Friday, April 4, 2014

blogger issues

 

I’m having issues with blogger renewing my domain registration for happybeingtrevy.com. This is extremely frustrating.

 

Soooooo…

 

If I’m suddenly missing here…you will be able to find me at…

 

http://happybeingtrevy.wordpress.com/

 

Word Press is where all the cool kids blog anyway. Right?

 

Ugh.

 

…danielle

Tuesday, April 1, 2014

maybe it’s time to explore Part III

 

He grabbed my hand and begged me to “come watch” his color,cut,paste ABA lesson. He’s so adorable that it was impossible to say no. Also, it was a great photo op.

 

 

I wanted to give you a picture of where he’s at functionally today. That clip shows you Trevor at his best! He’s happy and willing to work hard. Last year around this time he was SO sick. SO SO SO sick. I vividly remember telling Jonathan that he looked as bad as he did after his hemi. And that was bad. Not only was he physically sick, though, he was emotionally unhealthy too. His behaviors were through the roof. Especially at home. It was like he used up every ounce of happy energy he had at school. When he came home he was just completely undone. I kid you not…last year it was not uncommon to have chairs and/or other heavy items thrown with vehemence at any one who dared ask something of him. He gave his sister black eyes twice over the summer. I wish I could say it was unintentional but when someone takes aim & slugs you in the face with a whiffle ball bat…

 

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Not to make excuses but…

 

Cranky brain = cranky kid

 

All the red boxes on the image above represent days with seizure activity that I actually tracked. The reality is…we were seeing clusters of seizures daily. I just lacked the emotional energy to track them all.

 

We felt like we were back to life before our Nightmare-Miracle.

 

*****

 

Things improved as we weaned Dilantin. Almost over night we began seeing less clustering. Did you know that overdosing on meds can be a seizure trigger? Yep.

 

His dizzy spells also seemed to disappear. He had one nasty spell over the summer. We blamed ourselves for that, though. Toby’s All Star team had a big game and rather than one of us stay behind we decided to bring Trevor with us. He actually enjoyed himself. But the sun was hot. He missed his nap. And it all caught up to him in the form of a leg crumbling, eyes bulging, stomach hurting, scare the you know what out of mom & dad complex partial seizure. We were headed to the ER when he came out of it.

 

*****

 

I think that was when I seriously began thinking about more natural…holistic…treatment options.

 

My dream treatment would be Cortical Integrative Therapy. The program is located here in RI. But last summer they were not Medicaid approved and a 12 week program would cost us $12K (at least). We all say we would do anything to save our kids. And we try. But sometimes…  Well sometimes there moments when passion & faith meets acceptance. 

 

Though I did just leave a message this week asking what their Medicaid status is.

 

Other things that had caught my attention were Coconut Oil…Mozart…Omegas…

 

You know. All the stuff the cool Paleo moms are pinning.

 

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The very first natural change I made (on the advice of a integrated medicine physician) was to replace low fat milk with whole milk for our whole household. Fats are neuro protectants. It’s healthy for Trevy…and the rest of us. Jonathan was totally on board with that one! He’s a milk man.

Also, whole milk is MSG free.

 

*****

 

Then I bumped into The Mozart Effect.

So I downloaded Mozart K448 from iTunes and started playing it during Trevor’s daily nap. I mean, seriously?! How easy is it to listen to Mozart a handful of minutes every day? I think every neurologist should recommend this for their patients! Even if it doesn’t reduce seizure activity…it’s beautiful & peaceful & soothing. All of which reduces stress. Less stress has a positive effect on seizures and everyone in the home’s mental health.

I love hearing Mozart floating down the stairs while he’s napping. It makes me feel cultured and smart.

Also, I am convinced this is benefiting him. We started the Mozart in November and his mood has progressively improved over the last few months. As well as his seizures. Right now, we’re only seeing a few each week. Mostly, short absence or complex partials. Of course, like everything, it could all be coincidental. But I’m keeping the Mozart forever. And I am curious to see the results of his next EEG (if we ever schedule one!) to see if there are any changes while Mozart is filling the room.

*****

 

Once you start down the slippery slope of holistic hippie dippie ideas…it doesn’t take long before you begin to be curious about essential oils.

