often as a place to speak of emotional/spiritual things, but I felt it was worth sharing.

Over the years I've become increasingly aware of all the ways the world tells us to be attractive, to please other people, and to live for others' approval. Unlearning those lessons is something I've been working on since my teenage years, and as a result I've been acutely aware of the words I use when I speak to and about my daughter--and about myself in her presence.

But, I guess it caught me off guard when I had such a conversation about self-image and self-worth with my six year old son. Six year old boys aren't affected by such messages are they? *sigh* I was clueless.

I was sitting on the couch with my kids. It was a lazy day, with my son having a 24 hour stomach bug. So we cuddled on the couch and watched movies.

All out of the blue, Asher begins crying. I asked him what was wrong.

"My teeth are crooked! But I don't want braces!"

Now, Asher is only six. He only has two of his permanent teeth, and several loose baby teeth--the top ones being slightly bucked since he still sucks his thumb. I tried to brush it off. "Well, babe, if you get braces it won't be for many more years after your adult teeth are in, so no worries."

"But I don't want them!"

"Okay, so don't get them. No one is going to make you get braces if you don't want them."

"But, if I don't get braces, since I've sucked my thumb, my teeth will be crooked..."  as he bursts into tears again.

"Well, that's not the end of the world, son. When the time comes, if your teeth are crooked, you can decide if you want braces to make them straight or keep them as they are."

"But, if i don't get braces, all my friends will be MAD at me and not like me!"

Whoah. Hold on a second. All this time I had been on hold with the insurance company, as I tried to get him thinking on another topic and not worrying about it. At that moment, something cut into my soul. My son was being attacked by the goblin that's been chasing me for 31 years. The People Pleaser. An ugly manifestation of shame. I hanged up the phone.

I told Asher to come sit in my lap and I held him as he sobbed.

"Listen to me, son. God has made you beautiful and unique, inside and out. He chose your hair and eye color, your height, what your fingers would look like, and the shape of your teeth and mouth. It's his artwork. But he's also given us our bodies to take care of. It's why we bathe and brush our teeth and cut our nails. God lets us share in making his artwork. It's why some people dress one way, and others another way. It's why we style our hair differently. But God put you in charge of your body. So if you want a mohawk or a traditional haircut, fine. If you want to wear one outfit or another, fine. If you want to dye your hair, fine. But do it because you want to, and because it makes you smile, not because you don't like God's artwork, and not because you're afraid your friends will not like you if you don't.

If you want braces when you are older, if you need them, that is fine. If you don't want them, that is also fine. Your friends will not care, and if they do, they are not your friends. One is not better than the other, just personal preference, like how you style your hair."

I hope the message took. But sadly I know I'm going to have to say the same message, in a thousand different ways, every day, in my actions and my children, to myself, and to the world. Shame is a nasty beast and it does not die without a fight. But I believe the battle is crucial.

You are beautiful. You are inherently "worthy of love and belonging" (to quote Brene Brown).

Peace to you all. And Happy 2014.

Wednesday, April 3, 2013

Does autism need cured or not?

I will finish the last part in the natural treatment for Tuberous Sclerosis, but I felt it was important given the time of year that I write this article. It is April, and April is Autism Awareness Month. Though most talk about finding a cure, there are those--sometimes mothers but often adults themselves who have autism, that argue that autism is simply a difference in the way one views the world, and to argue that it is a disease is like arguing that being Jewish needs cured--it is prejudiced, and is an effort to get rid of anyone different than ourselves.

I have read a few articles over the last few years from adults with autism, arguing that very thing--that to try to take away autism is to take away a piece of their personality, and that they don't need or want to be cured. The most recent article I've read on this subject can be found here: April is the Worst Month.

I recommend reading her article to understand this point of view, where they are coming from. Her argument is certainly valid. After all, she has grown up with, and still has, autism. Surely she is in a strong place from which to speak about it.

But, I would argue the issue is not so black and white. For many parents, their children getting an autism "diagnosis" has been helpful in that it has gotten them the help they need to be able to more easily function in the world, or gotten their parents the help they need to better understand their children and enter their world. The unfortunate thing about an autism diagnosis, however, is that autism is not "one thing". It is a spectrum, and it can look very different from one person to the next. There is a common phrase, "When you've met one person with autism, you've met one person with autism."

