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Wednesday, August 27, 2014

Why I Won’t Do the Ice Bucket Challenge

Given the exponentially growing trend of ice-bucket challenge videos popping up, I’m sure many will disagree with me on this, but if called upon I will not do the ice-bucket challenge.

It's been quite a phenomenon and I appreciate the awareness this has brought and I’m sure those with ALS appreciate the support. But what does awareness accomplish and what do the funds support? I personally don’t know anyone with ALS - probably because a very small percentage of the world has it. There are many diseases and disorders afflicting a growing number of our population, some more debilitating or deadly than others. Despite that I do not support fund raising for organizations such as Susan G. Komen, The American Cancer Society, Livestrong, The Heart Association, or The ALS Association. 

You might ask, “How is that possible? How can you be so selfish? Don’t you support anything?” Part of my reasoning for not supporting these causes were eloquently captured in this article. Even more so, I believe that the declining health of our population is the outcome of a few controllable factors manifesting itself in different forms of disease and disorders. I think it can all be traced back to our food, our pharmaceuticals, and our environment. I believe that if you want to make real change and help fight diseases – all diseases – we need to support changes that protect not only ourselves but our children and generations to come. That being said, I don't want to put my money toward research conducted by pharmaceutical companies to create more drugs that only cover up the problem, sometimes creating even more damage, all while profiting from it. Billions of dollars go into cancer research not only from the aforementioned organizations but also from our government yet little progress has been made. While alternative, natural therapies that have been shown to be very effective in fighting cancer such as Gerson Therapy do exist the American Cancer Society doesn't support their practice (perhaps because there isn't much profit in a natural cure??).

With information and recommendations changing everyday, not to mention ongoing controversies of various health topics such as vaccines, it is clear that scientists don't know everything. It is now coming to light that saturated fats are not the culprit of heart disease and are in fact essential to our health. I think we'll see a lot coming out in the world of epigenetics that will connect our diet and toxic load to varying conditions seen in our children. There are studies that indicate our grandparent’s exposure to toxins could be affecting our DNA. New articles are coming out everyday (examples A, B, and C) about the importance of our gut bacteria and how they directly affect our immune system response (think eczema, allergies, arthritis, diabetes, thyroid disorders, MS, and ALS).  Our diets, medications, and sterile environments are destroying these essential microbes. And I predict we'll be hearing a lot more about toxins such heavy metals, chemicals, fluoride, and pesticides being linked to cancer, autism, Alzheimer's, etc (see this article).

My daughter has a genetic disorder known as Kabuki Syndrome. Piggybacking on the ice-bucket challenge concept, there is now a singing challenge to raise awareness for Kabuki Syndrome. I love watching the videos of these beautiful kids and their loving families singing their songs. I'm battling internally with the choice to not participate in something that hits so close to home. But again, what does bringing awareness to one condition accomplish? While I personally connect with those families also affected by Kabuki Syndrome and I want to support them as part of my Kabuki Family, I don’t feel that bringing awareness to this one rare syndrome is going garner the type of change I'd like to see.

While raising awareness for one single disease such as ALS may seem like a worthy cause, what are you really accomplishing? But what if we could raise awareness for all diseases and disorders as a collective whole. One against big agriculture. One against the use of pesticides. One against exposure to toxins. One for a change in our food system. One for supporting local farmers. One for regaining control of our health. One collective whole thinking freely and standing up for our rights. 

So no, I won’t be dumping ice on my head in support of ALS awareness. Nor will I don a pink ribbon for breast cancer awareness. You won’t even find me singing a song for Kabuki Syndrome awareness. What you will find me doing is spending exorbitant amounts of money on good, high-quality food (that is more expensive because it is not subsidized by the government like Big-Ag). I will vote against Monsanto and GMO foods. I will avoid drugs and vaccines. I will buy water until they stop adding fluoride. I will put my time, money, energy into things I believe in not because I’m being pressured with guilt by social media outlets but because I believe it will bring true health to me and my family and hopefully bring about real change in our global health.

But maybe you don't agree with me. So I challenge you, don’t support causes just because someone called you out on Facebook. Think for yourself and support whatever cause you connect with.


I CHALLENGE YOU TO THINK FOR YOURSELF  AND 
PUT YOUR MONEY WHERE YOUR HEART IS.

Tuesday, August 26, 2014

Charli's Story - Part 2

**DISCLAIMER** 

After writing "Charli's Story, Part 1" I received so many wonderful and supportive comments all with a similar message: "Charli is so lucky to have such an amazing mom." While I absolutely appreciate these kind words they made me realize I may need to clarify a couple of things.

One, my intentions of writing this blog and especially Charli's Story was never to portray myself as some extraordinary mom. The purpose of this entire blog is to share my story in hopes of helping other mothers in the same way other blogs have helped me. It was the personal stories that gave me the knowledge and the strength to take Charli's health into my own hands. To empower us as parents. I hope to contribute to the many success stories of GAPS healing children.

Second, I'm really not any sort of an extraordinary mom. I'm just a mom. Any other mom (well most any other mom) given the same set of circumstances, resources, knowledge, and beliefs would do the same. Believe me, if I could have followed the typical course with Charli, I would have. By all means, she was eating organic baby food out of a pouch and organic corn puffs, well on her way to organic macaroni and cheese and chicken nuggets. We, as mothers, love our children. We are constantly striving to do what we believe is best for them. I'm no different. That's it. Back to Charli's Story now.