I bought Vetiver first. It’s been known to help children with ADHD. I mix it with coconut oil and try to apply it to the bottoms of his feet daily. I focus specifically on his toes. Especially big toes.

 

(click image for printable chart)

 

Trevor was also gifted a bottle of doTERRA Frankincense. doTERRA oils are certified pure therapeutic grade. If indicated…they are safe for consumption even. I do not sell doTERRA and in no way benefit if anyone chooses to use it. I’m only sharing with you what we’re doing. And I feel safe with Trevor ingesting doTERRA products. I’ve been giving him one drop of Frank in applesauce daily for the last week-ish. It does have a bitter flavor but he’s been taking bitter meds his whole life. He sucks it right down for me!

Are the oils helping?

To be honest…I’m still on the fence regarding Trevor. But I did have a fatty cyst on my back shrink after I started using the oils. Soooooo…my hippie dippie dar is on high alert! ::wink::

 

*****

Then there are the other healthy fats. Omegas & Coconut Oils & DHAs.

All that jazz.

I have a friend who insists supplements just give you expensive pee. The skeptic in me (because I have not fully gone over the hippie side) does agree it’s best if he’s getting most of these nutrients through food rather than supplements. But when you survive on chicken nuggets and goldfish…sometimes a hippie mommy’s gotta do what a hippie mommy’s gotta do.

Like I said on FaceBook recently…

I’ve been known to buy V8 Splash and call it a day!

 

I’m hit or miss with getting his Omegas in him. I found Coromega…which has a yummy orange sherbet flavor. But I haven’t been faithful with it. I suppose that suggests that I haven’t really bought in? Or just that I’m exhausted most of the time and pick & choose where to spend my energy.

 

I also add a teaspoon of coconut oil every morning that I can convince him to eat a bowl of oatmeal. It’s the only way I can “hide” it from him. I’m more excited about coconut oil than I am the Omegas.

 

I try to get as many brain healthy fats into him daily as possible.

 

*****

Last up…

Holy Basil.

If you clicked that link than you’ll understand why I have a bottle of Holy Basil sitting in my cabinet right now. I bought it before Trevor’s tonsillectomy (which btw…was another form of alternative treatment). I’ve just been hesitant to start because it’s kinda “wild west”. That’s how a Seizure Mommy friend of mine describes Medical Marijuana-ville! And Holy Basil has even less data! In fact, at our last appointment with Dr. Integrated Medicine, he said he’d look up dosing for me. I laughed it off and told him there isn’t much info out there. He rolled his eyes and grabbed his heavy weight medical reference book. He poured over the pages for several minutes before grabbing another book. And another. And another. Also, referencing his laptop. Finally he turned to me and said, “You’re right. There’s not much out there.” Which made me good-naturedly laugh. The thing is, I happen to be personally connected with some of those so-called anecdotal stories of success with this ancient herb. Anecdotal smanecdotal. When you know the people involved. And when those people you know are seeing major seizure & developmental improvement. Well then, your heart doesn’t care if the naysayers call it anecdotal! So there the bottle sits. Tucked on the shelf with his FDA approved doctor prescribed meds and my hippie dippie extras. Waiting for me to finally make the move.

 

And I will…

 

Unless we go really hippie and try cannabis first!

 

*****

Trevor’s Current Med Schedule (including supplements)

Morning

7.5 mls Trileptal

.75 mgs Tenex

1tsp. Coconut Oil

Afternoon

Mozart K488 10+ minutes

.75 mgs Tenex

1 drop Frankincense

1000 units Vitamin D

1 package Coromega

Evening

10 mls Trileptal

10 mgs Onfi

100 mgs B-6

 

…danielle

 

**Please know I am not offering medical advice. I am just a mom. I am only sharing what we’re doing with our son today. Tomorrow may bring something new. Decisions to pursue non-traditional treatments are intensely personal. Please do your own homework. It is always a good idea to consult your trusted physician about your child’s treatment plan. And, of course, follow that force in your heart that keeps your searching & hopeful. My heart is that it will lead you the right choices for your family!**

Tuesday, March 25, 2014

purple day

 

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Wear purple tomorrow in support of Trevy and his seizure fighter friends!