People will point to highly functioning people with autism or who were believed to have autism, like Albert Einstein or Temple Grandin. It is absolutely true that autism does NOT equal ignorance, inability to think or anything of the sort. There is indeed a lot of misunderstanding surrounding autism, and society as a whole needs to work harder to understand the world of those living with autism or raising a child with autism. The author makes many valid points.

I have two children. My five year old son has sensory processing disorder that can be managed fairly well with diet--but if he were to eat a standard American diet, he would be a very different, very agitated, very stressed child. He is very smart, and he talked very early. I recently learned that he memorized my cell phone number after hearing me repeat it *once* in passing. He is 5. I can barely remember phone numbers now. He remembers so many things, years later, that I cannot comprehend how he does so. When his SPD is not as well controlled, he can hear things I can't hear, smell things I don't smell (much akin to the nose of a pregnant woman or dog!), and visually pick up on things I don't notice. His brain is on hyperdrive, and one could certainly find pros to having such a condition. However, I considered it a case of disease--dis-ease--because he was not at ease with himself or the world. He suffered by the simplest things that could not be avoided, and not just people judging him or my discipline measures or seemingly lack thereof. He was scared and terrified by the sun, by flushing toilets, by hairbrushes and water and wind. At three years old he had to be put under and had fillings in all his molars because he refused for months on end to brush his teeth because it tickled too much, and if i were to force him you'd think i was cutting off his arms. It was literally torture for him. These were not issues of him not being understood by those around him, or me wishing he were "like everyone else". I had some of the same characteristics as a child (and was just considered by everyone to be whiny), so I understand somewhat where he was coming from. But my baby was suffering. When he was 2 years old, he accidentally had a bite of pudding. I already knew he reacted negatively to cow's milk so he never got it, but this time he had one bite. He had been playing calmly in his bedroom, and out of the blue, with no one else around, he started screaming hysterically. I went in the room, and he would not make eye contact with me, he began hugging himself and rocking back and forth screaming. I tried to run to him and hold him, and he pulled away like my hand was acid. He ran to his *metal* closet doors and began banging his head into them and he did this for probably twenty minutes before he sat back down in the middle of the floor and began crying some more. I finally realized what was happening, told him I loved him and I would be in the other room and waited for him to calm down. He eventually fell asleep in the middle of the living room floor. This was very uncharacteristic for him. But, he had always been gluten free (I've been for 10 years), he had been dairy free his entire life as well. (and both of my children are not vaccinated for other reasons than fear of autism...that is another story for another time...). The one bite of pudding turned him into another person entirely. Any time he eats certain foods or eats too many carbs or fake foods, he very clearly shows behaviors of someone on the spectrum, and he very much seems to be in a state of dis-ease. He is suffering. It is not just about helping people understand him. The sun will not shine less brightly because my son's eyes cannot handle the light.

My daughter is three. She has a genetic tumor disease called Tuberous Sclerosis Complex, and as a result of the tumors in her brain, she has medically refractory epilepsy. She is developmentally delayed and has been very slow to speak. Because Tuberous Sclerosis is the leading genetic cause of both epilepsy and autism, she has regularly been evaluated to see if she is developing or has autism. Thus far, she has not been given a diagnosis, but lately I've seen certain behaviors very characteristic of the condition despite her being very social, very interactive, and has great eye contact. These behaviors pop up most when she is stressed by situations beyond mine or anyone else's control and it makes it hard for her to function in public places even if said places were as understanding and accommodating as possible.

I do not want my children to unnecessarily suffer. Period. It has nothing to do with wanting them to be like everyone else, or me not wanting inconvenienced by their differences. Not everyone feels as though they suffer with autism, and if they are happy with how they are, people should be understanding and respectful of that. There are certain talents and gifts that people with autism can offer the world that we should honor, ones the rest of us simply do not possess. Art, revolutionary thought in science and math, work with animals...just to name a few. But for those who are suffering....who are getting concussions and bloody faces from slamming their faces into hard surfaces to try to make the sensory overload stop...please don't say they are fine just as they are, because you are fine as you are. That is not understanding. There are also others with severe autism who have found a way for their voices to be heard, and they have made it quite clear that they wish they did not have the symptoms that come with autism.

And last, I should add that research has shown that autism is not simply a unique way of seeing with and interacting with ones'  world. It is often linked with very real disease in the gut and the immune system. Those with severe autism often struggle with both diarrhea and constipation, eczema, allergies, getting sick more often than others, and measurable vitamin deficiencies. These are the very definition of disease, and no amount of understanding their world will make those problems go away or be less problematic.

