Wednesday, November 14, 2007

Battleplan - Phase I

Today was my big day of making my case to Ethan’s local pediatrician and it couldn’t have gone more smoothly. I needed her signature on the test requisition forms for the labs I want to have done on Ethan, so I thought I might have to really make a case and do some convincing. I approached it like a business meeting and drew an outline for the points that I wanted to cover and the strategies to employ in case of resistance. She was more than open to my ideas, she was receptive and excited. I made copies for her of each test that I’d like to have done and she was eagerly reading them and thanked me for the copies. I showed her the book that I’ve been reading titled Healing the New Childhood Epidemics by Kenneth Bock, M.D., and she wrote the title and author down and said she’s very interested in learning more. I have the test kits and will send them to the lab hopefully next week, and then we’ll have to wait for 2 weeks to see what the results are. I really have no idea of what to expect from the results, but I imagine that we’ll learn something new about Ethan’s body and take the next steps towards healing.

We are using The Great Plains Laboratory, Inc. and so far I’ve been mighty impressed with their customer service. You can easily reach someone via the phone and leisurely ask your questions and get them answered. Many DAN! doctors work with this lab and they have an outstanding reputation.

Here are the 3 we’re starting with:

Organic Acid Test (not to be confused with The Electric Kool-Aid Acid Test) – This is the most comprehensive test of overall health that we could do, it’s a good starting point as it checks for vitamin and mineral deficiencies, neurotransmitter metabolites, yeast/fungal metabolites, and fatty acid abnormalities among many other things. And my favorite aspect of this test is that it just requires a morning urine sample. Easy!

Food and Inhalant Allergy Testing
This will be the most illuminating I suspect. When Ethan was in pre-op getting prepared for surgery, the nurse asked me if he had any food allergies. I replied that I thought he might have intolerance to milk and soy, but that I wasn’t sure if they were actual allergies. She asked me to describe his reactions to these foods and upon hearing my description replied, “oh honey, those are allergies”. This tests for 95 foods. Once we know the real picture, we’ll adjust his diet accordingly. I’ve been very interested in trying the gluten and casein free diet, but I think I’ll wait until we get these results to make those changes. We’ll have to go to the local hospital to get blood drawn for this one.

Metals Profiles
This is another simple test, as it requires only one strand of hair. I’m not overly concerned that Ethan might have elevated levels of metals in his body, but I have a feeling that we will be surprised by what we see. Many kids who are on the spectrum of developmental delays have impairment of the natural detoxifying process of sulfation. If that’s the case with Ethan, it’s imperative to find out and deal with the problem to avoid damaging neurological consequences.

So there it is, in a nutshell. I may be coming across as an anxiety ridden and worried mother, and maybe that’s partially true. But it’s important for me to find ways to treat Ethan’s symptoms in a holistic manner and get at the root causes of his behaviors and diagnosis. Too many of the people that have worked with him are specialists and it’s a little myopic for me to say the least. They are great at what they do, but I’m tired of treating symptoms with drugs like prevacid, which Ethan takes every day and has for 1.5 years. It’s time to get to the bottom of the root causes and treat them carefully and as naturally as possible. Then I think we’ll see some significant improvement.

Thank you Sandra for pointing me in the right direction.


flutter said...

I am just here with you and waiting to see how he rules the world.

Anonymous said...

All moms feel your pain ... our babies are so important to us, even when they're well grown and have their own homes and children.
But to have the problems you folks have with your dear little boy is more painful than I can fathom. And yet, as you say, you're blessed.
Ethan is magic.

from Ethan's grandma (could you guess?)

Jennifer said...

I want your pediatrician. What state do you live in again?? She sounds wonderful!
I admire all the work and energy you've put into this plan...and am following along, anxious to see the results! :)

Kellan said...

You did good! I'm so glad it went well with the doctor! He is so adorable, Hetha. Those glasses and his sweet little face and beautiful blond hair - he is a doll!! Take care.

Eileen said...

