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Wednesday 8 April 2009

Being kicked when you're down

Just to warn you now, this will be a long one... I've got a lot to get off my chest and today was a day from hell.

As you know, yesterday we met a naturopathic doctor who reviewed Ethan's history, my pregnancy, symptoms, issues, etc... He listened so intently to every detail (unlike some other people we've been trying to work with). You could see his brain churning (ok, so you couldn't actually see his brain but it was like you could see the wheels turning). His approach:
a) take a blood test for Ethan to test IgE and IgG levels of antibodies to 95 different foods,
b) get me on a hypoallergenic diet (even more restrictive than what I am on now) along with a supplement called UltraCare to help maintain proper caloric intake.
c) increase my vitamin D intake to 4,000 IU per day via Cod Liver Oil (this way, Ethan gets the DHA, too)
d) get me on Hepar Sulfuris Calcareum (a homeopathic med that helps to localize inflammation)
e) give Ethan Human Microflora Super powder (L.acidophilus, bifidobacterium bifidum & lactis as well as fructo-oligosaccharides) to help support his GI tract which is likely as inflammed as the rest of his body is externally, and lastly
f) supplement (in ADDITION to my breatfeeding) using Ultracare medical formula (http://www.metagenics.com/products/detail.asp?pid=16) which is hypoallergenic and is one of the only rice-based formulas on the market

Very good approach for starters, no? We valued what he had to say, what his concerns were and appreciated this non-invasive, immune-supporting approach. We are certainly willing to work with this.

Today, I was to meet with the allergy specialist again. The first time we visited her, she wanted Ethan on an elemental formula called Neocate whose first ingredient is corn syrup solids... we don't allow corn syrup in our home for many reasons. Just ask us for links to countless specialists and doctors who've written reports on the horrific effects of genetically modified foods and we'll gladly forward them to you. Anyways, we'd asked her if she knew if the corn source was organic or if she could at least guarantee that it was non-GMO and she seemed quite defensive and couldn't give us answers. That's fine, we called the company ourselves and are still waiting to hear back from them on this regard. Until then, we are not comfortable with Neocate being Ethan's only source of nutrition.

We still fight with him regarding the bottle (we did another seven hour stretch without nursing and hours of fighting with him... eventually, with him losing weight, I give in for fear we are going too long without feeding him).

Anyways, I wanted to bring this new formula with me today to make sure the allergy specialist didn't see anything on its ingredient list that would raise some concern. What I did NOT expect was to be attacked and judged!! I brought this with this sincerest hope we could work together on this! Am I so naive to believe that a medical doctor would have enough humility about her practice to embrace the possibility that she may NOT have all the answers? That there may be MORE than just ONE way of looking at health issues?

"Why are you ok giving Ethan this rice formula but not the Neocate?"

"The first ingredient is Corn syrup solids! And you can't tell us if it's non-GMO."

"It's a broken down by-product of corn, so that doesn't matter!"

"I don't care if it's broken down ten million times, if its SOURCE is not good, I don't want it in my son! What is in the UltraCare that you don't want Ethan to have?"

She couldn't answer that. Instead she grabs a piece of paper and says "Let me show you how sick your son is!! His allergy to casein is so off the charts that they can't even measure it! He is highly allergic to everything we've tested so far except the corn." When she asked me if we'd done the naturopath's blood test, I couldn't lie to her. I answered honestly "yes, just yesterday". She pushed her chair back and shook her head. "I TOLD YOU THAT TEST IS POINTLESS!"

I replied: "Pointless? Really? Then why has my skin cleared up from avoiding the 14 foods that I came back intolerant to? Why have thousands upon thousands of people been healed of countless health issues BECAUSE of the findings in these tests?"

She kept shaking her head at me as though I'd committed some horrific sin. And that just did it. I have been watching my son suffer and trying to educate myself BEYOND just conventional medicine so that I could be discerning in our approach... focusing on LONG-TERM effects of today's decisions, not just the moment. I have questioned every step wondering if I am headed in the right direction and have done my best to provide the best for my son. And here is this blasted woman who has no clue what it's like to walk a mile in my shoes shaking her head at me. I snapped.

I yelled "Do you seriously believe that you provide the ONLY solution to health? Have you EVER watched your own child suffer? Wouldn't you want to hear EVERYONE's potential leads so as to make sure you haven't left ANYTHING out? Shouldn't this be about FINDING the answers? How DARE you sit there and shake your head at me like that!"

And she yells "I have been trying to be respectful of your 'alternative' views"

"Respectful?? RESPECTFUL??? You sitting there pushing your seat back and shaking your head at me is RESPECTFUL? Because it feels more like judgement! We are trying to work with ALL views here."

Her response "If you would just let me deal with your son like a regular patient, I would have him fixed in a week."

"Fixed?? FIXED?? Are you telling me you would fix his symptoms of rashes or his eczema?" And once again she shook her head.

I am not looking to fix only the symptoms, I want to address the root cause! If your roof is leaking, do you think a bit of duct tape to stop the dripping is going to fix the problem? No! Shouldn't we have the same approach to our health? And why is it ok to get second and third opinions (that can all vary, I may add) from practioners but you can't get second and third opinions from different schools of thought?

Well, we walked out of there with a few prescriptions for Ethan to get his outbreak under control. We phoned our naturopath and he said "all the things she prescribed are fine short term. I would go ahead with the plan she laid out for you."

Isn't that the approach ALL practioners should have for the sake of their patients' health? Shouldn't EGO be the LAST thing involved here?