Saturday, January 5, 2013

Natural Treatment for Tuberous Sclerosis Complex and Epilepsy, Part 2

First off my apologies for taking weeks and weeks longer than I had intended in writing this post. We have had some personal family crises, and we are preparing to start testing to see if our daughter is a tuber resection (epilepsy surgery) candidate.

If you have not read part 1 in this series, I highly recommend doing so, as some of what I write will be explained in greater detail there and I will probably reference back to it at various points.

Also, as a reminder: I want to point out that I am not a doctor, just an overanalytical mother of a child with Tuberous Sclerosis that has had a fair amount of success at treating TSC naturally (in some cases only with natural medicines, other times they are used in conjunction with prescription drugs).  I will share our personal experiences and scientific research/studies where appropriate. If you or a loved one has TSC or you suspect it, I highly recommend contacting your nearest Tuberous Sclerosis Clinic, where there are medical specialists who are experienced in the latest advancements in treating TSC. And if you suspect your child is having infantile spasms, see a pediatric neurologist immediately, and take video of the episodes!

Today I will begin to address natural treatments for epilepsy itself, and will finish the epilepsy topic in Part 3 (the post just got wayyyy too long!). Part 3 will address vitamin and mineral supplementation and chiropractic/CST, as well as some ways we have treated other problems associated with epilepsy (speech delay, behavioral issues, sleep issues, etc). 

Audrey at 16 months old during a 24 hour video EEG

There are few things scarier than watching your baby seize, yet for many dealing with TSC, this is one of the first symptoms that presents itself, often in the form of infantile spasms which are notoriously hard to treat and brain damaging. This is also where I began my search for natural treatments for TSC. Even those who don't consider themselves "hippie" "crunchy/granola" "natural"or "alternative" like myself, often find themselves seeking out alternative treatments in epilepsy because quite frankly, western medicine isn't doing that good of a job at it. One third of those with epilepsy have medically refractory epilepsy--epilepsy that cannot be controlled with prescription anti-epileptic medication (AED). Of the two thirds that do find seizure relief from prescription drugs, the side effects are often hard to tolerate. 

Just a small sampling of the side effects our daughter has experienced from various AED's or combinations of them (most of these are acknowledged by the FDA/drug companies. These are just the side effects we've personally dealt with, though the list of common side effects in general would be far, far longer): immune suppression, extreme weight gain, extreme appetite suppression, recurrent ear infections, insomnia, extreme irritability, inhibiting her body's ability to sweat leading to bloody heat rash and overheating, vomiting, permanent peripheral vision loss, low muscle tone, speech delay, developmental delay/inhibiting cognitive ability, and drug rash.

Thankfully we have been able to keep many of the side effects at bay through natural treatment, and others have found seizure relief through natural treatment alone. There are many different types of natural treatment for epilepsy, but as stated before I will only address those we have personal experience with. For a more thorough explanation of the many and various options for natural epilepsy treatment, I recommend the book Complementary and Alternative Therapies For Epilepsy. The book is very expensive but I recommend it because 1) i have read it cover to cover and learned a LOT from it, and 2) It is edited by Dr Orrin Devinsky, director of the Comprehensive Epilepsy Center at NYU and one of the neurologists at NYU's TSC Clinic. He is one of the top neurologists in his field and comes highly recommended by friends who have taken their children to him. I should also add that though I have not read it, it seems that the editors of the aforementioned book have come out with a similar (cheaper) book...I do not know if it is the same book/newer edition, or a new work altogether but because it is half the price and edited by the same people, it may be worth checking out first. I recommended the first book simply because i have read it and can vouch for it. Now, on to treatments...


In a society where there is a "pill for every ill", this may be perhaps the most difficult treatment to administer, but I absolutely believe that the proper diet can *cure* epilepsy in many people, and reduce seizure load in most others. 

The ketogenic diet is the most widely accepted and studied diet treatment for epilepsy, and arguably the most extreme. Usually the diet is first started in the hospital by a dietician/nutritionist trained in the ketogenic diet. It is, essentially, controlled starvation. Since ancient times, fasting was used as a means of treating epilepsy, as it was noted that when the patient fasted, seizures subsided. However, a person eventually must eat. The ketogenic diet drastically limits carbohydrates, contains the bare minimum amount of protein and water, and has large amounts of fat. This causes the body to burn fat for energy instead of glucose (sugar), which produces ketone bodies. It is believed that an elevated level of ketones in the blood (ketosis) leads to seizure prevention. The ketogenic diet is primarily used with small children, though there is some success with adults, too. Because of how difficult it is to administer (every bite of food must be weighed/measured/journaled...every calorie counted), it is usually used in cases of severe epilepsy where drugs fail. 

