Monday, July 15, 2013

Health of 'The Bigs'

The past few months have been a crazy crash course on the health of our Bigs (Lou and Roo).

As we are poking our heads out from the storm, I am feeling more confident, more educated and a whole bit more stoked about our wellness future.

We are about to embark down another path for Miss Middle, but with our new gained confidence and knowledge: BRING IT ON!

Let's start with Lou.

Holy God.
This story is just plain rad.

I'm going to cut out a bit of details, as the mini drama could host its own blog post, but the jist is that the seizures she was having, was just the tip of the ice berg.
We came to find out she had a congenital heart defect (she'll grow out of), her layers of neurological damage was more significant that we originally thought AND she is allergic to eggs!

As the pros started to tally up all of the diagnoses and it was just...too much.
blah blah blah.

When the talks of more medications to bandaid these issues came about, we decided to invest (heavily) in our pediatric naturopathic doctor we started with a few months prior.

We needed to have someone SEE QUINNY first and see the labels as symptoms- not as her core.

Dr. Sarah McCallister (

I'll provide more details about our holistic approach to her healing on another post, but with the addition of certain supplements (suntheanine, serophos, vitamin D, + digestive enzymes, tranquility (gaba glutamate), and the extraction of eggs (while continuing to be gluten/casein free, preservative/dye free, mainly organic and limited refined sugars) the cloud of labels is slowly, but surely, finding a new mountain to pour over.
We are getting more Quinny and less behaviors, each and every day.

After day three of taking her supplements, I have only seen one seizure!
In the past ten days, Quinny has learned to RIDE A BIKE, ZIP A FREAKING ZIPPER, and BUCKLE HER SAFETY BELT!
You guys!

For the past two years, these are things that she has wanted to do, but the anxiety and damaged neurological highway stemming from right to left brain has made it almost impossible for her to do such.

And then BAM!

It has only been 10 days since we have really gotten into the healing groove- I'm sure we'll have some total crap days down the road...but that is typical, right? A couple crap days sprinkled into a grouping of typical emotional and physical developmental sound days- what more could a Mama hope for?

We're healing some bods over here on Olive St.

And our sweet, hilarious, cheeky, oh-so-snuggly Carter Roo:

(could you just eat her??)

When she was 6 months old, she was diagnosed with asthma and eczema. She was on four steroid nebulizer breathing treatments a day, and a whole lotta steroid creams for her mangled skin.
Then around one years old, her food allergies began (wheat, dairy, soy, eggs, and peanuts).
She's had chronic diarrhea for over a year now (which has stalled her potty using abilities).
She's been a fussy hot mess for about a year and a half.
Iron levels fluctuating from extreme low to low low.
Her ability to regulate body temperature has been steadily declining over the past 6 months.
And they recently found a higher level than normal, calcium level in her blood.

A. no wonder she is a cranky hot mess most days- our sweet girl doesn't feel well!
B. What the hell is going on?

It was finally the blood calcium levels that got the doctor's attention.
Our bodies work really hard to regulate these calcium levels as too little can be dangerous and too high of numbers can be dangerous.

There are a few channels they are traveling down to figure out what has stopped working effectively in her body to de-regualte the calcium levels- most of the reasons are a bit scary and a lot overwhelming. BUT we feel like this is the beginning of figuring this little lass' slow decline out.

Her allergist is waiting for the pediatric endocrinologist to conduct all of his tests before he makes a firm diagnosis on her over heating issue- but he is thinking she could be allergic to the Sun's UV Rays.
Yes. You heard that right.
Carter (might be...but probably is) allergic to the damn SUN.

The past month, her face, eyes and neck would turn BRIGHT red, feel hot hot hot, and swell (and sometimes get hives) when she would be out in the sun for more than 10 minutes (between the hours of 10a and 4pm). Once I got her inside, gave her some benedryl and a cold bath, her flaming hot head would cool down and calm down.

Dr. Brown (her amazing allergist) says this is a rare disorder, but the symptoms all fit the bill.
He said the UV rays trigger the histamines to react the same way her other allergies trigger a histamine reaction.

We (Dr. Brown and I) decided that until we figure out the other stuff, we are going to hold off on going down the Sun Allergy road.
For now, she has to take Zyrtec every morning, wear sunscreen all the time, wear a hat in the sun and limit the time spent in the sun from 10a-4p every damn day.

I'm going to keep my brain in that space until later.
Keep her safe from anaphylactic shock (from the DAMN SUN) until we know more and about more stuff.
OH, and Carter is going to see our pediatric naturopathic doctor soon.

It is also worth noting what a few of Carter's doctors reminded us: that Carter and Crew are some kind of a miracle. My 11th chromosome mutation is so significant that these babies should have not made it past 8 weeks of life. And that because Carter carries more of my genetic info. than Crew, she has the potential to be more susceptible to the same and more mutations than I.
Ironically, some of the more lame reasons for an increased blood calcium level, have been tied to conditions set forth from mutations on the 11th chromosome.

Silver lining you ask?
We are SO fortunate to have bitchin' health insurance from my husband's amazing job!
We have some of the radest docs around, helping us to complete these babe's health puzzle.
And Lastly and MOST important...we HAVE these kiddos.
These beautiful, wonderful, loving, curious, empathetic, kind, generous kiddos.

1 comment:

  1. Whoa Jill! This makes *me* want to write a thank you note to your naturopathic doctor! You are one rad mama. I can't imagine anyone else taking this on with such an incredible let's-do-this attitude. You are wonderfully wonderful and I am in awe!