I don't think I have ever yelled at someone that I don't know before. I wanted so much to work WITH her on this but she treated us like infants and an annoyance right from the getgo, which we saw past in hopes of working together for Ethan's sake. Are we going to jump at every little thing she suggests? No! But we are going to weigh it SERIOUSLY and DECIDE which of the options available best suit our son.

It was conventional medicine that wanted to give Isabel a jujonostomy because her formula would just sit in her stomach, but it was our research that found a formula that promoted gastric emptying and the procedure was no longer necessary.

It was conventional medicine that wanted to prescribe a medication (with serious side effects) to deal with Isabel's constipation, but it was our research (and common sense) that said "let's just add prune juice to her formula"... and that's all it took.

Does conventional medicine have it's place? Absolutely! Where would we be with Isabel's epilepsy without it? And what of her asthma? Is conventional medicine the only answer? NO WAY!!! And ANYONE, whether naturopath, homeopath, osteopath, or MD who acts like they are the ONLY ones with answers are NOT your right source of knowledge.

Because if there is ANYTHING I have learned in life, it is that as the radius of knowledge increases, so does the circumference of ignorance! A dose of humility as we approach ALL things should keep us READY to hear others and to welcome challenge in hopes of walking away more enriched and more enlightened... not threatened! You should feel threatened only if you are weak in your faith.

I see a dietician tomorrow. I asked her right off the bat "what is your view on alternative medicine?" and she answered "I believe it, too, has its place in health." "So you're not going to yell at me or judge me for seeking answers from various sources when I see you tomorrow?" and the kind lady answered "not at all."

Thank God. Those are the people I want to work with because they are WILLING to work WITH us. To assume you have a 360 degree view on truth is infantile and arrogant... two things that will always keep you from choosing to have the eyes to see and the ears to hear.

So there you have my very lengthy rant on today's events. I could delve further into the specialists we have consulted with regarding alternative approaches, one of whom is an ag consultant/Medical Doctor/Osteopath who is OPEN to ALL forms of thinking. He is sought out world-wide and he has a respect (and educated understanding) for all aspects of medicine. Although clearly by his life path, you can see that he has come to believe nutrition (the body's fuel) is the root to our answers.

We don't ever ask anyone to believe what we believe, we just ask that it be respected, and not in the way of crossing your arms and shaking your head... not tolerated, but respected.

Forgive me, Lord, for losing my temper with this woman today. And forgive her for lacking a humble heart in her approach of LEARNING ALL options that should be available to the many children she cares for. Help her to see the value in humility. Help her to appreciate the many wisdoms that surround her without prejudice and may you bring peace to her heart and to mine after our interaction today. Help us, also, to appreciate the wisdom she wants to share with us. I pray this in Jesus name... Amen.

6 comments:

Anonymous said...

Dearest Rita,

I applaud your strength and your taking this allergist to task. I was very pleased to read that she'd come back to her senses and apologized. Forgiveness is the key to peace throughout this process. Good for you for being a great teacher in your time of distress.

The allergy test results are quite disconcerting... Although, I have to wonder how accurate they can be when his body is in a flight or fight hyper mode of coping with root cause(s) to its ailments... I'm so glad you're weighing in a number of educated perspectives in your decision making process.

What foods have you been found intolerant to? What are your new diet restrictions? I'll try to find some recipes that comply.

God Bless, Love & Prayers,
Diane. xo

Cindy said...

What a tough road you have all been enduring. I am glad that the specialist called you as well to make ammends.

When something isn't working, it makes sense to me that you would consider anything that could help. So even though I don't have first hand experience with natural medicine, I can definitely respect and understand why you would search for anything that may help him.

Peace and God bless!
From your cousin,

Mallory said...

Hi Rita,

It is frustrating when health care professionals are closed minded to complementary and alternative medicine. I came across your post and actually I work for Nutricia (the makers of Neocate). Just in case this helps your situation at all, I just wanted to let you know that the corn source for Neocate is non-GMO. We get that question all the time so you are definitely not alone in wanting to ensure this. Hope this helps. If you have any questions, feel free to call our Nutrition Services department at 1-800-Neocate.
Sincerely,
Mallory

Rita Vaags said...

Hey Mallory! You're the only person from Neocate to get back to us and I am amazed that it happened to be through our blog! When we asked the company, their response to us was "nobody has ever asked that question before" and they asked us to send our question & concern in email form. Is there a way to ask the company to post a non-GMO label? Lastly, we noticed that soy oil is one of the refined vegetable oils... will this still be usable for my little guy who is highly allergic to soy? Hope this message finds you!! Thanks for reaching out!!

Mallory said...

Hi Rita,

I just noticed you are located in Canada so it's possible that the Canadian reps don't get the GMO question as often there but I get it all the time here in the US (Washington DC).

The product does contain soy oil but no soy proteins, which are generally the source of a soy protein allergy. The product has over 47 clinical studies to prove its hypoallergenicity so it is very rare that a child would react to any ingredient in Neocate. As far as I know, Neocate is as hypoallergenic as they come.

Since I have been getting the GMO question so often lately, I think it would be good to specify this on the label as well as on the company website. I'm going to pass that message along. Thanks for your feedback and feel free to email me if you ever have any more questions you need help with. My email address is mwest@shsna.com.

Sincerely,

Mallory

Anonymous said...

Hmmm. Rita, I'm concerned about the confidentiality clause on the medical report you posted...

Love,
Mom