We have never used the ketogenic diet with Audrey. I do know it works. There are many parents who swear by it. But, I wanted to try other avenues first, I felt the diet was too extreme and unhealthy, and after researching I believe it is not just the ketone bodies associated with this diet that prevent epilepsy; it is only one piece of the puzzle.

Recent studies have shown that less severe forms of a low-carb diet, such as a modified Atkins diet or Specific Carbohydrate Diet (SCD) can be as successful at preventing seizures as the ketogenic diet is. However these diets are more easily administered and do not require a hospital stay or doctor supervision. (Though if you do start one of these diets, I would still let your doctor know.)

The diet we have had the most success with, and what makes the most sense to me, is the GAPS Diet (Gut and Psychology Syndrome Diet). It was created by a doctor who adapted the Specific Carbohydrate Diet. She realized that the health of the intestines and our digestive tract is directly connected to one's overall neurological health. I have friends that have cured their children's autism with this diet, I have cured my son's Sensory Processing Disorder (he does not have TSC) with this diet, and this diet reduced our daughter's seizure load and helped her mood. I highly recommend getting the book and reading it, even if you choose not to do this diet at this time, because of the understanding you will glean from of it of how diet impacts our brain functioning and immunity. If you choose to do the diet, this E-book was very helpful to me on how to implement the diet (gives a 30 day menu and how to introduce the diet to picky children/toddlers), as getting started is the hardest part.

There are a few similarities between all of these diets, including the ketogenic diet, that I wanted to address--components of all of these that have shown to reduce seizure load.

1) They are all low-carb. This really is essential. The body does not need the amount of carbohydrates that we've been led to believe are essential for proper health, and the *type* of carbohydrate is also important. At the simplest level, sugar "hypes" up the brain...any mother of a small child after Halloween can attest to that fact. With epilepsy, the goal is to calm the brain down, not speed it up. Secondly, a low-carb diet will necessarily be largely gluten-free. Modern wheat has been so genetically modified and hybridized that it hardly resembles the wheat that our grandparents and great grandparents ate. It is no longer a healthy food. For anyone. This article explains very well what has happened to modern American wheat, and why it is bad for you--even "organic whole wheat"...because the problem is not just in its processing or the chemicals used on it, but in the very breeding of the plant. With regard to epilepsy the important thing to note is that modern wheat has a much higher level of gluten in it than ancient wheat did, or even non-Monsanto wheat in other parts of the world. Wheat from Italy, for instance, contains 10% gluten whereas ANY you will get here contains 60% gluten (even organic).  Gluten is a protein found in grains that is mostly composed of glutamic acid, an excitory neurotransmitter. It hypes the brain up, which for most neurobehavioral disorders and epilepsy, is a *bad* thing. Even the prescription drug Sabril, which is so effective at treating infantile spasms when other drugs fail, works by increasing GABA (an inhibitory neurotransmitter) which has the opposite effect of glutamic acid. The key to many of these treatments is finding the proper balance between excitory and inhibitory neurotransmitters. The last important note about a low-carb diet is that it will help to restore proper balance in the gut. Bad bacteria and candida (yeast) feed off of sugar. They then produce toxins that attack the brain. On the flip side, good bacteria (which are destroyed by vaccines, prescription drugs, and antibiotics, among other things) produce neurotransmitters (like seratonin) that help the brain stay on an even keel.