You did real good Heather!! I am so glad it went well with the Pediatrician, she sounds wonderful. You clearly went in there prepared and she was open to learning new things too. That is GREAT.
Ethan looks so cute in the latest picture.He is such a sweetheart!! Every picture, those eyes, smile and that beautiful hair. I'm with your grandma, Ethan is magic!

slouching mom said...

i will be eager to hear what you find out from these tests -- fascinating stuff. i'm so glad his doctor is on board.

Laurie said...

You are such a great mom to Ethan and don't ever doubt that! Only you know what is best for your child. Wow, you have a great pediatrician. . .

Hang in there! Just take one day at a time, one step at a time. Ethan looks so cute in his glasses!

Kyla said...

I'm really interested to see what you find out! I hope it is illuminating. If so, I'm totally jumping on board. Next year, of course. ;)

Tom's Mum said...

Hi, he is so cute in the shades!! I have found the same thing - if I go to a meeting with a business approach we get more out of it. It just seems a bit unatural for me when it's about my child but whatever it takes aye? I think you are doing a great job as you have so much going on with Ethan at the moment - particularly with regard to him having just had surgery. I really admire you.

jen said...

you are Woman, hear you roar.

Drew's Mom said...

Amazing job! The amount of research your have done is just amazing. Ethan is a lucky little boy to have a Mom like you!

Shiloh said...

Way to go Heather! Ethan is such a beautiful little boy. I love the pic with the sunglasses. He has great hair. I love the way it seems to almost curl. You are doing a great job with him. Ethan is such a blessed little boy to have such a wonderful mom. I am a big fan of holistic healing too. I don't really like taking any medication if at all possible. Who knows, you could find that natural cures provide a greater benefit than pharmacuticals. Keep us posted! God Bless You Guys!

patti durr said...

glad ur meeting went well and u r finding proper support in your quest

in the side bio of Ethan u state:

than is our miracle guy who was born with congenital CMV. He has been profoundly deaf since birth and has continuously been developmentally delayed. He spends time with a physical therapist, occupational therapist, speech therapist, audiologist, and occasionally the G.I. doctor, developmental specialist, opthamologist, and ENT. Needless to

i notice the ommission of any contact with an ASL specialist or a Deaf individual - just wondering if u forgot to mention that or if this expertise is not considered a part of your warrior plan?

u might find it very beneficial and rewarding for Ethan to have some ASL experts and just plan ole other Deaf ASL using peers to play with

goes a long way for language development if they child has early exposure to a fully accessible language and for Deaf kids this means a visual language

clearly u r doing all u can for ur little guy

while my son is hearing, he did have many delays and i remember being on that QUEST for an ANSWER - what is he - what diagnosis can he be given so i can figure out how to do best and right by him

it turns out that he is an enigma - no one classification fits - he is a vein diagram of a compliation of many different types of uniqueness - nerve-wrecking yes if u want a clear picture of what u r dealing with but so completely HIM - it has been a blessing to have a school system that said - lets classify him as learning disabled and give him as many services as seem useful and applicable and just aim to get him up to speed then ween off the services as not needed

he is great - still quirky and cant be pigeon-holed into anyone thing

i was amazed to see some of the special ed teachers actually cry at IEP meetings - they were worried about his future because he is different - i looked across the table at them - saw their CARE for my son but also saw that it was very PATERNALISTIC and wrapped in PITY - he doesnt need PITY - he just needs a fair shake at things

i also discovered that special ed specialist often feel burdened with trying to make the child normal

that is nothing we have ever desired for our son - we love him for what and who he is - we just wanted to equip him with the optimal skills for success but we did not want to see the quirks and perks of who he is removed / exorcised from his being as they seemed to think was their duty

i wish u all the best in your quest and i hope at some point u will feel it is less of a battle and more of a journey - i imagine it is very tiring and exhausting otherwise and u r in it for the long haul

enjoy ur ethan - he is precious


p durr

Loudest Mom on the Block said...

You are so on top of everything- What a lucky little boy Ethan is to have you for a mom! I hope the tests provide you with the information you need to keep moving forward. I always feel better armed w/ facts, etc.

My thoughts are with you all-