*****

Charli is 10 months old and we now have a diagnosis of Kabuki Syndrome. What now? In this part I'm going to cover the medical side of the transpiring events. Part 3 will cover the non-medical events.

So, we read the packet of information provided by the geneticist. It didn't provide much insight other than pointing out some physical features we hadn't noticed and a couple of other common conditions for Kabuki Kids. Because of Charli's already apparent conditions as well as other common conditions with Kabuki we were given several referrals:

  • Gastroenterology/Dietetics
  • Cardiology
  • Ear, Nose and Throat
  • Radiology (for spinal x-rays and an ultrasound of her sacral dimple)
  • Immunoglobulin studies
  • Neurology (possible seizures)
  • Annual hearing and eye exams
  • Developmental evaluations

By the time we saw the GI and dietitian, Charli was reliant on Miralax and getting worse. I was slowly starting to implement GAPS. The GI recommended Miralax with an initial "cleanout" followed by a daily dosage of 2 teaspoons for 6 months repeating "cleanouts" as necessary. They said Miralax isn't absorbed by the body and is completely safe AT ANY AMOUNT as needed. The dietitian was open to GAPS but expressed concern that the diet may lack in sufficient B vitamins, vitamins A, D and E, calcium, and fiber. She also recommended we find a GAPS practitioner to help monitor and guide us if we do decide to implement the GAPS diet.

The cardiology appointment revealed an Atrial Septal Defect (ASD) and Tricuspid Valve Stenosis. We would follow up again in 3 months (and then again in 6 months and again in 12 moths). She may require surgery when she is older with the procedure for the ASD being non-invasive and pretty standard. If she requires surgery for the Tricuspid Valve Stenosis it would be more invasive and would likely need additional surgeries as she grows.

I asked for the referral for Ear, Nose and Throat because Charli's palate was clearly abnormal. It's very narrow and high arched. We always said it looked like a snake's mouth - seriously! They looked at her palate and said it was abnormal but not cleft. They advised us to monitor her speech and if we have concerns to consider following up with a speech pathologist for VPI (velopharyngeal insufficiency) evaluation. They also recommended routine hearing and vision assessments. As I write this today her palate and other oral defects are weighing heavily on me. I'm quite certain she has a lip tie and a tongue tie which I'd like to have corrected. This is something that is likely affecting her speech but could also be affecting her eating and later could affect her oral health and teeth alignment (lip ties cause gaps in the front teeth). I'm also pretty certain that at some point she'll need a spacer or something to fix her high palate.

The ultrasound and spinal x-rays took us for a real twist. While her spine and sacral dimple seemed to be fine, a couple of other things showed up. She had a broken collar bone (say what?!) and hip dysplasia. Her collar bone, we later figured out, was a congenital condition where the bone never fused together.It's called congenital pseudarthrosis of the clavical. It doesn't seem to affect her in any way, so we're leaving it be. For her hips we saw another specialist, a genetic orthopedist. They took more x-rays a few months after the first set and determined that the dyspasia wasn't closing up and she may need surgery later down the road, probably around school age - you know, about the time she  might need heart surgery. Maybe we can do both at the same time and get a discount! I kid. I kid.

Her broken collar bone

She got blood tests for immunoglobulin studies. They came up slightly abnormal but they said it was pretty common. After several attempts to schedule an appointment with a specialist I gave up and decided GAPS was my answer for that anyway. No need for more needle poking and trauma.

We did a couple of MRI's to see if we could determine a cause for her nystagmus. This was a TRAUMATIC endeavor because she had to be put under general anesthesia which meant she had to be given an IV. When she was hospitalized for RSV they did her IV in her head cause they couldn't get it in anywhere else. For the MRI they at least were able to avoid doing it in her head and after much prodding managed to get it in her hand. Of course she was hysterical the entire time. The MRI didn't reveal anything that clearly indicated a reason for her nystagmus but they did find a small mass, likely a Rathke's Cleft Cyst. We would return a year later to check on the mass. That time the IV went in her neck (awesome!) and brought the good news that the mass hadn't changed. Yay! One victory!

We saw the neurologist once again for an EEG to check for seizures which are common for Kabuki kids. It also seemed like Charli was experiencing Petit Mal Seizures. She would stare off into space and be non-responsive for about 15 seconds and when she would "come back" she'd get kind of upset. She also would have these crazy, full body tremors or shivers. Her EEG Came back negative although I continued to see what I still consider to be seizures well into doing GAPS. Through GAPS I'd learn that seizures are the body's way of dealing with toxins in the brain. Once significant healing had occurred her seizures stopped. Every so often I will think that she has one. It's certainly possible as her body continues to clear out the toxins built up in her body.

She had her hearing checked and it came back normal. She had a follow up with the opthomologist with no changes. Yay for a few more victories!

Once we were well into our GAPS journey we visited a naturopath that was GAPS certified. She ordered some lab tests and made several recommendations which I will cover in another post.

After all of these appointments we now have a good picture of Charli's health and conditions. We will continue to keep an eye on specific concerns like her heart conditions, dysplasia, brain mass, vision, and hearing. However, I'm trying to keep these visits at a minimum as they cause much stress and anxiety for Charli that seem to have a lasting effect. Eventually I hope to help her overcome these anxieties with different modalities like craniosacral therapy and NUCCA. Until then, I'm trying to limit the exposure to stressors and my focus will continue to be dietary intervention with GAPS.


To be continued....