2) They are all relatively high in fat. We have been taught to believe fat is bad, that fat causes high cholesterol, heart disease, etc. This simply is not true. The truth is that too much cholesterol in your blood stream can lead to atherosclerosis and heart attack, but it is not the eating of fat that leads to it. Cholesterol is needed for the proper functioning of the body (and brain). Cholesterol acts to heal broken cells and a band-aid of sorts. The cells and tissues become broken when inflammation attacks them. Cholesterol travels to where it is needed. Inflammation occurs for a number of reasons. One of the causes of chronic inflammation in the body is a diet too high in refined carbohydrates. This article explains in more detail how this works. Basically, too much cholesterol in the blood is a symptom of another problem (inflammation). It is not the problem itself. Interestingly enough, inflammation leads to increased seizure load. It is why ACTH (a steroid that reduces inflammation) is one of the two primary treatments for infantile spasms. Further, there are many fatty acids that are needed for proper brain functioning. The brain is primarily made up of fat, and without a healthy amount of fat--even natural saturated fats--the brain cannot work properly. Part of the GAPS diet described above involves eating lots of vegetables that are cooked in palm or coconut oil, which are high in saturated fat (avoid *hydrogenated* "frankenfats" though). We cook primarily with coconut oil. Coconut oil also contains lauric and caprylic acids which have strong antifungal properties, helpful in fighting candida (yeast) overgrowth which can affect seizure frequency. There are more benefits to coconut oil I will mention later.

So, to reiterate, diet is one of the best ways at controlling epilepsy for numerous reasons. You want to increase healthy (natural) fats and decrease carbs, especially refined carbs and wheat. In general it will also be beneficial to eat foods that are high in antioxidants (fruits and veggies), as seizures (AND antiepileptic drugs, for that matter) cause oxidative stress to the brain which inhibits cognitive function. I'll address this in more detail in the "supplements" section.


There is a fair amount of overlap between diet and herbs, since herbs are plants and essentially "food". For instance, many cultures the world over use turmeric in their cooking every single day. Still, it is used medicinally as well. For the purposes of this article, I will consider herbs to be plant material that is used solely as medicine. 

Throughout history people have used herbs to treat epilepsy and other neurological disorders. Most of these herbs have a mild to moderate sedative effect. Some also have an anti-inflammatory effect. Here is a list of herbs that have been used to treat epilepsy:
  • Valerian Root
  • Passionflower
  • Chamomile (milder effect than the 2 listed above)
  • Lavender
  • Linden flowers
  • Scullcap
  • Kava
  • Marijuana*
*Several states allow for the medicinal use of marijuana, but the law is tricky since it is still federally prohibited, and each state has different regulations. We've not used it with Audrey primarily out of fear of the government stepping in and doing something ridiculous like taking her away from us, but I believe the evidence is overwhelming as to the medicinal benefits of marijuana. And the argument of it "making you high" is a silly one when people are talking about intractible epilepsy, since there are many FDA approved pharmaceutical AED's that have a very strong negative cognitive effect. When my daughter first started clonazepam, for instance, she was so stoned from it she could not stand on her own two feet without falling over, for three days. Clonazepam is also more addictive than marijuana.
Because Audrey has been on so many prescription anti-epileptic drugs, I have been leery to use herbs for fear of interaction. For instance, valerian is used to treat epilepsy, but in conjunction with Rx AED's, the sedative effect could be far stronger than desired. It is similar to how patients are warned not to take alcohol while on prescription epilepsy medication. Lavender and chamomile have a milder action on the CNS than valerian, passionflower and linden flowers, for example, so I have given Audrey chamomile tea, and we use lavender in nearly everything. I am planning to grow a medicinal herb garden this year, and valerian and passionflower are on my list of plants I will add to my garden, but that is because i am *hoping* to be able to get Audrey off of Sabril after her brain surgery, and then continue to use natural treatments as a preventative. 

There are other herbs used to treat epilepsy than the ones I listed; those are just the ones I've read the most about. As mentioned in the first part of this series, please also be careful using any herbs if you are taking any drugs that have blood thinning properties. Many of the most healing plants also have mild blood thinning properties. 

Herbs are natural and have fewer unwanted side effects than prescription drugs, but they ARE strong, can be dangerous if not used properly (if you are pregnant or nursing be very careful that none of the herbs you are using are contraindicated...some herbs that are fine for the general population can cause miscarriage in pregnant women), and can interact with prescription drugs, so use them with caution.

Before I go on to essential oils, a note about turmeric. In the first part of this series I wrote about the anti-tumor properties of turmeric's active ingredient, curcumin. I also wanted to mention here that turmeric has been studied in India and was found to have such strong antioxidant properties that it reduced the negative cognitive side effects of certain anti-epileptic drugs, improving learning and memory. Since it is also highly anti-inflammatory, it could theoretically help with epilepsy itself by reducing inflammation in the brain.  Other studies have been conducted that show this to be true.


I wrote more in the previous post about how essential oils work, so I will simply list the essential oils that can help with epilepsy, and the ones that absolutely should NOT be used for any reason if you have epilepsy. We regularly use lavender and frankincense essential oil; I was using clary sage but ran out. I need to buy more!

  • Clary Sage
  • Lavender
  • Chamomile
  • Frankincense
  • Bergamot (if you put bergamot on your skin and it hits sunlight, it becomes phototoxic, so be sure to cover up any skin that is treated with this oil if you go outside)

  • Rosemary
  • Fennel
  • Sage
  • Hyssop
  • Nutmeg
  • Thuja
  •  Spike Lavender (not to be confused with Lavender)
  • Camphor
  • Tansy
  • Wormwood
I also wanted to mention that essential oils are *highly concentrated* and from all the research I have done, I have not found anything that states that the HERBS rosemary, fennel, and sage will cause seizures. You would probably have to eat a ridiculously large amount of the herb for it to have the same effect as the essential oil, so here i am referring to those herbs' essential oils, not the whole herbs themselves. (Someone please comment if you have any evidence to the contrary.)

Hopefully some of this information is helpful to you. I look forward to writing part 3, since we have had the most success with vitamin and mineral supplementation and chiropractic/craniosacral therapy. The results were pretty impressive!

Until then, Blessings!

Saturday, December 1, 2012

My latest DIY adventures

If you read my last post on natural treatments for TSC, I do intend to continue that series soon; still trying to collect all my information and have time to write it all down. :-)

But, in the meantime I wanted to share my latest creations. With cold and flu season upon us, I made a batch of elderberry syrup, as it is far cheaper to buy your own than to buy Sambucol from the health food store. I used the recipe found at Frugally Sustainable. It tastes pretty good too! I didn't include echinacea, as some recipes do, since the kids will be using it primarily and it seems there is some debate as to the safety of using echinacea with very small children. Since I've not researched it enough to feel safe using it regularly, I left it out. The honey I used in the recipe was raw, but not local. Since i'm not using it for allergy treatment, I didn't mind that too much.

My other creation is a face cream made from beeswax, red clover and calendula-infused olive oil, water, and lavender and frankincense essential oil. I will probably talk about this one again in the TSC treatments series, since it is for my little one with TSC. Red clover has been shown to have antitumor properties and has been shown to shrink fibromas through blocking angiogenesis. Calendula is soothing and healing to the skin. And, red clover does not smell nearly as strong as turmeric or frankincense which have similar antitumor properties. I'm still in the experiment phase but i am hoping to see her angiofibromas (red bumpy vascular tumors on the face associated with Tuberous Sclerosis) shrink as we use this cream. I plan to take before/during/after photos and post them later. I am just glad the cream actually came together, because my first try was a total flop. Creating creams or emulsifying oil and water (such as when making mayonnaise) is a tricky process and is really easy to screw it up. But, this time it worked, and I am so excited! After i made the cream I added in a few drops of lavender essential oil and frankincense essential oil.

If interested in making your own facial creams, here are two tutorials with slightly different processes.

Herbal Cream Recipe
Fabulous Face Cream or Lotion

To make my cream, first I made the infused oil. In the future I would probably use coconut or jojoba oil or a combination of the two, because I'm not super fond of the olive oil smell for a face cream. There are a few ways to make an infused oil. It seems the most common and best way is to use the same method as when making sun tea: put bulk herbs in a large jar, cover the herbs with oil to the top, screw on the lid, and set it in the sun. And wait. Some say wait two weeks; others say six weeks. I suppose it depends on time of year and the amount of sun you get. Then strain out the herbs. Considering the time of year, my oil wasn't getting very warm outside, so i used this method, which is faster, yet still doesn't get the oil too hot like the stove would. Once my oil was ready, i warmed two cups of the oil in a double boiler with 2 oz of beeswax until all the beeswax was melted. I then poured the oil-wax mixture into the food processor and let it cool five minutes. I then turned on the food processor and slowly and steadily added about 3/4 cup of room temperature water to the oil-wax mixture while the processor was running. Once it looks like everything is incorporated and it looks like a lotion, stop (don't process it too long). I then used a spoon to mix in a few drops of lavender and frankincense essential oil.

I got my herbs from a local store, Herbally Grounded. You can also buy bulk herbs and all the other supplies you would need to make the cream or the syrup at Mountain Rose Herbs.

I will write more when we've had the chance to use the cream and the elderberry syrup and see how they work!